# Women with blood clotting disorders



## SweetTeach (Oct 5, 2003)

This is a place for those of us with clotting disorders to discuss issues, questions and concerns related to clotting disorders. We can also share information and experiences- both mainstream and alternative in relation to cdo's.

Pregnant and non-pregnant women are welcome to participate.

Should we start with intros? There seem to be quite a few of us floating around MDC these days...


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## whateverdidiwants (Jan 2, 2003)

What a fabulous idea!

I was diagnosed with APA in 2001, after having 3 first-trimester mcs. (to be really technical, I have anticardiolipin antibody syndrome, IgG components) In order to have my dd, I had to give myself heparin and lovenox injections twice a day from 3 dpo to 6 wk pp and get biweekly u/s to check for IUGR. It's one of the main reasons I don't want to have any more biological children - it was just too stressful. (I had a cerclage on top of that, so you can imagine how fun that was!)

The biggest way APA affects my life:
- can't use hormonal bc or get an IUD (doc said it would be too risky)
-supposed to take a baby aspirin a day to prevent clots
-can't start back my martial arts training (I stopped before I was diagnosed) because my hematologist said it was too risky with how often I would get bruised and banged up
-supposed to inject blood thinners before any flight longer than 3 hours


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## LisaG (Feb 23, 2003)

Hi ladies







,

Don't know if I really belong here or not, and no offense, but I'm hoping not







. I just had about 14 vials of blood drawn today, so we'll see what that shows. My reg ob/gyn did test me for Factor V and the anticardiolipin antibodies. All 3 antibodies and the Factor V came back negative. My new ob/gyn (maternal fetal specialist) is testing for:
protein S & C
antithrombin III
homocysteine
Methlenetetrahydrofolate reductase (yeah, say that one 10 times fast







)
prothrombin 20210a mutation
anticardiolipin antibody
lupus anticoagulant

I found this fabulous research article on the Factor V yahoo group files called Recurrent Miscarriage Syndrome and Infertility Due to Blood Coagulation Protein/Platelet Defects: A Review and Update. It's from 2005 so it's nice that it's current. I think it's interesting that 29% of women in the study tested positive for antiphospholipid subgroups but NO anticardiolipin antibodies or lupus anticoagulant. The second most common defect that was found was sticky platelet syndrome (SPS).

I waiting to hear back from my doc's office because I don't think SPS was one of the tests he ordered, and he definitely didn't order the antiphospholipid subgroups. I hate being a PITA, but after 2 m/c let's leave no stone unturned within reason.

As far as intros - my medical history (I swear I'm healthy, honest!), hashimoto's thyroiditis, uterine surgery to remove large fibroids and correct a significant bicornuate uterus, 2 m/c, and all the tests, docs and more tests that goes along with all of that. I swear I've seen more doc in the past 2 years than I've seen in my entire life. Sigh. I'm very glad to have found out about this potential piece of the puzzle - or at least have the information to check it off the list. I'm really pleased with the maternal/fetal specialist my ob/gyn referred me too - especially since I'm not planning on continuing care with him.

Lisa


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## Satori (Jan 30, 2003)

Thanks for pointing out this thread ST!

They don't know what the heck is wrong with me but they are assuming I have some kinda clotting issue that is not showing up because I had a loss at 5 months, HELLP syndrome and severe pre-e with dd, 3 more m/c, the last being this summer at 12 weeks after seeing a normal baby at 8 weeks with a HB. Tests showed the baby was normal. I have a long family history of clotting issues so this time around they are putting me on Lovenox injections. I tried injecting myself yesterday but couldn't bring myself to do it so I have a Dr's appt to have the nurse show me how to do it today. I'm pretty sure I know how but that 1st shot is scaring the crap outta me. I'm 4 weeks today and have been on baby aspirin since about a week before I O'd.


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## whateverdidiwants (Jan 2, 2003)

For the lovenox, the things I found helpful were 1)icing the area for 10 minutes before and 10 minutes after the shot 2)making sure to get the air bubble out of the syringe.

Good luck!


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## Satori (Jan 30, 2003)

I was told the leave the bubble in because it "sealed" the drug in. I've never seen needles like this but I don't even see a bubble and I did look for it.


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## whateverdidiwants (Jan 2, 2003)

What dosage are you using? I've used 40s and 80s and they both had bubbles, you just have to hold the needle pointing up and then thump the barrel a few times.

Both the pharmacist and my hematologist said to push out the bubble, just be careful not to squirt out any of the liquid. It makes the injection MUCH easier because there's no resistance (less painful, too,,imo, because you're not pushing an air bubble into your skin).


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## orangefoot (Oct 8, 2004)

Hello hello

I have Protein S Deficiency. I was diagnosed between ds1 and ds2 back in 1996 when even fewer people knew about it. I have since had my dd (02/03)and an ankle to groin DVT (08/03). I inherited PSD from my dad and he died this year from complications from a clot in his bowel so although I have had three children without any problems some days I feel like PSD is a horrible thing.

Dh and I will be ttc at the end of this year and it will be my first pregnancy with Lovenox or Fragmin, previously I was only treated prophylactically post partum with Fragmin and Warfarin (Coumadin to you).

On the bubble in the syringe; it it designed to form an air seal at the end of the injection. Tip the syringe needle down the air will rise to the back of the liquid then you inject the liquid and the 'bubble' is at the end of the injection which should prevent bleeding from the injection site.

I hope to hear more from you all over the next few months and look forward to hearing more NFP perspectives instead of the very conservative/aggressive management that I read on the mainstream Yahoo preg/clotting boards.

Best wishes to you all
Rachel


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## USAmma (Nov 29, 2001)

Hi, I'm moving this to Health and Healing per our rules in Finding Your Tribe that if it fits into an existing forum, it should go there.


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## Satori (Jan 30, 2003)

I gave myself my injection! It took several false stabs before I actually did it though but what was odd is it wasn't a conscious thing! All the sudden I was seeing myself do it and thinking "OH CRAP!" and before I knew it the needle was in! That part doesn't hurt but putting the Lovexon doesn't feel to good, burns like heck! and why the heck does it burn even more after your done?


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## orangefoot (Oct 8, 2004)

Congratulations!









I'm not sure exactly why it stings like mad for a while after but I imagine it is because the liquid is not far under your skin and there isn't much room for it so you feel irritation through your skin nerve endings?????

Resist the temptation to rub at it like mad to ease the stinging,do some relaxation breathing instead. Rubbing irritates the area even more and increases bruising. On my first round of Heparin in the old days they encouraged me to rub, but more recently after my DVT the specialist nurses told me why not to and I did have much less bruising, well smaller ones at least.

I have had lots of injections of the stuff but never actually injected myself which is one of the reasons I was holding off ttc.

I take my hat off to you.







Are you ready to do it again tomorrow? :LOL


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## Satori (Jan 30, 2003)

Quote:


Originally Posted by *orangefoot*
Congratulations!









I have had lots of injections of the stuff but never actually injected myself which is one of the reasons I was holding off ttc.

I take my hat off to you.







Are you ready to do it again tomorrow? :LOL

I don't have much choice if I want a chance at a live baby, its pretty good incentive







The things we do for our kids







Becasue of the cost my insurance only covers 3 days at a time so I need to pick up more today but hopefully the TAR went through and i'll be able to pick up 30 days worth.


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## SweetTeach (Oct 5, 2003)

Hey everyone and welcome,
I'm going to try and keep up with this thread, but I have a newborn (3 weeks old) here so it's kind of hard...doesn't help when the thread gets moved...lol. I wonder if others will be able to find it here.

Lisa, I'm glad you're getting some answers finally. I commented on your blog recently (username: mamanaz)









orangefoot, I'm sorry to hear about your dad. Thank goodness you have three healthy children!

whatever:

Quote:

In order to have my dd, I had to give myself heparin and lovenox injections twice a day from 3 dpo to 6 wk pp and get biweekly u/s to check for IUGR. It's one of the main reasons I don't want to have any more biological children - it was just too stressful.
I was diagnosed during my second pg so I started the shots at 17 weeks and have 3 more weeks to go. I was monitored heavily for IUGR as well and was induced at 37 weeks because my uric acid/creatinin levels were rising and signalling a change in the function of the placenta. Amazingly, I have been sitting here for the past 2 weeks trying to think about when I can get my dh to agree to try for another. LOL. I think I am quickly forgetting how annoying it is to be pg with a cdo. Who'da thunk it?

Congrats Satori. I think the first shot is really the hardest. My dh nearly passed out watching me do it the first time and it was pretty surreal but then we both became old pros at it. I literally stab myself, inject and go. I am really looking forward to only doing this for three more weeks.

As for my intro- I have Factor II mutation (heterozygous). I have been asymptomatic until the stillbirth of my first son @ 37 weeks in 12/02. In that pg, although everything looked great on the surface, I had IUGR and sudden onset pre-e. Once I'm done with the lovenox pp, I plan to eat/drink ginger, garlic and purple grape juice daily since they are natural blood thinners, in addition to the usual protocols (exercise, no bcp's, etc).


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## orangefoot (Oct 8, 2004)

ST, I'm glad to hear you are all ok. Thank you for your thoughts.

Whateverdidiwants Why do your docs not recommend an IUD? I only ask because I am on my second non-hormonal copper T and my haemo said this would be fine - and preferable to an unexpected pregnancy from his point of view.

I have yet to meet my specialist OB but hope to in the next few weekls before we start ttc, but from what I understand I will just do the shots and have my liver function checked through bloods. Do you think that over there docs are more fixated with scanning and 'knowing' everything generally which then goes into overdrive when you have some kind of 'abnormality' (for want of a better word)?

I've been reading about Nattokinase and some other natural anti platelet things. Have any of you any experience with those? If I ever get another clot I will be on Warfarin permanently so I'm looking into other possibilities before that happens.

Rachel


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## sarah9774 (Feb 19, 2005)

T- I am glad you started this thread.. Just a short intro for others.. I lost my first son pre-diagnosis at 40 weeks he was 8lbs 22 inches.. My bp went sky high and my Dr. recommended that I get the testing done.. I also have the prothrombin factor II mutation.. 1 copy.. I am 8 months out form loosing Luke and trying to loose a little more weight before TTC.. but we will be trying November!!


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## HoosierDiaperinMama (Sep 23, 2003)

Hi there,

ST suggested I join this thread, so here I am.

I can't say I have a clotting disorder currently, but as a result of a placental abruption w/my 2nd pregnancy, I developed DIC. Disseminated Intravascular Coagulation compromises your body's ability to clot blood upon severe trauma. It is usually fatal and the only reason I survived (besides the grace of God) is b/c I'm 25 and healthy. Unfortunately, my Reagan did not survive and was born still on 8/29/05.









I received 30 units of blood and blood products (fresh frozen plasma and cryoprecipitate) over 2 surgeries and 3 days. I followed up w/the hematologist about 3 weeks ago and my blood was back to normal.

I am very interested in getting other testing (especially genetic testing) before we conceive again. I want to know if there's an underlying problem that is going to cause me problems again in the future. This thread is very informative (you guys know your stuff!!) and I'm going to keep a close eye on it for any info I can get! Thanks, ST!


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## NoHiddenFees (Mar 15, 2002)

Hi, I'm FVL hetero; DVT'd at least twice, with a probable misdiagnosed pulmonary embolism in addition. First DVT was long before any genetic tests had been developed; I was smoking and on the pill at the time. Quit both right after. Years later, ran the gamut of tests pre-conception and got the diagnosis. No fertility or other problems. Did prophylactic doses of Lovenox during pregnancy with DD1, clotted postpartum (DVT) probably because my OB took me off too soon. Chose to continue with warfarin even after the DVT was dissolved. DD2 was conceived accidentally while on coumadin but found out soon enough everything was OK. This time I did therapeutic doses of Lovenox and started warfarin post partum. Still taking warfarin.

Other than the Lovenox, I chose the low intervention route for both kids and used an OB only (no hemo, no perinatal OB). DD1 was born at 42 weeks by c-section after 24 hours of hard labour. DD2 was born just shy of 40 weeks by scheduled c-section (we agreed to try for a VBAC should labour start earlier). Because both pregancies went smoothly with obviously large babies, I was very hesitant to induce at 38 weeks as is typically the case. I refused Vit. K for both girls in case they have the FVL mutation (didn't want them to have it with my hormones running around in their bodies)... though I probably would have refused it anyway.


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## whateverdidiwants (Jan 2, 2003)

Quote:


Originally Posted by *orangefoot*
Whateverdidiwants Why do your docs not recommend an IUD? I only ask because I am on my second non-hormonal copper T and my haemo said this would be fine - and preferable to an unexpected pregnancy from his point of view.

My clotting factors are very very high and my hematologist thought it would be too much of a risk for me. It may be overreacting on his part, but I'd rather be safe than sorry. Besides, IUDs freak me out since I was conceived while my mother had one in.


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## orangefoot (Oct 8, 2004)

I have a few friends also conceived that way! I am happy with moine and haven't had any problems; I think they are better now than they were when we were young, but with your experience I might think more than twice about it!

Diaperin mama What an awful thing to have happened, I am so sorry. You may have looked at this page already but section 5 has a loooong list of all the things you can be tested for to see if you have an underlying condition which caused your situation. The documents produced by eMedecine for PSD are reliable so I think this one is also likely to be so.

What did the haemo say? If he was just happy that your bloods were back to normal and that was it - harrass him for a load of tests and brace yourself for armfuls of blood to be taken.

Sarah, I am sorry to hear of your little one, and wish you luck ttc.

Re nohiddenfees, for anyone else weighing up vit K or no vit K there is an interesting thread here started by ST a while ago.

Rachel


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## TripMom (Aug 26, 2005)

HELLP Syndrome survivor here - -anyone else deal with this?


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## Satori (Jan 30, 2003)

Trip, I had it in 2000

For everyone else, how did you dispose of the Lovenox syringes? I don't have a sharps container so for now I'm just triggering that safety cap thing and hiding them from dd and hoping home health brings me one.


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## Satori (Jan 30, 2003)

ok, just did my shot and i've noticed something odd, on my left side I don't feel much, very little burning and by tomorrow you can't tell I injected. My right side however, burns like a







and feels sore for hours and you can tell where I injected still 3 days later because of brusing. Any ideas on this?


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## HoosierDiaperinMama (Sep 23, 2003)

Quote:


Originally Posted by *orangefoot*
Diaperin mama What an awful thing to have happened, I am so sorry. You may have looked at this page already but section 5 has a loooong list of all the things you can be tested for to see if you have an underlying condition which caused your situation. The documents produced by eMedecine for PSD are reliable so I think this one is also likely to be so.

Wow. My head is spinning just reading through that. I'd like to print it out and read it more thoroughly (and when I'm not so tired) just so I can process it. Thank you for the link though.

Quote:


Originally Posted by *orangefoot*
What did the haemo say? If he was just happy that your bloods were back to normal and that was it - harrass him for a load of tests and brace yourself for armfuls of blood to be taken.

I had other questions for him so he spent a lot of time w/me, but honestly, I followed up with him 3 weeks post-partum and I wasn't all that prepared w/questions and such...not like I am now. My blood was back to normal and I had general questions but nothing in depth. I'd be interested to schedule a consult w/him now that my mind has cleared a little bit and I have additional questions.


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## whateverdidiwants (Jan 2, 2003)

Satori - you might have injected closer to a capillary or vein on your right side than you did on your left. I used arnica gel on my injection sites to help with pain and bruising - it did wonders.

As for the used needles, I had a sharps container that my doc got for me. It came with prepaid postage and a box to send it in when it was full.


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## orangefoot (Oct 8, 2004)

Hi Amy

It really wasn't my intention to freak you out, sorry. At first all these kind of things are hard to take in so it is a good idea to speak to the haemo again now that you have some different questions.

It is always useful to tell your specialists what you know then they can fiil you in where you don't have any info or provide clarification on points that seem fuzzy. This is also easier for him or her than wondering what to tell you and what to leave out, so don't think that you are being pushy; the more you know the better equipped you are to deal with what may come.

Rachel


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## aswbarry (Jan 31, 2005)

Hello all,
I know a few of you from P&BL and am so glad that ST started this thread. I am heterozygous for MTHFR and discovered this after my daughter was stillborn at 39 weeks in November. I am now 12 weeks pregnant and doing lovenox injections daily. I think this thread will be a great support!


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## WinterBaby (Oct 24, 2002)

Re: the lovenox syringes
I use to stick them in a lidded coffee can, and being generally irresponsible about such things, just chucked it in the trash. But - my sister would tote them back to the doctor's office on visits and they would dispose of them there for her.


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## LisaG (Feb 23, 2003)

Quote:


Originally Posted by *ST*
Lisa, I'm glad you're getting some answers finally. I commented on your blog recently (username: mamanaz)










Thanks ST - I appreciated your comment. I was so glad to hear of the safe arrival of Na'im.

Just curious everyone - how long did it take for you to get your blood test results? I know they're not a typical overnight sensation.

Thanks!

Lisa


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## whateverdidiwants (Jan 2, 2003)

Mine took nearly a month to come back, iirc.


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## shannon0218 (Oct 10, 2003)

I have APA and am slightly deficient in protein S.
Like Amy I just had an incidence of DIC following a d&c after a miscarriage. My head is still spinning and I'm still pretty weak. I will be seeing a hemo soon. My last dose of heparin was almost 48hrs before my d&c so they don't think it had anything to do with my bleeding out, but still, I think I'm far too afraid to attempt another pregnancy.

Oh and you are supposed to LEAVE the bubble in on Lovenox and Fragmin. Inject it at the end (as was described)


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## RedWine (Sep 26, 2003)

Late intro, just now discovering this forum!

I have the MTHFR mutation in both alleles. This means I am predisposed to clots, cancer, and general freaky cardiovascular issues. I developed a large clot when I was pregnant with dd1, and I was on Lovenox during my entire pregnancy (and 6 weeks postpartum) with dd2.

As for the stinging issue with Lovenox -- I found that if I pushed the syringe in verrryyyy slowly, the stinging lessened tremendously. The first shot was definitely the hardest for me -- after the first few times, it was no big deal.

Now, one doc says I should be on coumadin forever, another says that as long as I substantially up my folate, Vit B12 and B6, I should be fine. (The MTHFR mutation makes it difficult for me to metabolize these vitamins, but if I greatly increase my intake, I should be okay.)

If anyone wants to discuss anything about Lovenox, etc., and for some reason doesn't want to post to the general public, feel free to pm me.


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## Satori (Jan 30, 2003)

I have yet another question!

It took me almost 30 min to do my shot tonight, why? because I had trouble finding a site! My skin is pretty white on my tummy and with the pregnancy the veins and arteries are becoming very apparent. What happens if I accidentally inject into a vein? That air bubble makes me nervous


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## RedWine (Sep 26, 2003)

Th air bubble made me nervous, too -- but look at it this way: Lovenox is dispensed for amateur, at-home injection on a very common basis. If there were any big risk for someone to muck it up and kill themselves accidentally, the folks who make Lovenox could be sued big-time. So the risk is probably very minimal.

That's what I used to think when feeling nervous, it made me feel a bit better.

As for injection site, try this: put your right hand over your belly button, center of palm resting on center of navel. For me, it was easiest to inject in the areas where my fingers covered the skin. Outside of that range are too many nerves, my skin was too sensitive, etc. Just don't inject within an inch of the navel itself (as I'm sure you already know).

HTH

(as I'm sure you already know).


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## Delta (Oct 22, 2002)

I have prothrombin 20210 mutation (also known as Factor II). It was found during my first pregnancy, halfway through, once an ultrasound revealed our son wasn't growing properly. We later lost him at 26 weeks. We started Fragmin (similar to Lovenox) injections as soon as we found the IUGR but it was too late.









With my 2nd son I did Fragmin twice a day from 6 weeks on. He measured small the entire second half of my pregnancy. By the 38th week I knew something was really wrong when he was moving a lot less. So we went to the hospital and he was delivered via emergency csection (I had to be put completely under because I couldn't have an epidural b/c the Fragmin was still in my system) at 4 pounds. He was clearly IUGR. My placenta was really small and somewhat calcified. It was a huge scare. However we were able to go home after 5 days in the NICU and he is now a happy and healthy 27 pound, 21 month old. Should I get pregnant again, I will take asprin along with the shots as we think I have an antibody issue as well.


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## Delta (Oct 22, 2002)

Quote:

It's one of the main reasons I don't want to have any more biological children - it was just too stressful.
So glad to know I'm not the only one with these sentiments. I know others who have to deal with these same issues, but they all agree they will get pregnant again because it is so worth it. I feel like an ogre to feel the way I do - but man it is just so freaking stressful. Going into those biweekly ultrasounds was so nervewracking it was like torture. We probably will have another, but I am so not looking forward to those 9 months. Ugh.


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## SweetTeach (Oct 5, 2003)

Hey everyone,
Angela, congratulations on your new pregnancy! How exciting









Welcome RedWine.

Lisa- my results came back in a little over a week. My peri had my blood drawn and sent to a special lab (not Quest).

Delta, I'm sorry for the loss of your firstborn. We have the same disorder. I'm sorry that it affected your second pregnancy too, but thank goodness your dc is okay!

Shannon- welcome and









Satori, I've injected into a vein before and the only thing that happened is that I got a big hematoma (bruise) that took forever to go away.

As for me, I am 4 weeks post partum and I've decided I'm done with the lovenox shots. For whatever reason, my belly is extremely sensitive now and I can't inject myself anymore. I'm mobile again, so I'm going to just keep active and eat my ginger and garlic daily. I think I'll be fine.

I have 2 boxes of lovenox left if anyone is interested in them (Satori- are you the only one on lovenox right now?). You can have them for shipping only if you like- just pm me.


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## Satori (Jan 30, 2003)

I swear you ladies must be sick of my questions by now. I have a new one









Tonight when I did my shot when I pulled out the needle blood actually shot out and there was actually blood in the needle when I forced the safety cover. Did I hit a vein?


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## shannon0218 (Oct 10, 2003)

Yep, you hit a vein or a vessel, no big deal but you'll probably have a big bruise there. Just to make you feel better--Lovenox, Fragmin and Heparin can all be given IV (which is how I'm taking it since now they're concerned I've got a minor PE after going into DIC)


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## Satori (Jan 30, 2003)

Quote:


Originally Posted by *shannon0218*
Yep, you hit a vein or a vessel, no big deal but you'll probably have a big bruise there. Just to make you feel better--Lovenox, Fragmin and Heparin can all be given IV (which is how I'm taking it since now they're concerned I've got a minor PE after going into DIC)

Actually that does make me feel better







I was worried about it getting into my system so quickly when its supposed to be absorbed slowly. Thank you


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## shannon0218 (Oct 10, 2003)

Yeah, the absorbing slowly is mainly to avoid burning in the vein. They gave it to me pretty much straight up in emerg when my heartrate was 178 and I had chest pain. They diluted it for the other treatments (and I was thankfull for that







) Let me tell you, 5cc of it going straight into an arm vein--very ouchie!!


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## shannon0218 (Oct 10, 2003)

Oh and you'd have to be deadly accurate for it to have all actually gone in the vein, you very likely went through the vein, or even just nicked it coming out.


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## Satori (Jan 30, 2003)

Quote:


Originally Posted by *shannon0218*
Oh and you'd have to be deadly accurate for it to have all actually gone in the vein, you very likely went through the vein, or even just nicked it coming out.


or have really bad aim... lol, I have yet to hit the spot i'm trying to hit!


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## shannon0218 (Oct 10, 2003)

You'll be an old pro in no time


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## LisaG (Feb 23, 2003)

I had my HSG (hysterosalpingogram) this morning to check for uterine adhesions. All's clear for that, good fallopian tube spillover. The shape's a little funky from my bicornuate reconstruction/fibroid surgery, but much better than my "before" HSG. Doc doesn't think it played a role in my losses. I *really* like my doc. This was only the 2nd time meeting and first time for an "hands on" procedures. He did a great job and I felt very comfortable (as much as can be managed in that situation).

I did test positive for 2 recessive MTHFR genes but my homocysteine levels are well within normal range so it's hard to say - apparently the gene plus high or low? homocysteine levels creates the "magical" combination. So we still don't know if that's the cause for my losses, BUT it will change things from here on out. Also my IgM levels were a little low/high (can't remember which way) but still within normal range. With the MTHFR he prefers to have me take high doses of B6, B12, and Folic Acid and then the baby aspirin for the IgM and not do the heparin injections. Says it's treating the problem upstream to use the B vitamins vs. downstream with the heparin. Any thoughts?

I'm off to do what I'm learning to do best these days - gather more info


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## RedWine (Sep 26, 2003)

Satori, I also have some Lovenox left over. Pm me, you can also have mine for shipping. If it's legal to ship??


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## orangefoot (Oct 8, 2004)

Bumping this sleepy thread with this about natural anti coagulants posted by Satori in Pregnancy.

http://www.mothering.com/discussions...61#post4046961


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## orangefoot (Oct 8, 2004)

I hope everyone is well. Satori are you stopping the shots? Have you spoken to anyone about it?

I went to my GP last week to sort out a referral to the Professor at the hospital who deals with high risk pregnancies for a pre conception appointment. She was unwilling to make the referral without sight of a letter blah blah and she was also unwilling to remove my IUD 'in case I got pregnant unexpectedly'







:

So I told her I would speak to my haemo directly and see what he had to say about a new pregnancy and he referred me to the Prof himself that day and I should get an appointment in the next week or so.

As I had him on the phone I asked him about any problems he could forsee with the birth as I will be injecting and he said that the only thing I must not do is have an epidural straight after having a shot of heparin but as I have had 3 labours without pain relief he didn't think that would be a problem! So I said "Do I need to be in hospital then?" and he said "No"

So I am hoping for a spontaneous labour and a homebirth yay!

Now I just need to get the practice nurse to remove my IUD and wait for the appointment with the Prof and see what Dh and I have to do to get him to support us in that decision.

Rachel


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## bobandjess99 (Aug 1, 2005)

Hi There.....Does Von Willebrands qualify me for this list? It's fairly mild, and I choose not to "treat" it....it doesn't sound nearly as serious as what you ladies have....but it *is* a blood clotting disorder!
need sleep..but will check back here, this thread is interesting....


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## William's Mom (Oct 6, 2004)

My son and I both have severe Von Willebrand 2M (which is a very rare subset of VWD).

We both also have low Factor VIII.

I bled almost my entire pregnancy, and delivered 5 weeks early due in part to placental deterioration. I also nearly bled to death afterwards... (long story)

Right now I have factor concentrate (Humate-P) in my fridge that I have to carry, along with infusion supplies, for my son when we travel.

I wanted to respond, so that I could subscribe to this thread, and meet others with clotting disorders as well.


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## SweetTeach (Oct 5, 2003)

Hi everyone- I found this which I thought might be of interest:
Factor V study

Does anyone have thoughts about good birth control options for those of us w/ cdo's?


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## whateverdidiwants (Jan 2, 2003)

I'm pretty much limited to condoms according to my docs.


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## HoosierDiaperinMama (Sep 23, 2003)

Quote:


Originally Posted by *ST*
Hi everyone- I found this which I thought might be of interest:
Factor V study

Thank you for that article, ST.


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## orangefoot (Oct 8, 2004)

That's interesting, my haemo has also published something about the selective 'advantages' of thrombophilias.

Here it is http://www.jr2.ox.ac.uk/bandolier/ba...s/keeling.html

On the other Q, I used to take the pill (pre diagnosis) but since then have had 2 copper IUDs with no hormones without any problems. I've also been reading about them as I have just had mine removed this week to ttc









I found this about IUD action http://www.fhi.org/en/RH/Pubs/factsheets/mechact.htm

I'm not usually in to factsheets as such but this one is well referenced.


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## butterfly_mom (Sep 8, 2005)

I have antiphospholipid antibodies syndrome. This was found out after my daughter was stillborn. There weren't any signs of this when I was pregnant with my 4yr old son. So if a woman has blood clots in her menstrual period, is that a sign? I had clots in my period, mentioned it but was told if they were the size of a plum then that would cause concern. For my next pregnancy I would take baby aspirin, possibly heparin, and I would have non-stress tests.

-liz


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## orangefoot (Oct 8, 2004)

Well here I am about 8 weeks pregnant and about to start on my third box of Fragmin.

Everything is ok apart from horrid nausea but I haven't actually been sick yet - unlike my last pregnancy with dd.

For 2 days now I've had trouble actually getting the needle to pierce my skin. Yesterday I had to try three different spots to get it to go in. Its like it bounced off my skin instead of going in. What gives?

I've been injecting in my very stretch marky lower belly and have not had any bruises, just blood blisters every now and then. Due to the 'stiff' skin I braved one a bit higher up and it went in ok and hasn't bruised. Yay! BUt who knows if that wil last!

I hope everyone is well
Rachel


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## whimsy (Aug 6, 2004)

I am **** positive for MTHFR. We found it before my last pregnancy. Amazingly, I didn't have any problems (related to clotting anyway) with any of my pregnancies. The specialists I saw were pretty surprised by that. I did do a scheduled c/s because of the risk of loss late in pregnancy.

My twin daughters are also **** MTHFR positive (which just floored their ped)


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## AppleOrangePear (Apr 17, 2004)

I have never experienced any major trauma.

DS was a natural no med birth however supposibly they said it was taking a while for me to stop bleeding after delivery ( who knows though if they were rushed etc) DH did say though there was lots of blood.

year later i had a dental scaling and the same tooth that had lots of decay and needed a filling the next day started bleeding pretty bad ( no other teeth though bled) when it would try to clot they were the size of chicken livers then it finally dislodged after seeing homeopath in the late evening.....

This thrs im getting all 4 wisdom teeth removed and praying i will not have a repeat like i did with the scaling.....

ive had blood tests recently for a pulsing feeling in my leg i was having... though after seeing herbalist and chickweed tea it went away ( who knows what it was ) and blood tests CBC , a heart one and another all came back normal

anyone have weird clotting liek that ever?


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## Satori (Jan 30, 2003)

Quote:


Originally Posted by *orangefoot*
For 2 days now I've had trouble actually getting the needle to pierce my skin. Yesterday I had to try three different spots to get it to go in. Its like it bounced off my skin instead of going in. What gives?


I had the same problem, its one of the reasons I had to stop the injections, my skin became like steel and the only way I could get it in was to slowly force it in. Nearest I could tell I was forming scar tissue very quicky at each site which was preventing further injections.


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## orangefoot (Oct 8, 2004)

Vent and whinge coming up










Ages ago I posted on this thread that I was looking forward to having somewhere outside the mainstream to chat about this stuff which is going on with me this pregnancy.

Now is the time I really need this if anyone can. I am booked for a home birth with the 'blessing' of my high risk care team. I am raising the flag there for the possibility of a normal birth and especially the additional risk of cs for those with clotting disorders. I am 100% sure that some women really do need cs and it has saved their children's lives but that doesn't mean it is necessary for everyone. I am not a crazy whacko irresponsible mother putting my child's life at risk and I'm feeling like I don't want to read that forum anymore. After unsubbing from the Yahoo group for the same intolerance of 'normal' views I'm feeling a bit alone in my 'madness'. Is there anyone out there like me with this going on or am I destined to be the one who is swimming against the flow?

Maybe I am blabbing too much and should just shut up but I don't know anyone IRL in my situation and I'm feeling unsupported. Dh is alongside me, my mw is fantastic but some of my friends don't really get any of it and I feel like I con't complain about the state of my belly or feeling sick or worrying how my leg will hold up when I get huge because they think I shouldn't have got pregnant with a FOURTH child in the first place.

Rachel


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## whimsy (Aug 6, 2004)

Rachel,

You are not crazy! Do what your spirit and body is telling you.

For me, it was a c/s. Your mileage will vary.


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## SweetTeach (Oct 5, 2003)

Hey Rachel,
Congrats on your pregnancy! How is it going? I'm sorry you didn't get many replies to your request for support. I've gone back to work and am so swamped. In fact, I should be sleeping now.

I think you need to do exactly what it is that feels right to you in your heart. It's hard when that goes against the "cold hard science" of these disorders, yk? But I personally believe that your heart knows the path you need to be on and that can be whatever/wherever you want.

I'd love to hear more about your pg and your plans for birthing. Please share!

ST


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## Arwyn (Sep 9, 2004)

Hey all! I have no clotting disorder, but my partner does. Y'all know so much about your disorders I realized I know next to nothing about DP's, which is truly freakish for me, as I'm usually a research nut. However, we found out about his cdo because of a barely-caught-in-time mesenteric vein thrombosis, so I think I was a little in shock for a while after, and was so thankful just to have him alive and whole that I just nodded and smiled at everything the blood specialist said - "hypercoagulopathy"







"warfarin daily"







"no contact sports"







"regular vitamin K"







"weekly blood tests"







. Oy! That was two years ago - I need to get off my arse and research this stuff!

Rachel, big hugs. It is tough being a natural-living "freak" when dealing with a medical disorder. I was told by my (EX) psychiatrist that he would never prescribe psychotropics of any sort to a breastfeeding mom, "because we don't know what that does to their brains, and formula is fine!"







: So although I totally am not in your shoes, I have complete sympathy for you.









ETA Oops, I was actually planning on posting a question.







Does anyone know about clotting disorders in the BABY and how that might affect pregnancy? I know most of the problems (and what y'all are having to deal with) are on the maternal side, but I appear to be safe from that. Obviously DP made it to adulthood (as did his dad, who died when he was young, many-decades-retroactively-speculatively-diagnosed from a clotting disorder), but any future youngling of ours has a decent chance of inheriting his cdos, so it does make me worry a little.


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## orangefoot (Oct 8, 2004)

Hi Arwyn

This is a quiet thread at the moment! Sorry its taken til now to reply to you.

Most genetic clotting disorders are not always passed onto children. I have Protein S Deficiency and had a 50/50 chance of inheriting it from my dad. Both my sister and I have PSD so as you can see you can be unlucky!

In turn, my children have a 50/50 chance of inheriting it too and I'm coming up to the time when my eldest (nearly 13) needs to be tested.

There are some conditions where if a mother and a father both have the same genetic fault this can be devastating for the child from birth causing Purpura Fulminans (Protein C deficiency is one which can cause this).

Generally speaking though most clotting disorders don't manifest themselves until the late teens or adulthood and even then having a dosorder doesn't mean you will get a clot. My sis is currently symptom free and neither of my grandparents had clots although one of them must have passed this gene to my dad.

WRT to your dh he needs to *regulate* his Vit K rather than have *regular* vit K. Too many leafy green veg or other souces of Vit K can upset the action of the warfarin and make is INR unstable.

Getting prompt treatment for MVT is often difficult to get so you are right to feel lucky.

I hope this helps - do ask more if you need to.
Best wishes
Rachel


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## HoosierDiaperinMama (Sep 23, 2003)

I keep forgetting to come and update my situation on this thread.

I had 15 vials of blood drawn at my high risk appt. almost a month ago. The results came back 2 weeks ago and they are not good.

I tested positive for a double homozygote mutation to the MTHFR gene (A1298C). Double homozygotes have not been reported in the human population. In other words, I am the first reported case in the world.









I also tested positive for PAI-1 (4G/5G), which in and of itself, is not related to adverse perinatal outcome. I am heterozygous for this gene. However, PAI-1 and the MTHFR gene combination have a synergistic relationship, meaning they feed off each other and now there is a greater risk of adverse perinatal outcome.








Also, there is very, very little known about this particular combination.

This explains what happened to Reagan and why I had such horrible complications after she was born.

Since there is so little known about this combination and how to treat it, my dr. has prescribed 100 mg. Lovenox twice a day until 36 weeks. My dose of this will change every 8 weeks. I have been on the Lovenox for almost 2 weeks and my belly is black and blue from the bruising.

At 36 weeks until delivery, I will start Heparin therapy. 10,000 units a day. I don't know what "units" are in this case.

Just an FYI, if your dr. prescribes Lovenox for you, check w/your insurance company to see if they cover it. I paid $30 copay for a 1 month supply. Lovenox runs almost $4,000 for a 1 month supply.







In most cases, your dr. will prescribe Heparin instead of Lovenox if your ins. co. doesn't cover Lovenox.


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## orangefoot (Oct 8, 2004)

Oh mama, what scary results. How are you feeling?

You are injecting a good amount of liquid if you're on 100mg so that in itself makes for more bruises. I am on 7500 units of Fragmin which is only 0.3ml which is not too bad. Can I offer you some tips for injecting? I've been doing it once a day now for about 12 weeks and my belly isn't looking too bad. My first was awful and sore for days, then two weeks ago I did a bad one and the bruise is only just fading.

I am pinching a good bit of loose belly skin (I have plenty after 3 pregnancies) and inject at an angle of about 45 degrees. You don't need to remove the bubble, keep it at the top and inject a little bit after all the liquid has gone in to 'seal' the needle track which helps to keep any blood from coming up and out.

It really important to keep a good grip on the syringe so that you don't jiggle it around as you press the plunger as that moves the needle in your skin and makes for more tissue trauma = bruises. I hold the syringe with my thumb and middle finger and press the plunger with my index finger. My thumb seems to be at the wrong angle to do it smoothly if I hold it the regular way.

Have you looked at the BabyCenter high risk board? There is a weekly thread for the 'Lovely Lovenox Ladies' and its very busy at the moment. Lots of mamas there have suffered losses due to clotting disorders and there are quite a few with unusual blood results too. I post there as Chickenlula.

http://bbs.babycenter.com/board/preg...lications/6675

Wishing you strength and courage
Rachel


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## HoosierDiaperinMama (Sep 23, 2003)

Thanks for the tips, Rachel.







s

I started out doing my own injections and did exactly as you suggested and then I started freaking myself out about them and I do not need the stress of worrying about whether I can or can't give myself the shot when it comes time. So, DH gives them to me. He's a paramedic so it's no big deal to him and it also helps me to relax knowing that I don't have to worry how I'm going to handle giving the next shot.


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## shannon0218 (Oct 10, 2003)

Amy, use a little arnica cream on your injection sites, that will help with the bruising. Also, once your body is used to the thinners the bruising settles down. But beware the funky looks from U/S techs--I didn't tell one and my doc called me laughing as I'd been reported as being abused because of the belly bruises!!


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## DaryLLL (Aug 12, 2002)

Hi, I'm no longer having babies. I didn't know I had Factor V Leiden until 2 yrs ago. I had my last kid 14 yrs ago and had uneventful pregnancies.

In around 1999 I went on the Pill at about age 43. I was on it for 5 yrs and then had multiple emboli after a trauma to my ankle--hit by a shopping cart. I felt OK but after 2 weeks went by I became very short of breath and congested and found out I had a big clot behind my knee and multiple clots in both lungs. Somehow I didn't die.

I was on warfarin for 7 mos. I had really heavy periods and became so anemic I was as weak as a kitten. I got real dizzy one weekend and went to the emergency room and was not very anemic, just borderline, but went in again a couple weeks later and was very anemic. My hemo took me off the warfarin at 7 mos b/c I was so anemic. She had wanted to keep me on it for 12 mos.

Between those 2 things, clots and anemia, I kind of lost a yr.

I have lowered lung capacity to this day. I had tingling and numbness in my knee area until just recently.

I didn't know 20% of the population has FVL! As the article posted above just told me. So far, we have had our oldest tested for it and she is negative. I understand the test for this blood mutation has been around since the early 90s and yet, no one tests women for it before putting them on the Pill. Having hetero FVL makes you 7x more likely to clot. The Pill also increases clotting by 7x, so multiply them together and I was a ticking time bomb. I had been on the Pill in my late teens/early 20s as well with no issues. Thank god.


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## Arwyn (Sep 9, 2004)

Thanks, orangefoot - I know it's not having irregular doses of vit K that's important. His INR has been remarkably stable the last year or so, although he's not getting tested nearly as often as he should (no insurance until the beginning of this month).

Are all of you on blood thinners or other medications full time, or some only while pregnant?


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## orangefoot (Oct 8, 2004)

I'm glad your Dh is doing well. My INR is often wacky despite controlling my diet which is a right pain in the neck.

I'm not on anti-coagulants permanently; I have done 6 weeks LMWH/warfarin post partum twice then LMWH and a year of warfarin after my DVT. I'm injecting now because I'm pregnant and you can't take warfarin in pregnancy although I'll be back on it after the birth probably for another year this time.

If I have another clot I will be on it permanently or whichever new drug is available at the time. There was a new drug called Exanta which has now been withdrawn after clinical trials but there are others in the pipeline which I hope might be available by the time I need them as warfarin does carry a risk of bleeds.

Darylll - I was on the pill too for a while and didn't get a clot. My hemo says between that, long haul flights and three children before getting a clot I've been very lucky!


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## DaryLLL (Aug 12, 2002)

Quote:


Originally Posted by *orangefoot*

Darylll - I was on the pill too for a while and didn't get a clot. My hemo says between that, long haul flights and three children before getting a clot I've been very lucky!

I guess I was lucky as well. In between the shopping cart and the ER, I flew to FLA from MA and back again in 4 days. I went to a big anniv party, my parents 50th, and danced and went up and down stairs and ran through Atlanta airport (which is huge) out of breath the whole time, thinking it was just May pollens or something.


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## babybugmama (Apr 7, 2003)

I'm subbing here. Discovered APS due to multiple m/c. I don't know much yet. I'll know more on monday when I meet with the doc.


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## neverdoingitagain (Mar 30, 2005)

Hi! I have FVL, which I didn't find out about until after 6 months of pregnancy, and developed a DVT. I had to inject myself with LMWH once a day until 4 weeks before my due date, then it was straight Heparin. My Lord, but Heparin is a pain in the butt! I had no problems with the LMWH, other than the price(which was covered as Compassionate Care, here in Alberta) I was black and blue for months after I had my dd, due to the Heparin shots







:
I was told by the specialist that took care of me that if I got pregnant again, I would have to take heparin all the way through the pregnancy, for prevention. I would also most likely get a blood clot anyway. If I didn't take the heparin, I would definately get a clot.
Now, originally, my dh and I had planned on one baby, thats it. Fast forward one baby and two years, we're throwing the idea of another baby around again.
What has been everyones experience post diagnosis with pregnancy and childbirth with FVL? I would like to have a homebirth, or at least one with a midwife, completely drug-free this time(thats if we actually decide to get pregnant again!)








Thanks is advance, I know that it will be awhile for responses, since ya'll mentioned this was a slow thread.

Darylll and Orangefoot- funny, I was on the pill too! And I smoked, but no blood clot. weird. I also had three m/c before I got pregnancy with Shekinah


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## neverdoingitagain (Mar 30, 2005)

one more thing..
Is Lovenox the same thing as Imohep? I saw a poster in the E.R for Lovenox, but it wasn't the stuff I was given. And how can you tell/find out out if your FVL is hetero or ****?
thanks!


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## smeta (Dec 15, 2001)

Hi there, just joining in here!

I had a DVT in my shoulder when I was on the pill at age 18. I reluctantly injected heparin for the last 3 months of my first pg (I did not realize the seriousness of this until recently!) and Lovenox for my 2nd pg.

My sister just found out she has both of the MTHFR mutations, so I will be going to test for that and a few others soon. In the last 9 months my family lost my father at age 54 and my cousin at age 30 from sudden heart attacks. My sister's dr. recommended all blood relatives to have clotting tests done.

I had uncomplicated pregnancies, but bleed a lot afterbirth. I too would like a homebirth (should dh give in to having another)!

Does anyone here have any experience with irregular periods? I was wondering if it could be related to clotting mutations or not. My sister was on the pill for several years and she has not had her period for almost 5 months since getting off it.


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## orangefoot (Oct 8, 2004)

Smeta

I'm so sorry to hear of the loss of your dad and cousin, my dad died just a year ago last week from a blood clotting related problem too and it shook my world more than a bit.

Neverdoingitagain

Your docs sound a bit out of date. You might get a clot if you don'tinject but the chances of getting one if you DO inject are VERY VERY VERY small. Where do docs get off scaring folk like that







:

Read this for more info
http://www.bloodjournal.org/cgi/content/full/106/2/401

If you plan another pregnancy find a hematologist to give you some sensible advice first then get second opinions on everything else until you are comfortable. Over here no-one switches from LMWH (Lovenox or Innohep or Fragmin) to ordinary heparin becuase it is unstable and more difficult to administer and needs monitoring. Some US peris are also coming round to this idea but they seem few and far between. the rationale for switching is that unfractionated heparin has an effective antidote which can be used in case of the need for emergency spinal or epidural anaesthesia which is contraindicated if you are on any anti-coagulants.

From reading here on MDC I can see that in the way hospitals work where you are that is probably a sensible precaution as the temptation to slice and dice is so high









In a new pregnancy you would probably begin injecting LMWH as soon as you get a BFP but there is no way you would be given unfractionated heparin for the whole pregnancy. Run a mile from anyone who suggests that!

I am under the care of a specialist feto maternal medicine team but am also booked for a homebirth with my local community midwifery team. This has had its tensions but the mws are 100% behind attending me and I feel so much more relaxed than if I were negotiating a hospital birth.

Evrything is possible its just a matter of finding peole to support you to do what you want. It doesn't mean you are irrepsonsible or rash if you place some importance on your labour and birth.

Got to go
Rachel


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## babybugmama (Apr 7, 2003)

Rachel - can you tell me more about why you would not give unfactionated heparin for the entire pregnancy?

I'm of to read your link now...if it's there don't worry. Thank you for your perspective !!


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## orangefoot (Oct 8, 2004)

Hi Babybugmama

I'm sorry to hear of your losses and I hope that treatment does prove to be the magical solution for you.

ABout your question - you can google for LMWH vs UFH and you will find lots of reasons that LMWH is preferred in many clinical situations over UFH.

The main ones are that LMWH is more bioavailable so better absorbed by the body; it reduces the risk of bleeding whilst on medication; less evidence of loss of bone density and it has a longer peak action time and its effect is more regular within the body.

This last means that less monitoring is required which is also a bonus.

Did you see your specialist yesterday? What was the news? I hope that reading the link you will have some confidence in the positive outcomes of pregnancy with LMWH; it truly does carry many women to a healthy baby after many losses.

I hope my perspective isn't too scary - I'm just a bit opinionated after a few struggles and now rather well read in order to try to sort it all out in my head. I can post more links if you like but many of them refer to protocols here in the UK re pregnancy and birth which I know differ greatlt from the US.

Rachel


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## babybugmama (Apr 7, 2003)

That website was awesome! I found a lot of good info, some very over my head, but some very helpful. I found one article that explained the LMWH vs UFH very clearly.

My appt is on thursday with the specialist. So, I'll take the article with me and see what they say.


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## neverdoingitagain (Mar 30, 2005)

Whoa Smeta!
thats awful! I'm so sorry to hear about your family tragedy. As irritating as my DVT was, I never really thought about it possibly killing me. Thats very scary.
Orangefoot: I'm sorry, I should have clarified the heparin comment more, I meant LMWH, not just straight heparin. Heck, no, he would never suggest straight heparin all through the pregnancy. If they knew how dedicated I was to not having a c-section or an epidural, they probably would have let me go through the whole pregnancy on LMWH. I was FTM though, so they couldn't be certain of how I would react during my labour.
I gave birth at Foothills Hospital, which is actually not too keen on c-sections, and really advocates bf( and is the home of the specialist I worked with) He specialized in thrombosis in pregnancy, so I'm hoping he was a fairly current! Lord knows he isn't an OBGYN, so he didn't say much about my pregnancy(the OBGYN specialist did though, and I'm NOT going back to him!)
Still, I have a lot of research to do. From the sounds of it so far, this might not be the impossible task that it originally seemed!








Only problem, like I said earlier, is cost. We have 80% coverage, which will still work out to about $200 a week







Gulp.


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## neverdoingitagain (Mar 30, 2005)

I was wracking my brain trying to figure out the name of the specialist that treated me.
He is part of a clinical trial called "TIPPS". Have you heard of it?
heres the link
http://www.ohri.ca/programs/clinical...t_is_tipps.asp
I'm still looking at the website you linked on here. Very interesting!


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## jenmk (Apr 28, 2005)

Hi all. Just found this thread through the pg forum.

I have FVL, hetero, and Protein C deficiency. We discovered this when I developed a superficial clot after no trauma a few years before pregnancies. I've been on Lovenox with all three pgs (I'm on #3 right now), and with the first 2 I continued it for 3 months post partum. This time I'm going on Coumadin post partum, so I'm glad to be avoiding 3 months of shots.

I've thankfully not had a DVT . . . and hope to continue that. My mom had a DVT with one pg and a clot in her lung with the other! She's never been tested for any disorders (of course her clots happened loooooong before the tests were developed). She most likely has Protein C deficiency, also, due to her history and the fact that I have it. My dad has FVL and Protein S deficiency, we found out when he had to have heart surgery a few years ago . . . so we've a bit of history in my family.

Someone asked a while back in the posts how you find out if you're hetero or **** for FVL . . . it's on the lab report for the blood test. If you do not have a copy of the report yourself, call your hematologist (or whoever ordered the test) and ask them to look it up in your file.

Never knew so many people had clotting issues . . .


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## whateverdidiwants (Jan 2, 2003)

After thinking a long long long time about it, I've decided I want to ttc again. I moved last summer so I just got in yesterday to see my new PCP. He wants me to see a hematologist in order to get Lovenox - didn't even want to look at the labs I had that showed where I was diagnosed, or the copies of my previous scripts. I have an appt on May 1 with a new gyn (who is supposed to be pretty crunchy and VBAC friendly). so I'm going to explain everything to him and ask for the meds.

This is *really* frustrating - I get pregnant very easily (lucky, I know), but I also miscarry just as easily. Because my antibodies are so high, I can't wait until I get a BFP to start the injections - I have to start right after I O. I'm supposed to get AF on Monday, so that'll put me on cycle day 8 at my appt - everyone keep their fingers crossed that everything will work out timing-wise.


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## foreverinbluejeans (Jun 21, 2004)

I was recently hospitalized with a pulmonary embolism in each lung. I just found out that there is a problem with my MTHFR. My doctor (a resident) didn't know much about MTHFR.

Now I have read that MTHFR is associated with miscarriage. I had at least 3 miscarriages. These were the ones confirmed by older pregnancy tests in the 1980's. I may have had 2 or 3 more that I hadn't gone to the doctor to have a pregnancy test.

It's so wonderful that there is now a drug that can help pregnant women with clotting disorders. My miscarriages were so difficult on me and my marriage. I have three sons, now 27, 23, and 18.

My 23 year old son is a nurse on the cardiac floor of the hospital where I was recently hospitalized. He may have saved my life. My idiot doctor was going to send me home saying I was just out of shape when I had pulmonary embolisms. My son knew I wouldn't call 911 if I wasn't in a LOT of pain. He pressed the doctor to do the right imaging exams. I was hospitalized a week!


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## neverdoingitagain (Mar 30, 2005)

Whatever~ That's great! I wish you luck with that. Here's to hoping that everything goes your way. Though it sucks that you would have to start injecting that soon.

Forever~ I'm so sorry to hear that, sounds really scary! I hope you're feeling better. Too cool about your son







good for him, for being your advocate.

I'm really surprised how long it takes for some people to get symptoms. It seems so random. Fees like Russian roulette.








okay, am I the only one that sees MTHFR, and thinks m*therf***er?








Sorry,I can't help it!


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## babybugmama (Apr 7, 2003)

MTHFR although, what *does* it stand for?

There are so many different ways to have clotting disorders...

Whatever, my ob wasn't willing to put me on the shots until I conceived. His concern was that the implantation occur in the uterus and not in the tubes or somewhere else. I'm getting my first u/s thurs and if angelbaby is where he/she is supposed to be then away we go...

Can anyone tell me what are the side effects of Lovenex, how does it affect baby, and what is the protocol in a pregnancy - throughout, until a certain point, etc.


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## Satori (Jan 30, 2003)

Quote:


Originally Posted by *babybugmama*







MTHFR although, what *does* it stand for?


Well, what I heard it stands for you can't post that kinda language here at MDC


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## orangefoot (Oct 8, 2004)

Babybug

The link I posted before is about as comprehensive as it gets on why LMWH seems to work.

Lovenox is a LMWH and as such has molecules too large to cross the placenta. What it does is switch off the cltting process at a point when your body ysyally would but in our case that something which triggers the 'switch off' is not working as it should.

In my own head I am not too concerned about side effects because I know that the effects of NOT injecting are truly terrible. I don't want to be pregnant with another DVT in my other leg leaving me unable to stand for weeks or a PE - or a clot somewhere less easily detectable like my dad had.

As I said before I am on this until I go into labour then I won't inject til about 12 hours or so after, however this seems to a UK protocol and in the US peris often advise switching to unfractionated heparin at 36 weeks or so and inducing labour sometime around 38 weeks.

There is a big old weekly thread on babycenter under High risk pregnancies of women who are on Lovenox if you read there you will see what is happening with most people.

I hope everything looks good when you have your scan. Somewhere on this thread I posted my collected (from other ladies) top tips for injecting - do shout if you need encouragement!

Rachel


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## HoosierDiaperinMama (Sep 23, 2003)

Quote:


Originally Posted by *babybugmama*







MTHFR although, what *does* it stand for?

It stands for methylenetetrahydrofolate reductase. It's a term I've come to know well over the last 6 wks. or so. I am a double homozygous carrier for the A1298C gene. Very, very, very rare.


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## LisaG (Feb 23, 2003)

Quote:


Originally Posted by *neverdoingitagain*







okay, am I the only one that sees MTHFR, and thinks m*therf***er?








Sorry,I can't help it!









My doc says that's the way he remembers it. I must admit I found his swearing to be rather endearing









Lisa


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## LisaG (Feb 23, 2003)

So here's a question I have about homozygous MTHFR - my homocysteine levels were totally normal (testing done 2-3 months post miscarriage), however my doc has me taking high doses of folic acid, B6 & B12. Has anyone found that homocysteine levels can change during the "stress" of pregnancy? And am I correct that having homozygous MTHFR is irrelevant if homocysteine levels are normal?

Thanks!

Lisa


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## taradt (Jun 10, 2003)

your homocysteine levels can change and even a *normal* reading can be high. levels in the 6-7 range have been correlated to preeclampsia.

I was tested prepregnancy and then again early pregnancy and will be tested again at about 26 weeks to make sure the levels stay in the low range (we are looking for under 5 as a minimum)

tara


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## jenmk (Apr 28, 2005)

Quote:


Originally Posted by *babybugmama*
Whatever, my ob wasn't willing to put me on the shots until I conceived. His concern was that the implantation occur in the uterus and not in the tubes or somewhere else. I'm getting my first u/s thurs and if angelbaby is where he/she is supposed to be then away we go...

Can anyone tell me what are the side effects of Lovenex, how does it affect baby, and what is the protocol in a pregnancy - throughout, until a certain point, etc.

You can certainly have an allergic reaction to Lovenox, but other than that I don't remember there being any grand side effects. (I could go downstairs and look at the insert that came with my Rx . . . ). You may have bruising at the injection site, and when you fall or bump into something you'll get lovely large bruises because your blood is clotting a lot slower.

As pp said, Lovenox does not cross the placenta, so it does not affect baby. (Yay!!) And some docs will want to induce just in case there is an emergency because there are no drugs that effectively counteract Lovenox's anticoagulant abilities. And on the rare chance that you'd need an emergency c-section, having thinned blood makes the surgery even more risky. Not something docs want to mess around with, understandably. And Lovenox stays in the body for 24 hours . . . some anesthesiologists will administer an epidural after 12 hours, some not until 24 hours since last shot.

That being said, there is a protocol for pg mom to go on regular heparin around 36 weeks until delivery, at which point she'd go back on Lovenox or Coumadin (neither pass into breastmilk). Regular heparin stays in the body only 12 hours, and they have drugs that are very effective at counteracting the heparin, so there are no worries about "what if there's an emergency" when you're on heparin. Natural childbirth all the way, with no need for induction (assuming all else is well, of course).

If your doc is talking induction, have them look into switching you to regular heparin late in pg or talk to a perinatologist yourself. They're usually in the know, from what I've found. (My OBs and 3 hematologists from different parts of the state knew nothing about switching to regular heparin at 36 wks . . . and I knew nothing either so my first two babies were induced. Not something I'd do again unless I had to. Luckily for me this time I know more, my docs are happily informed, and I will be switching to regular heparin and finally finding out what natural childbirth actually feels like!)

Good luck, mama!


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## shannon0218 (Oct 10, 2003)

The primary side effect that is concerning is calcium leaching. I don't think it's terrible but I know I'm in a different boat as I also need to take prednisone and that leachs calc as well.


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## babybugmama (Apr 7, 2003)

Thank you. I start shots on thurs so I will ask about the need for calcium supplementation, as well as what the plan is for at 36 weeks. I really don't want an induction.


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## LotusBirthMama (Jun 25, 2005)

Bumping to sub!


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## DaryLLL (Aug 12, 2002)

foreverinbluejeans, so sorry about your DVTs! Best wishes for recovery.

I still have occasional aching and numbness around my knee and it's been 2 yrs since my DVT. And of course, I can't climb one set of stairs without becoming short of breath, from lung damage from the PE.

Oddly when I was on anti-coags, I never bruised easily. But I did get super heavy periods and became distressingly anemic.


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## jenmk (Apr 28, 2005)

Quote:


Originally Posted by *babybugmama*
I really don't want an induction.

No . . . you really don't.









And there's no reason you will be pushed into it once your docs learn more (if they're not already in the know).


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## babybugmama (Apr 7, 2003)

Nope, no induction...I just stop the shots once I start labor...they are active for 12 hours. It may be a little different, I'll have to talk to my delivering ob. I talked to the perinatologist.


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## Erikajo (Apr 30, 2006)

Hi, what a great thread!

I was diagnosed about 2 years ago with Von Willebrands Disease and thankfully it appears that I have a very mild version of it. As a child, I was perfectly normal - I never had any excessive bleeding or bruising. It seems that it was 'activated' by my pregnancy with my son. I ended up needing a c-section due to him being almost 10 pounds and sunny-side-up. After they pulled him out, my uterus tore (they said due to his size) and I started hemorrhaging pretty badly. They told me they almost had to take my uterus, but they were able to stop the bleeding. (I was only 20 at the time so that would have been devastating!) I ended up needing 2 blood transfusions. I recovered slowly but surely and everything seemed fine. Then about 12 weeks PP, my period returned and I had such severe bleeding I had to go to the ER. They had to give me some sort of BC pill to get it to slow down. After that, I noticed for months that I was bruising VERY easily and I would bleed for a long time after getting something as simple as a papercut or a nick from shaving my legs.

I eventually switched to a different doctor and she sent me in for extensive bloodwork. It came back that I had Von Willebrands syndrome. She referred me to a hematologist but due to insurance issues at the time, I never went. My father sent me this daily mineral supplement and after taking that for a month, my bruising and bleeding went away and I've been fine ever since. I've continued to take it daily until recently.

I am pregnant again and at my initial prenatal exam, they told me Von Willebrands is actually a genetic condition. I am now getting my 3 year old son tested because there is a 50% chance he has it too. My OBGYN said they would be referring me to a hematologist this pregnancy and keeping a careful watch on my bloodwork. They drew a bunch of blood then to test my levels, but I still haven't heard back what the results are. (I'm assuming they're okay because I feel fine.)

Does anyone else have Von Willebrands? I saw two people posted a couple pages back, but that was it. Does anyone know of any natural means to help with this condition? I'd really prefer to stay away from drugs as much as possible unless it's really necessary. And I have know that's what my doctors will resort to.

TIA!


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## whateverdidiwants (Jan 2, 2003)

I saw the new gyn yesterday and got the ok to ttc this month!









He said that because I never had a DVT or pulmonary embolism that I only need ONE Lovenox shot a day, and that with 2 he thinks I was over-medicated. According to his diplomas, he was trained in Toronto (and he's pretty young, I would say 40 max) - think that's why he's not as aggressive as other docs in the US?


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## babybugmama (Apr 7, 2003)

Hmmm...I wonder if that's why I'm only on the one shot a day too? He seems to be willing to walk whatever line *I'm* most comfortable with...


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## whateverdidiwants (Jan 2, 2003)

Do you mean your doc is Canadian? Or that you've never had a DVT or embolism?


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## babybugmama (Apr 7, 2003)

never had a DVT or embolism...dunno if he's canadian or not


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## shannon0218 (Oct 10, 2003)

Lovenox only needs to be given once a day, it has a 24 hr halflife, which is why it's a concern if you go into labor early after your last shot. The stability of lovenox is also very good, whereas heparin seems to depend mostly on the body it's in. There is no reason to give lovenox or fragmin more than once a day. When i had a DVT that was serious I was given fragmin once a day. The twice a day dosing seems to be coming from ob's and peri's rahter than hemeotoligists.

Who is your doc who trained in Toronto? Ask him if he knows Dr. Carl Laskin, that's who I see.


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## whateverdidiwants (Jan 2, 2003)

I've never heard that before - I had a hematologist for my last pregnancy and he agreed with the twice a day dosing.


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## HoosierDiaperinMama (Sep 23, 2003)

Quote:


Originally Posted by *shannon0218*
There is no reason to give lovenox or fragmin more than once a day.

Not necessarily. There is a good reason for giving Lovenox twice a day for those who need it. During Grace's short-lived pregnancy I was on 100mg twice a day. I may be the extreme b/c of my history, but some dr.'s do prescribe twice a day.


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## jenmk (Apr 28, 2005)

I'm sure it all depends on your history. Dosage and how often you take it will differ from person to person. Those of us on once a day may have different doses that we're taking. Personally, I'm taking 40mg once a day. If I were to develop a clot, which is still possible even while being anticoagulated, what I've been told is they would double my shots to 40mg twice a day. (FYI--My dosage originates with a hematologist, but has the agreement of two other hematologists, 3 OBs, and a perinatologist . . . no one ever brought up whether I needed to be on two shots a day.)

Lovenox actually has a 12 hour halflife, but stays in the system for 24 hours.


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## orangefoot (Oct 8, 2004)

I inject Fragmin once a day but at a near treatment dose of 7500iu. When I actually had a DVT I was on 10,000iu daily and when I was on a prophylactic dose whist beginning to take warfarin post partum I was only on 5000iu.

My current 'middle of the road' dose is related to my existing DVT and an increased blood volume and body weight. For some reason Fragmin is always given only once a day.

From what I have read Lovenox doses should be adjusted to body weight and can be at 1mg per kilo for twice a day or 1.5mg per kilo for once a day.

A LMWh is cleared through the kidneys, kidney function is also taken into account when dosing with so poor function requiring a lower dose.

Quote:

Elimination. Following intravenous (i.v.) dosing, the total body clearance of enoxaparin is 26 mL/min. After i.v. dosing of enoxaparin labeled with the gamma-emitter, 99mTc, 40% of radioactivity and 8 to 20% of anti-Factor Xa activity were recovered in urine in 24 hours. Elimination half-life based on anti-Factor Xa activity was 4.5 hours after a single SC dose to about 7 hours after repeated dosing. Following a 40 mg SC once a day dose, significant anti-Factor Xa activity persists in plasma for about 12 hours.
from http://products.sanofi-aventis.us/lovenox/lovenox.html

Calcium leaching is much worse in unfractionated heparin use which is another reason LMWH is preferred as the effects are much less.

I think it is always worth doing your own reading and questioning your doctors on their treatment advice as feeling comfortable with your treatment is very important. I keep hassling my OB because I know that she doesn't know as much about my condition as I do by the things she says. Fortunately I am also under the care of a maternal medicine professor who is a lot more concerned with my body than she is! My haemo is also in the picture and I do have a lot of faith in him because blood is ALL he does.

My situation is about keeping ME clot-free whilst pregnant so I'm more comfortable with the treatment-related advice from people who deal with clotting and so on than I am taking it from an OB who is caring for my uterus and my babe inside who seems to be perfectly happy.

What we all need is a highly qualified and up to date onestop shop for all these problems instead of having to juggle info and see different people all the time.


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## HoosierDiaperinMama (Sep 23, 2003)

Quote:


Originally Posted by *orangefoot*
From what I have read Lovenox doses should be adjusted to body weight and can be at 1mg per kilo for twice a day or 1.5mg per kilo for once a day.

I am really bad at converting.







And math.







How does that translate into lbs.? Maybe that was why I was on such a high dose!


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## orangefoot (Oct 8, 2004)

1kg is 2.2 pounds do divide your weight in pounds by 2 and you are close to kilos for arguments sake!

I usually weigh 8 stones and that is around 50kg. I don't do pounds


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## shannon0218 (Oct 10, 2003)

Quote:


Originally Posted by *HoosierDiaperinMama*
Not necessarily. There is a good reason for giving Lovenox twice a day for those who need it. During Grace's short-lived pregnancy I was on 100mg twice a day. I may be the extreme b/c of my history, but some dr.'s do prescribe twice a day.

Oops, sorry, I actually ment prophylactically! Yes, that makes a big difference. Basically I was told the difference dose wise between treatment and preventative is 50% so your dose will be at minimum doubled if you go from prophylactic to treatment. My heparin dose was doubled when we found a clot in Molly's cord, when the clot resolved I was put back to 75% of that dose for the remainder of the pregnancy with U/S to check cord flow weekly.
Also, yes, Fragmin does only need to be done once a day even at treatment doses.


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## shannon0218 (Oct 10, 2003)

Oh, and the doses of fragmin and regular heparin are the same, for example, like Orangefoot, I was on 5 000 units twice a day prophylactically, increased to 10 000 units twice a day when we found the clot and then reduced to 75 000 units twice a day until Molly was born. Clear as mud right???


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## SweetTeach (Oct 5, 2003)

I feel kind of silly posting this here but I wondered if I might get some thoughts about this since I can't get in touch with a doc until the morning.

Last week I had a bad fall- I was walking in the march of dimes walk with my ds2 on my back and I tripped on a pothole (love nyc). I bruised my nose (thought it was broken but it wasn't), busted up my lips (I had 4 stitches in the top lip) and bruised up my right side- shoulder, hip, knee, ankle and my breastbone felt sore.

I've healed up really well on the outside but still feel bruised on the inside. I've noticed that it feels like my breastbone feels really sore still. Someone gave me a hug last night and I had to pull back because it felt too tight.

When I was in the ER I mentioned my blood clotting d/o and the ER doc didn't think it was necessary for me to go on lovenox b/e of the fall, but frankly, I don't think many docs know much about it. I don't have a hemo that I see regularly, although there is one woman I saw during my last pg that I am going to call tomorrow morning.

Do you all think I should've gone on the blood thinner? This soreness in my chest area is just making me feel cautious, yk? I don't feel short of breath or anything.

Thanks...


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## whateverdidiwants (Jan 2, 2003)

I disagree with the ER doc. 2 years ago I severely bruised a rib while on vacation and didn't think about taking a shot of Lovenox for it - BUT I took one anyway because I was flying a long distance to get back home. When I went to see my doc about the injury (I thought my rib was broken), she said that it was a good thing that I took the Lovenox because otherwise I could've ended up with a nasty clot.


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## LisaG (Feb 23, 2003)

ST, not sure what to tell you but







, sounds like a nasty fall. Speedy healing!

Lisa


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## SweetTeach (Oct 5, 2003)

Thanks whatever and Lisa (how are you btw?)

Hmmm, well I'm waiting for a call back from the hemo but now I'm wondering if I should be talking to her or going for an xray to see what's up with my chest.

What is the protocol for this and why am I asking on a discussion board? (I'm being facetious here, you all have more info than professionals IRL, I think).
Sigh.


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## babybugmama (Apr 7, 2003)

St







even dh and I were talking about that last night, that I find more info here than anywhere! And it's always good info with links to find even more good info!

I hope you feel better soon. I crashed into some chairs today and am beginning to get some nice bruising on my thigh.


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## orangefoot (Oct 8, 2004)

The last time I felt odd in my chest I had a D-Dimer test done on my blood, a chest x ray and a blow into a thing which shows how well your lungs are expelling air.

D-dimer is a chemical which is given off by a clot so if you have a clot the test will come back positive.

At the ER over here once you have had a clot they tend to run around a bit if you turn up with chest pain to make sure you haven't got a PE as that caeses them big problems(!)

Hopefully where you are the combo of blood clotting disorder plus clot plus chest pain is also a red flag.

I hope you find some answers soon.

And Baby Bug - watch out for those large items of furniture jumping out on you


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## whateverdidiwants (Jan 2, 2003)

I'm still fighting with Blue Cross to get my Lovenox covered. I'm REALLY ticked off because when I spoke to them on Friday they said that they had all the paperwork they needed. Today they're saying that a dx of just APA isn't sufficient.









Today is cd 13 and I should be ovulating Monday - I should be starting the shots TODAY. I've already started pricing local pharmacies, and worst case scenario I'll have to pay for a box full price tomorrow ( at $308 - faints), and then order from Canada where it's a third of the price.

My doc has a call in to the Medical Director of Blue Cross to appeal. Everyone cross their fingers for me.


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## orangefoot (Oct 8, 2004)

Didi - that's pants! Do you need any research to back up your claim? I'm sure I've got something somewhere that would be relevant if your doc wants it.

Everyone here complains about our relatively high taxes on salaries as well as National Insurance but at least I don't have to worry about the cost of this stuff whilst I'm pregnant nor how much the birth will cost.

Crossing my fingers for you
Rachel


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## whateverdidiwants (Jan 2, 2003)

Thanks, Orange, but it's not the doc that's the problem, it's the insurance company. I work at a different insurance company and I think I'll call our pharmacy dept today and see what *we* consider a sufficient diagnosis for authorization.

I went ahead and bought 1 box out of pocket last night, and if I don't hear back from my doc this morning I'm going to go ahead and order from Canada (it's 1/3 of the price!). Dh and I talked about it, and since we have the money in the bank, we're not going to let this stop us from having another baby. I mean, we were talking about adopting, which costs 25k - so why would we let $3500 worth of meds stop us from having another biological child?

Took my first shot last night. They've changed the syringes in the last 4 years - they didn't have the safety mechanism before, and maybe I'm wrong, but I think the needle gauge is smaller (not that I'm complaining).


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## whateverdidiwants (Jan 2, 2003)

Kind of resolution: Blue Cross will pay for it, but not until I get a BFP. Doesn't matter that I miscarry at 5 or 6 weeks and I need it before I ovulate. Grrrrr.

I went ahead and ordered a month's supply from Canada - it'll cost me the same as one box of 10 syringes cost here.


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## shannon0218 (Oct 10, 2003)

whatever, have you thought of just going with standard heparin for the post ovulation phase--it's WAY cheaper, especially if you don't get pregnant right away--your drug company may even cover that.
For what it's worth, I've had 2 hemos tell me that for APA, being on baby aspirin for a minimum of 2 mos prior to conceiving is more important than anything.


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## whateverdidiwants (Jan 2, 2003)

My last doc had me on heparin pre- BFP, but my new one is anti-heparin and only prescribes Lovenox. I've been on aspirin on-and-off (mostly on lately) ever since I was diagnosed, and I just had a PT/PTT done that was normal, so I think I should be ok. The money sucks, but we can afford it so I can't really complain. It's worth it in the long run.


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## tikva18 (Dec 21, 2005)

ERicaJo, I have VonWillebrans also. I'm pretty sure that my mom has it too. I bruise very easily and hemorraged with almost all of my deliveries. I've always had heavy cycles and am happy to manage them with bc.


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## HoosierDiaperinMama (Sep 23, 2003)

Quote:


Originally Posted by *whateverdidiwants*
I'm still fighting with Blue Cross to get my Lovenox covered. I'm REALLY ticked off because when I spoke to them on Friday they said that they had all the paperwork they needed. Today they're saying that a dx of just APA isn't sufficient.









Today is cd 13 and I should be ovulating Monday - I should be starting the shots TODAY. I've already started pricing local pharmacies, and worst case scenario I'll have to pay for a box full price tomorrow ( at $308 - faints), and then order from Canada where it's a third of the price.

My doc has a call in to the Medical Director of Blue Cross to appeal. Everyone cross their fingers for me.

We have Anthem as well and I had NO problems whatsoever getting my Lovenox covered w/Grace's pregnancy. I called beforehand b/c I had no idea what it would cost and I wanted to make sure they covered it. The CSR said that my copay would be $30 (most expensive copay on our plan). I didn't realize that a 1 mo. supply was almost $4,000!







Obviously, I was more than obliged to pay the $30.

May I ask why you need the Lovenox while you're O'ing? I didn't read the rest of your posts so I'm sorry if you've explained it already.


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## 5thAttempt (Apr 22, 2006)

Hi! I also switched from lovenox to heparin after paying $600 for a week's supply. My doctor claims that there is no big difference, well there is a difference but in her opinion the difference does not worth 2000 a month. Anyway, I was looking all over the posts and found that most of women use calcium supplement while on heparin. I asked my doctor and she said that with my dose 5000units 2 times a day she whould not worry too much about calcium, but I can use tums or any other calcium supplement. Well, i do not like the taste of tums, so I was wandering what calcium supplements you were using during pregnancy? What is the right dose? I am on prenatal vitamins already.


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## HoosierDiaperinMama (Sep 23, 2003)

Quote:


Originally Posted by *5thAttempt*
My doctor claims that there is no big difference, well there is a difference but in her opinion the difference does not worth 2000 a month.

Lovenox is more potent, thus a longer half-life than Heparin, but you're right, the $$ is the biggest difference. The doctors at the Maternal Fetal Medicine Clinic at IU prefer Lovenox over Heparin but they realize not everyone (and their insurance plans) can swing the almost $4,000/mo. for Lovenox.


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## orangefoot (Oct 8, 2004)

In the UK where we don't pay directly for our meds as I said already there is nearly zero prescribing of straight unfractionated heparin. Nine years ago I had UFH after the birth of ds2 but was given Fragmin when I was discharged from hospital to inject at home. UFH is not considered safe for home treatment here.

The benefits of LMWH over UFH are several and begin with more predictable effect, better absorbtion, less bone decalcification and less incidence of bleeding. I can't put my finger on any research just now but if you google you will find stacks of it.

I can totally understand cost being a factor and injecting UFH is 1000 times better than injecting nothing at all but your doc is not being totally straight by saying that cost is the only difference.


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## 5thAttempt (Apr 22, 2006)

Well, at this point am I not debating lovenox vs heparin anymore (unless we will switch to new insurance in a month or so). I am questioning what other calcium supplements I should use in addition to my prenatal vitamins and what will be needed amount. Can I just go to to pharmacy and and by calcuim over the counter? Anyone better than the other? I was postponing this decision since I was not sure if this pregnancy will stick or not. It looks like it might stay, so now I need to take care of long term effects. Any suggestions about calcium/dosage?

whateverdidiwants, I am not sure where you live but when I was researching lovenox prices I discovered that they are different at diffrent pharmacies. In my area Osco drugs had them twice as cheaper than walgreens. It was still expensive - 2K vs 4K for a month - but if you decided that you will stick with it - you might want to check around.


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## whateverdidiwants (Jan 2, 2003)

5thattempt - I didn't do extra calcium other than fortified juice. I eat a vegan diet high in calcium via leafy green veggies and broccoli so I didn't sweat it.

I called around to all the local pharmacies (I'm in South Florida) and the cheapest I found it was $308 a box. I just ordered a month's supply from Canada at $350 for 30 shots. Hopefully, I'll get a BFP this month and then insurance will pick up the rest.


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## jcs7880 (Dec 17, 2005)

I have fairly severe ITP, ( Chronic Adult idiopathicthrombocytopenia) I have had it for a looonnnnnggg time. I am closely monitored throughout my pregnancies. I get IV infused platelets sometimes, and globulin therapy when they get low.

I am TTC #3, and also on therapy for a number of infertility issues.


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## isaiahsmommy05 (Jul 1, 2005)

I have Protein S & C deficiencies, Lupus Anticoagulant, MTHFR mutation.

Isaiah was stillborn at 33 weeks due to complete placental abruption and I almost died too. I've also had many miscarriages.

I'm now on 81 mg aspirin 1x/day and I take prenatal vitamins and folic acid. I will be on the aspirin and folic acid my whole life and the prenatals my whole reproductive life. Fine by me, they're good for me.
During pregnancy i'm on all of that, plus Heparin the entire time 2x/day. I was put on Lovenox for 6 weeks after Elliana was born. I was also on Aldomet for blood pressure, and some other medications. I'm on seizure meds as well.
We had weekly dr. visits with ultrasounds being done every 2 weeks , then they went to 3 times a week with NST's and Amniotic Fluid Index's and Biophysical Profile's being done.
I was also on bedrest for many different reasons. She started trying to come out at 26 weeks lol. Heck, I was 5cm when they induced me!

Elliana was induced at 35 weeks because of the risk to her health as well as mine. She had to be on the ventilator and needed surfactant when she was born, but i'm still very glad we were induced. I wore Anti-embolism stockings while I was in the hospital with her. I hate that she needed all of that stuff, but the pros outweighed the cons in our situation. She is indeed our miracle.
I have other health issues as well that tie into everything.

I see a new hemotologist in September. He will be treating me and he will be testing Elliana.

I'm still covered in bruises and knots.


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## neverdoingitagain (Mar 30, 2005)

Isaiahsmommy,
I'm just amazed! Wow..thats alot to go through. I'm so sorry about your little boy, thats so sad. Your dd is adoreable, and you looked so happy in your pictures. Our babies really are miracles.
I'm just amazed by all of you ladies on here. You are so strong







, much stronger than I! Like I said earlier, as tough as it was for me, I never worried about dying. I feel very lucky, I only have factor V leiden, and I only have to worry about LMWH if/when we decide to have another baby(thats put on hold again







)
Happy Mothers Day Ladies! You deserve it


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## radugadb (Jun 8, 2006)

Hi all,

I had a question regarding some earlier posts about MTHFR and induction, which I just found thanks to Google.

I'm currently 18 weeks pregnant (due 11/7). I was diagnosed with MTHFR C677T homozygous mutation after two prior miscarriages. I'm currently on Lovenox and this time around, things seem to be going well. However, my perinatologist told me that even though they plan to switch me to regular heparin at 36 weeks, they then want to induce around 39. The more I think about it and read about it, the less I want to be induced if I can help it (barring other complications, of course). I am not really clear on why he thinks induction is necessary, and plan to discuss it with him further. (I haven't had a chance to see him since before this pregnancy, when I was originally diagnosed.) According to my OB, this is just sort of a standard thing they do when you are in the "high-risk" category. I've been doing some searching to try to find out if this is really a standard and if so why, specifically, but I haven't found much.

So, my question.. has anyone else been told this, and if so, what reasons were you given? Also, does anyone know a perinatologist in the Austin, TX area that they would recommend that does not subscribe to this line of thinking? I liked mine otherwise, but if this becomes a big issue I may need to seek a second opinion. Any advice would be much appreciated!


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## A&A (Apr 5, 2004)

Just found out I have both Factor II and Factor V. I'm finished having babies, though. (I had two perfectly normal pregnancies, thank god.)


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## orangefoot (Oct 8, 2004)

About induction-

From what I can gather induction is planned so as to control the dosing of medication around the time of labour to ensure that epidural or spinal pain relief is a safe option.

This seems more common in the US (from what I read on other boards) than here in the UK where this has not been suggested to me as an option.

You may find some docs who are concerned about an increased risk of late loss and more problems with placental function in late pregnancy but from my extensive reading over the past few years this seems to only be a serious risk in unmedicated pregnancies. The research making the link between thrombophilias and late loss are all reviews which find symptoms first then match these to a later diagnosis of MTHFR or PSD of FVL etc. Unfortunately this is the way that many women find that they have a clotting disorder: they suffer recurrent loss or a stillbirth and it is only then that they are tested for any problem.

The data available for treated pregnacies in previously diagnosed mothers show that loss of any kind is extremely rare as are secondary complications.

If you can convince your OB that you will not need an epi then he will have to come up with another reason for induction. If he is concerned about problems then you can request weekly monitoring, NSTs and bio-physical stuff to reassure you both - which I understand can unfortunately be used to provide info you don't need see http://www.midwiferytoday.com/articles/biophysical.asp or you can just say that is your decision and you don't want to to be induced thank you or "Thank you (Mr Hi-an-mi-tee) for your advice I/We will consider it carefully and let you know what we decide" (Quote from the infamous midwife Mark Cronk here in the UK.)

I know that sometimes women with clotting disorders do need to be induced or have a c section but I really cannot understand why these thigs are suggested as routine when OBs should know that both processes are known to increase our risk of clotting problems post-natally. I cannot imagine any doctor suggesting un-necessary surgery to anyone with a clotting disorder in any other situation so why this one?

a bit ranty - sorry
Rachel


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## 5thAttempt (Apr 22, 2006)

*Question*

I am 11.5 w pregnant and taking heparin 5000 units twice a day for protein S deficiency. It was prescribed to me by fertility specialist. Then I was transferred to the regular OB. Well, last time I saw my OB he hinted me that he might stop heparin after 1st trimester. (risk/benefit consideration, he said that after 1st trimester placenta is more capable of functioning w/o blood thinners and it is more critical to take them at the beginning). I will be seeing high -risk doctor who will advise him on the subject. I never had blood clot and was on birth coltrol pills for many years. Anyway, it is still in the air. As much as I hate doing the shots I am terrifying at stopping them.
I had molar pregnancy, then my son almost 9 years ago and 4 m/c in a row during the last 3 years. Any thoughts? Any one else stopped taking heparin/lovenox after 1st trimester? He said that I should continue aspirin till the end of pregnancy.


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## craftymom (Jun 27, 2005)

Hi there,
I am new to this thread. I have FVL hetero, diagnosed after a second trimester miscarriage (apparent partial abruption that tried to heal itself) and an early m/c. One healthy son pre-diagnosis, and one after (now 6 and 3).

I would LOVE to read the studies you mention below. We are still debating trying for another, and I know there is more research done and quite possibly treatments have changed. And I'm 3.5 years older!

Thank you!

Quote:


Originally Posted by *orangefoot*
About induction-

The data available for treated pregnacies in previously diagnosed mothers show that loss of any kind is extremely rare as are secondary complications.
a bit ranty - sorry
Rachel


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## orangefoot (Oct 8, 2004)

This is the most recent review http://www.bloodjournal.org/cgi/content/full/106/2/401
which, if you can get through the blurb shows

Quote:

Overall, live births were reported in 94.7% of pregnancies, including 85.4% in those receiving LMWH for recurrent pregnancy loss. LMWH is both safe and effective to prevent or treat VTE in pregnancy.

http://www.naturalchildbirth.org/nat...prebirth35.htm

http://www.chestjournal.org/cgi/cont...9/1_suppl/122S

http://www.gfmer.ch/Guidelines/Pregn..._pregnancy.htm

Other links about Blood Clotting Disorders (pasted from a list so they may not all work sorry)

http://www.protein.org.uk/forum/inde...showtopic=2075
http://www.fetal-medicine.com/MTHFR.htm
http://www.clinchem.org/cgi/content/full/49/9/1432
http://www.fvleiden.org/ask/51.html
http://www.mostgene.org/gd/gdvol20d.htm
http://www.fetal-medicine.com/MTHFR.htm
http://www.rialab.com/pages/ria2.html
http://repro-med.net/tests/tests.php
http://www.cmaj.ca/cgi/content/full/167/1/48
http://pathology.mc.duke.edu/coag/Panel.htm
http://www.futuremedicine.com/doi/fu...35?cookieSet=1
http://www.sjhc.london.on.ca/sjh/pro...out/news28.htm
http://www.pubmedcentral.gov/article...tid=305329#top
http://www.rbej.com/content/1/1/111
http://www.update-software.com/ABSTRACTS/AB002859.htm

This might all be a bit much to read at once! The first few give the general gist and the others have a variety of info about different aspects.


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## mauraweb (May 25, 2005)

I'm new here, tho have been lurking for a while. I have a 4.5 yr old son who was conceived with no difficulty -- it was an easy pregnancy and delivery, too. When we started ttc again I had 2 mc's in a row at 35 and 31 days. I went for blood tests and have tested positive for several acquired and inherited thrombophilic factors. Apparently I'm not at risk for clotting normally, only while pg.

Earlier this year I got pg again. My perinatologist started me on progesterone suppositories and 40mg lovenox once/day just after the positive pg test. But at a checkup at 6.5 wks there was no heartbeat, another mc. My OB did a d&c to see if she could recover tissue for testing, but the test was inconclusive.

Now I'm on day 2 of the cycle in which we can try again, and I'm seriously waffling. My perinatologist said he'd up me to 40mg lovenox 2x/day, which just seems like so much to me! And frankly I'm terrified of having a mc even later -- though it saddens me to have had 3 mc's at least they were early.

I guess thrombophilic issues can arise at any time, but I even though it's been 6 mos since my first blood tests I still can't wrap my head around the fact that I had a totally textbook pg with my son, and now this. It just seems so weird to have all of these clotting issues that are so bad in pg but they are not dangerous to me when I'm not pg? I guess I still haven't come to terms with it all yet. I'd hoped for a homebirth with our second child and can't quite believe that I am suddenly a high risk pregnancy.

Thanks for reading -- I'm looking forward to learning more from all of you.


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## shannon0218 (Oct 10, 2003)

Unfortuantely it's VERY common for clotting issues to get worse as you age. Even genetic disorders that you could have been tested positive for years ago, will often manifest in your 30's or later.


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## 5thAttempt (Apr 22, 2006)

I had 4 m/c in a row for the last 3 years. I had my son 9 years ago without any issues. After m/c #4 I was diagnozed with Protein S deficiency. I am currently on heparin and 12 weeks pregnant. However no one was sure that PSD is the root of the problem. I just turned 36.


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## craftymom (Jun 27, 2005)

Thanks for these. It will take me awhile to get through them. Between the kids and the terminology







I'll do my best.



orangefoot said:


> This is the most recent review http://www.bloodjournal.org/cgi/content/full/106/2/401
> which, if you can get through the blurb shows


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## mauraweb (May 25, 2005)

Sigh, I'd suspected the age thing had something to do with it. I just turned 37. I was 31 when I conceived my son, and had just turned 35 when we started ttc #2. Who knew what a difference 4 yrs could make?


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## orangefoot (Oct 8, 2004)

Age does seem to make a difference but its just a case of your luck running out without realising it I think.

I got through my twenties with PSD on and off transatlantic flights, taking the pill, having two children then I got a DVT out of the blue when I was just shy of 30. Onset of problems for PSD is around 50% by the late 20s (I think) so every year you go past that you are moving into the unknown.

Most clotting problems are amplified by pregnancy and not necessarily 'harmless' when not pregnant. The thing is that they become more obvious during pregnancy especially if you suffer a loss and this is a trigger for testing. Some people do not suffer m/c but do develop DVT while pregnant.

5th Attempt - Hopefully PSD is the cause of the problem and if it is then the heparin will really make a difference - don't let them take you off it the risk benefit is waaaay in favour of continuing treatment. Tell them that you know that your risk of clotting is increased with pregnancy and you would rather continue treatment than suffer a DVT or later problems with clots in the cord or placenta. Print off the whole of the first article I posted last and get them to read it. OBs are not experts in blood clotting by definition, no matter what they might think. Wishing you a healthy pregnancy









Rachel


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## mauraweb (May 25, 2005)

Thanks for all the insight, ladies. After a long talk DH and I decided we will wait another 2 cycles to try again. I've just started a 1 yr graduate program and the timing will be better if we wait. Part of me feels hesitant to wait at all, since who knows what can happen in even two months? I wish more was known about all of these issues -- it's so frustrating to have no clear reasons why these thrombophilic factors developed. Makes it really hard to plan for anything.


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## 5thAttempt (Apr 22, 2006)

Just a little update: I saw peri and he said that I have to use blood thinner for the rest of pregnancy. Now I have to decide if I wan to switch to Lovenox or stay or heparin (my new insurance will cover lovennox and old insurance was a reason for me to use heparin). I already switched once after a week of usage of lovenox. My dh said: why fix something if it is working? For those why used both: are the briusing the same or is it better with one over the other? Also, I can not get a sence of security with my OB: now he said that may be he get me off all meds 2 weeks before the delivery. Peri said that I have to switch to heparin at 36 weeks if I choose to use lovenox now. My OB's point: why complicate thing if I really never had any issues. Becides, my undestanding that Protein S deficiency usually come together with other clotting issues and thus non-usage of blood thinners is not an option, but I do not have others. Any commenets on both issues: switchng to lovenox from heparin at 12 weeks (where I am now) and usage at the end of pregnancy? Thanks.


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## shannon0218 (Oct 10, 2003)

I'm not certain of your past and whether you've had any live children or not but just because you haven't had any issues so far doesn't mean you won't have any issues in the future. Personally I'd NOT come off for 2 whole weeks before delivery, this is when the risks are greatest--lots of people have completely healthy pregnancies and then end up with a still birth that is later traced back to untreated clotting disorders.


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## 5thAttempt (Apr 22, 2006)

shannon0218 said:


> I'm not certain of your past and whether you've had any live children or not
> 
> 
> > I have 9 year old son and that was pregnancy w/o any complications. Then I had 4 m/c in a row and after #4they diagnosed me with Protein S deficiency. This is the first pregnancy that I am taking blood thinner.


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## shannon0218 (Oct 10, 2003)

If you had 4 miscarriages than you've had 4 incidents, you wouldn't be able to pay me to come off my meds for 2 weeks at the most important part of the pregnancy


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## orangefoot (Oct 8, 2004)

I have only Protein S Deficiency nothing else. In your situation I imagine treatment is necessary due to your losses and will certainly help you avoid any clots.

The thing about stopping meds 2 weeks before delivery is about the risk of bleeding in the spine if you have an epidural. The way that this seems to be dealt with in the US is to switch from Lovenox back to heparin from 2 weeks before you are due (or an induction date) because it is possible to reverse the effects of unfractionated heparin relatively successfully with Protamine Sulphate- although this process itself is not without risks.

I've listed the benefits of Lovenox (LMWH) ove unfractionated heparin a few posts back and if your insurance covers it I would go for it. The volume you need to inject is less too.

Quote:

My OB's point: why complicate thing if I really never had any issues.
Goodness me doesn't he think 4 losses count as previous issues?
Stopping meds just before birth is ok, as in a few hours before, but as Shannon0218 says I would think that 2 weeks before leaves you open to all kinds of possible bad news: primarily clots in the placenta or umbilical cord.

Can I whisper 'second opinion' here?


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## 5thAttempt (Apr 22, 2006)

Thanks for the input. This is how I felt too. I am actually so surprised with my OB since I like my OB so much and I kind of trust him and he is the one who will deliver the baby. He is always so positive and optimistic. It is just he seem to think a little different from both peri and fertility specialist who run all those tests on me. At least when I told him that peri said I have to use heparin/lovenox - he said - fine, I am not going to argue - use it. He also said that we will come back to the end of pregnancy discussion when there is a right time - at the end of pregnancy.

I am planing to do epidural since I am not able to tolerate pain at all. I admire mom who can do it 'naturally' but with my son with my very long labor I just could not tolerate the pain. What do they do in UK? Do they do epidural? How do they reverse the effect of heparin? Do you need to reverse it if your last dose was 12 or more hours before?


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## 5thAttempt (Apr 22, 2006)

I woke up duting the night to go to the bathroom and realized that my nose is bleeding. I am on heparin 5000 2 a day. Is it a side effect? Should I worry? Should I talk to a doctor? Did it happened to anyone? It was not much and stopped almost right away, but it freaked me out.
I also posted in pregnancy section.


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## WinterBaby (Oct 24, 2002)

I'd get surprise nosebleeds not infrequently while on blood thinners. Would bleed easily and more excessively all the way around. Guess that's the point, huh?


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## shannon0218 (Oct 10, 2003)

Are you taking baby aspirin as well? Mine were related to the aspirin not the heparin so much. I wouldn't worry about one or two but if happens routinely I'd be wanting clotting levels to be checked. Are you having routine blood draws done to check where your clotting levels are?
Most of my nosebleeds were because my dh elbowed me in the face while he slept--those ones took forever to stop!


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## Mynn (Nov 18, 2003)




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## whateverdidiwants (Jan 2, 2003)

I was on the pill from 92-00. I got pregnant about 3 months after going off the pill (7/00) and had a 10w miscarriage in October. I had 2 more 1st trimester losses (Jan and May 01) before being diagnosed with a high positive for APA.

I carried my daughter to term (born 4/02) after being on Lovenox (40 mg twice a day).

I haven't been on hormonal birth control since I went off in 00, but my levels are still positive and I just had another first trimester loss 3 weeks ago.

Can you tell me more info about the lawsuit?


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## Mynn (Nov 18, 2003)




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## orangefoot (Oct 8, 2004)

http://www.clevelandclinicmeded.com/...ercotables.htm

Have a look at tables 4 and 5 to see how oral contraceptives increase your risk of thrombosis.


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## northcountrymamma (Feb 24, 2006)

So I saw at least one post on here about ITP, anyone else? here's my story and then a few questions...

I found out I had a low platelet count from my MW when i was 37 wks, she said that there could have been an error and for us to redo the test but if it was in fact the case that I would have to go to the hospital for dd's birth. I was CRUSHED!!!!! Tears were a flowing for the whole last three wks of my pregnancy, after a relatively healthy and radiant rest of pregnancy. It was hard to hear that I had a problem. So anyways, I had dd in the hospital after a 42 hour non induced labour, vaginally. It was nothing like I had planned and I still hate to think about portions of it. But big picture I am over the birthing part of it and have a fantastic little girl regardless of how she was born. Soooo...we thought that the ITP was just due to pregnancy and that once thngs returned to normal in my body (hah, like that'll ever happen after giving birth!) that the platelets would go back to normal. Well two and a half years later and no changes. They linger around 70 - 100k and I have tried various docs to try and get them back up to normal. Conventional docs say that they don't worry about it until they are really low and then they do platelet infusions or give steriods, and Nature docs do test after test after test to find nothing...and we have no health insurance (Canadian living in the US). Soooo,
My questions I guess are, has anyone had any experience with this? I do want to have another child one day but I have heard horror stories about the fact that they can go even lower now that they are already low. I refuse to put myself into a situation that will compromise my health or that of the baby's. I am in no rush to have another child but would like to know that there are ways to birth a child at home with ITP because there are ways to get those platelets up for good without drugs or interventions that scare the ***out of me!

K, sorry so long, been wanting to post this for a while and glad to get it out there.
much thanks,


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## Mynn (Nov 18, 2003)

Quote:


Originally Posted by *orangefoot*
http://www.clevelandclinicmeded.com/...ercotables.htm

Have a look at tables 4 and 5 to see how oral contraceptives increase your risk of thrombosis.

thx


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## Aisle22 (Jul 3, 2006)

Hi-

I am new here, so let me give a quick bio:

Julie, age 26, just found out I'm pregnant with baby #2. Baby #1 was born in Feb earlier this year.

I have Factor V Leiden, and MTHFR. During my first pregnancy I was on Lovenox for the duration.

During the delivery of my first, I suffered postpartum hemorrhage, and had to have my uterus embolized to stop the bleeding.

I am very excited about my most recent pregnancy, but very scared, as the embolization left me with limited blood flow to my uterus. As if the Factor V wasn't scary enough.

I'm interested in discussing factor V leiden with others who have had the experience of being pregnant and giving injections, and the whole song and dance. If there is someone whose suffered hemorrhage I would love to chat with them, too.

It's nice to know you're not the only one.

Thanks for reading...

Julie


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## whateverdidiwants (Jan 2, 2003)

I saw the new Hem yesterday and he told me that based on my history not only do I need to have 2 shots a day during pregnancy, he wants to up my dosage to 60 mg of Lovenox in each shot.

I'm kind of torn on finding a new gyn. On one hand, I'm unbelievably pissed off because I truly feel that if I had been on 2 shots of 40 a day I wouldn't have miscarried last month. However, what he told me (only one shot because of no previous DVTs or embolisms) seemed pretty standard practice now according to what I've read here AND there aren't many VBAC friendly gyns in my area. We're not going to ttc until next month so I have time to think about it.

What would you do?


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## mauraweb (May 25, 2005)

whateverdidiwants, I am in a similar boat. I have no previous DVT/embolisms and was on 40mg lovenox once/day and miscarried at 6.5 weeks in March. For the next try the perinatologist wants to up me to 40mg twice/day. So I'm thinking that it's their standard protocol to start off with only 40mg and only increase it if that's not enough to prevent a miscarriage. I agree, very frustrating.

My advice would be to evaluate whether you want to switch docs based on how your well whole team (you and each of the docs) plays together. I am not 100% thrilled with either of my docs. The perinatologist has a huge ego, and he never wants to hear anything about my charts, temps, etc. But I'm keeping him because he's worked with my OB before and I do like her (though her office staff is terrible). Their division of labor is pretty black and white, though: the peri is concerned with the fetus and my OB with me. My OB has had no say whatsoever in the thrombophilia treatment -- in fact, I didn't see her at all last time from when I had a positive preg test til when I had to get the D&C.

I've actually thought about switching OBs because of her staff, but she delivered my son (who I had pre-thrombophilia) so I feel like she's my best chance for a non-medicated, vaginal delivery. The perinatologist would have me sectioned at 38 weeks if he could.

Sorry to ramble -- hope this helps.


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## whateverdidiwants (Jan 2, 2003)

Quote:

So I'm thinking that it's their standard protocol to start off with only 40mg and only increase it if that's not enough to prevent a miscarriage.
Thing is, I had already had a successful pregnancy using 2 shots of 40 a day. I don't understand the desire for docs to screw around with dosages that have been known to work, yknow? In my dd's pregnancy, I had an OB that disregarded orders that my Peri had given (to put me on antibiotics for a cervical infection) and a Peri that I loved but seemed to think that seeing a Hem as well was overkill. Now it seems like I have an OB that thinks he's a Hem. It's like the docs don't want to admit that there are things that they aren't an expert at. A big part of my frustration is being new to the area and not being able to find out these doc's professional reputations (as opposed to what their patient's think of them. I've known LOTS of doctors who had great bedside manners but were horrible clinicians). I spent 8 years working at a hospital so I knew everything about my previous doctors, including which ones the *other* doctors went to when they needed to be treated. I don't have that luxury here so I feel like I'm flying blind.


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## mauraweb (May 25, 2005)

I completely sympathize. I have picked way too many doctors from my health insurance directory -- it can be really hard to figure out who the good ones are. Looks like I am in that boat again too. I called my perinatologist yesterday to make a plan to ttc next month only to find out that he no longer accepts my insurance, argh.

Anyone here in New York City and know a good perinatologist? I'm in Brooklyn but will go to Manhattan if need be.


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## bunky (Aug 22, 2006)

Hello Everyone
First I would like to say that im happy to find a forum for women with blood clotting disorder.Two months ago i tested positive for two blood clotting disorders(not sure of the name of them).This was only after i was diagnosed with central retinal artery occlusion.Three months before that i had a stillborn at 20 wks.Right now im on 4 mg of coumadin and i was wondering would i need to continue the coumadin if i were to get pregnant again or would they have to switch me over to a weaker blood thinner(lovenox,heperin)?


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## whateverdidiwants (Jan 2, 2003)

Coumadin is NOT safe for pregnancy - it crosses the placenta. You would definitely be switched to an injectible blood thinnner. If you're thinking of ttc I would talk to your hematologist before you do anything; they may want to change your meds before you even attempt to get pregnant.


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## orangefoot (Oct 8, 2004)

:

Don't worry about injectable Low Molecular Weight Heparin being 'weaker'; it works in a different way to coumadin but is not less effective in normal venous clotting problems.


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## NoHiddenFees (Mar 15, 2002)

Quote:


Originally Posted by *whateverdidiwants*
Coumadin is NOT safe for pregnancy - it crosses the placenta.

and is KNOWN to cause birth defects. If you become accidentally pregnant while on coumadin, exposure _very_ early on shouldn't be a problem, but you'll want to switch as soon as possible. This happened with DD2 and IIRC, I was on lovenox within 14 days of ovulation.


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## HoosierDiaperinMama (Sep 23, 2003)




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## neverdoingitagain (Mar 30, 2005)

again!
How about an update everyone?
(I'm doing great, btw, but we nixed the ttc plans for now)


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## tenecwalker (Jul 24, 2005)

I'm starting to wonder if this might be a problem that I have. I'm going back to the RE on wednesday to discuss what testing we might do.
Here's a little background.
I'm 23 years old. I've always had heavy periods. I seem to bruise easily.
I had 1 m/c in 02/04 (maybe one in 11/03). Then I had a baby boy in 02/05.

The pregnancy seemed to go well, until the end. I thought I had ICP due to severe itching with no rash & upper right quadrant pain (not diagnosed b/c they did the wrong tests) I was induced at 39w3d due to high blood pressure. His placenta had several clots in it and part of it had died. I had lots and lots of bleeding after his birth. I tore badly, and there was a giant puddle under me from the blood. The bleeding didn't seem to stay severe for long though.

ttc #2 for 9 months. Got pregnant in 09/06. m/c in 11/06. Very severe bleeding (over 20 pads in 2 hours) went to ER. Passed baby while in ER. Bleeding slowed.

I'm just wondering if it is possible to carry a baby to term if you have a clotting disorder and no treatment for it?


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## whateverdidiwants (Jan 2, 2003)

Quote:


Originally Posted by *tenecwalker* 
I'm just wondering if it is possible to carry a baby to term if you have a clotting disorder and no treatment for it?

Sorry to hear of your losses.

According to this link there can be up to 90% loss rate in a woman with untreated antiphospholipid antibody syndrome. I'm sure that the rates can be variable dependent on the specific clotting disorder, but I don't think it's a risk I'd be willing to take.


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## orangefoot (Oct 8, 2004)

Its good that you are seeing an RE. Get a thrombophilia panel done and find out what you have in the way of clotting problems then you can see a hematologist and make a plan.

All the research shows that women who have had losses have much better outcomes when treated during pregnancy. Do find out more before you ttc again to save yourself heartache and potential damage to yourself as well.
Here is a good study to read to see the benefits.

As for me, Frida arrived safely on 2nd Sept. I'll update later when I have more than one minute's quiet!


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## tenecwalker (Jul 24, 2005)

I guess I should clarify. I'm not looking to go untreated in a future pregnancy. I was wondering if it was possible that I have a blood clotting disorder when I have a son and I wasn't treated during his pregnancy. From what I have read it seemed like it was impossible to have a successful pregnancy with a blood clottting disorder. Thanks for the input.

orangefoot-Congratulations!


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## 5thAttempt (Apr 22, 2006)

It is possible to have a sucessfull pregnancy untreated. I had ds 9 years ago w/o any problems, but then had early 4 m/c while trying for #2. Then I was diagnosed with blood clotting disorder.
I am 38 w pregnant now while on lovenox/heparin. Apperently these problems intensify with your age.


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## whateverdidiwants (Jan 2, 2003)

5thAttempt - I dont think I'd say you were untreated for your first pregnancy though. It could just be that you hadn't developed the clotting disorder yet. AFAIK, these disorders can develop at any time.


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## tenecwalker (Jul 24, 2005)

Thanks for the info. I'm going to my dr appointment right now


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## 5thAttempt (Apr 22, 2006)

Quote:


Originally Posted by *whateverdidiwants* 
5thAttempt - I dont think I'd say you were untreated for your first pregnancy though. It could just be that you hadn't developed the clotting disorder yet. AFAIK, these disorders can develop at any time.

From what the dr told me mine is usually inherited, so it was there, I just did not know about it. However I do not know if I got it from mom or dad since they are not aware of any, meaning they did not had any reason to get tested, since they did not have any symptoms.


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## orangefoot (Oct 8, 2004)

I had three untreated pregnancies but have had no losses. My luck ran out with getting a DVT. PSD is hereditary but I wasn't diagnosed until after I had my first child. I know its from my dad and unfortunately it was the root cause of his death.


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## greengrey (Nov 8, 2006)

Hi everyone!

Cross Posting from another thread - Chilliepepper recommended this one.

My name is Alexandra (Alex for short) and I am 30 years old and this is my first pregnancy. I am about 4 weeks along right now- LMP time, 2 weeks post O.

I come with a whole bunch of not so fun genes (hetero Factor V Leiden, hetero MTHFR, slightly elevated AA's etc) and have a prior history of DVT in my left arm at the age of 28 while being in my 10th year on BCP. I have been told I have to be on heparin throughout my entire pregnancy.

Right now I am stressed right now b/c I contacted my hemotologist's office yesterday to see when I could get in. His receptionist was supposed to call me back and let me know if the doctor wanted to see me before Jan 9th (an appt she had free then for me).

She never did and by the time I called them I got a horrible answering machine message that read "The office will be closed until Jan 2". At that point I'll be at 6-7 weeks and I've heard so many horror stories of early miscarriages b/c of being unmedicated by that point.

All I am doing now is drinking my purple grape juice, taking my nightly baby aspirin and garlic and basically praying that nothing goes wrong till I can get in to see him. If there anything I can do in the meantime aside from waiting and seeing, I am very open to suggestions.

If I can ask, how many weeks along were you when you started your heparin and/or lovenox injections?


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## HoosierDiaperinMama (Sep 23, 2003)

Quote:


Originally Posted by *greengrey* 
If I can ask, how many weeks along were you when you started your heparin and/or lovenox injections?

In my case (which is not the norm), I didn't find out I had clotting disorders until I was 13 weeks into my 3rd pregnancy which ultimately ended in a m/c. Lovenox was started at 13 weeks but it was too late. I have no way of knowing if it would've made a difference or not in my 3rd pregnancy, but the advice from the specialist I saw was to start it immediately w/the next pregnancy.

Are you seeing a regular OB or a peri? I would think they would get you in immediately if they know your history or at least call you in a prescription to get you started.


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## orangefoot (Oct 8, 2004)

Hi

I started at 5 weeks post ovulation and that wasn't considered late. See if you can get to a hospital and see a high risk OB or peri in the meantime.

I have been lucky in the past and had totally untreated pregnancies I wish you luck with yours until you can see a peri or OB.


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## whateverdidiwants (Jan 2, 2003)

I have to start the injections within days of ovulation, otherwise the pregnancy won't stick. (I had 3 early miscarriages - 10 weeks, 5 weeks, 4 weeks - before being diagnosed, one successful pregnancy, and then 2 more miscarriages - an unplanned one that ended at 5 weeks, and a planned one that ended at 4 weeks because I was on too low of a dose of Lovenox).

I second the recommendation that you try a local hospital to see if you can get in with a peri asap. Heck, I'd even go to the ER to try to get Lovenox to tide me over, but that's just me based on my experiences.


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## shannon0218 (Oct 10, 2003)

One thing you can do now especially since you are MTHFR, is to start on high dose Folic Acid. I take 5 mg a day but for that mutation your peri may ultimately put you even higher than that, I'm at that dose because I'm also on prednisone.
I'll third or fourth the idea to go to a walk in clinic or a hospital and just tell them flat out that you NEED a prescription for lovenox or heparin, if they say they can't tell them to call the peri on call, if they refuse ask them if they'd be willing to put it in writing in case you clot between now and then--miscarriage aside, mom is in danger during pregnancy as well.


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## greengrey (Nov 8, 2006)

Thanks for all your answers!

I don't have an OB or Peri yet b/c this is my first pregnancy. The timing is just insanely ironic b/c my family doctor and my hemotologist are on vacation right now till January. My family doc was going to send me to a high risk OB as soon as I got pregnant. Up until recently they were still debating on whether or not I'd need the injections. I basically insisted upon them.

Do you think the ER would treat this seriously b/c it's technically not an "emergency". I mean in my mind it is, but can a doctor who has never met me prescribe me heparin without my ongoing hemotologists approval?

As for extra folic acid, I do take extra - 3 mg amongst a slew of other supplements like B vitamins, prenatals, etc. I am hetero not compound hetero so my risks of MTHFR affecting the Factor V are minimal according to many tests. It's the other stuff I have to worry about.


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## shannon0218 (Oct 10, 2003)

Well, I'd look at it and present it this way. Pregnancy hormones place someone with ANY blood clotting issue at increased risk of DVT and PE. That you have multiple clotting issues (so do I, I know your pain) means that yes, at this point you are in danger. If they waffle ask them if it would be better to just return when your life is in danger. Especially considering the fact that you've actually HAD a previous DVT--I'm actually REALLY surprised that with that many factors along with a previous clot that there was any debate at all as to whether you are placed on heparin-I can see a debate over whether to use profylactic or therapeutic dosing but not debate over whether it's actually needed or not.
My only suggestion would be to go at a civilized time, there will be both an ob and a hemo on call at any large hospital (smaller hospitals may only have an internist--but they can also prescribe heparin) but it may require paging them or calling them at home during the holidays--so in the interest of not making yourself a pain in the butt when it's not technically an emergency, go in at a nice time of day








I'd go in and say "My hemo insisted I start thinners at positive HPT but he's away right now"


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## chilliepepper (Oct 14, 2005)

Hi, I'm also cross posting here from the pregnancy board because this is apparently where the answer people are!









I'm 31 weeks pg. and have been on Lovenox since week 22 due to being diagnosed compound heterogenous for MTHFR. I should have started much much sooner but we didn't know about it due to very frustrating miscommunications with my perinatologist. Thankfully I was able to carry my first pregnancy to term despite the blood clotting disorder (so to a previous poster: yes, it's possible to carry a pg. to term with an untreated bcd---at least the MTHFR one, I don't know about the others---in fact, my mom just got tested and came up compound **** for MTHFR after having had 4 kids earlier in life, no miscarriages, and no pregnancy or delivery complications), but during my labor with DS#1 18 months ago, I developed severe pre-e and HELLP Syndrome and they think the MTHFR issues may have been a factor in that. DS was also born with signs of IUGR---5lbs. 5oz.

I'll be switching to Heparin at 36 weeks, and have been trying to decide if I want to go along with the standard scheduled induction protocol. I asked my perinatologist about it, and he said the main reason they do it is because you can't have an epidural if you've injected recently (how recently depends on the anesthesiologist), and also because (as mentioned before) if you have to have an emergency c/s, they have to do a general rather than a spinal.

Here are my thoughts on this at this point, and I'd love to hear what some others think on this because I'm really trying to sort things out (for obvious reasons---only a few weeks left to decide!):

I really don't want an epidural anyway, so I'm not real concerned about that issue. And even if my labor starts immediately after injecting and it's as h3llish as last time, I expect (based on experience from last time) I can put up with it for long enough for the Heparin to wear off before I get the epi---if I really need one. And if my labor goes fast, I expect I can get through it without the epi.

As for the emergency c/s issue, while I doubt that will happen, if it does, again I'm sorta banking on it being long enough after I inject Heparin that hopefully they would allow me to just have the spinal. Worse case scenario, of course, is that I inject the Heparin and IMMEDIATELY go into labor and need an emergency c/s within a few hours after that. I think the odds are against that, but I'm thinking I'm willing to take that risk in order to avoid a scheduled induction.

My perinatologist said that excess bleeding from the uterus (hence a need for blood transfusions) really isn't a risk with Heparin, though I suppose he could be wrong. He did say that if I tear, there could be excess bleeding from that. Again, I guess I'm thinking that those things are probably unlikely, but I'm willing to assume the small risk in order to avoid the induction. Then again, I had transfusions last time due to HELLP Syndrome, so it's like been there, done that, got through it...so if it has to happen again I guess I will survive.

Thanks for staying with me through these long ramblings. I'd love to hear your thoughts on all this if you have any, because there may be issues I'm not thinking of. I'm still reading through older posts in this thread and I realize this may have already been discussed, so thanks for your patience.


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## 5thAttempt (Apr 22, 2006)

Hi, chilliepepper.
I just had a baby after many m/c. This is the first pregnancy of me being on lovenox. I switched to heparin at 38 w and I decided to go with scheduled induction 3 days before my due date. Here are my reasons:
There is a 25% c-section rate in the hospital I had a delivery. Anestesiologyst in my hospital (and I talked to 2 before I made my decision) told me that they will not do spinal unless it was at least 24h after last heparin injection and at least 36 after lovenox. It has to be general. My OB said that under general because all organs are shifted there is a big chance of complications such as vomiting into the lungs and choking dirung a c-section. Bottom line his personal opinion was that it is much safer to have c-section when woman is awake - means epidural or spinal block; besides you can see what is going on. Also, of couse there is a chance of bleeding etc. So, combination of opinions of OB and anastesiologyst's policies made me to make my choice of a scheduled induction. I must say that my OB and I have very special relationships that are going back many years and he was the one who encoraged me to do all testing for my m/c and he also encoraged me to try one more time before accepting 'I can not hold the baby thing'. Bottom line I respect his opinion a lot. Delivery went as smooth as it could possible be and I am very happy with my choice. Again, this was my decision and you should decide what is important for you.


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## Satori (Jan 30, 2003)

I was wondering if there's any moms here who's insurance doesn't cover lovenox or there having to spend a huge amount on it every month?


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## 5thAttempt (Apr 22, 2006)

Quote:


Originally Posted by *Satori* 
I was wondering if there's any moms here who's insurance doesn't cover lovenox or there having to spend a huge amount on it every month?

This was me during the first 2 months of pregnancy. My insurance picked up some cost, still I had to spend 800 a month for it. I talked to 2 different doctors and while they agree that there are some advantages of lovenox, heparin will do a job just fine. Both doctors agree that the difference does not worth 800 per month. You do need to stick the needle twice as much and you will briuse more, and it leaches a little more calcium out of you (be sure to take supplements), but it cost around 30-40 per month + the cost of siringes, you can get them very cheap. I switched to a different insurance after the first 2 month and with that I switched to lovenox.


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## shannon0218 (Oct 10, 2003)

CP, a big factor is whether you are on theraputic doses or prophylactic doses. It is MUCH easier to reverse the later, at theraputic levels there is a small risk of DIC if the body is placed under significant stress. (I almost died due to DIC after my last miscarriage, it was not fun) Basically all your body's clotting factors completely shut down at once. If not reversed very quickly it's often fatal.
Like 5th attempt though, I also had an ob I completely trusted. I had a scheduled section for a number of reasons--timing heparin was only one of them.


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## chilliepepper (Oct 14, 2005)

Thanks. Sorry...what is DIC?

I believe I'm on a prophylactic dose. That means preventative, right? My Lovenox dosage is only 30mg per day, and I assume my Heparin dose will be reasonably low as well.

Right...I was thinking I read something about being able to reverse the effects of Heparin, and that's another reason they like to switch to it late in the pregnancy. Is that true? What is it exactly that they do?


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## Satori (Jan 30, 2003)

deleted, guess I'll have to trash them. Anyone know how to do that safely? or there some place I can send them to do it?


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## NoHiddenFees (Mar 15, 2002)

I donated extras to my anticoagulation clinic on the condition they be given as "samples" to someone whose insurance wouldn't pay for them.


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## chilliepepper (Oct 14, 2005)

Cross posted from the "I'm pregnant" board...

I'm coming up on my induction date (about 3 weeks from now), and am still hoping for as "natural" a delivery as possible i.e. no epidural, no c-section etc. I've hired a doula with a very good reputation in our area, figuring I'll need all the help I can get if I'm going to get through labor on Pitocin with no epidural.

She has recommended that I start taking Evening Primrose Oil and Black Cohosh and drinking Red Raspberry Leaf Tea, in hopes that these things will help ripen my cervix prior to the induction so that a) maybe they won't have to give me any other cervical ripening agents and b) there will be a better chance of the Pitocin-induced contractions doing their thing.

I'm trying to find out if there are any contraindications between these herbs and the blood thinners I'm on (I'm compound hetero for MTHFR and was on Lovenox till yesterday and have now switched to Heparin), or if the herbs carry any sort of special risk for people with bcd's in general. I'm just not educated about herbal supplements at all. Of course my perinatologist takes the head-in-the-sand approach of "no herbs whatsoever for any pregnant women, there aren't enough studies to show that they're safe during pregnancy." Thank you, so very helpful. I wonder if I can put basil in my spaghetti sauce. Also, his response when I told him I'm still BFing my 1-year-old, was "not good." So obviously I'm having to separate the wheat from the chaff when it comes to his advice.

So have any of y'all taken any of these herbs during pregnancy? Are they ok for people with our type of issues?

Thanks.


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## whateverdidiwants (Jan 2, 2003)

I'm wary of most herbal stuff because of the clotting disorder. Are you under the care of a hematologist that you could ask? I ran everything I did/took by my hem first, and even let him override certain suggestions by my perinatalogist.


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## 5thAttempt (Apr 22, 2006)

chilliepepper,

I do not know about the herbs and I think that no dr tells you that they are OK since they are generally againt all additional meds. THese things being an herbs, does not change the fact they are medications, just naturally occuring.

I had pitocin only since we scheduled induction after I was dilated 1 cm and 50% effeced. You can ask you OB to check you first and then schedule your delivery. This way you do not need any additional things, just pitocin.

We did not schedule anything untill my cervix was ready. I did had to go to dr office 1-2 times a week for the cervix check when I was close to my delivery date. Once he detected some changes, we scheduled the thing, but not before.


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## AuroraB (Jan 10, 2007)

Hi, I am new here and have a lot of questions. Some of them I know and then I am sure there are a million more I haven't thought of yet.

I had 2 mc in a row this August and December. I had to fight through doctors to get testing done and finally know that I have aniphosholipid antibodies syndrome. I honestly don't even know what it is. I was told that I will need aspirin and heparin shots. In the thread it seems like everyone in on lovenex. What is the difference/is there a difference?

I am lucky that I get pregnant easy-I just to need to get one to stick!

What is MTHFR, APA, FVL, DVT and prothrombin?

Sorry I am so ignorant-this is all so new.

Does this mean that I will have to be induced and get a cs?
Am I going to be able to continue to work? My job is the health insurance and the house payment.

Please help, I am very nervous about the whole thing.

Thanks,
Aurora


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## whateverdidiwants (Jan 2, 2003)

Welcome, Aurora!

Quote:


Originally Posted by *AuroraB* 
I had to fight through doctors to get testing done and finally know that I have aniphosholipid antibodies syndrome. I honestly don't even know what it is.

I have APA too. It's an autoimmune disorder where your blood clots too easily. It's sometimes called "sticky blood". The way my hematologist explained it to me is that there are antibodies in your blood that make clots, and other antibodies that break them down. With APA, the kind that breaks down the clots are missing or defective.

Quote:

I was told that I will need aspirin and heparin shots. In the thread it seems like everyone in on lovenex. What is the difference/is there a difference?
Lovenox is a "low molecular weight" version of heparin. I'm sure someone else can give you a more scientific explanation, but I'll just say that Lovenox is preferred by most doctors because it's considered safer and comes in pre-filled syringes. It's also MUCH more expensive than heparin, so sometimes you have to fight with insurance companies to get it paid for.

Quote:

Does this mean that I will have to be induced and get a cs?
Am I going to be able to continue to work? My job is the health insurance and the house payment.
You'll probably have to get induced if there seem to be problems just because if you end up needing an emergency c-section and it's been less than 12 (some anesthesiologists say 24) hours since your last shot, you CANNOT have an epidural, you'll have to have general anesthesia.

APA itself is no reason to stop working unless you get a clot in your leg or something (which shouldn't happen if you're on blood thinners. I had to have a cerclage put in (that's where they sew your cervix shut) in addition to the APA, and I worked until a few days before I had my daughter (at 38 weeks).

Some things I found useful:
-Ice the area where you're going to do the shot 10 minutes before and 10 minutes after the injection. It will help with pain and bruising.
-Use arnica gel (can be found at health food stores) for the bruising. It made a huge difference for me in how quickly the bruises went away.

Good luck and please ask any questions that come to mind.


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## 5thAttempt (Apr 22, 2006)

Quote:


Originally Posted by *AuroraB* 
I was told that I will need aspirin and heparin shots. In the thread it seems like everyone in on lovenex. What is the difference/is there a difference?

Please help, I am very nervous about the whole thing.

Do not be nervous. Shots are not as bad as you think they are. I was very depressed about them at the beginning but at the end of the pregnancy they were just a routine.

Lovenox is more convinient and less bruising since you get it once a day instead of 2 times a day for heparin. It also takes less calcium from you, but you are not old, so just get an extra calcium supplement and you will be fine. Honestly, do not sweat the decision one over the other - whatever is you dr comfortable with - is fine. I was prescribed lovenox first, but my insurance covered just a little portion, my portion was 800 a month or so. After talking to a dr about it she said that 800 does not justifies the convinience, and I switched to heparin. Then after 3 months I changed my insurance and switched to lovenox which was 30 a month with a new insurance. At the end of the pregnancy I switched back to heparin. I had a baby 5w ago and still have bruises.

I second ice before the shot. I did just a minute or so, not 10 min. You can try what is working for you.

Unless you want an epidural - you do not have to be induced. However in case of emegency c-section you will have to have general. If you are OK with that (and there is a 25% chance that you will if you are delivering in a hospital) then you do not have to be induced.

Good luck with the baby!


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## chilliepepper (Oct 14, 2005)

So I've now switched to Heparin, and have a belly covered with bruises to show for it. I remember reading somewhere, maybe on this thread but I can't remember for sure, that when injecting Lovenox you should flick the air bubble to the end of the syringe that's furthest from the needle, so that the air bubble is the last thing you inject, forming a sort of seal that minimizes bleeding, bruising etc. Would that be true with Heparin too? When I draw the Heparin into the syringe, I do get some air bubbles. I can flick most of them to the top (nearest the needle) to form one big bubble, but no matter what I do I can't seem to shoot that air out the top. So I'm wondering if I should turn the thing over and flick it to the other end, furthest from the needle so that it will be the last thing to go in like with the Lovenox.

Does that make any sense at all?


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## orangefoot (Oct 8, 2004)

Ouch! I bruised worse when I injected heparin and I know many other people do too. I think it might be to do with injecting a greater volume of liquid so causing more trauma to the tissue.

If you can't get air out of the needle then I would get it all to the plunger end as you say then just not inject it. Make sure that you are drawing up the correct dose to start with not counting the air iyswim.

About the herbs; I'd steer cleer of the cohoshes but I am not sure about the tea as its a tonic for the muscle. I tried it for a couple of days but coudn't stand the stuff!!

I know they like to book things but is there a chance that you could go for the induction and if your cervix isn't favourable, cancel and go back the following week?

Here the first thing they do for induction is insert a prostglandin pessary to soften the cervix, then break the waters and then only use pit if needed. The pessary (applied once or twice) starts most people off without the need for a drip or cfm during labour.

Have you discussed the way they will go about the induction and how long they will 'let' you labour? Is there any way they can start you off slowly without going straight for the pit?

Rachel


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## whateverdidiwants (Jan 2, 2003)

I never injected the air bubble. My hem told me to flick the syringe and squeeze it out beforehand.


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## chilliepepper (Oct 14, 2005)

Quote:


Originally Posted by *orangefoot* 
I know they like to book things but is there a chance that you could go for the induction and if your cervix isn't favourable, cancel and go back the following week?

Here the first thing they do for induction is insert a prostglandin pessary to soften the cervix, then break the waters and then only use pit if needed. The pessary (applied once or twice) starts most people off without the need for a drip or cfm during labour.

Have you discussed the way they will go about the induction and how long they will 'let' you labour? Is there any way they can start you off slowly without going straight for the pit?

Rachel

There *is* a chance that I could go home if my cervix isn't favorable. I think it might even be a possibility that I could go home after the prostaglandin if it didn't do its thing, tho I'm sure they would have to "keep me for observation" for a while.

Now I'm doubting again whether I should do the induction at all, though. The main rationale they give is that the longer I wait, the more chance for blood clots to kill the babe. True, I suppose, but that has been true all along---why not just take him/her now? (I know the answer to that is we have to wait till we're confident the lungs are mature.) It's just I've never had a clot in my life, and it seems like if I'm on the almighty Heparin, shouldn't the chances of that be pretty low?

I was rereading this thread last night and it sounds like for some people and some doctors, induction really isn't even discussed if the mom is on Heparin.

I just keep praying I'll start labor on my own before the induction date!


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## 5thAttempt (Apr 22, 2006)

Chillipepper, I always got rid of the bubble when I did heparin and never injected one.

One thing for the bruises - I tried a thinner needle (25G), it helped. However I am 6 w after my last injection and I still have bruises. They are fading, but slowly.

As for induction, remember that we all use the same medication for different disorders. For some women induction is nessesaty, for some is not. What is good for one, not good for the others. I can not give you an advice on skipping induction but I would work with you OB on trying to schedule it after your cervix changes.


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## AuroraB (Jan 10, 2007)

Orangefoot and 5th attempt, thank you for your responses. Dh and I have decided to wait until March to try to give ourselves some to time to "get it together" You were both very encouraging and I am now looking forward to my next doc. visit.

I read an article in a midwifery magazine that was about herbs to treat clotting disorders. I will ask my doctor (she does western meds. and is an herbalist) about them. I know she want me on lovenex or heparin but I have had blood clots kill 3 babies. Maybe it would be ok for those of you who have never had a blood clot. I don't know. The article said that none of the herbs have been tested or proven-it would be a gamble. I might use the diet and herbal suggestions to supliment my injections but I just can't take the risk of going full herbal/diet. Garlic, ginger and dark grape juice are supposed to be good for us. When I am past wanting to make babies I will use those diet suggestions for the rest of my life to prevent possible blood clots in the future but for now --I want it all! I want my baby!


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## MelMel (Nov 9, 2002)

just found this thread, don't have time to read it now, but am subscribing.

my dh has a Protein C deficiency, and my dd and ds will possibly as well. I am concerned since my dh developed a life threatening clot in his leg at 18....very young. It was rare and unexpected and the problem was made critical by constant misdiagnosis. So I have to be extra cautious if my kids show any of the signs my dh had. I want to know how to protect my dd, as it is possible if she has this she could miscarry when she is older and becomes pregnant, I believe.

hopefully this thread will have alot of information and resources for us.


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## AuroraB (Jan 10, 2007)

Is anyone still on this thread? I have been on TTC after a loss. There a lot of ladies there. I am TTC and have to start heparin injection 4 days after my temp. rise. I am so nervous about missing the right time that I can't sleep and keep waking up before my waking time. Are there any charting experts here that can offer some advice? http://www.fertilityfriend.com/ttc/index.php

MelMel - sorry, I don't have any answers for you - this is all new to me

thank you
much love
Aurora


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## AuroraB (Jan 10, 2007)

Is anyone left on this thread? I have started the injections and am having a hard time. They are soooo painful. I am using heparin. My doctor is fearful of lovenex being new and the possiblity of it crossing the placenta. Does it hurt less? I have tried ice before and after - but holy mama it still hurts so much. I have tried heat the last couple of times. There just doesn't seem to be a way to avoid the pain. I keep injecting slower and slower. I took 7 minutes my last shot.

Any tips from you strong women who endured this?
Aurora


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## airmide_m (May 8, 2006)

I haven't had a chance to read the whole thread yet (it's next on my reading agenda!) but I hope you don't mind if I go ahead and post.

I've been hearing a lot about Von Willibrands and that it can cause incredibly painful periods and heavy flow (both of which I suffer from). I also bruise really easily. I've been thinking I should get tested, and I have a doctor's appointment tomorrow.

I also have low progesterone, hashimoto's hypothyroid and asthma. I eat an ovo-lacto vegetarian diet. Not sure if any of those would be things to consider.

So I'm wondering, what sort of tests should I ask the doctor for? We're currently TTC for the first time, and I really want to make sure I've got everything sorted through and hopefully avoid losing any babies!


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## smeta (Dec 15, 2001)

Sorry to hear you are having a rough time Aurora









I did Heparin w/ my first and Lovenox w/ my second pg. I remember them both being painful. Although I think the perk w/ Lovenox is that it lasts longer - I only did injections once/day instead of twice. I think most drs. feel it is safe as Heparin. Personally, I trust Heparin more.

Are you using pre-filled syringes? If not, maybe you could try switching to do different syringe. I remember there were some that the needles were smaller or something. Also, what about having your dh do the injection, could that help at all?

I hope you find a little relief soon!


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## 5thAttempt (Apr 22, 2006)

Quote:


Originally Posted by *AuroraB* 
Is anyone left on this thread? I have started the injections and am having a hard time. They are soooo painful. I am using heparin. My doctor is fearful of lovenex being new and the possiblity of it crossing the placenta. Does it hurt less? I have tried ice before and after - but holy mama it still hurts so much. I have tried heat the last couple of times. There just doesn't seem to be a way to avoid the pain. I keep injecting slower and slower. I took 7 minutes my last shot.

Any tips from you strong women who endured this?
Aurora

Yes, change the needles. What gauge needle do you use? My syringes for heparin were very thin and it was less painful then lovenox (pre-filled syringes were thicker). Despite the fact that it was less painfull, I had more bruising from heparin - go figure.
Do not worry about heparin vs lovenox - they are pretty much the same.


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## AuroraB (Jan 10, 2007)

Thank you ladies for your responses, I wasn't sure if anyone was still visiting this thread. I am using 30 gauge needles/not pre-filled. The needle going in doesn't hurt too bad but if there is a smaller needle I definately would want it. It is injecting the liquid that hurts so much and the bruising afterwards. I have welts and the injection sites bleed when I am in the shower and sometimes when I am sleeping.
My dh pushed the liquid in faster and that hurt a lot more but left less bruising - I don't know if that was just coincidence. I have given myself 2 injections that didn't bruise but I have repeated that same process and have had horrible bruising and pain. I don't know what it is. I wonder if I am getting into some muscle. I am a small person and can't really get a good pinch on my leg. Did you hold the pinch the whole time or let go after the needle was in? I was wondering if that would make a difference.

Beyond the pain I just feel so gross. My legs are lumpy and bruised and then I have little holes I am bleeding out of. And I am supposed to have a lot of sex - yah- with the lights out!

Airmide - I don't know- I didn't have any symtoms, in fact both my preg. I was told I was terrific and the baby was great and then surprise - we were not ok. Good luck to you, you seem well prepared and on top of your health. Just get a doctor that will listen to you and not dismiss your concerns - that is my only advice to you.

5th Attempt and Smeta - thank you again. I felt alone in the miscarriages and found MCD chat and then felt alone in my condition before being sent to this thread. Advice from family and friends is one of two- "You can do it", or "I can't believe your doing that"

8 days to my expected period - got my fingers crossed. If I am preg. I know I can finish this. If not, maybe you ladies can convince me to try again.


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## 5thAttempt (Apr 22, 2006)

I used 30g and found it to be thin enought.
BUT: I did my injections in the tummy!!!!!! Not the leg!!!!! Can you ask you dr and see why he told you to do it in the leg? Majority of people here are doing it into the tummy too...


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## whateverdidiwants (Jan 2, 2003)

I did my shots in the belly, and then when that got too bruised, it was in the butt (oh my, that sounds bad).


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## WinterBaby (Oct 24, 2002)

Belly here too - never heard that leg thing. I'd grab an inch of fat off my hip bone region on my belly and pop the needle in. Okay, that's a lie. My husband would ;D


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## mk_1217 (Mar 3, 2007)

Due to a history of blood clotting disorders, my ob/gyn decided to run some blood tests and found that I have a single copy of the A1298C mutation. I have read the other posts on MTHFR and am wondering if this means that I have a heterozygous MTHFR? And if so, does this mean anything for me when (hopefully) I become pregnant? Also, what does compound homozygous or simply homozygous mean? That you have 2 copies of the A or C mutation or one of each?

Thanks in advance for your help!


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## OakBerry (May 24, 2005)

I had a partial abruption with my first and only child at 40 weeks. Ds was ok, thank God, but I bled heavily during delivery and for several weeks pp. I've always had heavy clotty periods and bruise easily.
My sister had a complete abuption with her second child, ended up needing an emergency C-section as well. My mom also had a partial abruption, like me, with her first pregnancy. But she had 9 other healthy pregnancies and one miscarriage.
They did do some testing for clotting disorders because of this, the lupus antibody, anticardiolipin antibody, and some others. They were negative though. Now, reading this thread, I'm thinking I may need to investigate this more!


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## AuroraB (Jan 10, 2007)

mk - sorry I am not familar with that. Please let us know what you find out and I wish you the best.

As for me, I got my AF today. I cried for a while and now since I have been a super strict diet to prevent preclampsia I am gorging on chocolate cake and ice cream. My plan it to stay on a sugar and caffeine high as long as possilbe. I can't think about trying to get up the courage to start these shots again in 2 weeks. Chicken as I am - I just want that prize too much and know I will do it again. I never thought I would be this baby crazy.


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## SaraMama (Sep 19, 2004)

Hi All! I just found this thread thanks to another mama pointing it out to me!

I have Antiphospholipid Syndrome. I had HELLP syndrome with all three of my pregnancies. I delivered at 23 weeks, 34 weeks, and 37 weeks respectively. My firstborn was stillborn due to being such an early preemie. My 2nd and 3rd babies are perfectly healthy, wonderful little boys now.

I had a DVT in my left calf after my 3rd baby was born, in 2005, and then had a pulmonary embolism about 2 weeks later. Since then I've been on Coumadin and will be for the rest of my life.

The reason I'm posting is that I'm looking for suggesitons about excessive perspiration. I'm having trouble with it and was told by my MD that it is a side effect of the Coumadin. It is particluarly bad in the areas of my arm pits and groin. My MD suggested wearing panty liners and using powder when I asked her for suggesions... Neither of those options are for me.

Just wondering if anyone else has this issue and if you've found a solution or at least something helpful to make it more tolerable.

Thanks!


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## AuroraB (Jan 10, 2007)

Well, I made it the starting gates - I am pregnant. I am so happy to take the shots now that I know every shots helps my baby. I am on shakey ground - I am now on progesterone too .... but fingers are crossed and I am very excited and hopeful.

I gave myself a shot in my tummy yesterday ( I have been using my tummy for a few weeks now without problems) and my whole side is a little swollen and super tender. It hurts all night and all day. I put ice and heat on it and angelica gel on it.... What could have I done to make it hurt so bad? Anyone else have this occurance? I have been giving shots in my other side since - none have reacted like this. Should I be worried or will it just go away .... and how long will it take? It really hurts.

Saramama - sorry, I am on heparin and can't help with answers about C. That sounds really uncomfortable and annoying - I hope it gets better for ya


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## orangefoot (Oct 8, 2004)

Congratulations Aurora!

You might have scratched a nerve in your belly skin or scraped a little vein with the needle or just moved the needle too much. Things can go well for a while then you get a real doozer which hurts for a day or so.

Try to keep as still as you can when injecting because jiggling around causes more trauma to your skin and can make a bad bruise. I used to hold they syringe like a pencil with my thumb and middle finger then push the plunger with my forefinger as pushing with my thumb always seemed to move the needle around too much.

Sara - I have taken coumadin for a couple of stretches but not had any differenc in my perspiration. Have you googled a bit to see if there is anynoe else out there with it? Docs are unhelpful sometimes aren't they? I'm sorry I don't have an answer for you.


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## erika978 (Feb 25, 2007)

Hi all. I have been diagnosed as heterozygote for factor V Leiden. Luckily the rest of the clotting bloodworks came up clear.

In 1995, when I was 17, I suffered a very large DVT in my left leg and was on warfarin for 6 months after spending 10 days on unfractionated heparin. A few weeks later, the doctors were very surprised to see that my clot had completely dissolved. However, I have permanent damage to my leg. Don't you just adore the support stockings you have to wear









I also suffered from infertility and wondered if factor v had anything to do with it. I have PCOS and that was seen as the main reason for the infertility. But sometimes I wonder if I had a few miscarriage along the way. There were 2 specific incidences that have always got me wondering but since I just couldn't bear to see anymore negative tests, I did stop taking tests for ages (until I got pregnant with little miss).

O the heparin shots are FUN!







I started off on my tummy and ended up around my hip. And I have wonderful photos of spectacular bruising on my preggo belly. I call them my "hard won war wounds". The day I took my last shot, we had a little party at home. I even had some wine (once DD had fallen asleep







). It was a great day. But in the end, each shot kept me alive and healthy and my baby alive and healthy. So it was all worth it.


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## AuroraB (Jan 10, 2007)

Thanks for the info Orangefoot - I think I did get a nerve. I prob. did move around too much - it was the first time I tried to do it at work. It is really hard to relax there. I have to keep 8 hours between .... and I can't just go home so I am trying to get used to it. Every time someone knocks on the door I get tense and then just telling them to come back later makes my tummy move and prob. my hand too.

Erika - thanks for sharing your happy ending. I have a long way to go and am still more nervous than anything. I don't know about the infertility with clotting disorders - but mine is not the same as yours. I have antiphospholipid antibody syndrome and have no prob. getting preg. just a huge prob. keeping the baby alive.

Has anyone been put on special diets? My doc told me I had a high risk for pre-eclampsia because of my condition and eat 9 fruits and veggies a day to prevent it. I found online that protein and milk are supposed to prevent it too. I am also avoiding sugar and foods high on the glycemic index.


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## erika978 (Feb 25, 2007)

Btw Aurora, I meant to say congrats on your pregnancy







I don't know about the diet but I have a friend who swears by 9 a day. Keeps her full up and very healthy.


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## Alcyone (Apr 27, 2007)

.


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## mamanurse (Jan 22, 2006)

Hi All









I'm slowly reading everyone's stories in this thread. Thanks for sharing and I look forward to reading the rest.

My name's Jenn and I've been diagnosed with lupus for 8 years. I've only had one major flare-up and that was when I was first diagnosed and had probably been sick for almost 3 years. I've had two surprise pregnancies in the last year that have resulted in two miscarriages. My OB/GYN and rheumatologist both recommended anticoagulant studies due to my SLE diagnosis.

So far, I've had a prolonged PTT and a positive lupus anticoagulant test. I'm awaiting results of my anti-cardiolipin antibody and ABG1A tests to confirm a suspected diagnosis of antiphospholip antibody syndrome.

Apparently, this is somewhat common in people with lupus and am a little peeved I wasn't tested earlier.

My next question is regarding specialists. For the time being, my rheumatologist is handling my bloodwork. After I get the results of my other tests, I'm going to make an appt. with a hematologist. Does anyone here see someone other than a hematologist for their clotting disorder?


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## Baby Makes 4 (Feb 18, 2005)

Hi








HoosierDiaperMama pointed me over here from my Lupus Anticoagulant thread in the Pregnancy loss forum. After 2 miscarriages this year (and a couple more a few years back) I finally got some testing done.

I came back positive for Lupus Anticoagulant and I am still trying to figure out what that all means to me. The OB/Fertility doctor I saw told me not to get pregnant until I am retested in 10 weeks. He says if my next test also comes back positive then I can proceed with TTC and take asprin to thin my blood.

I am a bit confused as to what this test actually means, why they are making me wait and redo it and whether there are any other health implications for me. I will make an appointment with my regular doctor to discuss it all.

Any info you ladies have would be lovely









Thank you


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## SaraMama (Sep 19, 2004)

Quote:


Originally Posted by *mamanurse* 
My next question is regarding specialists. For the time being, my rheumatologist is handling my bloodwork. After I get the results of my other tests, I'm going to make an appt. with a hematologist. Does anyone here see someone other than a hematologist for their clotting disorder?

Now that I'm no longer having babies, I see a hematologist that manages my Coumadin.

When I was pregnant I was considered high-risk and saw group of Maternal-Fetal Medicine specialists. One doctor in particular specialized in Antiphospholipid Syndrome and Pre-E/HELLP Syndrome, so I saw him the majority of the time.

I'm not sure where you are, but if you're in Kentucky, I can give you their names and number.

HTH!


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## mamanurse (Jan 22, 2006)

Quote:


Originally Posted by *SaraMama* 
Now that I'm no longer having babies, I see a hematologist that manages my Coumadin.

When I was pregnant I was considered high-risk and saw group of Maternal-Fetal Medicine specialists. One doctor in particular specialized in Antiphospholipid Syndrome and Pre-E/HELLP Syndrome, so I saw him the majority of the time.

I'm not sure where you are, but if you're in Kentucky, I can give you their names and number.

HTH!









I have a perinatologist that I like out here in Oregon, but I thank you kindly. I am looking for a hematologist, though.


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## laurelavenue (Dec 29, 2006)

Hi to all.

I am 25 weeks pregnant with my 4th child. My last baby was born ten years ago, and was born with primary pulmonary hypertension of the newborn after what seemed to be a perfectly normal pregnancy. He spent several weeks in the NICU but is a perfectly healthy kid  No one could ever explain his surprising diagnosis.

Fast forward ten years. I am 39 and my second husband and I are trying to have a baby. I had three first trimester miscarriages before my midwife tested me for genetic issues. It turns out I am positive for MTHFR as well as PAI 4/g/5g mutations. She referred me to a perinatologist, who put me on metanx (like folgard) and baby aspirin.

I am now 6 months pregnant with a healthy baby girl and have had no complications. I have had numerous screening ultrasounds to make sure the baby and my placents look good. I am seeing a certified nurse midwife for my care, with back-up if needed from my perinatologist. I am planning a hospital waterbirth attended by my midwife.

Here is my question: I have heard from many other MTHFR OB patients online that their doctors recommend induction at around 38 weeks to prevent possible placental deterioration or stillbirth. My doctor says this is not necessary, but some of these women insist that their physicians say that this is standard protocol for MTHFR patients.

DO any of you have an opinion on the necessity of early delivery for MTHFR patients? All thoughts and info very welcome.


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## orangefoot (Oct 8, 2004)

I have a slightly unpopular opinion of the early delivery thing for blood clotting disorders so ignore me if you want.

In my case (Protein S Deficiency) it is certainly true that no treatment in pregnancy can result in any situation from early loss to late loss and still birth as well as DVT or PE.

If treatment during pregnancy is believed to prevent early loss then it must also be believed to have the same effect on preventing late loss. In a treated pregnancy I really don't understand the need to take babies early if all is well.

Standard protocol for 'problem pregnancies' can often seem to be the equivalent of 'Let's intervene as much as possible so no-one can criticise us for not doing anything' That's great if intervention reassures you but not if it concerns you.

Another thing to consider is that docs will say that 38 weeks is full term, but they have no way of knowing how long your babe was planning to grow inside for. If he or she wants to be a 42 weeker then birth at 39 weeks is not a good idea for them. If term was 38 weeks then all babes would come then wouldn't they?

I have been reading clotting forums or about 4 years now and some of the babes taken at 38 weeks have little problems at birth needing extra care which indicate to me that maybe they weren't quite ready.

Obviously you need to discuss with your doctor and explore your own feelings about this then make a decision which you feel comfortable with.


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## 5thAttempt (Apr 22, 2006)

I think that the most important thing when having a possible 'problem' pregnancy is to find a doctor/care provide you can trust. Sure, message board and forums are nice but sometimes they are scary too since they could give you too much info (that might not apply to you by the way). IMO you should listen to your doctor/midwife, since he is the one who observes you. She/he thinks that everything is fine and there is not reason to get the child earlier. Trust me, if she whould think otherwise, she whould tell you that (even just to cover her ass). I am sure that you will get a very close monitoring later on.

PS I personally had my baby 3 days earlier before my due date. We did not make any decisions untill a day before. But we did discussed all possible scenarios a lot, so I was not in for a suprise. The day before I was scheduled for induction he felt that this was time when risk of my problems outweighted slightly premature delivery. And I was happy with how everything went.


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## orangefoot (Oct 8, 2004)

Quote:


Originally Posted by *5thAttempt* 
Sure, message board and forums are nice but sometimes they are scary too since they could give you too much info (that might not apply to you by the way)

You said this so much better than I would have which is why I didn't say anything at all


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## Megan73 (May 16, 2007)

I'd be grateful for folks' thoughts.
My baby, Georgia, was stillborn at 39 weeks in March after a trouble-free pregnancy (no high blood pressure, measuring correctly for dates etc.) and delivery.
The obstetrician who was there when I arrived with the midwife ordered a battery of tests that determined Georgia died of a massive fetal-maternal hemorhage. She was otherwise perfect - all 8 lb., 1 oz. of her.
But the tests also showed a protein S deficiency. I hazily remember the doc saying my level was 57 when it should be twice that. He said tests three months post-partum will confirm whether there is a problem. There doesn't appear to be a family history of blood clots.
I'm now waiting to see a hematologist at the end of June - and worrying endlessly that I have something that could cause another baby to die. I just don't think I could survive it.
Thanks for listening,

Megan

PS - Please be kind if I've made some terrible error - I haven't posted to a news group since Freenet circa 1992.


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## orangefoot (Oct 8, 2004)

Megan, I am so sorry to hear that Georgia is not here with you and want you to know that despite your experience there is hope for you.

I have Protein S Deficiency (PSD) and have had 4 children. You absolutely can have treatment which will help you carry and birth a child. Please don't feel hopeless about the future. Go to www.protein.org.uk and register to read the forum there.

There are many of us who are living with PSD and if you take time to read the forum little by little you will find that there are many women who have been where you are now but after diagnosis and treatment have had successful pregnancies.

Your Protein S levels are lower during pregnancy and the OB was right that you will need to be re-tested to find out your true levels.

Look at the page called "Where is your doctor" and see if the hemo you are seeing is listed ther. If he isn't and there is another one close to you, make a note of that name so that if your hemo has little experience with PSD you can encourage him to talk with the other.

Best wishes to you
Rachel


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## 5thAttempt (Apr 22, 2006)

Megan, I have PSD too. PSD is a strange thing - you never know what might be affected. My problem was recurrent first trimester m/c's. I had so many of them before I found my diagnosis. I just had a baby (with lovenox treatment during pregnancy). I did not see hemo, just RE and OB later on. I never had blood clots either. It is not your fault and we do not choose our deseases.

There is a thread TTC after loss and pregnancy after loss. Come and join - you will find a lot of support there.


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## chilliepepper (Oct 14, 2005)

Hi again to all. Megan, welcome to the forums. You have come to the right place for support and for information on where to go from here. I'm so sorry about Georgia. I can't even imagine.

First, I guess I should let you all know that ds was born in good health on February 15, after about 15 hours of labor on Pitocin. I think he would have been just fine if we had let him come on his own, but oh well. Everything turned out just great. Aside from the Pitocin and a bunch of antibiotics because I was GBS positive







: , it was a completely natural delivery. The last three hours were about the worst of my life so far, but it was worth it.

Anyway, here I am now with another question. After giving birth, my lochia flow lasted for about 4 weeks. Then, about 11 weeks (I think) postpartum, I had one day of very light spotting. Then, a few weeks later (3?) it happened again. That day, I spotted some in the morning, then nothing for several hours, then later in the day I passed a small clot, maybe the size of a pea.

We have not had sex since the baby was born, so I know it wasn't implantation spotting.

What is this? Did I get my period twice and it was just super light? Or could it have been leftover lochia that hadn't come out for some reason? Should I be concerned?

Oh, and as you may remember I have 2 MTHFR mutations---compound heterozygous.

Thanks for your thoughts.


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## orangefoot (Oct 8, 2004)

Congratulations!!

I had very little bleeding this time, mainly due to a 3 hour post partum Pitocin infusion after a very long labour which reduced my uterus back to almost normal size very quickly.

I did have bits and bobs appear at odd intervals though as I did after my other labours. Even at 8 months I had a day when I thught my period was coming back but it came to nothing.

I'm glad everything went well even though a Pit labour is not really fun and that all your worries for him are behind you now.


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## 5thAttempt (Apr 22, 2006)

Congratulations!

I had my bleeding on and off for good 10 weeks, I remember some clots. I think you are fine. You might want to call a doctor if you get another spotting episode, just in case. In any case I do not think it is blood-clotting disorder related.


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## neverdoingitagain (Mar 30, 2005)

Hi ladies, I'm back!
And this time, I'm dealing with a pregnancy








I wish I could change my name, since apparently, I am doingitagain lol
I'm about 9 weeks, I think; haven't been able to see the doctor yet, and I'm feeling pretty good, other than not being abole to fit into any of my pants or stop eating







Somehow, I don't think I was supposed to gain 10lbs already







:
Anyway, I'm hoping to stay off the LMWH/Heparin for as long as possible. Does anyone have any suggestions? Or experience for that matter, going medication-free after having a DVT in pregnancy?
Thanks in advance!


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## 5thAttempt (Apr 22, 2006)

I am planning few long trans atlantic flights over the summer and I want to get Compression Stockings that I will use for my flights. (Just in case, I do not want to have any problems during my vacations). Do I need a prescription for them? Can I just get them over the net? Which brand? Any suggestions?


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## SaraMama (Sep 19, 2004)

When I got mine I had to go to a medical supply store and they required that my physician fax them a prescription for them. They measured my leg to make sure I got the right size and I think my physician had to specify a certain compression strength.

Mine are made by Kendall. The are "full foot". At first I was given "open toe" stockings and they were awful. They had a lot of extra fabric in the foot and had a large hole. I was told that this was so it was easier for physicians to check patients legs while they are in the hospital. Basically, they can just pull it up over their foot - rather than have to take the entire stocking off. I hated them because it was very uncomfortable to wear a shoe over them. I would end up with all this extra fabric bunched up under my foot, not comfortable at all.

HTH!


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## lolar2 (Nov 8, 2005)

Quote:


Originally Posted by *neverdoingitagain* 
Anyway, I'm hoping to stay off the LMWH/Heparin for as long as possible. Does anyone have any suggestions? Or experience for that matter, going medication-free after having a DVT in pregnancy?
Thanks in advance!

I was undiagnosed for my first pregnancy. I did not have a DVT myself, but miscarried in the second trimester due to placental insufficiency; later the perinatologist who dealt with my second pregnancy said that early anticoagulation is the most important, when the placenta is forming. After the placenta has already formed, any clots that could have caused it to form wrong are probably gone, but the placenta cannot be repaired and there is a high risk of miscarriage. So probably if you want to spend part of the pregnancy off of meds, it's better for the baby to start out with meds in the first trimester and then discontinue them in the second or third, after placental blood flow is established, rather than the other way around. I know that 16 weeks is too late to start LMWH as far as preventing miscarriage, but I don't know how far back that goes (whether at 9 weeks any placental problems would already be established or not).


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## AuroraB (Jan 10, 2007)

I haven't been here in a while so I have some catching up to do.

Jenn - I agree that you should have been tested for probs. knowing that you had lupus. I am so sorry. It is just wrong that is wasn't done. I don't see a specialist for my clotting disorder - just my ob. but she is incredible.

BM4 - I am not sure, but I remember there being something about having to take the test twice - I think it is standard. It is hard to wait when you want a baby so much. I hope the time goes by fast for you.

Laurel - congratulations on your preg. My doctor told me to hope for a natural birth and no interventions and that she would just monitor me closely and we would cross that bridge when we came to it. I have a lot of faith in her and I am happy to have the hope of not inducing and not having a c-section - but I am prepared and ok with the possiblity of needed it. With my condition the babies tend to be small so we want to go as long as it is safe to do so.

Megan - I am so sorry for your loss.

To update my progress, I am at 11 weeks and am doing a lot better with the heparin shots. Thank you for the advice - I am bruising less giving them in my belly. I have had two good scares - one with an ovarian cyst bleeding and another dislocating my knee and having a lot of bleeding for that. I had to stay in bed and wait it out and luckily didn't have to stop the heparin shots so all is good.


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## Argonaut (Apr 27, 2005)

I'm new to this thread with lots of questions.. I'll start with history. I had a relatively trouble-free pregnancy and delivery with my daughter, and then last year I had a miscarriage in June at 8.5 weeks. It was probably the worst thing I've ever had to go through, including childbirth; I had crazy ridiculous bleeding that lasted for 30 days, passed tons of HUGE clots, tons of pain, couple of ER visits, etc. I miscarried again in November at 5.5 weeks; this time was not as bad. This year, in early March, I met with a new OB (we moved from CA to FL) and although she was hesitant after "only" two miscarriages, I got her to do a blood panel. I was 7dpo when it was drawn, and got my BFP at 10dpo. It came back 3 weeks later with a low-positive for lupus anticoagulant. So, I met with a peri who put me on 81mg aspirin and 5000iu heparin 2x/day. He said my insurance probably wouldn't cover lovenox, and that the difference wouldn't be worth the huge expense. He also said we'd do NSTs and such from 32 weeks on, and induce at 39 weeks.

With my daughter, we had to induce at 41w1d because of low fluid. I was all about natural birth and tried everything to get my labor started on my own -- EPO, herbs, rrl tea, walking, sex, spicy foods, etc, I even tried castor oil TWICE. We started with prostoglandin gel which gave me good steady contractions for a few hours and then waned, so they started pit. More good strong consistent contractions, but after 24 hours of doing my Bradley Method breathing and everything and refusing pain meds, my cervix just wasn't moving past about 1.5-2cm. I was extraordinarily tired at that point and went ahead and got an epidural (which hurt like HELL -- I think mine was done badly -- you're not supposed to hear a loud POP when it's inserted, right?). But like magic, I started dilating beautifully. About 13 hours later, I was ready to push and 45 minutes after that (at 41w3d by that point, 40 hours after the start of the induction), my gorgeous DD was born (10lbs 2oz, so definitely no IUGR!). I had a little bit of a hemorrhage after the birth and they stuck something in my thigh, not sure what. In hindsight, I feel like I did the best I could have and that things probably couldn't have been any different since the induction was medically necessary. But, my plan for next time was to do everything in my power to avoid having to have another induction, because hopefully if I could go into labor on my own, I wouldn't need an epidural for my body to dilate, kwim? But now that I have this complication, I don't know what I should do.

I have another 5 months or so to decide on that, but it's on my mind now because I'm getting new insurance this month and thinking about possible changes in my care. I feel like my peri is kind of condescending and doesn't take me very seriously, possibly because I'm only 20, possibly because I guess I'm relatively low on the high-risk totem pole. I was automatically sent to him since he works with my OB practice (which I like and chose because out of the relatively limited selection in my area, they got the best reviews from women I know, great facilities, and they also have some of the only midwives around here). I also don't like his attitude about lovenox much -- I feel like he should have at least TRIED to see if my insurance would cover it. I'm certainly going to see if my new insurance will. Sorry for the super-long post. I'm so grateful to have found this thread since you guys are so knowledgable. To summarize, here are my main questions (I'm forgetting some though, and will have to come back later):

-Given my history, should I just say sure, give me the induction and epidural at 39 weeks and get it over with since I'll probably end up with them anyway, or should I bother trying to hold off for that natural birth I've hoped for? What is the real added risk of waiting an additional 3 weeks?

-Is it worth trying to change peris when it's mostly his bedside manner that I don't care for and I'm mostly satisfied with the care?

-Should I be being seen by a hemotologist too?


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## myjulybabes (Jun 24, 2003)

Whoa, you find something new every day on MDC, don't ya? I had no idea this little "tribe" was here! I thought I'd give my brief intro, then go back and read what I've missed.









I'm currently pregnant for the 4th time, and after 2 cases of severe pre-eclampsia (and 1 case of HELLP) leading to the premature births of my sons, my doctor wanted me tested for everything she could think of. I came up positive for the MTHFR (on 2 genes, can never remember if that's hetero- or homozygous. I think my brain is full.), and the lupus anti-coagulant thingo as well. I started on Lovenox at around 13 weeks. It sucks. A lot. I suspect many of you know that already though.







I have to say though, I'm really proud of myself...I'm severely needle phobic, and yet I've managed to do most of the injections myself.


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## Argonaut (Apr 27, 2005)

Ah yes, you just reminded me of another question! Is there a point during pregnancy when you get too big/skin stretched too thin to do the shots in your belly anymore, and if so, is it also difficult to reach any other spot at that point? I ask because my DH is severely needle-phobic and can't even be in the room when I uncap a syringe, so I'll have to do all my injections myself.


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## orangefoot (Oct 8, 2004)

Hi Aurora - I'm glad you are doing ok

Maggie - Firstly, I'm sorry to hear of your losses and secondly I had a normal-ish birth without being induced and it is possible, don't lose hope.

All would have gone smoothly if my dd hadn't got herself with her brow presenting instead of the back of her head! I ended up with the pit to force her to press on my cervix any old how and get it to dilate but refused an epidural (second time doing that - I hate needles which is a bit funny after doing almost 300 shots isn't it!!).

I think you need to find someone who you feel comfortable with so that you can negotiate the kind of birth you want. If your other dd want to 41+ then inducing this babe at alnything less than 40 might not be what he or she needs or wants to do.

The risks with heparin are to do with the epidural and bleeding/clotting in the spine and risk of hemmorrage after the placenta separates. If you can find a good high risk doc to make a plan to deal with the pp bleeding risk and you yourself are quite sure that you won't want an epidural (although you will have to agree to a general if you need an emergency c section) then you will be on your way to what you want. After that its just a matter of seeing how your labour unfolds.

Once your belly gets too tight to pinch you can inject where you can pinch on the top of your hip. I had to stick the needle in at a funny angle sort of pointing towards my elbow when doing the right side otherwise I couldn't push the plunger down. Experiment and see where you can reach!

Josie - Hello and welcome to the tiny tribe!

5th attempt - once you get measured (or measure yourself very carefully according to the charts for each brand) there are lots of places you can buy compression stockings online; just google. I have been wearing compression on my DVT leg for 4 years now. I am currently wearing Juzo soft which are easy to get on and quite smooth-feeling compared to many others. Jobst are said to be good and Sigvaris are positively luxurious (I have one pair). I hate wearing socks generally and am not a big fan od shoes either so I love the open toed stocking! I have a pair of full socks and although they are ok I find them a bit slippery to walk in. I wear my stocking with toe post sandals or Birkenstocks even with skirts and dresses - I don't think twice about it now. My leg is so uncomfortable if I don't wear the stocking even after all this time.


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## 5thAttempt (Apr 22, 2006)

orangefoot, I do not see a doc for my clotting issues since I never had dvt, it was all handled by peri/ob during pregnancy. I do not plan on wearing one everyday, just for my flights. Do you think I need a full leg one for my flight or knee high is ok? Also, what kind of compression do you have? I goggled a little and they have all different compressions, so I am not sure which one to get.


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## intorainbowz (Aug 16, 2006)

Does anyone have a list of the names of blood tests to request to have run? I am suspicious that I have a clotting disorder based on my medical history and how my pregnancy went. When I go for my annual exam, I want to take a list of blood tests I want run.

thanks ladies. A link would be great.


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## orangefoot (Oct 8, 2004)

5th Attempt

I think that for flight a below the knee is probably better as a full leg isn't comfortable when sitting for long period of time and can e constricting behind the knee which is unhelpful.

http://brightlifedirect.com/customer...to_measure.cfm
This is a useful link for sizing

Click on Jobst to see their size charts for flight socks. Juzo have a cotton sock with 15-20 compression which is similar to a flight sock too.

Flight socks are typically less than 20mm hg pressure and can be bought OTC by shoe size. Anything above 20 is considered medical and you need to measure your legs carefully to ensure a good fit and effective compression as the stockings offer graduated pressure which is much higher at the ankle than at the top of the calf.

Many pharmacies stock compression hosiery and you can ask for advice from the pharmacist and not a doctor if you want to.

Wendy

You need to ask for a full thrombophilia panel

Here's a list of what it usually includes. Ideally you need a referral to a hematologist to interpret and explain the results to you. Ordinary GPs are not best placed to do this.


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## A&A (Apr 5, 2004)

Quote:


Originally Posted by *tenecwalker* 
I'm just wondering if it is possible to carry a baby to term if you have a clotting disorder and no treatment for it?

Yes, I have Factor V and Factor II, and I have two healthy children, no problems and no treatments (I didn't know I had the factors when I was pregnant.) Also my sister has the same factors, no treatments, and two healthy children.


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## chilliepepper (Oct 14, 2005)

Since I was diagnosed with a blood clotting disorder, it's been recommended that at-risk family members also be tested, since MTHFR mutations carry other risks besides those associated with pregnancy. My mom found out that she has two C677T MTHFR mutations, and now my sister is pursuing getting tested. However, she checked with her insurance (Blue Cross) and they said she has to get a procedure code (also known as a CPT) from her doctor. The doctor says there is no procedure code for these tests (but we're not even clear on whether the doctor has any clue what this is all about). The doctor said she didn't think insurance would cover it, since my sister has no "symptoms." If she has the full thrombophilia panel done, it will cost her over $700. I suppose maybe she could JUST get tested for MTHFR, since there's no real reason to believe she would have any of the other ones.

Anybody here know how my sister might go about getting her insurance to cover these tests? Thanks.


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## ghuaghua (Jul 19, 2005)

After reading a lot of these responses I'm a little confused about what I should be doing for this pregnancy. I am 11ish weeks pregnant with baby #2. With baby #1 I never had clotting issues _during_ pregnancy but 3 months after my emergency c-section I had a blood clot in my thigh that sent me to the ER. The doctor there put me on 2 weeks of lovenox injections followed by 6 months of coumadin. During that time I was referred to a hematologist who did some blood work to see if I had any factors that would contribute to the blood clot. They all came back negative...which leads me to now. What should I do? I have told my midwife that I had a blood clot, and had tests done and everything, and her response has been "well let me refer you to a hematologist to see what he thinks you should do"...At this point is this really necessary? Should I be retested, and if so, why?


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## myjulybabes (Jun 24, 2003)

Intorainbowz, I agree that a full thrombo panel is what you want, and that it's quite wise to ask for it before pregnancy. The results take a while to come back and depending on your particular issues and how they've manifested in the past, it can be really important to start treatment ASAP.

Ghuaghua, if you have a history of multiple miscarriages or "early onset" preeclampsia (before 34 wks, according to my OB), then I might re-test just for peace of mind, but otherwise, since the tests came up negative, I'd think you'd be fine.


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## intorainbowz (Aug 16, 2006)

So can my OB run them and then I see a hemotologist? Or should I just go strait to a hemotologist? My insurance does not require a referral. What would I say to the hemotologist?

I just checked. The only hemotologists here are at the Uof U and associated with the oncology department. Am I looking at the right speciality?

Thanks


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## orangefoot (Oct 8, 2004)

Wendy - I'm not sure how things work where you are but I imagine that if you call any hematologist office they would tell you where to go.

Emily

C-section is a risk factor for clotting without any existing clotting disorders. Some types of surgeries are known to increase risk of clotting for example hip and knee replacement. In lots of places anti-coagulation after these surgeries is now standard practice, it may be that one day it will be after c sections too.

Bleeding in pregnancy is bad so our bodies up their clotting ability during pregnancy to assist maintaining the pregnancy. At birth and just after our bodies are frantically clotting to prevent haemmorhage from the site where the placenta detatches. If you add sugery to that mix it is not surprising that ordinary women get clots - and even more women with undiagnosed disorders get clots.

If your tests came back negative then you can probably attribute your clot to pregnancy + surgery bad luck, awful though that sounds.

However, have you spoken to your OB about it? Did you have a referral to a hemo at the time you had the clot? Did they have any advice for you regarding a new pregnancy? Has anyone suggested post partum anti-coagulation for you if you need another section or even after a normal birth?

These may be questions worth asking for your peace of mind.


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## ghuaghua (Jul 19, 2005)

I think I may have spoken too soon with my last post. Since the beginning of the week I have been having this cramp in my lower leg. It feels just like the pain I had when I got my first blood clot (Jan 06) So any opinions on what I should do? If I truly feel this is a clot should I go to a hematologist for an ultrasound/tests, or the E.R. or just a diagnostics place for an ultrasound? It doesn't seem severe enough just yet for the E.R. and besides that I hate hospitals! Anyway, any input would be helpful. I'm just going to wait it out for now, until either the pain gets worse, my leg turns blue (like last time) OR my husband gets back in town.
p.s. I am 12 weeks pregnant, which makes this that much scarier for me.


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## whateverdidiwants (Jan 2, 2003)

Quote:


Originally Posted by *ghuaghua* 
I think I may have spoken too soon with my last post. Since the beginning of the week I have been having this cramp in my lower leg. It feels just like the pain I had when I got my first blood clot (Jan 06) So any opinions on what I should do? If I truly feel this is a clot should I go to a hematologist for an ultrasound/tests, or the E.R. or just a diagnostics place for an ultrasound? It doesn't seem severe enough just yet for the E.R. and besides that I hate hospitals! Anyway, any input would be helpful. I'm just going to wait it out for now, until either the pain gets worse, my leg turns blue (like last time) OR my husband gets back in town.
p.s. I am 12 weeks pregnant, which makes this that much scarier for me.

I wouldn't risk it - I'd get to an ER pronto. If a clot is building it can threaten the pregnancy.


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## Girlprof (Jun 11, 2007)

Hello everyone,

I am new here and very happy to have found this group! Here is some introductory background material on me.

I have a 3.5 year old son. That pregnancy was easy-peasy and I had the completely natural birth I was hoping for. Yeah! The next time around, things didn't go as well. Last summer I got pregnant again, but miscarried at the end of August. I had my second miscarriage in December. After the second one, I asked for and got extensive testing.

The first thing they found was a uterine polyp, which I had removed in March. Then it turned out I am heterozygous for MTHFR. Then, almost on a whim, my OB sent me to the rheumatologist down the hall for more bloodwork. With him I tested positive for APE, which is sort of like APA only more obscure, apparently. Although I am just barely positive, the rheumatologist and my OB recommended Lovenox during pregnancy. I got a +hpt about a week later and immediately started with the Lovenox. I'm now 9 weeks pregnant and crossing my fingers that everything works this time.

I'm so happy to have found this group because no one else that I've talked to about this stuff seems to have any problems with being induced at around 38 weeks. I DO NOT want an induction. My OB has said that I won't need one. I also intend to switch to the midwives at his practice if/when I get out of the first trimester.

Rachel/Orangefoot, I am very excited to have found the famous chickenlula from the Lovely Lovenox Ladies group on BBC! It seems that all of those women are being induced, but when I voiced my concerns, they said to read the older posts to find some from you!

Nice to meet everyone.

Sarah


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## neverdoingitagain (Mar 30, 2005)

Hi, I'm back again







I meant to reply sooner, but you know how life can be...







:
Got my confirmation from the doctor last week, shocker, I'm pregnant







Due to my previous experience, my doctor believes that I should start on Tinzaparin (LMWH Innohep) which I started on Sunday. The joys








I've made it clear to him that I don't want to be switched to heparin at 36 weeks and that I will not be getting a second induction. He didn't say much, since he would probably not be delivering. All he said was "I guess we'll send you back to the Thrombosis Clinic in Calgary"







So I guess I'll be discussing this with them.
Lolar: I actually had 3 m/c before I had my dd. They were all in the first trimester, so I was more worried about the first than the second. We actually hadn't planned on getting pregnant, hadn't been trying at all, otherwise we probably would have started alot sooner on the LMWH . I do worry about the risk of placenta insuffiency, though its probably too late to do anything about it. I can only cross my fingers that this baby is doing ok.
I did actually find an article on here about FVL and pregnancy, with suggestions on how to prevent clots
http://www.fvleiden.org/publications/midwife.html
and I'm trying to follow their suggestions. At least the LMWH isn't as expensive as I thought it would be. Thank you health insurance







:
I get my LMWH in prefilled syringes, which is kind of annoying because they do not feel as small as the needles I used last time(smallest diabetic needle on the market!







) Anyone else find they really have to push in order to get the needle injected?
Ghuaghua: It might not be anything, could be that the veins in that leg are weaker due to the previus blood clot, or that you are getting leg cramps due to a lack of magnesium, or it could be the beginning stages of a blood clot. Might as well get it checked out. Better than waiting for your leg to turn blue








Girlprof: I was induced, but I was induced 1 day before my due date







I got lucky, the doctor who was in charge of the induction was going away on holidays. As someone who has been induced, I can tell you, never again! 0-60 is no fun, and dealing with all the extra crap involved in induction makes for a very traumatic labor. At least that was my experience. I guess people who have been induced before and have no problem with it either had epidurals or a lot of pain meds


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## ghuaghua (Jul 19, 2005)

I took everyones advice and went to the E.R. They did an ultrasound and didnt find anything...i did however get to see the baby for the first time and everything looked great! I will be following up with a hematologist just to be 100% sure.


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## AuroraB (Jan 10, 2007)

So I haven't been here in a long while - so I will try to catch up.

Maggie - I would want a doc. that was open to nat. birth but that was watching me close for any danger signs that gave a reason to do something else. I wouldn't be comfortable with a doc. telling me that I was getting induced without even being close to being ready or having any complications. Sometimes I put my shots in the outer part of my thigh. It hurts - leaves a big bruise - but can work. Make sure you don't do in the inner part - too many veins.

Josie - good for you. - getting past the needle phobia.

orangefoot - lol -being afraid of the big needle after all those shots. I am with you.

Chilliepepper - I have had a lot of fun fighting my insurance. They tried to not cover the heparin! I would call them and explain the seriousness of the situation - that you or your baby could die. I would make my doc. call my insurance and do the same. They should at least tell the doctor exactly what he needs to do. Be persistant.

Emily - I am glad you are ok and got to the baby. I would push to get checked out for my own peace of mind, even though it may not be nec. Check out the site that Neverdoingitagain posted. My doc. told me that fish oil is also a blood thinner. I love the dark grape juice.

I am at 14 weeks now and doing good. I have been so sick that the shots seem easy compared to not being able to eat! I am an apt. next week and am looking forward to hearing the heartbeat again on doppler.

take care everyone and thank you for all the help getting me started on the shots and encouraging me. I think I will be more afraid of needles after this experience...but...the shots are worth my little baby's safety.


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## myjulybabes (Jun 24, 2003)

Quote:


Originally Posted by *neverdoingitagain* 
At least the LMWH isn't as expensive as I thought it would be. Thank you health insurance







:

OMG, the cost! At my usual pharmacy, they give you a little speil when you check out about "and your insurance saved you $X!" The guy who checked me out nearly soiled himself when he looked at the receipt and had to say "Your insurance saved you $960!"







"Thank you health insurance", indeed! Which makes me wonder about how people manage when they need this medication and don't have health insurance, but that's a different rant for a different day/forum I suppose...

Quote:

I get my LMWH in prefilled syringes, which is kind of annoying because they do not feel as small as the needles I used last time(smallest diabetic needle on the market!







) Anyone else find they really have to push in order to get the needle injected?
This is my first time using it, so I have nothing to compare to, but yes, it does seem to be getting harder to inject. I was wondering if I got a bad box or something (I get mine in boxes of 10 or 12), but if someone else is having the same experience...maybe not. I suppose the question is, is it possible to get the LMW formulation without the prefilled syringes? I'd love a smaller needle, but not if it means I have to go standard heparin and twice daily injections. Once is quite enough, thankyouverymuch. I know I'll probably need to switch eventually, but I'm just trying to deal with the day to day right now.









I went to PrideFest today, and was showing off my belly to my never-been-pregnant friends. All they could say is "WTF happened to you???" I think they thought I fell down the steps or dh was abusing me or something.







: Everything is bruising lately, whereas it didn't before, or they were really small. I guess the stuff is working, hmm? Or I'm having extrodinarily bad luck with needle placement.


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## neverdoingitagain (Mar 30, 2005)

Yes, Myjulybabes, you can get vials of the LMWH without the prefilled syringes







but they are apparently easier for the pharmacy to get prefilled. Ask for it, they would probably accomodate you. The needles come in a box of 100? I believe. I think they are more worried about accidental overdose with the vials.
As for the bruising,







I can so relate. I have a couple of little bruises. It seems that the injections that are hardest to do, bruise the most. I've even had a couple of little knots where I've injected too. Oh well, its way better then the regular heparin. I really looked like I was battered! (When I was in the hospital postpartum, they injected the heparin in my arm. I had huge bruises on my stomach AND my arms







: )

In Canada, they have a Compassionate Care policy, if you need a medication to live, they will give it to you free if you can't afford it(and you don't have insurance). Unless its deemed unnessary, or something cheaper can be subsituted. With Shekinah, we didn't have insurance, couldn't afford the LMWH or even the cheaper subsitute, so Compassionate Care it was. And its times like that I love my country.














: But it also makes me worry for those people who need LMWH or even heparin outside of Canada.
Emily: Yey! Glad everything turned out ok, and how cool that you finally got to see your baby!

It seems to be a common thing, needle-phobia, especially if you've been through this before. I didn't want to have anymore children, and one of the reasons was the needles. Somedays, 28 mores weeks seems like forever. I dread my needle every morning. I don't know how diabetics do it.


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## erika978 (Feb 25, 2007)

Hi all, back again









O the shots were fabulous. I was on innohep and luckily we have a drug refund scheme over here in ireland. We pay €85 a month total for prescription drugs and the government pays for the rest. Saved me €500 a month when I was on the heparin shots.

For those just starting the injections, some weeks you'll find injecting really easy. Other weeks you'll really have to force yourself to inject. It can be hard but it is worth it.

Another reason for induction, in fact the only reason I was given by my OB and haemotologist for inducing because of heparin, is if you plan on having an epidural. There needs to be a 12 hour gap between taking your last heparin shot and getting an epidural. Other than that, feel free to wait to go into labour naturally. This is what I pushed for and when my OB initially told me I would be induced (no asking me, just told me) it freaked me out. He told me differently then next appt. Thankfully he wasn't anywhere near me for my delivery.

THe other thing I was told about heparin which really eased my mind during pregnancy, was that it took the high risk out of my pregnancy. Without, I would have been at very high risk for a clot, clotting on the placenta, miscarriage, premature labour, stillbirth, etc. But as my haemotologist told me, the heparin negates the bad aspects of having factor v. The risk of getting a clot (at least for me having FVL) was so tiny that it was almost non-existant.

As for the possibility of having a healthy pregnancy without treatment: It is possible if you have never had a clotting episode. The risk, however, increases hugely if you have had a clot. As I was told, it wasn't the FVL that gave me the added risk but the fact that I had already had a DVT.


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## AuroraB (Jan 10, 2007)

Unfortunately I have to take heparing 3x a day. It has been 4 months now and I am pretty used to it. I sometimes forget about my bruises and people will get a peek and be all shocked and then I remember that they used to shock me too.

I have a question - sometimes when I am injecting the liquid in I will get a bump as I push it in and it hurts a lot and leaves a huge bruise. Am I putting it into a vein - or under a vein? What is that bubble? I usually just tough it out and push the liquid in really slow because I don't want to stick myself again somewhere else.


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## Girlprof (Jun 11, 2007)

Wow, it's been really quiet around here. I have a question for anyone else who is taking Lovenox. The women on the baby center board are saying that it makes babies grow bigger. Is that true? My OB and midwife have not mentioned that at all. I'm not afraid of birthing a big baby, but my first was 9.5 pounds w/o the Lovenox. Has anyone else heard of this? And how is everyone doing?

Sarah


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## SaraMama (Sep 19, 2004)

I took Lovenox during two pregnancies and no one ever mentioned to me that it makes babies grow bigger than normal. Of course, this was never a concern of mine because I knew that I would not make it to full term anyway. I delivered Aaron at 34 weeks and he weighed 5lb 14oz. Colton was born at 37 weeks and was 6lb 1oz.


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## myjulybabes (Jun 24, 2003)

That's funny, I got the impression my doctors are concerned about a baby that's too small, not too large. Now I know that some blood pressure meds can cause a small baby, but I'm not on those (yet?), so I thought it related to the Lovenox.

Of course they estimated her to be about 15 oz at 19 weeks, so I'm guessing it's not a problem yet.


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## orangefoot (Oct 8, 2004)

I think the weight thing might be due to doctors expecting a small baby from mothers with clotty placentas becuase they get less blood flow. LMWH means that you don't get the clots so the baby will be an ordinary size: 'bigger' than it would have been without it.

My non medicated babes wew 6lb 4oz, 7lb 2oz and 8lb 2oz and my LMWH babe was 8lb 12oz. I think that shows each of my babes has been bigger than the last!


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## erika978 (Feb 25, 2007)

My LMWH baby was 6Ibs 11oz. They had initially estimated 7.5 pounds after an u/s as they were quite concerned that I was having a small baby.

6Ibs 11oz is somewhat small for me. I was 8.5 pounds at birth. But then again, my ILs are small. My DP at 5foot7 is the tallest in his family.


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## Girlprof (Jun 11, 2007)

That all makes sense and is very helpful. Thanks! The doctors aren't even sure I have a clotting disorder. My family grows big babies and I'm perfectly fine with that. But I'm not so eager for a drug to cause my baby to be super-big! Thanks again.

Sarah


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## 5thAttempt (Apr 22, 2006)

My non-lovenox baby was 7 lb 7 oz (born 1 day before due date) and lovenox baby was 7 lb 1 oz (born 3 days before due date).

AuroraB, I never had it when I did heparin, so I am not sure what you are talking about.


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## orangefoot (Oct 8, 2004)

AuroraB

It could be air but from what you say its more likely to be that you have poked a blood vessel which then leaks - and leaves a bruise.

As you are poking so many times a day, I can imagine that it is tricky to find the perfect spot every time. I hated that feeling of it not being quite right but not wanting to pull it out and start again and I feel for you, I really do.


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## TiffanyDanielle (Jul 25, 2007)

I am so glad to have found this board. Long story as short as possible:

I have ITP. I got the splenectomy and was in full remission with a normal platelet count. Then, less than a year later, I got a PE from a DVT in the leg, and tests revealed some kind of issue that causes me to clot. Yeah, from one extreme to the next.

Then I had to go and find the love of my life and get remarried at 35 and start thinking it would be a good idea to have kids. They put me on Lovenox 60mg/2x day. I got Pregnant in Nov 05, but lost our angel in January. Pathology said it was chomosomal, not blood related.

Tried to get pregnant again for almost a year, then they found out I also had Lupus. And I kid you not, the next day I found out I was pregnant again.

First trimester they had me on 95mg lovenox a day. In second trimester they lowered it to 40mg/day.

I am now at 29 1/2 weeks. I have had an uneventful pregnancy, and then all of a sudden her movement pattern changed. No rolling, faint kicks, at home doppler showed an erratic heartbeat.

My OB totally blew me off and said that decreased fetal movement was not a cause for concern?

So the questions:
1. do I sound like an overly anxious neurotic mother to be that should be ignored, or am I rightfully scared?
2. does anyone have any stories about their babies having a decreased movement pattern so early?
3. since getting information from my OB is like pulling teeth from a crocodile, is it still possible to pass a blood clot to the little one even though I take my daily shot faithfully?
4. does anyone have any idea how the Lupus plays into all this mess?

Any insight would be greatly appreciated!

Thanks


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## whateverdidiwants (Jan 2, 2003)

I'm sure there wil be people who have more technical info than I do (I'm on my lunch break and don't have much time) but I wanted to say that I absolutely don't think that you're being paranoid. Clotting disorders are nothing to screw around with and ANY thing that changes should be looked at asap. Are you seeing a perinatalogist as well as an OB?

I would insist on a high-level ultrasound to check for clots in the placenta and for IUGR, even if it meant going to the ER and exaggerating my symptoms.


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## Argonaut (Apr 27, 2005)

I agree. He shouldn't be blowing you off. If it was just decreased fetal movement in a low-risk woman, then sure, probably not cause for concern. But with erratic heartbeat on the home doppler and all your complications? They need to be taking it a little more seriously. I would also insist that you get checked out thoroughly, and if you have a perinatologist, maybe they'd be more ready to help than a regular OB.


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## 5thAttempt (Apr 22, 2006)

I woulld ask for u/s immediatly - but my OB is totally undestanding and he told me if I have ANY concerned call him up right away and he will do what I want him to do do not because I need it but because it will reassure me.
Few times during my pregnancy I did that and he performed u/s - very quick ones w/o any questions. I even did not have to intensify my symptoms, I simply admitted that I am paranoid.


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## TiffanyDanielle (Jul 25, 2007)

about the perinatalogist - since I live in Austin, I got the shaft. Supposedly there are only four here in town, so none of them take on regular patients, they all just consult when requested by the OB.

I did get a consult before I got pregnant the first time, and perinatalogist said that he would be available to help me whenever I needed it, but I always have to have the OB call first to get the consult referral. And I think my OB has some kind of superiority complex because he never sends me for any kind of testing. He insisted I do the nuchal fold test at his office and all the screening tests there as well.

On Saturday I noticed a very big change in her movement. No rolls, no visual kicks, just faint nudges. Since I had to go to the OB office Monday anyway to get the glucose check(late because the OB "forgot" to have it scheduled) I just waited to ask then.

On Monday, he wasn't at the office and I was told the doc on call wasn't available to answer questions. Then my husband called and told the office that my OB had better call me by the next day and answer my questions.

That's when he called me and basically told me I was overracting. Then on Tuesday night I ate, drank juice, drank ice water, and still could not get her to move, so hubby called office at 10pm and told answering service that he wanted call back within 10 minutes.

Now that doc on call was WAY more sympathtic and said she would call my perinatalogist and get something set up. But my OB nurse called yesterday to tell me that I would be lucky to get in maybe Friday, and she had that same attitude that I was wasting everyone's time.

Last night was another scare, as baby's heartbeat has been a consistant 150 to 170 beats for four months, and last night it was up to 198.

I hope I get my sonogram tomorrow, because I think I might have a nervous breakdown if not.

Thanks for the responses, I hate feeling like I am being overly anxious, but I would hate even more to lose her because I did nothing. I am 37, and with all my issues, I am afraid this might be the last train for me.

Tiffany


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## tripleblessed (Mar 21, 2007)

I'm very glad I found this yet very lost and confused







: I was just told one of my many blooddraws after my m/c which confirmed it was a healthy baby..came back I have a protein s deficiency.

What does this mean except for future pregnancy I need to be on blood thinining medication? I am very healthy and assume had I not m/c I would never know I have this? Is it really that serious? It this a guarantee and to why I m/c? Any help is really appreciated. thanks.

Karen


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## tripleblessed (Mar 21, 2007)

bump


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## orangefoot (Oct 8, 2004)

Tiffany I hope you have had an u/s today and had good news. I can't believe that OBs can be so crass and blow off your concerns. One the one hand they are happy to tell you that pregnancy is high risk for you and yet......

Karen

Come over to www.protein.org.uk if you haven't already. We are a band of a thousand or so people with PSD and between the main web pages and the forum there you can find out almost everything you want to know - except for 'Will I get a clot?' and 'When will that be?'

PSD is implicated in pregnancy loss both early and late so it is entirely possible that for example clots in the placenta or umbilical arteries caused by PSD could be the reason for your loss.

I am generally healthy and have had a DVT out of the blue but not suffered any losses I wear a compression stocking but am currently not on any medication.

Your docs were very good to do tests after your loss: many don't until after 3losses which is terrible as with this diagnosis you can be treated and the chances of having a successful pregnancy are as good as anyone else's.

Rachel


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## TiffanyDanielle (Jul 25, 2007)

Thanks so much for your kind words.

Got my ultrasound today and she is doing just fine. She is a very healthy 3lbs 1oz. Four chamber heart. She was even practicing her breathing when we were getting the sono, so doc is very reassured that everything is ok.

The best news came after the sono though, because the perinatalogist is basically taking the lead on the case. Starting in two weeks, when I start my 32nd week, they are going to do weekly biophysical checks on her until I give birth. He was SO supportive and understanding, and I am very relieved.

I am sure my OB is going to be a jerk to me next week at my regular appointment, but I will just have to explain I did not feel like he was being attentive enough to my situation.

And then I even got in to see the Lupus doctor, and he explained a whole lot regarding how Lupus can affect the pregnancy. He seems to think we have all our bases covered, and he is glad that the case is starting to get watched more closely.

Now if I can just get through the next ten weeks...


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## orangefoot (Oct 8, 2004)

I'm glad all is well with you and your little one and that you have found someone you can have confidence in. The next ten weeks will seem to go slowly until you look back on them!

Take care


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## AuroraB (Jan 10, 2007)

I haven't checked this board for a long time - it seemed like no one was here for a while.

I am glad it is active again - well, not glad that we all have this prob. but glad that there is interaction.

TiffanyD - Is there any way you can get a new OB - I am sorry to butt in but he sounds like a real @##. He must have never lost a baby before - and not understand what that does to us. My husband would have freaked out on him. I am so glad your p. is taking such good care of you.

The heparin shots still hurt but are working great for me. I just his the 20 week mark and had an us. It was so incredible. I was sooo nervous. The radiologist said that my baby was big and a boy. I don't know what big is to her - I won't get the measurements and talk with my midwife for a while but I was really happy to see him move around and his heart beating and know that he is not super tiny. He has huge feet!

love you all of you


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## myjulybabes (Jun 24, 2003)

Congrats on the big healthy baby boy Aurora!

How's everyone else doing?

I finally found a use for that horrid numb patch left by my c-sections...fabulous injection site. Well, it was, until I tried it when baby was particularly active and she managed to kick RIGHT where I had the needle. Big ugly bruise from that one.

My OB wants to switch to Heparin at 36wks even though I'm most likely having a scheduled c-section at 39wks. Thoughts on this? Her explanation was "if you go into labor early, you wouldn't be able to get spinal anesthesia for the c-section." Um....no, if I go into labor early, I'm not *having* a c-section OR epidural. (assuming baby is correctly positioned, not transverse like my boys were) I only agreed to schedule the section because I can't be induced after 2 sections and I am comfortable with the peri's explanation of why I shouldn't, in my particular case, go "overdue". I really don't want to switch to twice a day injections. Even after doing this for 13 weeks now, it takes major courage and a ridiculous amount of time to psych myself up for the one shot a day.


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## Charmie981 (May 30, 2002)

Hi all! I've been lurking for a few days and decided to jump in here.

Tiffany...I'm SO GLAD the peri is taking over your case. I think any concerns with baby's movement should be addressed ASAP...not a week later!! OMG!

I have had 5 chemical pregnancies, but only after the one in March did I get tested for clotting disorders. Everything came back fine, except for a heterozygous MTHFR mutation. The OB I'm seeing put me on Lovenox, 40mg and 4mg folic acid/day. I'm about 6 weeks pregnant, and measuring only 4.5, but my HCG is on target for where I am.

So, I want to know if anyone else has been on Lovenox for an entire pregnancy JUST because of a heterozygous MTHFR mutation? In my research I've found that the general consensus is that about 44% of the population has this mutation and it is only a concern when there are elevated levels of homocystine in the blood (which I don't know if I have or not) and even then, the standard treatment is folic acid and B complex vitamins, not Lovenox. I'm not opposed to using the Lovenox if I have to, but it means I have to have a hospital birth in an area where the c-section rate is close to 75% and I'm just not sure that it's necessary. Am I being delusional?

Also, I wanted to add that I'm really hating the prefilled syringes too. The needles are HUGE HUGE HUGE! However, if I continue to use the Lovenox, I'm going to continue to use them because they don't contain any preservatives. The multi-dose vials have benzyl alcohol as a preservative and I'd prefer not to inject that into me in addition to the meds.


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## Girlprof (Jun 11, 2007)

Charlotte, me! I have a heterozygous MTHFR mutation. Nothing else. Except very very slightly elevated levels for an obscure thing called APe. Which the rheumatologist I'm seeing happens to specialize in. I sort of think he finds a lot of women with APe, whether they actually have it or not.

I have a son and then I had 2 m/cs last year. Now I'm 17 weeks pregnant and taking the 40mg of Lovenox plus bably aspirin and folic acid. My homocysteine levels were not elevated, but apparently there is controversy about what that means anyway.

It was a tough decision to go on the Lovenox. I was such an emotional disaster after 2 losses in less than 4 months that I decided to do it. I seriously feared for my sanity if I'd had another loss. But, on the plus side, I am seeing midwives and delivering in the birth center and I'm not being induced. I don't know what I would have done if I hadn't found care providers who were not only open, but encouraging of a natural birth while on Lovenox. As far as I know, with our "condition" there is no reason for induction and no reason to be considered high risk. Home birth might be out - that I'm not sure about. But can you shop around for different care providers and a different hospital? If you decide not to take the Lovenox, I think you can definitely do the baby aspirin and deliver however you like. Good luck!

Sarah


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## orangefoot (Oct 8, 2004)

I was booked for a homebirth on LMWH here in the UK but ended up transferring for PROM and a babe who was wedged in and not coming out. I negotiated the HB with the Consultants and we had back up plans for different bleeding scenarios.

I this country you have a right to a homebirth and a midwife must attend you if you call so it was just (well, I say just) a matter or negotiating how that could happen in order to minimise any risks.

It's different where you are but shop around and see if you can find anyone who will support you.

On another note, I have been wondering if anyone thinks it would be a good idea to suggest a Blood Clotting sticky for the pregnancy loss forum - or if this is even possible.

I have been lucky not to have had any losses but I know so many women who would have had fewer losses if their OBs had tested them for thrombophilias after the first loss. I feel that with research so often highlighting the role of clotting in recurrent loss there must be something we can do to encourage OBs and women to consider this a possible cause.

It is said that 20% of the population has FVL and who knows how many have APA, MTHFR, Proten S or C deficiencies or any of the other genetic disorders which affect clotting so how many women could have successful pregnancies if they were diagnosed and treated sooner?

What do you think?


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## Girlprof (Jun 11, 2007)

I think some kind of blood clotting sticky in the pregnancy after a loss section would be great. I don't really know how these things work, but it's very helpful to find other people in the same boat as you are, that's for sure.

I don't know how many losses should "justify" testing. Well, I guess I think two, since that's what I did. And I was lucky to have docs who didn't make me wait for 3 losses. Three seems like an awful lot to endure. But I don't know if it makes sense to do all the testing after one loss. A lot of the time, one loss really is a chromosomal problem with the baby, and women go on to have successful pregnancies without having to go through all the testing.


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## AuroraB (Jan 10, 2007)

Orangefoot - I think your idea is terrific.

I had never heard of a clotting disorder. I think the testing should be done prior to the first preg. if there are other "red flags". An auto-immune disorder puts you at a higher chance of having a clotting disorder. I can see not testing after one blighted ovum - it is so common. I had two mc that were "unusual" - the baby formed beautifully both times and then just suddenly died. I also have an auto-immune disorder. I had to go to several different doctors - most wanted me to just get preg. again. I didn't know what I was looking for - but I knew that something was wrong. Once I found a doctor with a clue - she knew what was wrong within the first visit.

I am sending information out all the idiot doctors I had to inform them about the condition. If you look up current research it is prof. recommended that testing be done after 2 miscarriages. Waiting beyond that puts women at greater risk of continueing a cycle of mc. After a certain point - the more you have the more likely you will have another.


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## orangefoot (Oct 8, 2004)

Thank you for your thoughts.

When I was thinking about one loss I had in mind those who had something like an auto-immune disorder, or a history of clotting in the family which would be a red flag indicating testing if anyone asked the right questions. Maybe I am thinking about 'screening' sooner.

My diagnosis came after visiting the family planning clinic for the third or fourth time to renew my pill prescription and for the first time being asked if there was a history of clotting in my family. When I told the doctor that my dad had had a suspected PE and 2 definite DVTs he said that he wouldn't give me a prescription but he would send me for testing. That was 1996 and it meant that after the birth of my second and third children I was anticoagulated.

If I hadn't met that doctor when I did, I may have taken the pill for longer and had a clot, or I may not have been treated post partum and had a clot.

As it was my clot came out of the blue but at least I already had a diagnosis and my case was taken seriously.

Everyone dealing with women and hormonal bc, pregnancy and even HRT needs to be asking these questions. If the answer is negative then there is no harm done is there?


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## ericaz (Jun 10, 2003)

x-posted

Do you guys see a hemotologist as well as your OB/Midwife? I'm on Lovenox for a recent abnormal Antithrombin III test through my Reproductive Endocrinologist. The usual abnormal finding is a deficiency but mine was slightly elevated. My RE feels that even the elevation is something to be concerned about, hence the Lovenox/baby aspirin. I am wondering if I ought to get a second opinion/re-test via a hematologist before continuing on. My questions are - will stopping the lovenox hurt the pregnancy (I'd have to stop to re-test) and if I decide not to re-test and continue taking it, am I going to be classified as high risk?

Fwiw, my first pregnancy was text book. I felt fabulous. Normal and easy delivery/post partum. I've been suffering with secondary infertility and had one m/c in early 2006. We decided to run the autoimmune panel early this summer to see if it was affecting my chances of conceiving and low and behold - the abnormal Antithrombin III.

My RE is on vacation until after labor Day - and then I will have my second beta. I'd like to approach him with as much information as possible about what to do next. Thanks for any information you can provide.


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## whateverdidiwants (Jan 2, 2003)

Not pregnancy related, but clotting related.

I'm thinking of getting my nose pierced (early midlife crisis I guess, lol) and for the life of me I can't remember what my old Hem said about piercings. He okayed my last tattoo, and I think he said that the nose would be ok, but not anything like a navel piercing.

Anyone have any idea about how dangerous it might be?


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## Girlprof (Jun 11, 2007)

Quote:


Originally Posted by *orangefoot* 
Thank you for your thoughts.

When I was thinking about one loss I had in mind those who had something like an auto-immune disorder, or a history of clotting in the family which would be a red flag indicating testing if anyone asked the right questions. Maybe I am thinking about 'screening' sooner.

My diagnosis came after visiting the family planning clinic for the third or fourth time to renew my pill prescription and for the first time being asked if there was a history of clotting in my family. When I told the doctor that my dad had had a suspected PE and 2 definite DVTs he said that he wouldn't give me a prescription but he would send me for testing. That was 1996 and it meant that after the birth of my second and third children I was anticoagulated.

If I hadn't met that doctor when I did, I may have taken the pill for longer and had a clot, or I may not have been treated post partum and had a clot.

As it was my clot came out of the blue but at least I already had a diagnosis and my case was taken seriously.

Everyone dealing with women and hormonal bc, pregnancy and even HRT needs to be asking these questions. If the answer is negative then there is no harm done is there?

I think this would be a great approach. It would probably save lives and a lot of heartache.


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## Girlprof (Jun 11, 2007)

I have a question for those of you who were on Lovenox while pregnant. What was your doctor's or midwife's protocol for the third trimester? I just found out that my practice wants to do an ultrasound every month. They also want to do NSTs, but I don't know how often. Is that normal? I don't think they are looking for a reason to induce. This practice actually doesn't induce just because you are on anti-coagulants. The midwives are very used to this stuff and have plenty of women delivering in the birth center on Lovenox. But do I need all that extra testing?

Sarah


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## whateverdidiwants (Jan 2, 2003)

The extra U/S are to make sure there isn't IUGR, that the baby is growing properly. (I had an U/S every 2 weeks pretty much the entire pregnancy, and was followed by a peri the whole time because I also have an incompetent cervix). I didn't have any NSTs. WRT to the Lovenox, I was switched back to regular Heparin at 36 weeks because it's easier to reverse, but I'm not sure if that has changed in the last 5 or 6 years or not.


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## Charmie981 (May 30, 2002)

Quote:


Originally Posted by *Girlprof* 
The midwives are very used to this stuff and have plenty of women delivering in the birth center on Lovenox.

I'd like to know more about this. I had a blighted ovum this time, but the OB I was seeing was pretty wary of me birthing outside of the hospital. There are a lot of reasons on both sides of things to consider, but I wasn't entirely convinced that the Lovenox was a contraindicator to OOH birth. Are you using a hospital birth center with CNMs or having an OOH birth? What does it look like your birth will entail _because of the lovenox_ that it might not have to involve otherwise? I figured a hep lock or IV would probably be on the list, but agian, we never got that far.









And if anyone besides Sarah wants to chime in on this, feel free! I can use all of the information I can get at this point







.


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## Girlprof (Jun 11, 2007)

Quote:


Originally Posted by *whateverdidiwants* 
The extra U/S are to make sure there isn't IUGR, that the baby is growing properly. (I had an U/S every 2 weeks pretty much the entire pregnancy, and was followed by a peri the whole time because I also have an incompetent cervix). I didn't have any NSTs. WRT to the Lovenox, I was switched back to regular Heparin at 36 weeks because it's easier to reverse, but I'm not sure if that has changed in the last 5 or 6 years or not.

I will also be switched to Heparin at 36 weeks, I think. I'm going to ask to switch later because I expect to go late and not have an epidural anyway. I'm not sure they'll go for that. What do they do about IUGR if they find it? Thanks for the info.

Sarah


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## myjulybabes (Jun 24, 2003)

Quote:


Originally Posted by *Girlprof* 
I have a question for those of you who were on Lovenox while pregnant. What was your doctor's or midwife's protocol for the third trimester? I just found out that my practice wants to do an ultrasound every month. They also want to do NSTs, but I don't know how often. Is that normal? I don't think they are looking for a reason to induce. This practice actually doesn't induce just because you are on anti-coagulants. The midwives are very used to this stuff and have plenty of women delivering in the birth center on Lovenox. But do I need all that extra testing?

Sarah

Yep, mine wanted a growth u/s every 4 weeks starting at 20 wks. Kinda fudged that a little, got one at 19, then "forgot" to make the next appointment until 27.







I think I probably will go with the next couple on schedule though, just because this is the time I started having problems in my other pregnancies. Like a PP said, they're looking for IUGR and possibly fluid levels. The recommendation for NSTs will probably be weekly, or every 2 weeks. Mine wants a BPP every week after 32 weeks, but I'm fighting for every 2 weeks, maybe an NST in between if they just won't budge. I think some extra testing is definitely indicated, as compared to a "normal" pregnancy, but I'm on the fence about exactly how much.

On the Lovenox vs heparin, I'll be switched at 36 weeks as well, becasue heparin is shorter acting and more reversible. I'm pretty sure this is standard protocol.


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## Girlprof (Jun 11, 2007)

Quote:


Originally Posted by *Charmie981* 
I'd like to know more about this. I had a blighted ovum this time, but the OB I was seeing was pretty wary of me birthing outside of the hospital. There are a lot of reasons on both sides of things to consider, but I wasn't entirely convinced that the Lovenox was a contraindicator to OOH birth. Are you using a hospital birth center with CNMs or having an OOH birth? What does it look like your birth will entail _because of the lovenox_ that it might not have to involve otherwise? I figured a hep lock or IV would probably be on the list, but agian, we never got that far.









And if anyone besides Sarah wants to chime in on this, feel free! I can use all of the information I can get at this point







.

The birth center is in a hospital, but I won't have to have a heplock or an IV. So far, it doesn't look like the birth will be any different because of the Lovenox - that's what I'm hoping anyway and the MWs tell me they do this all the time. My understanding is that around 36 weeks, I'll switch to heparin. Presumably stop the shots when I go into labor. Have the baby (yeah!). Then go back on the shots, I guess. We haven't discussed that part. The extra monitoring is only thing that it seems like will be different.

These MWs (and their affiliated OBs) are right across the hall from a rhuematologist who specializes in clotting disorders so that OB/MW practice takes most of his pregnant patients. So far the MWs all say that the tricky thing is getting to term and birth won't be any different. Keeping my fingers crossed that they are right. I had a completely unmedicalized birth with my first baby and I'd like to repeat that this time around.

Sarah


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## Girlprof (Jun 11, 2007)

Quote:


Originally Posted by *myjulybabes* 
Yep, mine wanted a growth u/s every 4 weeks starting at 20 wks. Kinda fudged that a little, got one at 19, then "forgot" to make the next appointment until 27.







I think I probably will go with the next couple on schedule though, just because this is the time I started having problems in my other pregnancies. Like a PP said, they're looking for IUGR and possibly fluid levels. The recommendation for NSTs will probably be weekly, or every 2 weeks. Mine wants a BPP every week after 32 weeks, but I'm fighting for every 2 weeks, maybe an NST in between if they just won't budge. I think some extra testing is definitely indicated, as compared to a "normal" pregnancy, but I'm on the fence about exactly how much.

On the Lovenox vs heparin, I'll be switched at 36 weeks as well, becasue heparin is shorter acting and more reversible. I'm pretty sure this is standard protocol.

I'm 22 weeks now and I think they are suggesting the monthly ultrasounds starting next months. I don't want to "forget" because I do want the appointment, but I may not want the ultrasound. I guess I have two hesitations. First, there is a serious PITA factor. All these care providers are 35 minutes from my home. Every time I go, it's at least a half a day missed from work. I'm already doing rheumatologist, MWs, blood work at the lab for most appointments. If the MWs could do the US in their office, I think I wouldn't mind, but they seem to want me to go to the hospital. I'll have no life left!

Second hesitation is just more monitoring is more likely for them to decide something is wrong. Despite two early losses, I'm feeling very confident about this pregnancy. But, I do expect a big baby and I don't want them freaked out by that. I also don't want a lot of extra worry and stress that we can't do anything about anyway. They can't treat IUGR, right? I guess with my big baby prediction, it's pretty unlikely I'd have it anyway.

I also expect to go late, probably around 10 days late, and I don't want them freaked out by that either. I guess I'll have to bring these issues up. What happened today is that the MW forgot to talk about the US and NST stuff at the appointment so there was a message waiting for me when I got home from work. That's why I'm lacking details.

Sarah


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## Argonaut (Apr 27, 2005)

I'm being switched to heparin at 36 weeks too, and getting the ultrasounds every 4 weeks. They've been calling them "growth scans", so I'm thinking they're watching his growth and probably fluid levels. My DD was induced due to low fluid, and I didn't even have the clotting disorder then, so I imagine I'm at risk for it even more this time. The NSTs will be weekly, starting at 32 weeks. I have a lot of friggin' appointments, but I try to schedule them all on the same day as often as possible so I don't feel like I'm at one doctor or another like every day..

I'm still trying to figure out how willing I am to go along with the plan of inducing at 39 weeks. When I asked my peri about it, he said that it comes down to that the longer we wait, the greater the risk of stillbirth, and those risks are greater than the risks associated with inducing early. When it's put like that, it's pretty hard to argue with, because even if I had to have the worst nightmare birth I could imagine (c/s, cascading interventions, etc) to produce a live baby, it would still be better than having a stillbirth. Then again, I just wish I knew how great the risk really is. I thought Lovenox treatment made your chances pretty close to what they would be if you didn't have a clotting disorder at all. Anyone know any statistics or anything on that? Also, do the risks vary from clotting disorder to clotting disorder? i.e., Am I more at risk for stillbirth from APS than I would be if I had FVL or MTHFR, etc, since APS is autoimmune and the others are genetic disorders (as far as I know -- correct me if I'm wrong)?


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## Girlprof (Jun 11, 2007)

Maggie, those are questions I have too. Obviously a stillbirth is MUCH much worse than just about the worst birth experience one can imagine that ends with a live baby and a live mama.

But here's the thing for me. I have a very marginal diagnosis. Many many doctors would not treat me with Lovenox given the various test results, though probably most would go for baby aspirin plus extra folic acid. I had a fabulous birth the first time around so I know what birth can be like. If I knew for sure that I definitively had a dangerous and "mainstream" clotting disorder I'd be more open to extra monitoring and possible induction. Instead, I call the doc who diagnosed me "crazy doc" and I suspect he diagnoses 95% of the women who walk in his office with a clotting disorder, often the one he specializes in (that's me). Perhaps more because he openly told me that it's more like 100%. There's a possible alternative cause for my miscarriages. I had a uterine polyp and some of the doctors think that was the main reason. I had the removed before becoming pregnant. So I was willing to do the Lovenox based on crazy doc's recommendation and my OB's hunch. But I don't know how much more I'm willing to do, based on the information that I have.

Sarah


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## myjulybabes (Jun 24, 2003)

Quote:


Originally Posted by *Girlprof* 
I'm 22 weeks now and I think they are suggesting the monthly ultrasounds starting next months. I don't want to "forget" because I do want the appointment, but I may not want the ultrasound. I guess I have two hesitations. First, there is a serious PITA factor. All these care providers are 35 minutes from my home. Every time I go, it's at least a half a day missed from work. I'm already doing rheumatologist, MWs, blood work at the lab for most appointments. If the MWs could do the US in their office, I think I wouldn't mind, but they seem to want me to go to the hospital. I'll have no life left!


Oh yeah, I would not and have not skipped any OB or peri appointments! But the way my doctors do it, the u/s is a completely seperate thing, so I was easily able to do one without the other.

Quote:

I'm still trying to figure out how willing I am to go along with the plan of inducing at 39 weeks. When I asked my peri about it, he said that it comes down to that the longer we wait, the greater the risk of stillbirth, and those risks are greater than the risks associated with inducing early. When it's put like that, it's pretty hard to argue with, because even if I had to have the worst nightmare birth I could imagine (c/s, cascading interventions, etc) to produce a live baby, it would still be better than having a stillbirth. Then again, I just wish I knew how great the risk really is. I thought Lovenox treatment made your chances pretty close to what they would be if you didn't have a clotting disorder at all. Anyone know any statistics or anything on that? Also, do the risks vary from clotting disorder to clotting disorder? i.e., Am I more at risk for stillbirth from APS than I would be if I had FVL or MTHFR, etc, since APS is autoimmune and the others are genetic disorders (as far as I know -- correct me if I'm wrong)?
Yeah, I'm having the same issue, except I have a c-section scheduled for 39 weeks, because I can't be induced (2 prior sections). The peri explained that the risk of stillbirth goes up because the placenta tends to age faster in mamas with clotting disorders. Which sounds pretty logical to me, but I really do need to do a little more research. Doctors can make a lot of things sound logical.







I'm not sure how much I'll find out though, I was under the impression that this treatment protocol is fairly new. I certainly hadn't heard a thing about it 6 years ago when I had ds, and my OB is pretty up on all the "high risk" stuff.


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## Girlprof (Jun 11, 2007)

Josie, you're right. I think my US appts would be separate as well. So perhaps I could "forget" to make them. Hmmm. Well, I'll be talking to the MWs today or tomorrow so that will get me additional info. I'm going to ask them the standard question "What are we going to do with this information?"

Sarah


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## neverdoingitagain (Mar 30, 2005)

Well, here's a little hope for all of you that are dealing with this, as I am.
I had an appointment with the maternal thrombosis specialist a couple of days ago, and after much questioning, finally got him to basically admit and agree that 1) I didn't need to be switched to regular heparin at 36 weeks, 2) the risk of bleeding during a c-section, should one be necessary, is minimal. In fact, he mentioned people being on LMWH during hip surgeries. He also mentioned women giving birth with an IV full of heparin, due to a blood clot.
The only reason he could figure for switching to regular heparin, in his experience, was due to the anaesthiologist(sp?). There is a rare complication that can occur if you should need/want an epidural while delivering. If you are LMWH, and they need to do a c-section, you have 2 choices. Forgo all anaesthic, except for a local, or get general anaesthic.
Unless you plan on having an epidural, you don't need to switched over. We also discussed the options of me either taking LMWH until I'm 38weeks, or staying on it until I deliver.
As for the aging placenta issue, well, not one peep about that. In fact, this is the first time I had ever heard about it.


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## Girlprof (Jun 11, 2007)

Neverdoingitagain, that is very hopeful. My doc has assured me numerous times that they GIVE people heparin/Lovenox for surgery. It's the epidural they're worried about. But I'd love to talk them into a couple of additional weeks before I switch to Heparin or possibly not switch at all. I think in the UK they don't switch.

Sarah


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## orangefoot (Oct 8, 2004)

When I planned my homebirth the OBs drew up a list of things that would need to be done to reduce bleeding post-partum depending on how long it had been since my last shot. Bleeding was their only concern once they had got over the 'really - at home?' question. I didn't switch to heparin: no-one here does.

They insisted on Syntometrine to detach the placenta whatever happened and after a long labour I ended up with ergometrine (horrid) and a 3 hour Pitocin infusion which left me with a very contracted uterus and next to no post-partum bleeding which was what they wanted.

As it turned out I transferred with prolonged rupture of membranes and a babe wedged in with brow presenting. The midwives did everything they could to make my labour peaceful and the OBs were determined to get the babe out without having to do a section because of the risks post surgery as I have an existing dvt.

In the UK it is standard practice for LMWH pregnancy to check the flow throught the placenta, uterine arteries and umbilical cord at 24 weeks and if all looks good then no further US or checks are done. Your chances of thrombophilia related IUGR are next to none if you are anti-coagulated. Your placenta is getting fantastic clot free flow and is less likely to deteriorate than if you were untreated.

If you read about the actual action of LMWH it doesn't stop your blood clotting totally, it just stops it over-clotting which prevents bits breaking off and causing problems.

Sometimes I wonder why docs recommend LMWH then go on with a treatment plan that looks as if you weren't on any medication at all.


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## Girlprof (Jun 11, 2007)

Orangefoot / Rachel, so glad you weighed in on this. You were Chickenlula (?) over at BBC and you've been quite an inspiration for me. I suspect the US docs are acting as if you're not on medication (when you are) because they want to avoid being sued, but perhaps that is just me being cynical.

I talked to my midwife last night and we worked out a solution for the extra monitoring that I feel really good about. They were going to start monthly ultrasounds and NSTs at 26 weeks. At least they can do them in the office, so that makes the whole thing much easier. Plus, I asked what we were going to do with the information. This is a standard midwife question, so fair enough. If there were significant inter-uterine growth restriction, then they would consider induction as early as 37 weeks, depending on circumstances. If we were in that situation, I might be open to induction. But what exactly were we going to do with this information at 26 weeks? Certainly not induce. It occurred to her that they can't even do a NST at 26 weeks because apparently the baby is too small.

So the new plan is this. We can use the 19 week ultrasound as a baseline. We'll do another ultrasound and a NST at 30 weeks. If everything looks good, we'll go with careful fundal measurements as long as everyone is still comfortable. They are worried about the baby being small. I am more worried that they'll discover the baby is quite big and start to wonder about that. I know I can birth a nice big baby, but do they? The midwife assured me that they (or at least she) would not worry about the baby being "too big" but also said, let's just do the fundal measurements, which might even be more accurate than the ultrasound for determining growth.

Best of all, is this. The original plan of monthly ultrasounds, etc., came from a doc at the practice I've never met. I said that I had worked very closely with Dr. M throughout the spring. I've heard very good things about all the docs, but Dr. M saw me through the D&C in December, many months of testing to find the cause of the miscarriages, and the entire first trimester. He knows my situation, he knows me as a person, and I know him. The midwife suggested on her own that all future consults will go only to Dr. M. which is great news to me. So, all in all, I'm very happy with the new plan! Thanks for being a sounding board for me while I figured this out.

Sarah


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## orangefoot (Oct 8, 2004)

Sarah, yes I was that Chickenlula over there!

I'm glad that you have arranged a plan that you are comfortable with: I'm sure that many people think that high risk means no choices and it absolutely isn't so.

My labour didn't turn out how I had hoped but that didn't mean that the planning and negotiation during my pregnancy wasn't worth anything. If ihad gone through the whole 40 weeks thinking I was going to be induced and have to birth in hospital I would have had a very miserable time. I felt comfortable with my decisions and knew that I had covered everything that I was able to control but also knowing that every babe chooses their own labour and you just have to roll with it.

Rachel


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## Charmie981 (May 30, 2002)

I'm really enjoying reading this thread and picking up on some of the experience that you ladies have had. We'll be changing insurance as of October 1, and the new insurance will cover Clomid or metaformin and related expenses, so I think we're going to get VERY proactive about getting pregnant then. I figure, the pregnancy and birth are probably going to be medical, why not the conception







:.

I have not let go of my hope for a homebirth, but I think that will be a decision that is made after 36 weeks or so. I know I will probably be the most obnoxious (er...educated) pregnant woman my doc has ever dealt with, but I think he's up for the challenge, which means a lot coming from this homebirth midwife!


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## TiffanyDanielle (Jul 25, 2007)

Just thought I'd give some of you a bright side.

I have been having biophysicals(NST & U/S) with the peri every week since 32 weeks AND weekly visits with the lazy OB that wants the insurance. Two co-pays and two appointments.

They are taking me off the Lovenox and starting me on the heparin at 36 1/2 weeks(this Friday) and will do the C-section at 38 1/2 weeks.

The bright side in my world? I know my angel is healthy and finally being watched closely. So it's all worth it!

I have heard some pretty nasty stuff about being on Lovenox and getting an epidural. Apparently, according to the hemotologist, Heparin can be reversed in a matter of minutes in any kind of emergency situation. So sucks to have to get two shots a day, but worth it to minimize risks. Prepare for everything!

Off topic, does anyone else's little one get the hiccups in utero at least three times a day?

Positive Thoughts & Good Luck to all!


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## PerkyKP (Nov 15, 2004)

Hi all, I'm new to this thread. It's taken me all day (in bits and pieces) to read it all, and it's been very helpful.

I am hetero for FVL but asymptomatic. My dad and brother have had DVTs and are on coumadin.

DS was a problem-free pg 5 years ago -- I was diagnosed at the tail end of the pg. Since then I've had two m/cs. One at 7 weeks had genetic testing, and she came back normal. I was going to be put on Lovenox but found out I'd m/c'd at the appointment. The other at 11 weeks had no testing, and the peri had decided at that time Lovenox was not called for in my case. Now that I've had two though they agree that it is called for.







:

I'm 5w3d pg, and having an US in 4 days. Assuming there is a heartbeat, they'll start me on Lovenox. They've made it clear they don't want to start it until we've confirmed a viable pregnancy (and tell a story of a time when a lady m/c'd while on blood thinners and how it went bad -- are they trying to scare me??)

*So - my question for everyone who is hetero for FVL - when did they start you on Lovenox?*


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## Charmie981 (May 30, 2002)

I don't have FVL, but my OB told me to start the Lovenox I have left from my last (blighted ovum) pregnancy as soon as the test lights up...the sooner the better. I was on Lovenox when I started spotting with the blighted ovum and I FREAKED OUT, called the doctor thinking "am I going to bleed to death" and they said just to watch the bleeding and if it was one pad front to back in an hour for more than an hour, then come in for a D&C. They were definitely more worried that my body would clot off a viable pregnancy than they were that I'd bleed out during a miscarriage, and I was too







.

I have heard of the protocol you're doctor is using, but I'm glad my doctor doesn't use it. It sounds too stressful!


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## neverdoingitagain (Mar 30, 2005)

I have FVL. I was put on LMWH as soon as I had a confirmed pregnancy. Interesting tactic, telling a pregnant woman horror stories about m/c on lovenox. Nice.








Thankfully, my doctor is a little more sensitive. I was never worried about bleeding any more or less if I m/c'ed since all the LMWH does, is stable my clotting process. Might be different for other blood disorders, thats just what the thrombosis specialist and my doctor told me.
Seems odd that they would want to do an u/s so early. Can they even find a hb at that size?
Are my doctor and specialist just extremely laid-back or are they hiding stuff from me? Seriously, I've been reading stuff that some people are going through on this thread with regards to their peri. and I wonder if I should be more worried.







:


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## orangefoot (Oct 8, 2004)

Quote:


Originally Posted by *neverdoingitagain* 
Interesting tactic, telling a pregnant woman horror stories about m/c on lovenox. Nice.









Indeed

Quote:


Originally Posted by *neverdoingitagain* 
Are my doctor and specialist just extremely laid-back or are they hiding stuff from me? Seriously, I've been reading stuff that some people are going through on this thread with regards to their peri. and I wonder if I should be more worried.







:

No, the doctors here are the same, I think the US is just different


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## whateverdidiwants (Jan 2, 2003)

I've got APA and never came across a doctor that insisted that I wait to start Lovenox until I got a positive test. Some told me to start at the begining of my cycle and some told me to wait 3 days after I ovulated, but none of them wanted me to wait for a bfp. (This was in DC and Florida, btw)


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## Girlprof (Jun 11, 2007)

I think there's a huge range of when to start Lovenox. At least, the women over at the Lovely Lovenox Ladies on baby center seem to start at different times. My losses were early so we started as soon as we got a BFP, and I was fine with that.

Sarah


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## orangefoot (Oct 8, 2004)

I haven't had any losses so that wasn't the reason for me injecting. I started at 3 weeks post ovulation (5 weeks pregnant inthe OB world) because that was the soonest I could get an appointment at the specialist clinic.

They didn't do a scan or a pregnancy test, they just prescribed the LMWH did the paperwork and showed me hoe to inject.

For me, my risk is of clotting and as soon as you are pregnant your hormone levels affect your clotting and therefore the risk increases so injecting sooner rather than later is better.


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## intorainbowz (Aug 16, 2006)

Had the thrombolitic panel drawn today. I'll let you know when I get the results.


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## orangefoot (Oct 8, 2004)

Wendy, I hope that the results give you some answers whichever way they go.







waiting is hard though


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## AuroraB (Jan 10, 2007)

Just popping in to say hello. It seems like a lot of docs want to induce us. I am afraid of it. My doc. says she doesn't want me going past my due date - and of course - a lot of 1st baby births do. I have been on heparin the entire time so I wonder why I read about some of you not wanting to switch over from lovenex. Is lovenex a lot easier?

I tested positive for gestational diabetes and was totally surprised - I am healthy and eat healthy. I was wondering if the blood thinners affect sugar in the blood stream?

Wishing happy births to all


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## PerkyKP (Nov 15, 2004)

Quote:


Originally Posted by *Charmie981* 
I have heard of the protocol you're doctor is using, but I'm glad my doctor doesn't use it. It sounds too stressful!









Yes, it is stressful waiting to know.

Quote:


Originally Posted by *neverdoingitagain* 
Seems odd that they would want to do an u/s so early. Can they even find a hb at that size?

6 weeks is the earliest they would do it, and that's when I made the appointment. From my non-scientific poll of about 20 mamas, I am guessing I have a 50/50 chance of seeing it that soon. If not, I guess I'll come back in a few days.

I guess I am just glad that I've never had a clot. If I had I would hope they'd be more aggressive and put me on it asap like a lot of you.

Thanks for your input!


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## Argonaut (Apr 27, 2005)

Quote:


Originally Posted by *AuroraB* 
Just popping in to say hello. It seems like a lot of docs want to induce us. I am afraid of it. My doc. says she doesn't want me going past my due date - and of course - a lot of 1st baby births do. I have been on heparin the entire time so I wonder why I read about some of you not wanting to switch over from lovenex. Is lovenex a lot easier?

I tested positive for gestational diabetes and was totally surprised - I am healthy and eat healthy. I was wondering if the blood thinners affect sugar in the blood stream?

Wishing happy births to all

I was on heparin for the first two trimesters because my insurance didn't cover lovenox, and then my husband got a new job and our new insurance didn't cover heparin so I switched to lovenox (really silly that they wouldn't cover heparin but would cover lovenox since it's so much more expensive).. When I first switched, I thought I really liked the lovenox better, but now I'm not so sure. I do much prefer only having one shot a day, but the needle IS bigger and the stuff in it seems to sting a lot more. I won't mind having to switch back to heparin at 36 weeks.

I also failed my 1-hour GD test and was wondering if the BCD or anticoagulants had anything to do with it. Luckily though, I passed the 3-hour test.


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## myjulybabes (Jun 24, 2003)

Ok, I need some technical advice from fellow heparin users. How the heck do I get the heparin from the vial into the syringe without making a big mess and wasting medication????? It seems so simple-- stick the needle into the rubber stopper on the vial, slowly pull back the plunger, flick out any air bubbles. Right? But the heparin doesn't want to draw into the syringe easily and I've got bubbles and meds leaking all over the place. Think maybe I got a bad batch of syringes? I guess I was a little overeager to get out of the hospital, so I grabbed my prescriptions and ran and didn't ask for instructions. Ooops.

Oh, and I was dx with GD too, first time out of any of my pregnancies. This is also the first time I've used Lovenox, so IF there's any correlation, my bet would be on that...but it's not something I've really heard of or looked into much. Might just be a sucky coincidence.


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## whateverdidiwants (Jan 2, 2003)

Are you turning the vial upside down before you stick the needle in? There shouldn't be any air if you do it that way.


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## Argonaut (Apr 27, 2005)

Are you drawing the syringe back to the dosage amount before you stick it into the the vial, and then pushing the air into the vial before you try to draw the medicine? Maybe that would help.. I'm not really sure what else to suggest because I've never had that happen before.


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## nini02 (Jun 28, 2007)

Hi all, I'm glad to find this thread. I tested positive for lupus anticoagulant in 2003, and was diagnosed with Antiphospholipid Antibody syndrome. I've had 3 m/c, including one in the 2nd trimester. This time I started baby aspirin and lovenox as soon as I tested positive, and finally had my son. For me, the clotting danger is in the placenta, and since there is no placenta for the first several weeks, I didn't need to start the meds earlier. I was induced at 38 weeks. Like I've seen mentioned, I am also already thinking about the next one...and people think I'm nuts. The shots were a pain, and it was stressful being high-risk, but it was so worth it!!

I haven't had a chance to read all the posts yet, so if this has already been mentioned, I apologize. What worked for me in reducing the pain of the lovenox shots was to take the needle and poke gently at my skin until I found a "dead" spot that didn't hurt. It sounds weird, but there must be more nerves in some spots than others, and this usually worked for me.


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## PerkyKP (Nov 15, 2004)

Quote:


Originally Posted by *luvmybean* 
What worked for me in reducing the pain of the lovenox shots was to take the needle and poke gently at my skin until I found a "dead" spot that didn't hurt.

That a good tip! I'll try it.

So - I had my 6 week ultrasound, and they were pretty sure they saw a fetal heartbeat. I clearly saw a little rythmic flicker on the screen, but she couldn't swear the hb they were measuring wasn't mine. I go back at 7w5d to confirm, but they did start me on Lovenox.

I can't even watch the needle going in. It makes me







: ! So I line it up then look away. But I've done it 3 time so far.

2 questions:

*How much bruising did you have at the injection site?* They warned me it would look like I'm getting roughed up but the 1st one is about 5 mm, 2nd about 2 mm, and the one I did last night I can't even see where I did it! Am I lucky, or is this a problem (I know, I go looking for trouble!) ?

*Are you still taking 81mg aspirin?* They told me to only take acetaminophen and not aspirin, but it looks like one or two of you are continuing the baby aspirin. Was this recommended, or a "do it if you want, it's a may help, no harm issue"?


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## Argonaut (Apr 27, 2005)

Poking around until I find a dead spot works well for me too.

PerkyKP, your bruising sounds about like mine at this point. I would say if you never have to go through the phase of looking like you've gotten roughed up, you're lucky (or skilled). I'm still taking 81mg aspirin, peri's orders.


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## ericaz (Jun 10, 2003)

Couple of questions...I apologize if they've already been answered.

Is the only reason it is recommended to switch to Heparin because you can't have an epidural with the Lovenox? I'm still with my RE and he told me he didn't see any reason why I'd have to switch to Heparin at the end. I'm confused because everyone I've ever talked to who's on Lovenox switches over to Heparin a few weeks before EDD.

Are all pg women on Lovenox considered high risk? What does high risk mean exactly? Can you still use a midwife or is it recommended to use an OB?

TIA


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## orangefoot (Oct 8, 2004)

Quote:


Originally Posted by *ericaz* 
Is the only reason it is recommended to switch to Heparin because you can't have an epidural with the Lovenox?

Yes, in short.

Quote:


Originally Posted by *ericaz* 
Are all pg women on Lovenox considered high risk? What does high risk mean exactly? Can you still use a midwife or is it recommended to use an OB?

TIA









Yes again. Any time you are taking any medication like this during pregnancy I think it's considered high risk. I had my local midwifery team as well as the speicalist high risk team at the hospital. I saw the midwife more regiularly than the hospital but it was the high risk team who outlined my care plan and dosages etc.

About injecting - if you have any stretch marks try sticking the needle in them! I had no pain in my stretch marks and no bruising either - although as this was my 4th child I had quite a collection to choose from







It is true that ther are places that you won't feel the needle go in which seems strange but having a little poke with the needle first is a good way to find them. Also use your lower belly while you still can because later you won't be able to see it and it will get hard to pinch up enough skin.

In the injecting instructions it says to stick the needle in fast like a dart but I found that pressing it on my skin and if it didn't hurt just pressing a little bit harder until the needle went in was much better than stabbing randomly.

IME the bruising is worse if you jiggle the needle about while pressing the plunger so the more still you can be the better. I found that holding the syringe like a pencil and using my first finger on the plunger let me rest my hand on my belly to get some stability and really helped.

My first sticks were bruisy but by the end I didn't have too many which I put down to improving technique! By the time you've done about 50 you get into a good groove and it becomes really easy. I kept all the rubber caps from my pre-filld syringes in a pot and now I can't believe I injected so many times







:


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## 5thAttempt (Apr 22, 2006)

Quote:


Originally Posted by *ericaz* 
Couple of questions...I apologize if they've already been answered.

Is the only reason it is recommended to switch to Heparin because you can't have an epidural with the Lovenox?

Hi!, As orangefoot said, this is pretty much the reason. However if you think about epidural for vaginal delivery, it is not a big deal for some people since they are OK with pain. But if you think about possible c-section (which is usually the reality for 25-40% woman depending on a hospital), then the possibility of epidural is the possibility of being "awake" during the birth of your child, otherwise they have to give you general. I personally switched to heparin just because my OB said that if I have to have a c-section (you never know what will happen), he prefer me to be awake due to some possible complications with general such as: you can vomit into your lungs during labor and it is not a big deal if you are awake, you just cought it out but it is a big deal if you are out. These risks have nothing to do with you being on lovenox, they are simply risks with general. You also might want to be 'present' during the birth of your child.


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## myjulybabes (Jun 24, 2003)

I was just talking to my peri about the heparin switch, and he said something about the heparin being more reversible than the Lovenox too. I didn't question further at the time, since I'm almost definitely having a section and that's enough of a reason for me to switch, but it sounded like he meant if you bled too much from a tear or post partum, there was some other drug they could give you to counteract the heparin.


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## Girlprof (Jun 11, 2007)

Quote:


Originally Posted by *myjulybabes* 
I was just talking to my peri about the heparin switch, and he said something about the heparin being more reversible than the Lovenox too. I didn't question further at the time, since I'm almost definitely having a section and that's enough of a reason for me to switch, but it sounded like he meant if you bled too much from a tear or post partum, there was some other drug they could give you to counteract the heparin.

I think the reversibility question is that if you go into labor "too soon" after you last shot, they can give you something to get rid of the heparin, but not the Lovenox. Perhaps this is again the issue of whether you can have an epidural?

When I inject in my stretch marks, I get truly hideous bruising. But maybe I will try again, per Orangefoot's recommendation, just in case. The stretch marks are quickly becoming out of reach in any case.

I had bad bleeding from the injections twice earlier this week. Was that hitting a vein? That's what I'm assuming though it was weird to have it twice in a row (on different sides) since it hasn't happened before. The last two days have been ok again.

Sarah


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## Robert Goodman (Mar 13, 2006)

Quote:


Originally Posted by *myjulybabes* 
Ok, I need some technical advice from fellow heparin users.

I guess I'm a "user" in that I've administered heparin to others.









Quote:

How the heck do I get the heparin from the vial into the syringe without making a big mess and wasting medication????? It seems so simple-- stick the needle into the rubber stopper on the vial, slowly pull back the plunger, flick out any air bubbles. Right? But the heparin doesn't want to draw into the syringe easily and I've got bubbles and meds leaking all over the place.
Inject an equal volume of air to the volume of liquid you'll be drawing out -- no more, no less.

Robert


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## orangefoot (Oct 8, 2004)

Quote:


Originally Posted by *Girlprof* 
I had bad bleeding from the injections twice earlier this week. Was that hitting a vein? That's what I'm assuming though it was weird to have it twice in a row (on different sides) since it hasn't happened before. The last two days have been ok again.

Sarah

Ouch and owww. Bleeding is surprising and annoing but I think it is from nicking the edge of a blood vessel rather than going through a vein. Some people recommend drawing the plunger up when you first get the needle in to see if any blood comes up and finding another place if it does but that sounds like a recipe for a massive bruise to me









Some days good, some days bad







no rhyme nor reason

- Robert I think you are indeed a 'user'


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## Argonaut (Apr 27, 2005)

Quote:


Originally Posted by *orangefoot* 
Some people recommend drawing the plunger up when you first get the needle in to see if any blood comes up and finding another place if it does but that sounds like a recipe for a massive bruise to me









I did this on heparin and it didn't seem to affect my level of bruising. It did seem that any time I didn't do it would happen to be the time I hit a vein, too. I don't do this with lovenox though.


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## orangefoot (Oct 8, 2004)

I was just thinking that in the upping and downing of the plunger I wouldn't have been able to keep the nedle still = bruising. You must have a steady hand!


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## Argonaut (Apr 27, 2005)

Ah yes, like a jet pilot..







Not really. I do the method of holding it like a pencil so I can rest my wrist on my belly, only when I needed to draw back a bit to see if there was any blood, I would hold it with my thumb and ring finger instead of my thumb and middle, so I could use my index and middle to pull it back. Does that make any sense?


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## orangefoot (Oct 8, 2004)

Yes I can see what you mean







I wish I'd had someone in real life to do injections with and swap tips - it would have made it more fun and less lonely.


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## Girlprof (Jun 11, 2007)

Quote:


Originally Posted by *orangefoot* 
Yes I can see what you mean







I wish I'd had someone in real life to do injections with and swap tips - it would have made it more fun and less lonely.

At least less lonely. Could it possibly be anymore fun???









Sarah


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## orangefoot (Oct 8, 2004)

Sharing the ridiculous chain of events (think 3 children, a big belly and a bouncy bed....) which led to me jigging the needle badly and giving myself a massive bruise would have been funny to other 'injectors' but ordinary folk are just wierded out by injecting full stop and don't see the funny side.

Or is it just me who needs to find something funny to relieve anxiety, pain, sadness, you-name-it


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## Girlprof (Jun 11, 2007)

Ok, that might be kinda funny. I do my injections sans children, but with my kitty cat, usually right next to me. I'm awaiting the day that she tries to rub her head right on the syringe.

Sarah


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## neverdoingitagain (Mar 30, 2005)

That reminds me, last night as I was giving myself a shot, I caught my dd trying to sneak up on me







: I don't remember exactly what I said, er..yelled







but she jumped back to bed quick as lightning. ( I think I said "WHAT ARE YOU DOING!!!")















: as per my dd request

They recommend switching due to epidurals, and a very rare complication that might occur if you are on Heparin. Unfractioned heparin can be reversed, low molecular weight heparin can't. There is little to no bleeding risk with LMWH otherwise. Women have given birth naturally while having a full hep-lock. People are given LMWH before surgeries to prevent possible blood clots.
Unfractioned Heparin needs to be monitored regularly to prevent bleeding, LMWH does not. Most people, myself included, bruise more when using unfractioned Heparin. I have some bruising with LMWH, but not to the extent that I did with Unfractioned Heparin.
I find it ironic that anaesthiologist are so hyper concerned when it comes to Heparin and epidurals, considering that there are so many complications that arise from regular epidurals.


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## iluvmy3girls (Oct 12, 2006)

I'm so relieved to find this thread!!! Here's my story:

I'm a Gravida 5 Para 3, my last pg was an emergency c-section, prior births were vaginal. I tested + for Lupus Anticoagulant after my m/c in 2002, so I have to take Lovenox and Baby Aspirin when pg, even if not positive since it can reverse at any point, which could be fatal to the fetus. At 5 weeks my Lupus Anticoagulant was NEGATIVE!!! I'm almost 12 weeks, so far things are going well. My OB informed me I will have to be a scheduled induction at 38 weeks b/c of the Lupus anticoagulant, which scares me to death 1.) Rupturing? 2) another repeat c/s (I'm typically thick closed and high until close to 40 weeks). I'm going to seek a second opinion. I feel if I'm closely monitored until we are ready, and everything is ok, why do I have to be induced?

Also, thinking of switching to heparin in 3rd trimester, mainly do not know if I can go natural, but want the option of an epidural if necessary.


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## Gabycrunch (Oct 9, 2007)

I have been reading some of what is written here. Very glad to have found other women with the same problem.
Right now I am 25 weeks pregnant. Last year i had a miscarriage during my first trimister and after doing some lab work because of my doctor´s hunch we found my Protein C altered.
Right now i am on clexane and aspirin.
¿Is any one else taking this?


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## ericaz (Jun 10, 2003)

Sorry if this is a repeat question.







:
I'm on lovenox/ba and am 10.5 weeks along. I'm concerned about taking cod liver oil. I want to take it but wonder if there are any contraindications with lovenox. Does anyone know?


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## passionatepreggers (Jun 25, 2006)

I have read some here and thought I would introduce myself. I have a hereditary platelet disorder. It doesn't have a name, and it is a very specific disorder that only runs in my family. We were studied (Yay for being a lab rat!) by UCSF when I was a child. Basically my count is always low (around 80) and my platelets all dropped out of 'how to be a platelet' school. Just wanted to say-


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## orangefoot (Oct 8, 2004)

Just a hello to you injecting mummies to say I'm thinking of you









and a







in case anyone else needs this thread


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## Girlprof (Jun 11, 2007)

Quote:


Originally Posted by *ericaz* 
Sorry if this is a repeat question.







:
I'm on lovenox/ba and am 10.5 weeks along. I'm concerned about taking cod liver oil. I want to take it but wonder if there are any contraindications with lovenox. Does anyone know?

Check the packaging - if there is any - I don't know about cod liver oil. I was on fish oil briefly, but the package says not to take it while taking anti coagulants so I stopped.

Sarah


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## Charmie981 (May 30, 2002)

I know that artificial hormones are a no-no when you have a clotting disorder, but does anyone know if Clomid is on the no list as well? I know, I know..it's artificial hormones, but I don't remember if it carries any elevated risk of clotting or not.


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## ghuaghua (Jul 19, 2005)

I woke up Sunday morning with a horrible "charley horse" that lasted about 5 minutes before it let up. By that time I was in tears because I've never had one that was that painful before. Anyway, so it is now 2 days after that incident and the pain in my leg has not improved at all. Has anyone ever had this happen and had it end up being a blood clot? From the way the muscle spasmed, it truly felt like a charley horse, but if it were I wouldn't expect to have pain this long afterwards. ALSO, because its probably important to mention this, I'm 29w 5d pregnant with my second child. I've had a blood clot following a c-section before...I am not currently taking any blood thinners or anything because my blood tests were all negative for clotting disorders, so we figured it was an isolated situation. Any ideas?


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## ghuaghua (Jul 19, 2005)

OK...since my last post my husband brought me to the E.R. and what I thought was a charley horse turned out to be a blood clot. My question now is, what is the outlook for my homeirth plans? I recall my midwives mentioning in the beginning of the pregnancy that they had another patient who was on blood thinners for some clots and that it wasnt an issue...but I wanted to know if anyone here has had a homebirth and what precautions you had to take.


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## orangefoot (Oct 8, 2004)

Good for him taking you to check it out! Bad for it being a clot though - sorry.

I had booked a homebirth and my midwives took instructions from the high rik OB about how to manage the third stage because that is when the risk of bleeding is greatest if you are injecting anti-coagulants.

They advised a managed third stage with the injection of what is called Syntometrine here but may be something else where you are, then if it was less than 8 hours since the last injection Ergometrine too to contract the uterus even more and shrink the placental site to reduce bleeding further. In the case of continued bleeding after these 2 steps they recommended transfer to hospital and a 3 hour pitocin infusion.

I wasn't happy with the managed third stage in principle but after much reading and considering the circumstances I agreed that it was a sensible precaution.

My midwives were happy with this plan and had prepared a 'Rachel kit' which would be brought to my house with whichever of them attended me on the day.

As it turned out I had SROM for 36 hours with lots of contractions but no good progress and a brow presenting babe so I transferred for a Pit drip to help her out without surgery. After the long labour and augmentation I had all three of the OB's recommended third stage drugs and had very, very little bleeding which at midnight was just what the delivery suite midwives wanted to see.

When I discussed the risks of homebirth with the OBs they all said that their only concern was post partum bleeding; maybe yours will say the same in which case making a plan to reduce the risk of excessive bleeding is the way forward.


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## rach03 (Dec 30, 2006)

Hi, I hope it's okay if I post here. I just had a D&C yesterday for my 2nd miscarriage this year after having a healthy child in 2005. Both miscarriages happened late in the 1st trimester after seeing a healthy heartbeat. My OB is going to be testing me for clotting disorders (among other things), and I want to be prepared with a list of all the "full panel" to be sure I get tested for everything.

Could anyone point me to an article or website that lists these? I'm trying to compile a list of tests. Although she said we'd be testing for everything this time, I want to make sure everything is covered. I'm seeing things like protein deficiencies which I do not know about, and I want to make sure everything gets checked. Not just a couple clotting disorders, I want all my bases covered.

My grandfather has polycythemia, and my mother and aunt were unable to have a 2nd child after having 1st normal pregnancies. I'm hoping this is all related and I can get a diagnosis and go on to have a 2nd child.

Thank you


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## neverdoingitagain (Mar 30, 2005)

First of all :







I know how difficult it can be to have a m/c. The need to understand why can be overwhelming at times. I hope that you are taking care of yourself, during such a sad and difficult time.
I can't really help you with the articles but I'm sure there are a few women on here who can help you.

Ghuaghua, thats exactly how my DVT presented itself. Around the same time too, oddly enough. I thought I pulled a muscle in my groin though. where did your clot present? I'm assuming the calf, since it felt like a charley horse? Did they say it was a DVT or a phlebitis?


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## ghuaghua (Jul 19, 2005)

:







:







:

Quote:


Originally Posted by *neverdoingitagain* 
First of all :







I know how difficult it can be to have a m/c. The need to understand why can be overwhelming at times. I hope that you are taking care of yourself, during such a sad and difficult time.
I can't really help you with the articles but I'm sure there are a few women on here who can help you.

Ghuaghua, thats exactly how my DVT presented itself. Around the same time too, oddly enough. I thought I pulled a muscle in my groin though. where did your clot present? I'm assuming the calf, since it felt like a charley horse? Did they say it was a DVT or a phlebitis?

Yep, mine is in the calf...which they said is less risky than my other one which was in the groin. They said it was a dvt. I must say that if it had to happen, I'm glad it was in the third trimester so I only have 7-12 weeks left for injections...:/


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## neverdoingitagain (Mar 30, 2005)

Quote:


Originally Posted by *ghuaghua* 







:







:







:

Yep, mine is in the calf...which they said is less risky than my other one which was in the groin. They said it was a dvt. I must say that if it had to happen, I'm glad it was in the third trimester so I only have 7-12 weeks left for injections...:/

Yup, that does make it easier, injection wise. By the time you give birth (hopefully around 40 weeks) you should be pretty much in the clear. I was told that women have given birth naturally with an IV full of heparin.
Just don't let them talk you into an induction. I think you would have a better chance going natural, if you aren't able to do a homebirth. Epidurals, c-sections all increase your chances of developing a clot, and an induction can easily lead to both.
If you go into labor early, say 34-36 weeks, they may have to do something with the clot, involving a shunt, to prevent the clot from travelling. I can't remember what its called








Good luck! Hope you feel better soon, and get the homebirth you wished for.


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## orangefoot (Oct 8, 2004)

Rach I am so sorry to hear of your losses and I can't imagine how you must be feeling right now.

The blood tests you need are called a full thrombohpilia panel. If you click the link below you will see what they test for. All of the thrombophilias can be treated during pregnancy in one way or another and if you get a diagnosis your chances of having a full term healthy baby are very very high.

http://142.238.64.246/search.asp?ParNum=703

Right after a loss is not the best time to be tested though, you will need to wait at least 6weeks for your hormone levels to return to pre-pregnancy levels to get accurate results. Testing too soon can give false positives and inaccurate levels.

Odd though it may seem, finding that you have a thrombophilia means that you can actually *do* something and hopefully you will be back here soon to tell us that you can do something to help you through another pregnancy and birth.

Hugs to you
Rachel


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## rach03 (Dec 30, 2006)

Orangefoot, thank you very much. My OB did say that some of the tests would have to wait 6-8 weeks, and some of the tests we could do next week after my follow up (maybe the auto-immunes and things like that).

Thank you so much for the info, I will check out that link. And I'm positive I will be coming back to tell you guys that I'll be able to have another baby









Tannis, thanks for the hugs


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## Girlprof (Jun 11, 2007)

Quote:


Originally Posted by *rach03* 
Orangefoot, thank you very much. My OB did say that some of the tests would have to wait 6-8 weeks, and some of the tests we could do next week after my follow up (maybe the auto-immunes and things like that).

Thank you so much for the info, I will check out that link. And I'm positive I will be coming back to tell you guys that I'll be able to have another baby









Tannis, thanks for the hugs









Hey Rachel. Just wanted to send you some more hugs over here. Orangefoot has super advice and has been an inspiration for me and I'm sure many others. It's completely right that if you turn up positive for something thrombophilia like, it is treatable and you have really excellent chances of a successful pregnancy. Let us know how you're doing!

Sarah


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## A&A (Apr 5, 2004)

Quote:


Originally Posted by *rach03* 
Hi, I hope it's okay if I post here. I just had a D&C yesterday for my 2nd miscarriage this year after having a healthy child in 2005. Both miscarriages happened late in the 1st trimester after seeing a healthy heartbeat. My OB is going to be testing me for clotting disorders (among other things), and I want to be prepared with a list of all the "full panel" to be sure I get tested for everything.

Could anyone point me to an article or website that lists these? I'm trying to compile a list of tests. Although she said we'd be testing for everything this time, I want to make sure everything is covered. I'm seeing things like protein deficiencies which I do not know about, and I want to make sure everything gets checked. Not just a couple clotting disorders, I want all my bases covered.

My grandfather has polycythemia, and my mother and aunt were unable to have a 2nd child after having 1st normal pregnancies. I'm hoping this is all related and I can get a diagnosis and go on to have a 2nd child.

Thank you



















Factor 2 (usually written in Roman numerals......Factor II) and Factor 5 (again usually in Roman numerals.....Factor V, more specifically called Factor V Leiden) are a couple of common ones.


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## GooeyRN (Apr 24, 2006)

Subbing to learn more, I am having blood clots in my legs during this pregnancy, and had one after my last delivery. Factor V Leiden runs in my family on my dads side but I was never tested for it.


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## chilliepepper (Oct 14, 2005)

Hey, I've been told that when I'm not pregnant, I should still use Lovenox if I'll be flying or going on a long car trip. I can't remember...am I supposed to inject it the night before the flight, or the morning of? And am I supposed to inject it again after landing (24 hours after the before-flight injection)?


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## orangefoot (Oct 8, 2004)

Is there anyone you can ring to ask?

In my mind I would think that the best time would be on the day of the flight because LMWH activity peaks around 4 hours and tails off from there. If it were me, I would also do another shot 24 hours later.


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## 5thAttempt (Apr 22, 2006)

I think that you should call a dr who told you so. Also, get a pair of compression sox - they are great. And drink a lot - this will motivate you to move around and go to the lavatory more often - the best prevention of a clot.


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## orangefoot (Oct 8, 2004)

Chilli

Have you called anyone yet? I hope you can get a plan before you set off tomorrow.

My hemo has also told me the same as yours and I have syringes at home if I need them. I remember him telling me that with PSD already there was not much harm I could do myself injecting as I saw fit for bedrest or travel but that self-dosing with coumadin was another matter entirely.


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## chilliepepper (Oct 14, 2005)

I've forgotten about this question for the past few hours (packing and scrambling to get ready to go), and now it's too late to call the doctor. Besides, the doctor who mentioned to do this, his accent and way of speaking were so unfamiliar to me that I couldn't understand what he was telling me to do.

I think I'll just inject in the morning. I am going to have a problem with getting up and walking around a lot on the flight, because I'm HOPING our runny-nosed, coughing, miserable 8-month old will sleep on me for most of the flight. Luckily our longest leg is 4 1/2 hours or so.

I'm not too worried about clots. Good grief, I've flown so many times, even pregnant, even crossing the Pacific in economy class, before knowing I had a bcd and I've never had a problem.

Thanks.


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## Girlprof (Jun 11, 2007)

Hi all,

So my pregnancy is going well and we're headed into the home stretch. I'm 30 weeks and at our appointment today we discussed all the various tests and monitoring that we'll do for the rest of the time. I am happy with this practice - I'm with midwives who are backed by OBs that I like very much. But I also wanted to run a reality check with you all to see if this sounds reasonable.

At 32 weeks, I'll start appointments every 2 weeks. Then once a week after 36 weeks.

Starting at 32 weeks they will do NSTs every 2 weeks. Protocol is once a week but my APS is so mild that they had no problem with every 2 weeks.

We'll do a BPP or maybe more than one, but I'm not sure when. Later.

We did an US for a growth check today. Our little girl is measuring just over 4 pounds (92nd percentile). The doc wants to do another growth scan at 36 weeks. I am thinking about declining this. They want to be sure the baby is not too small. I don't want them to get freaked out when they discover the baby is quite large. I am happy to do the fundal measurements, but I may fight them on the US.

We'll switch from Lovenox to heparin at 36 weeks. No induction necessary. When I go into labor, I stop the shots and re-start after delivery. Then Lovenox for 6 weeks.

It's an awful lot to process so thanks for letting me think out loud a bit here.

Sarah


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## momoftworedheads (Mar 6, 2003)

Hi,

My name is Jen. I have MTHFR, the A and C alleles. I had to take Lovenox in my third pregnancy. I also had to take it after my recent loss.

We are going to TTC next month and I am wondering if there are any supplements or vitamins any of you take to get ready to TTC. With our first 3 children, we really did not have to TTC, we talked about getting pregnant and it happened. With my first loss (12/05) @ 6 weeks and
(10/07) @ 16 weeks, I was not on lovenox yet with either one. I was told that the next time I am pregnant, I will go on Lovenox as soon as I have a + pregnancy test.

Thanks!

Take care,


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## Girlprof (Jun 11, 2007)

Hi Jen,

I'm sorry about your losses. It's really hard. The good news is that the Lovenox does seem to really help.

I would think with the MTHFR stuff going on, you might want extra folic acid while TTC. Perhaps a lot extra. I'm heterozygous with the C-mutation and they had me on 4mg of folic acid plus baby aspirin every day while TTC.

Sarah


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## taradt (Jun 10, 2003)

I was taking high doses of B6, B12 and folic acid as well as a daily baby asprin.


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## orangefoot (Oct 8, 2004)

Jen - good luck with ttc. I hope it just happens. I have no advice on supplements but what the pps say sounds reasonable.

Sarah - Are you comfortable with the plan? If you are then my opinions don't count!

Your only doubt sems to be the US. What would they do/recommend if your babe looked small or large at 36 weeks? The answer to that q will guide your decision.


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## Girlprof (Jun 11, 2007)

Quote:


Originally Posted by *orangefoot* 
Jen - good luck with ttc. I hope it just happens. I have no advice on supplements but what the pps say sounds reasonable.

Sarah - Are you comfortable with the plan? If you are then my opinions don't count!

Your only doubt sems to be the US. What would they do/recommend if your babe looked small or large at 36 weeks? The answer to that q will guide your decision.

I'm trying to figure out if I'm comfortable with the plan. My worry about the US is that they will be checking to see if the baby is too small and they will discover that she is too big. I'm comfortable declining that US. If external measurements start to reveal that the baby is not growing well, then I'd do the US for sure. The idea of me having a baby that measured small ever is mostly just amusing to me. If it ever actually happened, I'd be interested in figuring out what was going on.

I'm not sure I'm comfortable with the NSTs. And I don't even feel like I know enough to know why I would be uncomfortable. Orangefoot, do you have an opinion on these?

Sarah


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## sarahtar (Mar 19, 2004)

New here. After one healthy baby (born at nearly 9 lbs and 42 weeks, after quite a bit of bleeding during the first trimester), I had two miscarriages this year within 6 months of each other. I went in for some testing, found out today that I have a MTHFR mutation. She said it was a mutation in the "A" gene. (She also said it had some numbers, but she tends to just use the letter, either A or C.) Both genes in the pair are mutated (thanks, mom and dad!).

ANYWAY. The perinatologist I was working with characterized it as an inability to metabolize folic acid, that I'd need to take lots of Folic Acid, B6, and B12. She did NOT say anything about a clotting disorder, baby aspirin, etc. She said she'd send me some articles and have me call her when I got them and we could talk more. (Really, she was squeezing in a call with me between patients because I had told her nurse that I really just wanted to know the results and we could set a time for a lengthier phone call later.)

So, is there a different type of MTHFR mutation that doesn't cause the clotting issues? Or did she just leave that tidbit out? I'm really very confused here.

(Strange, if I do have a clotting disorder, because until recently, I've had a different clotting disorder - an autoimmune disorder called ITP which results in the blood being unable to clot. So to go from one extreme to the other would be a little strange.)


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## Charmie981 (May 30, 2002)

From what I understand in my reading about MTHFR mutations, a homozygous mutation (both genes) would result in a slightly higher risk of clotting.

I have a heterozygous mutation and my doc wants me on blood thinners, although I'm not really sure how much I think it's necessary because everything I read about it was very hazy on whether there's any proven benefit to the blood thinners. Given my history (7 pregnancies, two kids), I'll try just about anything, though. Not very evidence-based of me, but oh well...

I'm also supposed to be on 4mg of folic acid during pregnancy, because MTHFR does mean you're less able to metabolize folic acid. That was the only thing that seemed universal in my reading....they all said that you'll need higher doses of folic acid.


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## orangefoot (Oct 8, 2004)

Girlprof - sorry it's taken this long to get back to you but I wanted to have 5 mins quiet so what I wrote would make sense!

I am not sure of the value of NSTs unless you are concerned about your babys wellbeiing and dont think you would notice any changes in movement or somethng untoward.

NSTs seem to be accepted as standard practice over there with the LL Ladies and I've never really understood it because they are uncommon here. The thought of dragging over to the hospital to lie for an hour clicking a button just sees terribly time consuming and anxiety inducing to me.

In my mind coes back to the same thing I always say: why continue to treat us as patients at risk of clotting. Aren't we being treated to prevent problems?

If you would feel more comfortable knowing that the docs know that your babe is kicking about and its heart rate is ok then I think you should do it. If you feel comfortable with trusting your own feelings of the baby's movement then don't; you could still have test if you were ever unsure or concerned.

In the last weeks of my pregnancy I wanted to focus on myself and my family and be around positive women who would strengthen me for my labour. I didn't want to keep thinking about what could go wrong or visiting the hospital every five minutes. Maybe I'm odd to think that way in this situation but I felt medicalised enough injecting every day and ignoring the home birth nay-sayers.


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## momoftworedheads (Mar 6, 2003)

Quote:


Originally Posted by *sarahtar* 
New here. After one healthy baby (born at nearly 9 lbs and 42 weeks, after quite a bit of bleeding during the first trimester), I had two miscarriages this year within 6 months of each other. I went in for some testing, found out today that I have a MTHFR mutation. She said it was a mutation in the "A" gene. (She also said it had some numbers, but she tends to just use the letter, either A or C.) Both genes in the pair are mutated (thanks, mom and dad!).

ANYWAY. The perinatologist I was working with characterized it as an inability to metabolize folic acid, that I'd need to take lots of Folic Acid, B6, and B12. She did NOT say anything about a clotting disorder, baby aspirin, etc. She said she'd send me some articles and have me call her when I got them and we could talk more. (Really, she was squeezing in a call with me between patients because I had told her nurse that I really just wanted to know the results and we could set a time for a lengthier phone call later.)

So, is there a different type of MTHFR mutation that doesn't cause the clotting issues? Or did she just leave that tidbit out? I'm really very confused here.

(Strange, if I do have a clotting disorder, because until recently, I've had a different clotting disorder - an autoimmune disorder called ITP which results in the blood being unable to clot. So to go from one extreme to the other would be a little strange.)

Hi!
You need 2 alleles of MTHFR to have clotting issues. You have A1298c. My son also has this allele and he does not have clotting issues. Since he is a male, he also does not need folic acid supplementation.
I know no matter what allele of MTHFR you have, you need more folic acid that average.

Take care,


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## sarahtar (Mar 19, 2004)

Quote:


Originally Posted by *momoftworedheads* 
Hi!
You need 2 alleles of MTHFR to have clotting issues. You have A1298c. My son also has this allele and he does not have clotting issues. Since he is a male, he also does not need folic acid supplementation.
I know no matter what allele of MTHFR you have, you need more folic acid that average.

Take care,

OH, thank you so much for clearing that up. I'm waiting for the printed info from my doctor (including a specific description of exactly what's wrong with me) so have felt like I'm not quite dealing with ALL of the information I need to really understand this. This information helps A LOT.


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## Girlprof (Jun 11, 2007)

Hi Orangefoot,

Thanks. I've been working through how I feel about the whole thing and I think I'm okay with the NSTs. I think at my practice they do not take an hour. That would be crazy! Our plan is up to 30 minutes, but we're waiting for two reactions from the baby. Given this baby, I doubt that will take 30 minutes. I've been mostly worried about whether the NSTs could lead to unnecessary intervention, but that doesn't seem to be the case - at least not at my practice. REALLY interesting to hear that they don't even do them in the UK (that's where you are, right?). If I were doing them every week, that would be too much. But I have to go to the appt every two weeks from here on out anyway. Thanks again for your input!

Sarah


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## ericaz (Jun 10, 2003)

i'm hoping to avoid induction and would like information i can pass along to my ob. he has said that the only drug he knows of that can reverse heparin is protamine sulfate and he does not like using it because it has a lot of really scary side effects. i googled it and it does sound scary. are there any other methods of avoiding induction while on lovenox (which i'm on now and am 15 weeks)/heparin??


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## neverdoingitagain (Mar 30, 2005)

Quote:


Originally Posted by *ericaz* 
i'm hoping to avoid induction and would like information i can pass along to my ob. he has said that the only drug he knows of that can reverse heparin is protamine sulfate and he does not like using it because it has a lot of really scary side effects. i googled it and it does sound scary. are there any other methods of avoiding induction while on lovenox (which i'm on now and am 15 weeks)/heparin??

Depends on what kind of bleeding disorder you have. If its Factor V leiden, then there is no reason, in my experience, to get induced. The only thing that would require you to not be on heparin, is an epidural. You can give birth while on low molecular weight heparin or unfractioned heparin, especially if its a preventive rather than theraputic dose. You could also stop using the heparin at 38 weeks, modifying your diet instead.
If you end up needing a c-section, they will not do a spinal or epidural. They will put you under general instead.
Your best bet for avoiding a complications at that time is NCB, since an induction can lead to an epidural or even an c-section.
This is in a normal, complication free pegnancy though. Other things may crop up that will modify your birth plan.
hope this helps somewhat!


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## orangefoot (Oct 8, 2004)

Erica

Have you asked your OB why you would be induced? In most cases OBs will cite the incompatability of LMWH and spinal or epidural anaesthesia as a reason for induction but if you are prepared for a drug free labour and agree to a general in the case of a section as neverdoingitagain said, then the argument falls down.

Once you are medicated there is no reason to suspect that your placenta will be getting clotted and not working properly by 38 weeks or that your babe won't be growing so would be better of out than in. If docs cite this as a reason for early induction ask them what exactly they are medicating you for and what they think LMWH is actually doing.







:

If you put it out there that you don't want to be induced you put it in their court to make a plan for how they would deal with a natural labour and x,y or z occuring.

Kep n mind that even if you are in a major car accident LMWH won't make you bleed to death; it doesn't stop you clotting, it stops you _over_ clotting.


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## airmide_m (May 8, 2006)

Is there any connection between blood clotting disorders and infertility? We have been TTC for almost 2 years now. I have periods that are VERY heavy and clotty. And once at the hospital for something else, they were taking a blood sample for tests and the nurse asked if I had ever been diagnosed with a clotting disorder, because my blood was clotting before it even got into the tube.


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## neverdoingitagain (Mar 30, 2005)

Yes, definately. I had 3 m/c's before I got pregnant with a viable pregnancy, and there were a couple years where I didn't get pregnant.
With my last pregnancy, I happened to be doing things to increase circulation and reduce clotting. I had no idea I had a blood clotting disorder.
An overclotting blood disorder can cause blood clots in the placenta, even before a pregnancy is detected, with the more severe disorders. Its one of the reasons they suggest an anti-coagulant from the beginning of a pregnancy. Of course a change in diet can be very helpful also. Red grape juice, ginger, garlic, chia seed(also known as Salba) gingko Bilba, ginseng, and serrapeptase are all supplements that can be helpful, though some are counter-indicated in pregnancy.
Here is a good article to check out, might give you some ideas until you get the results of your test
http://www.fvleiden.org/publications/midwife.html
Good luck, hope it helps.


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## airmide_m (May 8, 2006)

Thanks for the suggestions! I'm re-reading through this thread since it's been a looong time since I read everything. I have requested blood clotting tests from my doctors but they have said no. I am finally going to see an R.E. Tuesday after next.

I have never been pregnant and had miscarriage that I know of. But of course if it's happening before the baby can implant, I could have had dozens and not known it.

I'm going to ask the R.E. about this, and also about immune factors and stealth infections.

I already take some ginger but I will look into the other supplements. And I am going to be more faithful about taking the baby aspirin every day.


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## Girlprof (Jun 11, 2007)

I just want to ask for clarification on one thing.

There are certain clotting disorders that increase the risk of late term loss. But if you're on the anti-coagulants, then you have presumably taken care of this risk. Is that correct? This is really for my own peace of mind. Orangefoot, did I understand this right? Thanks so much.

Sarah


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## orangefoot (Oct 8, 2004)

Quote:


Originally Posted by *Girlprof* 
I just want to ask for clarification on one thing.

There are certain clotting disorders that increase the risk of late term loss. But if you're on the anti-coagulants, then you have presumably taken care of this risk. Is that correct? This is really for my own peace of mind. Orangefoot, did I understand this right? Thanks so much.

Sarah

All the research indicates that women who have had losses early or late without treatment have a much better likelihood of a live birth.

Quote:

Pregnancy outcome

Pregnancy and neonatal outcome were not among the primary outcomes of this study and were not reported in all studies. Successful pregnancy outcome was defined as a live birth and excluded neonatal death. Data were insufficient to report on other pregnancy outcomes such as preeclampsia. Pregnancy outcome was reported in 2215 pregnancies treated with LMWH, with 94.7% successful outcomes. These were subdivided as follows: 370 pregnancies with LMWH given for RPL,(Recurrent Pregnancy Loss)with 85.4% successful outcomes, and 1845 pregnancies with LMWH given for thromboprophylaxis or the treatment of VTE, with 96.6% successful outcomes.

If you consider that it is generally accepted that 20% of pregnancies end in early loss 84.5% is better than the odds for the ordinary woman in the street and quite amazing considerig their previous losses.

Nothing can ever be certain; healthy women can suffer late term loss but if you are on LMWH it is working to keep you, your placenta and your babe clot free and therefore greatly reducing the risk of a clot proving fatal to either of you.

Anecdotally, my placenta withh dd1 was gritty looking and at the time the midwives asked me if I was a smoker because it didn't look very good for a 40+2 placenta. That 'grittiness' was clottiness which was not in evidence in my lovely shiny LMWH placenta.


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## ericaz (Jun 10, 2003)

Quote:


Originally Posted by *neverdoingitagain* 
Depends on what kind of bleeding disorder you have. If its Factor V leiden, then there is no reason, in my experience, to get induced. The only thing that would require you to not be on heparin, is an epidural. You can give birth while on low molecular weight heparin or unfractioned heparin, especially if its a preventive rather than theraputic dose. You could also stop using the heparin at 38 weeks, modifying your diet instead.
If you end up needing a c-section, they will not do a spinal or epidural. They will put you under general instead.
Your best bet for avoiding a complications at that time is NCB, since an induction can lead to an epidural or even an c-section.
This is in a normal, complication free pegnancy though. Other things may crop up that will modify your birth plan.
hope this helps somewhat!

I tested abnormal for antithrombin III. I'm not sure how that compares to Factor V Leiden in terms of labor, although I do know Factor V Leiden is a more serious condition than what I have.

I was told the reason they induce is because they can monitor much more closely - they'd know exactly when I stopped the Lovenox. According to my OB if I tore a bit (vaginally) I could potentially hemmorhage. Is that not true? I don't want to do anything stupid to risk my health but I certainly want to avoid induction if possible. I just want to make sure I have ALL my options in front of me.
My doc knows I want to go natural if possible - I did with my first and hope to do it again. That said, it does worry me slightly that I would be unable to have an epidural if labor was extremely long. Not that I'm expecting that but you never know.

Truthfully, as much as I'd love to go natural again, I'm less adamant about it than I was with #1. I had a very horrible missed miscarriage at home almost a year ago and that sort of changed my mind about how much pain a person can take before they lose it. In any case, what is the deal with LMWH and epidural. Why can't you have one?
What I do want to avoid, though, is a C-Section. The rates where I am (outside of Philly) are deplorable. But I've spoken with a few friends who are very active in the birthing community (including two midwives) and was assured that if I do need to be induced it can be done in a way that will be gentle. My OB assured me of that as well.

I'm interested in the diet modification and stopping the LMWH at 38 weeks. Do you know the risks of stopping at that point in the pregnancy? I was under the impression that during birth and immediately post partum brings about the greatest concern for a clot. And what exactly would the diet entail? I know about garlic and raw grape juice (both of which I consume regularly). Is there something else?

As for this being a normal, complication-free pregnancy, that's debateable.







Four weeks ago I slipped going downstairs and shattered my ankle. I needed surgery the following day.







: Ironically, the orthopedist was pretty happy to hear that I was already on ba and LMWH since I'd be immobile for weeks and a clot would be even more risky.

One more thing - I'm meeting with the perinatologist for a consult in two weeks. It seems as though the OB is relying on this guy to give me the ok or the nay to skip induction so I'd like to be prepared with what kind of questions to ask and what I can say if he seems to think induction is the only option. My OB is open-minded - to a certain degree. He told me in cases like this we have to try and think with our minds, not our hearts. I get the melodramatics but also don't want the medical establishment to make my decision for me.
Any advice on what I can bring to the table for the consult??
Thanks so much!


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## neverdoingitagain (Mar 30, 2005)

With an epidural, there is a small risk of a blood clot forming in the spine. This could cause permanent paralyasis. Anaesthiologist won't give you an epidural for this reason. As for hemorraging during tearing, I would be more worried about the placenta, but anyway... You are less likely to tear if you went natural than induced, or with an epidural. There is an even more increased chance with a c-section, including clotting.
Check out the link in my earlier post, it has information about diet modification.
I was induced with my first baby. If you can avoid medical induction, do so. Pitocin is horrible. It is much more painful than you can ever imagine.
You don't necessary have to stop the LMWH at 38 weeks, you could take it until you deliver. It will NOT cause you to bleed more than usual, though unfractioned heparin could. LMWH will just keep you from clotting more than usual.
Just remember that the US tends to be much more cautious and litigious than other countries. They may want a lot of testing and interventions to cover their butts.


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## Girlprof (Jun 11, 2007)

My understanding is that tearing while on Lovenox or something similar would not be a big deal. My doc assured me that I could get in a bloody car crash while on this drug and all would be fine in terms of bleeding. Though of course he did not recommend crashing my car to test this out.

It seems that I might be able to stay on Lovenox rather than switching to heparin, which I would prefer. Orangefoot, it is also helpful to hear about that shiny good-looking LWMH placenta of yours! My first placenta looked fine even at 41w 2d and this whole clotting diagnosis may be overkill in my case.

I had my first NST on Wed and it was very nerve-wracking for me, but my baby is fine. I wish it would work for me to skip the additional monitoring and just surround myself with positive thoughts, but that is not how my brain works. So I think I am going to aim for staying on the LWMH, doing the NSTs, and imagining my shiny clot-free placenta for the next few weeks. Thanks everyone!

Sarah


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## ericaz (Jun 10, 2003)

Quote:


Originally Posted by *neverdoingitagain* 
With an epidural, there is a small risk of a blood clot forming in the spine. This could cause permanent paralyasis. Anaesthiologist won't give you an epidural for this reason. As for hemorraging during tearing, I would be more worried about the placenta, but anyway... You are less likely to tear if you went natural than induced, or with an epidural. There is an even more increased chance with a c-section, including clotting.

What could happen to the placenta?

Quote:


Originally Posted by *neverdoingitagain*
I was induced with my first baby. If you can avoid medical induction, do so. Pitocin is horrible. It is much more painful than you can ever imagine.

Yeah, I've heard all the horror stories about Pitocin. My doc said we could start out by breaking my water and then seeing how it goes. Of course, I do realize that anything can happen after you break the water - including needing the Pitocin. From my understanding, though, there are ways to administer Pitocin (very, very slowly) so that it's less intense. Anyone have that experience or know someone who has?

Quote:


Originally Posted by *neverdoingitagain*
You don't necessary have to stop the LMWH at 38 weeks, you could take it until you deliver. It will NOT cause you to bleed more than usual, though unfractioned heparin could. LMWH will just keep you from clotting more than usual.
Just remember that the US tends to be much more cautious and litigious than other countries. They may want a lot of testing and interventions to cover their butts.

Ok, so to be clear...there's no other reason to stop the LMWH (and switch to Heparin) at 38 weeks other than I would be unable to have an epidural?? I'm assuming there has to be other reasons as well, especially since you brought up the litigious factor. Basically, the docs want as little risk as possible and being off of everything ahead of time should reduce those risks, no?

Argh, this is worrisome. On one hand I want nothing more than to have another short, beautiful, natural birth, but on the other I would like all of my options open and feel confident that I've limited potential risks (as a result of the clotting factor/drugs) as much as I can.
Seems like there's no easy answer.







:


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## kwilki8 (May 24, 2005)

I see that this thread has been quiet for a bit, so I hope someone can help me with my question.

By way of introduction, I am currently 17 weeks pg with #2 and I have a protein C deficiency that was diagnosed at about 13 weeks. My ob ordered the tests because I developed pre-eclampsia in my previous pg and dd had IUGR, for which a cause was not determined at the time. I feel pretty fortunate to have gotten the diagnosis since I have never had any clotting issues or losses to prompt testing.

I have been doing lovenox injections for several weeks. A couple of hours after yesterday's injection, I noticed that I had a really tender spot about an inch below the injection site. When I felt it, there was a huge, hard lump below the skin that is very tender/painful to the touch. It's still there and still hurts. Does anyone know what this would be or had this happen before? It kind of freaks me out.


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## Girlprof (Jun 11, 2007)

Quote:


Originally Posted by *kwilki8* 
I see that this thread has been quiet for a bit, so I hope someone can help me with my question.

By way of introduction, I am currently 17 weeks pg with #2 and I have a protein C deficiency that was diagnosed at about 13 weeks. My ob ordered the tests because I developed pre-eclampsia in my previous pg and dd had IUGR, for which a cause was not determined at the time. I feel pretty fortunate to have gotten the diagnosis since I have never had any clotting issues or losses to prompt testing.

I have been doing lovenox injections for several weeks. A couple of hours after yesterday's injection, I noticed that I had a really tender spot about an inch below the injection site. When I felt it, there was a huge, hard lump below the skin that is very tender/painful to the touch. It's still there and still hurts. Does anyone know what this would be or had this happen before? It kind of freaks me out.

I got a lump on my first or second injection. It hurt like crazy. But I think it's normal and happens sometimes, though I don't know why. I started icing the injection site for about 5 minutes before and after the injection and I haven't had any further lumps.

Anyone else?

Sarah


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## ericaz (Jun 10, 2003)

I get those lumps. Quite a bit, actually. I haven't tried icing prior...maybe I'll give that a go. The nurse at my OB office said the reason for the lumps is when some blood gathers underneath the skin at the injection site.

Another question...I thought I was supposed to insert the needle on an angle and then inject slowly. But then a neighbor who's also on Lovenox told me she was told to go in fast, straight and plunge quickly.
In any case, I've been doing the shots for weeks now and I still have no idea why sometimes it doesn't hurt much or leave a mark and others it burns like hell and leaves a bruise.







:


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## ericaz (Jun 10, 2003)

Me again.







I hope someone responds soon. I'm sort of in a jam.
My RE ran the blood clotting tests when I was ttc #2. I insisted, wanting to cover all my bases. My antithrombin III level came back raised. I know it's a deficiency that's abnormal but my RE thought it would be wise to take Lovenox/BA after a + hpt because, according to him, abnormal is abnormal. I scoured the web and could only find one document that said an abnormal is only an abnormal with antithrombin III when it's a deficiency - a raised level is inconsequential. So, I told me RE and he said Lovenox is such an innocuous drug so why not just continue...
So, I'm 18 weeks along and went to see the perinatologist today to talk over the Lovenox protocol and to check out my cervix length (I've had two LEEPs so we're periodically checking my cervix to make sure it doesn't turn incompetent) and after he reviewed my labs from the RE he told me in his professional opinion there's absolutely no reason for me to be on blood thinners. I've had one term live baby with zero complications, never had a blood clot myself, have only had one m/c at 8 weeks and he reiterated that a higher than average antithrombin III level is not statistically significant - it's only the deficiency that needs to be dealt with. He also strongly disagreed with my RE that Lovenox is innocuous.
Ok, so I understand those reasons for stopping cold turkey but I'M SCARED! I feel like the Lovenox is a cushion from anything bad happening and what if I stop and something bad happens?! Am I being ridiculous? Do I get a second opinion from another peri even though it seems as though there's no medical necessity for me to stay on it, even at preventative doses??

TIA


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## whateverdidiwants (Jan 2, 2003)

I'd get an opinion from a Hem, not just an RE.

I actually suffered a mc when an ob lowered my Lovenox dose based on "his professional opinion", even though I'd had a successful pregnancy using a larger dose.

So, yes, my opinion is biased, but since it's a blood problem, I'd check with a Hematologist before stopping the Lovenox.


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## ericaz (Jun 10, 2003)

Quote:


Originally Posted by *whateverdidiwants* 
I'd get an opinion from a Hem, not just an RE.

I actually suffered a mc when an ob lowered my Lovenox dose based on "his professional opinion", even though I'd had a successful pregnancy using a larger dose.

So, yes, my opinion is biased, but since it's a blood problem, I'd check with a Hematologist before stopping the Lovenox.

Sorry for the confusion but my RE (reproductive endocrinologist) is who prescribed the Lovenox. The perinatologist is who told me to stop taking it - this afternoon. Isn't a perinatologist who a pregnant person goes to see for blood clotting disorders?


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## neverdoingitagain (Mar 30, 2005)

Ok, so this thread has been busy








I must have accidently unsubscribed.
Anyway, Ericaz, glad to hear your pregnancy is going well so far.
The placenta thing= most hemorrages, I thought, happen because the placenta doesn't expell properly. Never heard of a tear, even a 4th degree tear becoming life threathening. mainly because pressure can be placed on the area, as opposed to the uterus/placenta, kwim?
I didn't go to a perinatologist, I went to a maternal thrombosis specialist. As far as I can tell, a perinatologist is just a high-risk pregnancy specialist., but not specific to blood disorders. Which would explain why there are so many interventions with a peri!







: ( I just finally looked up what a perinatologist is, lightbulb moment







)
I'm not sure where you are, but you can probably do a search in the net to find the nearest specialist to you. It would be worth it ask your doctor to refer you so you can get a second opinion on the finding. BUT, if they decide that you don't need lovenox, then







: You can reduce your risk by the diet suggestions I mentioned.
Lovenox/LMWH does carry risks, like all drugs in pregnancy. If you don't need it, then its worth it not to take it. Its not innocous, though it is safer than unfractioned heparin.
You might want to do a search just on low molecular weight heparin, rather than Lovenox. You might get more results.

Lumps= I get them, not often, but every once in awhile. Haven't really figured out why, but I think its has to do with the liquid creating air pockets? Anyway, they do go away after a couple days. I also followed the instructions of someone (Orangefoot?) on here who mentioned poking around lightly to find a "dead" spot before injecting. There are less nerves on the belly, so its easy to find a spot where it doesn't hurt. SAved me a lot of pain, so who ever gave that tip, THANK YOU!!!!


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## momoftworedheads (Mar 6, 2003)

Hello all,

Ericaz-get a second opinion from a hematologist. Perinatologists go on the recommendations that are in the literature for these types of disorders, but are by no way experts. I have had three live children, one while on lovenox, I have lost my last 2 pregnancies. One at 6 weeks and one at 16 weeks. In the loss at 16 weeks, if I had been on Lovenox, my vascular Dr feels they could have saved the pregnancy.

This is just my opinion but Lovenox will not do any harm to you in pregnancy. If you do not change to heparin at 35 weeks, then you just cannot have an epidural. I do not see that as an issue if you do not use meds in labor anyway.

Best wishes and see a Hematologist. They are the blood disorder experts! When my last son was born, I had Peri, a hematologist and a vascular specialist on the team.

Best wishes


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## whateverdidiwants (Jan 2, 2003)

Quote:


Originally Posted by *ericaz* 
Sorry for the confusion but my RE (reproductive endocrinologist) is who prescribed the Lovenox. The perinatologist is who told me to stop taking it - this afternoon. Isn't a perinatologist who a pregnant person goes to see for blood clotting disorders?

What Momof2redheads said.

Peris are pregnancy specialists, hematologists are blood specialists. A Hem's opinion absolutely trumps that of a peri when it comes to Lovenox, and if there's any doubt as to your dosage or need for anticoagulants, a Hem is the one that should make the decision. A peri or an RE may know quite a bit about clotting disorders, but it's not their area of expertise. It would be like going to a dermatologist and asking them to take a listen to your heart murmur while you're there.


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## ericaz (Jun 10, 2003)

Thanks SO much, everyone. I'll keep taking it and call my OB on Monday morning to see if they can refer me to a hematologist. I definitely agree that a second opinion is in order. This is not something I take lightly and don't want to make a rash decision based on one person's opinion - kwim?

OT, but I was really bugged when the peri told me that there was no way I could be feeling movement already at 18 weeks. I told him I'd been feeling the baby since I was 11 weeks along and he basically said, sorry sister but you can't feel a baby move until you're at least 20 weeks along. HUH?! Ok, that wasn't just a kick I felt in my crotch, right? Oy. Him saying that really swayed my opinion. It made me think that this guy is ONLY about statistics and nothing else.


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## neverdoingitagain (Mar 30, 2005)

: And he would know this because he's been pregnant, right?








I felt movement at 15 weeks with my first, but I didn't feel movement with this one until almost 20 weeks. It all depends on what way the baby is facing.
Hopefully your OB will find you a good hematologist, since your peri sounds like a real winner


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## kwilki8 (May 24, 2005)

Thanks for the responses about lumps. I was really worried that I had done something wrong to cause it. I now have the most horrific bruise I have ever seen.







: I'm trying icing and looking for the dead spot, so hopefully this will get better. I've certainly got enough practice ahead of me to get really good at it.


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## Girlprof (Jun 11, 2007)

Kelly, yes, I forgot about the bruising. But when I had the lumps, the bruising was crazy! Still, icing plus dead spots should really help.

And what BS about not being able to feel the baby until 20 weeks. Ridiculous.

Sarah


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## whateverdidiwants (Jan 2, 2003)

Anyone currently using 40mg Lovenox injections? PM me if so.


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## neverdoingitagain (Mar 30, 2005)

I just got back from my specialists appt. I'm cleared to stay on lmwh, since I'm not getting an epidural. He told me that there was pretty little to no risk with a normal vaginal delivery on lmwh otherwise. I don't even need to switch to coumadin, which is much more unstable!








EricaZ, I mentioned to him your situation. He said that raised levels with antithromibin III just means that you clot LESS than usual, since this particular protien manages anti-clotting. A deficiency would mean you clot too well, like Factor V Leiden. So lovenox/lmwh is probably not a good idea unless they think you are making too much and its because the protien is screwed up. He likened it to having millions of dollars in funny money, you're still poor at the end of the day. Does this make sense to you? Mind you, he did state that without looking at your labs, he could only give a limited opinion.


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## ericaz (Jun 10, 2003)

Quote:


Originally Posted by *neverdoingitagain* 
I just got back from my specialists appt. I'm cleared to stay on lmwh, since I'm not getting an epidural. He told me that there was pretty little to no risk with a normal vaginal delivery on lmwh otherwise. I don't even need to switch to coumadin, which is much more unstable!








EricaZ, I mentioned to him your situation. He said that raised levels with antithromibin III just means that you clot LESS than usual, since this particular protien manages anti-clotting. A deficiency would mean you clot too well, like Factor V Leiden. So lovenox/lmwh is probably not a good idea unless they think you are making too much and its because the protien is screwed up. He likened it to having millions of dollars in funny money, you're still poor at the end of the day. Does this make sense to you? Mind you, he did state that without looking at your labs, he could only give a limited opinion.

Yay, that's great you can stay on the LMWH! Good news. Sounds like your doc is a great advocate.
Thanks for running my case by him. I'm a little confused by the funny money comparison but I'm assuming he's thinking that I was wrongly dx'd??
Let me know if I'm wrong.








So, my OB told the nurse who told me that the peri is the smartest guy he knows (







) so he trusts his judgment with whatever he tells me. I just think the peri goes solely by studies/statistics, hence the not feeling movement until 20w comment. If that's the statistical average than _clearly_ no one can feel movement earlier. lol.
In any case, I have an appt with a hematologist set up for Wednesday. I'm still taking the Lovenox but I'm guessing they're going to tell me what Tannis' doc said - it's the deficiency that's the real prob not a higher than normal finding.
I'm still nervous as hell but if the hemo says there's no reason to be on it than I guess that'll make me feel a little more secure. Actually, I won't feel secure until my healthy little boy (just found out it's a HE!) is out and nursing sweetly.








Until then I'll just assume those swift kicks right above my pubes that I can ACTUALLY SEE through my skin at 19 weeks are just gas since there's no way I could feel movement this early. LOL.


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## neverdoingitagain (Mar 30, 2005)

I think what he meant by the funny money analogy is that you might have a protien that looks and acts like antithrombin III, but isn't. At least that might be why they put you on LMWH. Otherwise, yeah, you shouldn't be on LMWH.
Thats so cool that your actually seeing movement already!







I'm so happy to hear that you have an appointment on Wednesday. Hopefully they will be able to give you all the answers you need to feel a little more secure.


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## orangefoot (Oct 8, 2004)

An appointment with a hemo is exactly what you need and Wednesday isn't too long to wait!

Over here my equivalent of a peri consults with the homos to make plans for people like me - and he is a pretty smart guy who has headed one of the most respected Feto-Maternal medicine units in the UK for 30 years. No-one is too smart to ask an expert for an opinion







: (I just found that smilie today!)

Its great that you are feeling movement; it's really reasurring. I felt Frida first move at about 13 weeks and she was very busy poking bits of her at my belly skin by 19 weeks, just like your little one.


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## ghuaghua (Jul 19, 2005)

For those of you who have been on both lovenox and heparin which did you prefer and why?

I was on lovenox from 28-36 weeks during this pregnancy and then my hematologist switched me to heparin until I go into labor. I definitely prefer lovenox over heparin, mainly because we get ours free and have to pay for heparin...(I know heparin is super cheap in comparison...but still) I thought the heparin was better at first because it didn't burn...until they upped my dose and now its actually worse than lovenox at times. I also seem to think lovenox works better









Anyway, just wondered what experiences everyone else has.


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## neverdoingitagain (Mar 30, 2005)

Definately LMWH. Heparin made me bruise like crazy, I had a black and blue belly for weeks afterwards. Plus I had to inject into that black and blue belly 2x per day. LMWH is easier to deal with and seems a lot safer. You have to fiddle with dosage for alittle while on heparin. With LMWH you can stay on up to delivery and after...which is what I'm doing







As of Tuesday, I'm post-partum


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## ericaz (Jun 10, 2003)

neverdoingitagain - Good luck, mama!

Just to report in....I saw the hematologist yesterday. She was lovely - a few years older than me with pictures of her two little girls (and their framed art work) all over her office. Super nice and laid back - and thorough. She was shocked I had been prescribed the lovenox, said there's no indication and it is NOT an innocuous drug like my prescribing doc had said. She did say that it was good I was on it when I broke my ankle at 12 weeks (I was couchbound and couldn't walk at all for 3 weeks) since I was immobile but that it's more of a potential danger than help at this point.

So, I'm off. It's weird. I have mixed feelings. I just keep reminding myself that I was misdiagnosed and it never did anything to help sustain the pregnancy.

On the plus side - no more ouchy shots and ugly bruising!


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## orangefoot (Oct 8, 2004)

I hope everyone is well!


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## ChesapeakeBorn (Jun 23, 2007)

Hi everyone







. Not sure if I belong here... maybe you can help me figure that out?

After 2 consecutive miscarriages (and a pregnancy with DD complicated by IUGR and preterm labor due to placental abnormalities), I met with an RE and had over 20-something tests done. Nearly everything was normal, except:
*1)* My antithrombin III was high (146 whereas the normal range is 80-120). This would actually slow clotting or rather enhance bleeding, as far as I understand. Does this really mean anything?
*2)* I have a single mutation on the methyltetrahydrofolate reductase gene (MTHFR). However, my homocysteine levels are normal. I was told that this is more of a problem with 2 mutations. Is this true?
*3)* My protein S activity was on the low side (69, but the normal range is 60-140). Could this be affecting anything?
*4)* (although this doesn't really belong here) I have a slightly elevated LH:FSH. (Strange because I am underweight?)

Sigh. I am just really confused. As always, I'm left with more questions than answers. Sorry if I have posted this in the wrong place!


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## orangefoot (Oct 8, 2004)

I'm so sorry to hear of your losses and that you have yet to find any conclusive answers.

I can only comment on the Protein S result, the other things are out of my diret experience but from what I hear hetero for MTHFR is not a risk factor especially if your homocystine is normal - others will be of more help there though I'm sure.

Protein S levels are unreliable if blood is taken less than 6 weeks after a birth or loss as levels are naturally lower duing pregnancy. Generally speaking levels in the low range of normal shouldn't be problematic but that is not certain.

Sometimes a combination of things can be happening which lead to very particular set of circumstances for each of us individually so you need to speak to someone who can take an overview of all your issues and make a plan from there.


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## taradt (Jun 10, 2003)

How "normal" was your homocysteine? and was it taken while fasting?


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## ChesapeakeBorn (Jun 23, 2007)

Thank you for the information, *orangefoot*!

*taradt*, my homocysteine level was 8.3. I believe the normal range is 3.7-13.9. This test was done while I was still "pregnant" with a blighted ovum. I was not fasting.

The Protein S test was also done at that time. Perhaps not accurate?


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## taradt (Jun 10, 2003)

I had my tests done when I was not pregnant, I don't know if that makes a difference.
The reason I was asking is I was just at the high stage of normal but it seems that was enough to cause problems for me.

What could cause placental issues? Is there a chance everything is related in a way they aren't seeing yet?

I know how frustrating it is to have no awnsers


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## orangefoot (Oct 8, 2004)

Chesapeake

Can you get a referral to a hematologist? If a hemo re-tests you they will tell you all the conditions which will produce the most accurate results - like fasting or being x amount of time post-partum.

Anyone can order bloods to be taken and anyone can take them then the lab just does the job but hemo has a much better overview. Hemos can also interpret the results and explain to you exactly what they think is going on.

Don't be afraid of asking for another opinion or more advice.


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## Stella_luna (Jan 26, 2006)

Hi Chesapeake,

I think you need to see a rheumatologist. I think this kind of thing is more their domain. That's who my OB sent me to after I developed severe early-onset pre-eclampsia, which led to HELLP and giving birth to an infant with severe IUGR (after 4 weeks of hospital bedrest).

The rheumatologist sent my bloodwork to the hospital lab for a complete workup of a whole bunch of things along the lines of what you mentioned. I was diagnosed with antiphospholipid antibody syndrome, which is an autoimmune clotting disorder.

I was told if I ever have another pregnancy, I will need to be followed by a high-risk OB *and* a rheumatologist.


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## Girlprof (Jun 11, 2007)

Chesapeake, I posted to you over at pregnancy after loss, but I had another thought now. If you're interested in getting in touch with a rhuematologist, the person I work with does research on clotting disorders that are not yet officially discovered yet. Normal labs won't do the tests he runs, but if you're interested, he has said that I could tell people how to get in touch with him and get tested. PM me if you want more info.

Sarah


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## ChesapeakeBorn (Jun 23, 2007)

Thank you all so much for the information! MDC is such a wonderful community and resource.

I think right now we are going to try to correct the hormonal imbalance, and add extra folic acid to combat any effects the MTHFR mutation might have. I tested negative for a variety of autoimmune issues, including APA. Of course, the chance is always there that I have something that hasn't been officially discovered. I may very well be contacting you, Sarah. Thank you so much for your help!


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## orangefoot (Oct 8, 2004)

Sarah - How are you doing? I've been thinking about you and wondering if you have your babe on the outside yet or not







Are you close now?


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## aswbarry (Jan 31, 2005)

Hi Ladies!
I am pregnant again and on lovenox, folguard, and extra monitoring due to the blood clotting d/o and history of loss. I was induced with my last pregnancy due to baby's heart decels and some placental issues. I am curious to know if anyone has been able to go into spontaneous labor while on blood thinner. I am really hoping that is possible but I am following the same OB and I am wondering if she'll find some reason to induce again. I guess with so much monitoring they are bound to find something and I am not comfortable with less monitoring. Anyway, let me know how it went for all of you on this protocol.

Thanks!


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## neverdoingitagain (Mar 30, 2005)

nak

3 m/cs 2 children. 1st child= dvt, induced labor. switched to uf heparin at 36 weeks
2nd child= started lmwh heparin @10 weeks, never switched. went into spontaneous labor @ 37 weeks. no problems, just didn't take my shot when that morning due to contrx. no hemorrages, actually, I think my d/o might have prevented some complications, as I had retained some placenta.
I have factor v leiden, had natural child birth with my second.


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## Girlprof (Jun 11, 2007)

Quote:


Originally Posted by *orangefoot* 
Sarah - How are you doing? I've been thinking about you and wondering if you have your babe on the outside yet or not







Are you close now?

You're sweet to think of me. I'm 39 weeks. Doing mostly fine. I feel great. My blood pressure was up at the MW appt yesterday so I had to go for extra BP monitoring. They want me on partial bedrest. This is all unrelated to the clotting stuff. I'm trying to figure out how to get my blood pressure down. Otherwise, things are fine. They aren't planning induction any time soon (at least not for the clotting disorder - we'll see how the BP situation develops) and I got to stay on the Lovenox instead of switching to heparin.

Thanks for thinking of me!

Sarah


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## neverdoingitagain (Mar 30, 2005)

Quote:


Originally Posted by *Girlprof* 
You're sweet to think of me. I'm 39 weeks. Doing mostly fine. I feel great. My blood pressure was up at the MW appt yesterday so I had to go for extra BP monitoring. They want me on partial bedrest. This is all unrelated to the clotting stuff. I'm trying to figure out how to get my blood pressure down. Otherwise, things are fine. They aren't planning induction any time soon (at least not for the clotting disorder - we'll see how the BP situation develops) and I got to stay on the Lovenox instead of switching to heparin.

Thanks for thinking of me!

Sarah

Happy labor vibes







: So close to the good stuff














Glad to hear that you got to stay on LMWH. BP usually goes up during the last couple weeks, so hopefully thats all that is.


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## orangefoot (Oct 8, 2004)

Some from me too







: BP can do all sorts of things at this stage as Never says so take it easy and do lots of positive visualisation while you are resting


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## whateverdidiwants (Jan 2, 2003)

Bumping.

I keep thinking about Shannon0218, and how vulnerable these clotting disorders we have make us.


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## orangefoot (Oct 8, 2004)

NO! I saw your candle and went to TAO to search.

I can't believe it. How terrible for her family, animal as well as human.


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## Girlprof (Jun 11, 2007)

Good news from us. Geneva Rose is here!!! Here are some pics:

http://picasaweb.google.com/kevin.wi...ey=aFT-8LsXx1w

The blood pressure thing did turn into a bigger issue. It wouldn't come down and I had to be induced - because of BP not the clotting stuff as I had feared all along! Ironic the twists life throws you.

We had a great birth anyway. No intervention aside from the pitocin and a VERY fast labor. Four hours of piddly contractions, then 1.5 hours of whopper contractions and I was ready to push. Three or four pushes and she was out. My son got to be there, which was super. She weighed 9 pounds 10 ounces, 21 inches long. She's a very enthusiastic nurser. We're home now being taken care of by my parents and doing well.

Sarah


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## neverdoingitagain (Mar 30, 2005)

Quote:


Originally Posted by *Girlprof* 
Good news from us. Geneva Rose is here!!! Here are some pics:

http://picasaweb.google.com/kevin.wi...ey=aFT-8LsXx1w

The blood pressure thing did turn into a bigger issue. It wouldn't come down and I had to be induced - because of BP not the clotting stuff as I had feared all along! Ironic the twists life throws you.

We had a great birth anyway. No intervention aside from the pitocin and a VERY fast labor. Four hours of piddly contractions, then 1.5 hours of whopper contractions and I was ready to push. Three or four pushes and she was out. My son got to be there, which was super. She weighed 9 pounds 10 ounces, 21 inches long. She's a very enthusiastic nurser. We're home now being taken care of by my parents and doing well.

Sarah









we are/were in the same ddc! (I ended up birthing early)







Congratulations! What a beautiful little girl, nice and big too!
Glad to hear that you were able to have a fairly intervention-free birth despite the induction.








Hope you and Geneva(pretty name, btw) are getting lots of rest and healing well. Happy babymoon!


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## Charmie981 (May 30, 2002)

GirlProf, I'm so glad you had a great birth! And can I just say that you are SO BEAUTIFUL and look nothing like you'd just had a baby (maybe that's how people look after short labors, though?). Congrats on your healthy little one!!

So...I'm pregnant again...for the third time in 12 months. I've been doing my lovenox injections nightly, though I'm still not convinced that I need them, which I guess is a different story.

Last night's injection left a lump under my skin that is really tender and happens to be right on under the waistline of my pants. Any idea how I managed that one? Better yet, any idea how I can avoid doing it again!!?

And how are you ladies disposing of your needles? My pharmacist didn't give me any instructions except what came with the needles and it says to put it in a biohazard container (duh!). I don't want to pay biohazard disposal fees for these stupid needles!! I'm going to ask Dr. R next time I see him but I'm just wondering what you ladies do. I feel like I've gotten ZERO instruction on how to administer these injections/operate the needles/dispose of the needles, etc.

Okay, sorry this turned into a mini-rant. I'm having a very low patience evening!


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## orangefoot (Oct 8, 2004)

Congratulations! I'm so glad your birth went well and ...what beautiful pictures, she's so gorgeous


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## ChesapeakeBorn (Jun 23, 2007)

Congratulations, Sarah!!! She is beautiful. I'm so glad to hear you are doing well.


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## Xenarthra (Jul 29, 2007)

Hi ladies!
I was diagnosed with ProteinS Deficiency after a fetal loss at 20 weeks and two early miscarriages. I used Lovenox in my last pregnancy and had a wonderful out of hospital waterbirth! I did switch to Heparin in the last month and had severe (and painful) bruising with that to the point of tears.

I promised myself that I would try to figure out a different way with future pregnancies, but then suprise! I got pregnant again before I even knew I was fertile...so here I am again.

I have consulted with a naturopath which got my hopes up very high that i could do without, but then she just called this week and said she didn't think she could help me out other than to help reduce the bruising with Heparin.

Our finances can't really allow me to do the Lovenox this time around ($240/month) so I am dreading going on the Heparin which is apparently my only option right now. I keep telling myself that it is worth it, but I have been very emotional about it this week and I am extremely happy to see that I will have support from understanding women going through the same thing!

So anyways, Hi! And I am glad we are all in this together


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## hmseyer21 (Jan 31, 2008)

Hi ladies,
I've been reading over this massive thread for a couple of days and just wanted to introduce myself. My name is Heather and this is my 3rd pregnancy. I had one miscarriage and my first son was born with heart and spine defects and a host of other medical issues. He is now 2 and is doing good. This pregnancy I found out I am compound hetero. for MTHFR mutation. I've been on heparin since 8 weeks and folic acid supplements. I've done a lot of research on bc disorders and want to learn more. So far everything is going great with this pregnancy and although I am a little nervous, I am optimistic about it. I want to have as natural of a delivery as possible and that is why I am here. Look forward to chatting with you all!


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## mamade2 (May 8, 2005)

Hello all! I'm just lurking for the moment, pending further info. I got the results of my 3rd tri bloodwork (I'm 34w pg) and all the coagulation values came back out of whack. I have never had any problems before, so they really aren't sure what the problem is-- I'm seeing a hematologist on Wednesday, but I'm a bit nervous because my other 2 babies came at 38 and 37 weeks, so I really want to find out what's going on soon!

My platelet count was okay, but apparently the other results showed a large increase in clotting time, so unlike many pg women, it looks like I'm not clotting enough? I have been trying to research on Google (yeah, I know) but without more info it's hard to know what to look for. I have read about DIC and other issues but I guess I'll just have to wait to hear more from the hematologist.

So, I may be joining you all soon!


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## Charmie981 (May 30, 2002)

Xenarthra, if you go to the Lovenox website, you can apply for a grant program that will give you the lovenox for free if you qualify financially for their aid but not for any other aid (like medicaid). I know the cost is a little scary. I seem to remember it was well more than $240/month, though...more like $900 when I was not insured for it. I thought for sure I'd never be able to have a baby again







.

I'm glad to hear about your OOH birth while you were on heparin and would like to know more. Right now DH and I are in a holding pattern, putting off any birth plans until 12 weeks, but we can't help but talk about it some. The doc (of course) wants me to have a hospital birth but I just can't see doing that, being a HOMEBIRTH MIDWIFE and all. We're thinking about deciding to go to the hospital when it becomes medically necessary, and if that point never comes, well, then it never comes, KIWM? But it's really easy to say that now and a lot harder to actually make it through an entire pregnancy without an OB finding a reason to meddle with my birth plans!


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## magicstorm (Feb 2, 2008)

HI. I originally posted this somewhere else but someone was kind enough to lead me here so I thought this might be more appropriate to post here....(sorry if im breaking rules..haha..dont know..first time doing this.)

This is probably a real stupid question. I havent asked my doctor cuz he hasnt scheduled to meet me cuz im so early and i know he would be the best to ask but just trying to get other peoples thoughts.......

Just found out im about 4 weeks pregnant. Had a trip scheduled for August 8-18....3 hour plane ride ive been on before. At the time i leave ill be at the end of my 31st week and when i come home, the beginning of my 33rd week....

I have had one child already who is 12. Pregnancy was fine but AFTER i had her i had a blood clot in my head. I was back in the hospital about a week after she was born. I believe the dr said when i get pregnant i will have to give myself heparin shots in the stomach so this does not happen again. (i will have to talk to him). The doctor did not say i had a clotting disorder or hemmorage but said it mustve been due to pregnancy...i was only 22 then and guess i didnt ask as much questions as i should have (I will this time) but he DID NOT say i had a clotting disorder....anyway,

Just wondering, if im going to be able to fly on the plane if all else is well, or if i should reschedule or if i wont be able to fly at all during my entire pregnancy.!? ...i know the whole deal theys ay about blood clots on planes....never had a problem when not pregnant but also was never on a plane when pregnant..so....

Any thoughts?


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## mamade2 (May 8, 2005)

I'm no expert here, but three hours doesn't sound like that long to me (I did two 8-hour flights at 24 and 28 weeks...) If you can get up and move around, and wear compression hose, it doesn't sound to bad to me. Of course it is quite early in your pregnancy, so maybe depending on how things evolve there might be a different answer.

And I really should just shut up, because as I said, I'm no expert, but I'm online, so what the hey! Maybe someone else will have something more relevant to say...


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## orangefoot (Oct 8, 2004)

Magic storm - For a three hour flight you should keep very well hydrated and move around as much as you can -the two can go hand in hand if you've had enough to drink! Some say that a baby aspirin may also help but I'm never convinced by that as aspirin works on the arterial flow not venous but









Once you get to your destination you should keep well hydrated and be watchful for any signs of pain in your legs or chest.

Charmie - I had panned a homebirth on LMWH with 'approval' from my high risk OBs. They werent' concerned about the labour some much as potential PPH depending on how long it had been since my last shot. In any case I agreed that I would have the syntometrine shot to detach the placenta and if bleeding seemed heavy or it had been less than 8 hours then ergometrine too. If things seemed bad or it was less than 4 hours since the shot I would transfer to hospital for a 3 hour syntocinon (pitocin) infusion. My midwives had the synto and ergot in their list of things to bring if they attended me and we were all set.

As it happened I ended up transferring after almost 36 hours SROM and brow presentation which despite my best efforts I couldn't do anything about and my contractions weren't regular either. Being my fourth child I felt that something wasn't right and after much soul searching decided to go in. To avoid a section I had an augmented labour with no epi but due to the long labour specified as a nother risk factor for PPH as well as being multipara (and hospital midwive anxiety at seeing bleeding probably) I had all three of the above interventions and we left AMA after 5 hours. Not the best ending but I didn't bleed to death as many not in the know had predicted and I didn't tear despite brow and hand.

I read a lot of reviews which suggested that very few people have PPH with LMWH but I did realise that those findings may be skewed due to most people switching to heparin then stopping and being induced. Research into the kind of labour I was hoping for and you want isn't being done I don't think.


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## PerkyKP (Nov 15, 2004)

I'm on daily Lovenox and will be flying to Mexico in March. I'd like to bring my shots with my carry-on, and maybe even a backup supply in my checked luggage just in case. Will security have any issues with me having needles on the flight?

thanks!


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## whateverdidiwants (Jan 2, 2003)

I've never had a problem with it, and I've flown both domestically and internationally with Lovenox syringes. Just keep them sealed in their packets and you should be fine. If you're really worried, get your doc to write a letter to take with you.


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## Ilaria (Jan 14, 2002)

I wanted to subscribe to this thread...I might have APS, still being tested...
I have had 4 MCs and 2 kids (normal pregnancies, on heparin but stopped at 20 wks). This is my third pregnancy.


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## Xenarthra (Jul 29, 2007)

Hi again!
Charmie, thank you soo much for the grant info on Lovenox. I do have insurance, but I would still be paying $390/month (I called pharmacist today to confirm price







) and we are still in debt from my first pregnancy lovenox! So maybe Lovenox will pull through for me!

About my OOH birth, I did have several docs working with me the first trimester to get everything squared away and then I managed to weasel their blessing for a birth center waterbirth with my amazing midwife. They just counseled her on what to look for/be prepared for, etc. I didn't have to be induced and it was an easy birth, but I did find out after that my midwife was somewhat nervous, but this second time around she is totally chill about it.

BTW we are due at the same time, so good luck to you, I am sure you will make the best decisions for yourself and your munchkin!

To the flyers out there: I would definitely take a doc's note, just to be on the safe side, but I have never had probs with it!

One question: probably an ignorant question, but does anyone know if I could use old-school Heparin and Lovenox somewhat interchangeably? I was thinking to save on costs (if grant doesn't come through) that maybe I could do Heparin one month and Lovenox for a few weeks then back again??


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## Charmie981 (May 30, 2002)

Regaring OOH birth: LA is so far in the dark ages of birth that I'm not going to find an OB ANYWHERE to say it's okay to have a homebirth, much less to advise on what to do in case of PPH, which would certainly be my main concern. I have so many questions for my doctor about his protocol re: the last four weeks or so that I want to SCREAM. And he was out of the office sick today, so I didn't get to ask ANY of the questions. I've pretty much decided that I want to switch to heparin at 37 weeks and then have my baby UC at home. I know how to estimate blood loss and I can teach DH. Same with managing a PPH...I can teach him my protocol. My only concern is that my protocol doesn't include pit or cytotec because I don't have a doc to write those things for me, and I'd really be more comfortable having them, what with the blood thinners and all. We're only about 5 mins from the hospital, if push came to shove...

I don't know. I like the plan of "when it becomes medically necessary." Of course, that could be before labor even starts, as there are no guarantees in pregnancy, EVER. But a UC has always been something we wanted and now I'm feeling more and more okay with it. I guess we'll see...


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## Argonaut (Apr 27, 2005)

Quote:


Originally Posted by *Xenarthra* 
Hi again!
One question: probably an ignorant question, but does anyone know if I could use old-school Heparin and Lovenox somewhat interchangeably? I was thinking to save on costs (if grant doesn't come through) that maybe I could do Heparin one month and Lovenox for a few weeks then back again??

I don't see why not. I switched back and forth a couple times during my last pregnancy.


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## orangefoot (Oct 8, 2004)

Charmie

If you read about the half life and anti-coagulant effect of UFH there is a pretty short window where excessive bleeding might be a risk. LMWH hits maximum effectiveness around 4 hours and tails off dramatically from there. The other thing to rememebr is that heparins don't thin your blood or _stop_ you clotting: they stop you overclotting.

I've got some links that mght be useful which I'll post once I've got the dinner in the oven and ds1's birthday cake eaten!


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## Girlprof (Jun 11, 2007)

I just wanted to say thank you to everyone for all the good wishes and compliments. Geneva is three weeks old now and doing great.

For those of you hoping for an unmedicated (or less medicated) birth while on anticoagulants, I would urge you to push for what you want and search for care providers who will cooperate. If any of you are in CT, I can help you out. After delivery, my OB asked my midwife "So, what do you think Sarah wants to do about the Lovenox post partum?" As you can tell, I have them well trained, LOL.

I flew several times while on Lovenox and it was always fine. I did carry the syringes on and I had a copy of the prescription with me.

Enjoy that birthday cake Orangefoot!

Sarah


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## PerkyKP (Nov 15, 2004)

Thanks for the feedback re: flights and bringing Lovenox! I will call my peri's office and see if they can write something for me.


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## Xenarthra (Jul 29, 2007)

So I am starting Heparin tomorrow because I just can't justify $400/month out of our family's finances right now just for my own comfort







Sooo I need advice on how to make it bearable...last time I used arnica gel at the injection site, extra strength arnica pellets and iced my legs every night. Am I missing anything vital that will make my life more pleasant? Any great ways to give myself the shot that might cut down on the bruising?

Thanks for any advice, and cross your fingers for me that I might get the Lovenox grant!


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## riverside knitter (Jun 26, 2007)

Quote:


Originally Posted by *Xenarthra* 
So I am starting Heparin tomorrow because I just can't justify $400/month out of our family's finances right now just for my own comfort







Sooo I need advice on how to make it bearable...last time I used arnica gel at the injection site, extra strength arnica pellets and iced my legs every night. Am I missing anything vital that will make my life more pleasant? Any great ways to give myself the shot that might cut down on the bruising?

Thanks for any advice, and cross your fingers for me that I might get the Lovenox grant!

Get the smallest needles you can find, use fleshy parts with few, if any, veins, and position yourself so that you have maximum "pinchability". I use 31 guage needles to inject heparin and typically inject fairly slowly into my lower abdomen and the tops of my hips. Also, watch how you insert the needle - make sure the sharp point goes in first. I know this sounds obvious, but as soon as I started really paying attention to how the needle was going in, I had fewer problems with pain, bruising or knots under my skin. With the really tiny needles it can be tricky to see this.

As I get more pregnant, the optimal areas to inject are getting fewer and farther between, but generally, I've had few problems with pain or significant bruising. There are some spots that are worse than others, but you'll find your "good" spots. Good luck!


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## Argonaut (Apr 27, 2005)

Yes, I agree with the last poster. Also, try just gently poking yourself a few times with the needle until you find a "dead" spot.


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## Xenarthra (Jul 29, 2007)

Thank you so much, I will try some of those suggestions...usually i just 'go for it' and practically just hold my breath and poke...sounds like i just need to pay better attention and remember which areas are best!


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## Xenarthra (Jul 29, 2007)

Anyone been affected by this? Is anyone considering switching off of it for awhile until they figure out what/how it happened?


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## riverside knitter (Jun 26, 2007)

According to the FDA, these are the affected dosages & lots:

Heparin Sodium Injection 1000 units/mL 1OmLVial
Lot #'s 107054 and 117085
Heparin Sodium Injection 1000 units/mL 30mL Vial
Lot #'s 047056,097081, 107024, 107064, 107066, 107074, and 107111

I'm on 5000 units/mL in 1mL vials, which I think is pretty standard for those of us on prophylaxis treatment, and is not part of the recall. The recalled vials are pretty big, so I'm guessing they are primarily used in hospital or clinic settings.


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## orangefoot (Oct 8, 2004)

Xenartha - how were your last few shots? Is it getting better?

Quote:


Originally Posted by *Argonaut* 
Yes, I agree with the last poster. Also, try just gently poking yourself a few times with the needle until you find a "dead" spot.


Strange but true! I poke around a bit then hold the needle on a good pace and push it in slowly then push the plunger. Some places that feel good at first tentative poke are tough to get the needle into so if you feel too much resistance try somewhere else. If you have any stretch marks they can be good places too.

Hold very still too and do try BREATHING while you inject - holding my breath increases anxiety for me


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## Xenarthra (Jul 29, 2007)

I never actually started the Heparin because I was still hoping against hope that I would get approved for the grant even though I was originally rejected....and today IT DID!!!!! So once all the paperwork is finalized I should be starting Lovenox on Friday!

Thanks for all of the help ladies, and I will let you know how the injections are going and I am sure I will have more questions and updates...

Hey Charmie, how are you doing these days?


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## neverdoingitagain (Mar 30, 2005)

Quote:


Originally Posted by *Xenarthra* 
I never actually started the Heparin because I was still hoping against hope that I would get approved for the grant even though I was originally rejected....and today IT DID!!!!! So once all the paperwork is finalized I should be starting Lovenox on Friday!

Thanks for all of the help ladies, and I will let you know how the injections are going and I am sure I will have more questions and updates...

Hey Charmie, how are you doing these days?






























:
Thats fantastic to hear!


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## Charmie981 (May 30, 2002)

YAY! I'm so glad you got the grant for the Lovenox. As much as I hate it, it sounds like the heparin is WAY worse.

Thanks for asking about me. I'm hanging in. They have me on progesterone, which is making me seriously nauseated all the time, to the point of anorexia. I'm really ready to be done with the progesterone and into the second trimester. I keep trying to remind myself that this is all for a baby, but right now it's hard to think past what I'm going to eat for my next meal.

And I'm MIA b/c for some reason the computer causes more nausea.


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## Charmie981 (May 30, 2002)

GRRR! I was really hoping this wouldn't happen, but the doc I loved for my TTC and miscarriages has reared his ugly OB management head and I'm not going to be able to stay with him.

I clearly stated before my 10 week appointment yesterday that I didn't want a sonogram, I wanted to listen with the doppler. Well, he shows up in my exam room with the sonographer by his side and says "it's too early" for him to hear with the doppler and I'm going to have to have a sonogram "since there's so much riding on this pregnancy." Then, to top it all off, it was a transabdominal sonogram, which to me means he probably could have heard baby JUST FINE via doppler.

Then he told me that he'll want me to have WEEKLY BPPs and fetal blood flow evaluation sonograms starting at TWENTY SIX weeks, that I'll need to see the peri. at about 20 weeks and then he went on to schedule ANOTHER sonogram for my next visit, at 14 weeks.

Okay, now I know that this pregnancy is not considered a "normal" pregnancy because I've been diagnosed with a gene mutation that *can* (along with other indicators I've not been tested for!) be associated with a clotting disorder. So I'm on blood thinners to treat the *potential* clotting disorder, which means that there's no need to study the fetal blood flow starting at the point of viability (and 26 weeks is really debatable as viable!), because the blood thinners should treat it. I understand that there will be concerns in this pregnancy that I don't have for my "normal, low-risk" clients, but I will NOT be sucked into having unnecessary level two sonograms WEEKLY.

I have to make some phone calls to doctors whose opinions I respect today and see who I can switch to. Even if the consensus is that I do need a peri and *some* extra monitoring through sonograms, I DO NOT want to continue to see a doctor who manipulated me into something that I had clearly stated beforehand that I didn't want (the 10 week sonogram yesterday).

GRRRR!


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## kwilki8 (May 24, 2005)

Charlotte, that's really awful that he would so disregard your expressed wishes. I'm sorry that you're having to leave a doc you had previously liked. And his proposed schedule seems really over the top. My OB and peri agreed that a monthly bpp after 24 weeks would be sufficient. I have had 2 fetal blood flow studies, but that's mostly because the babe has a single umbilical artery; otherwise they would have just done the first one. Anyway, I'm sorry you're having to deal with that, although at least you've got time to find a provider who will be a better fit for you.


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## Ilaria (Jan 14, 2002)

Is it possible to have a homebirth with APS?

I was planning on a homebirth with this baby, I am 21 weeks, have 2 children and have had 4 miscarriages. I have been undergoing a zillion tests to figure out the cause of some strange symptoms I have (peripheral neuropathy, headaches...). On my first consult with the rheumatologist, he looked at my bloodwork and seemed to think it was not lupus or MS, but was leaning towards APS.
I did the ACA panel and these were the results:

Anti cardiolipin IgG 20.58 (low to meduim positive)
Anti cardiolipin IgM 21.53 (low to meduim positive)

He told me to wait 5 weeks or so and do it again. I got the results today:

Anti cardiolipin IgG 80.60 (high positive)
Anti cardiolipin IgM 8.82 (negative)

I have not seen him yet, but these (along with 4 MCs) seem to indicate APS. So I wondering if I should forget about a homebirth...

(I am on hep, aspirin, prednisone, monthly IVIG)


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## Xenarthra (Jul 29, 2007)

Quote:


Originally Posted by *Charmie981* 
I clearly stated before my 10 week appointment yesterday that I didn't want a sonogram, I wanted to listen with the doppler. Well, he shows up in my exam room with the sonographer by his side and says "it's too early" for him to hear with the doppler and I'm going to have to have a sonogram "since there's so much riding on this pregnancy." ....

Then he told me that he'll want me to have WEEKLY BPPs !

Aww, girly, sorry he was such a turd. GRRR is right! Are you at least almost off your progesterone?

With my first pregnancy my peri said that I needed weekly sonos, too...she wasn't super happy when I told her I couldn't and she responded with 'well, it greatly increases good outcomes in cases like this'....like it was going to harm my unborn child to NOT receive huge amounts of sonogrophy. Grrrrr

I am hoping you find an awesome OB and peri...there are still a few cool ones out there


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## Charmie981 (May 30, 2002)

Yes, I am almost off my progesterone!







Only two more weeks.

I saw a hematologist on Friday who told me that I'm actually HOMOzygous for the MTHFR mutation (different than what the OB's nurse told me). He said that it's REALLY unclear in the hematology community what should be/can be done about the MTHFR mutation, and also told me that elevated levels of homocystine (which can result if my mutated MTHFR gene isn't working right) can cause a clot on the arterial side of the circulatory system, but Lovenox works on the venous side of the circulatory system. Hmmm....

He seemed pretty sure that if my homocystine levels are normal (he checked them, so we'll see) the Lovenox is not going to provide any protection to the baby and could cause more harm than good. Now, he's not an OB, though, so of course he is probably more willing to suggest a treatment plan less than "do EVERYTHING we can."

After talking with him (for about 30 mintues...it was so refreshing to have all of my questions heard and answered!!), I feel pretty comfortable not being on the Lovenox and not being monitored extra. I don't know if I'll find a doctor who is okay with that, but I would think with a hematologist's opinion to back it up, they would have less liability concerns...right?

I'm going to start the search for a doc. who is okay with a laid back approach to this tomorrow...in the meantime, my current OBs office has already scheduled me a peri appointment...at 17 weeks! *sigh*


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## sarahtar (Mar 19, 2004)

Quote:


Originally Posted by *Charmie981* 
I feel pretty comfortable not being on the Lovenox and not being monitored extra. I don't know if I'll find a doctor who is okay with that, but I would think with a hematologist's opinion to back it up, they would have less liability concerns...right?

The perinatologist I saw for my diagnosis (MTHFR, but homocystine levels are fine) actually suggested this course of action, since the homocystine levels were fine. So it is at least possible. First try the doctors that your area midwives consult with. (The perinatologist is one of my mw's consulting physicians.)


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## Mosaic (Jun 20, 2005)

Quote:


Originally Posted by *Charmie981* 
... and also told me that elevated levels of homocystine (which can result if my mutated MTHFR gene isn't working right) can cause a clot on the arterial side of the circulatory system, but Lovenox works on the venous side of the circulatory system.
...<snip>...

I don't know if I'll find a doctor who is okay with that, but I would think with a hematologist's opinion to back it up, they would have less liability concerns...right?

I had a stroke when I was 20, and after TONS of tests the cause was attributed to the hormones from BCP. When I became pregnant, my midwives required me to visit with a maternal-fetal specialist to assess the cause of the clot and potential of using Lovenox. Like your doc, my doctor confirmed that with a well-documented history of an arterial blood clot, lovenox/heparin would be of no use to me because they work on venal clots.

Instead, I took a baby aspirin every day through 6 weeks following birth (and will need to do the same for future pregnancies). The other good news is that my midwives at the FSBC had no problem taking me on as their patient, even given my clotting risk! So if my midwives were willing to take me on, I'm sure you could find an OB to do the same.


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## Charmie981 (May 30, 2002)

I wish I lived in an area where I had hopes of finding a doctor okay with letting me choose my course of treatment. Unfortunately, I don't. I live in LA, and even so, in an area of LA where there are no CNMs and no physicians who consult with midwives (trust me, I'm a midwife, so I know!). As soon as my kids are well I'm going to call all 4 (out of probably 100+) doctors I've heard good things about, and we'll see...


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## Belia (Dec 22, 2007)

:


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## Ilaria (Jan 14, 2002)

Anyone here who can answer my question?









*Is it possible to have a homebirth with APS? What are the risks? Did you have one? DO you know of anyone who has?*

My 2 previous births were at term, natural, no complications.


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## ghuaghua (Jul 19, 2005)

Quote:


Originally Posted by *Ilaria* 
Anyone here who can answer my question?









*Is it possible to have a homebirth with APS? What are the risks? Did you have one? DO you know of anyone who has?*

My 2 previous births were at term, natural, no complications.

I don't know a lot about APS-but I do know that I had a clot after a c-section, and a clot during my last pregnancy (2007)-my hematologist suspects a protein S deficiency, which I was treated for with lovenox and later heparin. The moral of the story is that I had a successful home birth (in December) while on heparin, with NO COMPLICATIONS.
I know that for some this decision would be a bit more risky, but for me...it was the best option. (and best decision I've ever made!)


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## orangefoot (Oct 8, 2004)

Ilaria

I have Protein S deficiency and have ahd a DVT but booked a homebirth for my fourth. I had treatment with LMWH during the pregnancy and the high risk team agreed a homebirth plan with my midwives.

If you are not on any treatment then your risk at home is no different to your risk in hosptial I would have though - clotting can happen anywhere and they won't give you clot busting drugs in hospital anyway. The post partum period is when you need to be watchful and that is when you would be out of hospital and at home.

Talk to your care providers and if they refuse a homebirth ask them to justify their reasons for doing so and how those could be addressed. Sometimes the 'no homebirth' argument is that you can't be induced at home. The induction argument comes from the safety of epidurals with clotting or bleeding: if you intend to have a birth without epidural then that argument is blown out of the water at its source although you may have to agree to a general anaesthetic in the case of an emergency section.


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## Xenarthra (Jul 29, 2007)

ignorant question, what is APS?


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## whateverdidiwants (Jan 2, 2003)

Antiphospholipid Antibody Sydrome, also called Hughes' Disease. summary


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## Xenarthra (Jul 29, 2007)

Thanks, Whatever, interesting stuff. I think that's what I have, but didn't realize it had a fancy name!

So, the article said women were treated with lifelong doses of warfarin. Do you all only take treatment when you are pregnant and complications are more possible, or do you always take meds? I was told it was only an issue when I was pg, but from reading the article it sounds like it is always present?

I have also never had a blood test for it when I wasn't already pregnant, it will be intersting to have a blood panel done after I deliver and see if the levels are as low...


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## anjelika (May 16, 2004)

Subbing.

Recently diagnosed with prothrombin 20210 mutation after suffering bilateral PE.

Scary stuff, but I'm glad to have found this thread.


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## mackenziesmama (May 24, 2005)

Hi-

So glad to have found this thread. I'm hoping to share my story and get advice/opinions. Please be brutally honest with me and if I'm being stupid or ignorant, let me know.

My mother died of "String clots" in 1982 when I was 5 months old. She was taking BCP and smoked 2 packs of cigarettes a day.

In 2003, 16 months after an unwanted cesarean, I was on BCP and developed a PE with no evidence of DVT. I was treated for 6 months with Warfarin.

In 2005, another cesarean. I was on Lovenox pre conception and during the pregnancy. Blood levels (The anti Xfactor or something like that) was not monitored. At 36 weeks, was switched to heparin. I discontinued it at 38 weeks AMA. No problems with clotting during or after birth. OB I saw told me I was at high risk for clots and said I needed to be on the lovenox. Those were in my "Yes Doctor, whatever you say" days.

In 2007, wonderful homewater birth. Baby had pnemonia at birth, and we transfered him to hospital approx 6 hours after birth. He spent 7 days in NICU for IV antibiotics. During this time, I sat at his bedside for at least 16 hours a day, most of the time cross-legged. At 6 weeks pp, I developed leg pain, went to clinic, D-Dimer was 3475 and was Dx'd with dvt and a CT showed suspected PE. The hemotologist tested for Antithrobin 3, Factor 5 leiden, and one other while I was on warfarin, and all came back negative. He suggested a 12 month treatment of coumadin, followed by a Protein C, protien S, and a Mayo coagulation test after discontinuing for 2 weeks at the end of the 12 month treatment.

March 2008 Surprise pregnancy. Conceived while on Warfarin (5mg 4 days a week, 7.5 mg 3 days/week). Discontinued use of warfarin at 7wks 3 days gestational age. Dr & perinatologist said I needed Lovenox with testing to monitor my dose. I said no as I wanted to have the Mayo & protein tests done, so AMA, I discontinued and was tested. Still waiting for results. In the meantime, I did start Lovenox. I'm just a bit scared.

So here's my plan....I will continue Lovenox the entire pregnancy without monitoring of my dose. (I was not monitored in my second pregnancy.) My family dr wants me to see an OB, I do not. Seeing an OB means a cesarean. Since my labors are long, it is likely the lovenox will be out of my system in time for a birth. After birth, I will start warfarin and take it for 6 months (as long as mayo tests come back fine. If they don't then I'll have to see another hemotologist and come up with a different postpartum plan. we're thinking good thoughts though) and have my regular dr follow up with PT/INR. I will have baby at home. The only thing I'm a bit worried about is pph. I do not have access to pitocin. And of course, my family dr will not order it for me since he thinks I need an ob. Also, I can't switch to heparin since I don't have anyone to prescribe it for me.

What do you think?

Sorry this is so long, but if anyone understands my desire for a homebirth, it is you guys. I CAN'T HAVE ANOTHER CESAREAN. I CAN NOT!!

Thank you for reading my story. I hope to get some advice from mamas more experienced than I in this area.


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## Ilaria (Jan 14, 2002)

Thanks for your replies.
I am not planning on an epidural, so I am not sure how a HB would be riskier.


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## orangefoot (Oct 8, 2004)

Mackenzie'smama

I feel for you and hope that you can find a solution you feel comfortable with.









The Protein S results will not be true results as you are pregnant and everyone's Protein S is lower in pregnancy - you will need to get tested later on once you are off warfarin again. You can be tested for it on LMWH though which might be something to consider.

Here in the UK they don't test your levels of whatever on LMWH they just do periodic liver function test but you may need to increase your dose as youy body mass increases.

When I was researching my birth options I read that my risk of pph was higher after a long labour and also as a 'grand' multipara as this was my 4th pregnancy. I'm not sure how certain those things are but they are taken into account by OBs for sure. My labour was long - over 30 hours so the LMWH was out of my system but as I transferred in labour with brow presenting and had a pit drip to force her out + abx I ended up with belt and braces syntometrine, ergometrine and a 3 hour pitocin drip.

If this is your only concern you could consider a few things: will you have a midwife? Are you close to a hospital if you do have a pph? What would be your plan for getting there if you needed to?

We live about 25 minutes from the hospital in ordinary traffic and one friend who hb here in our town and had a pph was treated faster on transfer than another neighbour who has a pph on the delivery ward and their outcomes were broadly the same


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## mackenziesmama (May 24, 2005)

Thank you Orangefoot!!









It is so nice to be on this thread. There's so much to learn. And so much scary stuff. I just want to be normal.

I really hope that the tests come back all negative, and I can put all this behind me. Each clot has its own factors as to why it happened, so I'm going along on a wing and a prayer that it is not a hereditary thing.

Besides the protein S, are there other tests that would not be accurate if tested during pregnancy?

Thank you again very very much.


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## Charmie981 (May 30, 2002)

My new doctor (who is GREAT...like a breath of fresh air to me) said that the concern with Heparin/Lovenox and labor is NOT that you're going to bleed to death, but that you can't have an epidural if it hasn't be X hours. She went on to say "and since you won't be having an epidural, you don't have to worry about that." I







that she picked up on my not wanting an epidural and just said that I'm not having one (not I don't "plan" to have one, or I don't "want" one, but that I'm not having one).

ANYWAY, this made me much less concerned about the UC plan that DH and I are on because while I AM a midwife, I don't have pit (I use herbs) and I was REALLY worried about that. Although, currently, I am not on the lovenox, AMA of my OB, but on the advice of my hematologist. I have a MFM appointment later this month and will ask him what he thinks about it. I might end up back on it or I might not. I really enjoy the baby aspirn WAY more than the lovenox injections!!


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## ~Mamaterra~ (Jul 5, 2006)

Question for you ladies....

I've been on Heparin 5000ug twice a day for the last month and will continue until the end of my pregnancy. I have given myself all of the shots in the stomach and have noticed over the last two days that the skin on my stomach is getting "thicker" to poke the needle thru.

What is the deal with this and do I have rotate to other parts of my body?!?!


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## Sage_SS (Jun 1, 2007)

Thanks Mamaterra!









I have to be on heparin this time because I had a pulmonary embolism at 31 weeks with my last daughter. I start next week. When did you guys have to start, assuming that you needed it because you were/are pregnant?

I was on heparin after my daughter was born and I remember that it kinda stung when it was injected. Is there a way to avoid this?

Aside from your stomach, where do you inject it? LOL.. which leads me to my next question.. do you think its better to have lots of bruises in different areas of your body or is it better if they're all in one area?

I'm kinda nervous about it







I don't mind needles, but I don't like getting them everyday. I had to this four times a day for a couple of months when I had pancreatitis, but this is for 8 months.. maybe more?


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## Ilaria (Jan 14, 2002)

I started the heparin at 6 weeks, as soon as i found out I was pg and got a script for it.
I am still on it (I am 30 weeks) but slacking off...I do a shot every 3rd or 4th day. My gums were bleeding and I was very bruised. I only do them on my belly, but yes, the skin is getting tougher! It's hard to find a soft spot!


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## Argonaut (Apr 27, 2005)

I've got a question for those of you who have been through this before... I had my lovenox/heparin baby in November (I wasn't on it with my first) and took my last injection on Christmas day, but I STILL have an area on my belly that looks bruised a few inches below my belly button. I used to do a lot of my injections in that spot. It sort of blended with my linea ***** at first, but the rest of the linea ***** has faded and now I just have this discolored area about the size of a silver dollar that hasn't gone away yet. Has this happened to anyone else? Will it eventually fade, or am I going to be stuck with this big bruise-looking thing forever?


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## orangefoot (Oct 8, 2004)

Mamaterra and Sage, try moving out towards your hips and the skin above your hip bones, the whole area covered by your fingers, hand and thumb are if you strike a 'hands on hips' pose.

Injecting at an angle, keeping very still and stabbing a bit to find a less painful spot all helped me minimise my bruising. If it really hurts to just get the needle in let alone push the liquid just pull out and try another spot.

I started injecting at 5 weeks and thought I would look a mess by 40 weeks and wouldn't be able to touch my belly at all for bruising but by then I was really good at it an had minimal bruising. I was injecting LMWH though at 5000iu and later 7500iu so much less volume that the heparin can be.

Argonaut - I have no idea why that bruise would still be there. Is it a bulge in a surface vein that looks like a bruise maybe?


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## whateverdidiwants (Jan 2, 2003)

My bruises lasted forever - are you really pale?


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## Argonaut (Apr 27, 2005)

Hmm.. I don't think it's a vein thing. It seems more surface than that, and too big. And it's more brownish like the linea ***** or a bruise that's starting to fade, not purplish.

I'm not super fair skinned. I can tan easily and take a fair amount of sun without burning.. I'm not olive skinned or anything though either. Just sort of medium.

My belly is already a wreck from how much it had to stretch to accomodate my giant babies (10 lb 2 oz and 9 lb 7 oz) coupled with my massive pregnancy weight gains, so I guess it doesn't matter because even though I've lost the baby weight my belly will never see the light of day again anyway...


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## ~Mamaterra~ (Jul 5, 2006)

Another thing to minimize the bruising is not to pinch the site where you are going to inject but rather use the natural fold of fat as raising the subcutaneous site.

I started at 4 weeks 12 hours after my BFP and a nurse at the hospital did the first injection. She pinched my stomach fat to get a subcutaneous site and I have never bruised so bad....like that bruise that Argonaut is referring to, and it is still bruised.

Also injecting the heparin slowly seems to illeviate the stinging and tissue displacement for bruising.


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## neverdoingitagain (Mar 30, 2005)

Also check the tips of the needles. Sometimes they are bend a tiny bit, making it difficult to punch through the skin. Can't do much about that except find a "dead" spot and push hard


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## Sage_SS (Jun 1, 2007)

Hmm.. interesting that my OB is waiting until I'm 10 weeks to start the heparin.

I'll try those tips as soon as I start. I'm not due until Dec. so I'll spend a very large portion of my summer in my bathing suit either in the pool, or beside the pool. I'd rather not be full of bruises...


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## ~Mamaterra~ (Jul 5, 2006)

Has anyone ever poked those nasty, knot bruises to relieve the pressure? And if so, what happened?

B/c if I inject into a site that still have the remmants of a bruise, I will bleed so I try to avoid this. But I have some nasty, knotty bruises and my dh is trying to convince me to do this to relieve the pressure. WWYD?


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## kwilki8 (May 24, 2005)

I did that (on accident) once and besides hurting really bad, it made a bigger bruise that I can still see 6 months later--and the knot didn't go away.


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## ~Mamaterra~ (Jul 5, 2006)

bumping


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## orangefoot (Oct 8, 2004)

How is everyone?

I had a DVT 5 years ago and I've had a bad couple of weeks with my leg and went to have a scan because it felt so bad. The scan showed no new clotting but that flow behind my knee is a bit sluggish as the vein at that point is more blocked with old clot than elsewhere. The found nothing to explain the swelling and pain I've been experiencing despite wearing compression. My trosers are tight

My hemo is a good man but all he and the nurses can do is say that it's post thrombotic syndrome and sometimes it just gets worse for no reason.

Most of the time I feel OK but when I'm not it makes me feel fearful and I don't like it. I've been thinking about Shannon0218 and another friend from the Protein S forum who died last year







We worry about pregnancy but to be honest I feel safer while pregnant and injecting than I do right now.

Sorry to be melancholy
Rachel


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## neverdoingitagain (Mar 30, 2005)




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## theartsymom (May 26, 2008)

hugs to all the mommas here!
I made it through all 26 pages and learned a TON!
I have just been diagnised with Anticardiolipin Antibody Syndrome and we are looking for opinions on treatment and delivery- found a ton on this thread.

I see that lots of moms have a sucessful OOH birth. Yea!
Can I hear from some moms that did Hospital Births? A local midwife told me that Lovenox/Heprin therapy would risk me out of BC birth.


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## kwilki8 (May 24, 2005)

orangefoot, how are you feeling? I can relate to the fear of being without therapy. I stopped injections a week ago at 6 weeks pp. I thought I'd be doing happy dances, and I kind of am, but I am also a bit nervous without the safety net of the medication. It was easier when I didn't know what to fear.

theartsymom, I planned for a natural hospital birth. Did you have any specific questions about it? I ended up having an abrupt c-section due to other complications unrelated to my blood clotting disorder, but I had a plan in place that I was comfortable with.


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## neverdoingitagain (Mar 30, 2005)

I had hospital birth, that was a natural childbirth. What would you like to know?


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## Ilaria (Jan 14, 2002)

I have been diagnosed with APS too, just recently (here in the Phils, dr did residence at harvard)....however, my dr in Italy (Head of Immuno/Rheuma dept at Univeristy of Milan) disagrees....so I'm not sure now...

Either way, I have had two kids in the hospital and this one will be a homebirth. I am no longer on heparin (stopped at 32 weeks), still on aspirin till 37 weeks. Getting bi-weekly ultrasounds for biophysical profile. All is good so far! I am 35 w 2 d.


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## Ilaria (Jan 14, 2002)

Quote:


Originally Posted by *theartsymom* 
A local midwife told me that Lovenox/Heprin therapy would risk me out of BC birth.

Would you be on heparin until the 40th week?
Most drs will ask you to stop injecting as soon as you start labor, heparin (LMWH) is out of your system in 12 hours and has no adverse effect on the birth.
The problem is that if you are on hep you cannot get an epidural and an eventual c-section would have to be done under general anesthesia.


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## Girlprof (Jun 11, 2007)

I was scheduled to give birth in a BC but ended up risking out for high blood pressure - not related to the clotting stuff though.

Sarah


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## orangefoot (Oct 8, 2004)

I'm not feeling too bad today thanks, and I've got new compression stockings too so that helps. It just all gets a bit on top of me sometimes and freaks me out.

I've had four hospital births and am a fantastically failed homebirther! Two were with only post partum treatment and one after treatment in pregnancy. I injected right up until I went in to labour with the fourth and would have had a homebirth if not for my brow-presenting little one finding it tricky to get out. The third was at birth centre but transferred to hospital with a similar problem with presentation and also ended up augmented to get her out.

The thing they might worry about at a birth centre is what to do if you bleed badly but I imagine that all centres have a plan in place for unexpected PPH anyway so should just follow that procedure. All the reading I did before my last labour left me feeling relatively confident that my risk of bleeding out was not that much different to anyone elses unless I had injected less than say 4-6 hours before the actual birth when the effect of LMWH is at its peak.

Something to remember about LMWH is that it doesn't work like warfarin/coumadin by lengthening your clotting time; it works by switching off OVER-clotting.


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## orangefoot (Oct 8, 2004)

I had no idea it had been so long since this thread was on page 1!


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## jenholle (Dec 12, 2007)

All:
I just found this thread and am SO happy to have found it. I am just over 6 weeks pregnant and have possible APLS and also want the most natural (hospital) birth possible. I say "possible APLS" because in spring of 2007 I had an incident of low platelets (15,000!) and after a ton of blood work I tested positive for Lupus Anticoagulant. Since then I have seen a great hematologist. I have since tested two more times and was NEGATIVE for Lupus Anticoagulant both of those times. He recommended baby aspirin at all times and that once I become pregnant I see a perinatologist who specializes in coagulation disorders. So...here I am. I have had one visit with an OB (unfortunately the hospital that the peri. is associated with does not offer midwives although I would much rather have one) and have met with the peri. The hema. said just baby aspirin but the peri. is not sure and thinks possibly lovenox. He said it's completely safe for baby as it doesn't cross the placenta. He did blood work and I'll find out about the Lupus anticoagulant at my next appt. on 8/21. I do have two children and had one early miscarriage in between the two. I have never had a DVT or any other clot.

This is just so hard. I don't know what to do...do I stick with the baby aspirin or do I do the Lovenox???? I obviously want a healthy pregnancy and a healthy baby in the end but I don't want to be completely overwhelmed with medical interventions to the point that they are too much.

Any thoughts, experiences, ideas you have would be GREATLY appreciated!! Thanks so much. I plan to go back and look at the earlier posts later on as well


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## Sassypants (Oct 22, 2007)

Hi ladies,
just found this thread and I have a few questions I'm hoping you can help me with.

I am 39, mother of a 5 month old DD and I'm pregnant again (not planned, it's kinda sooner than we thought we would try for, but we are happy it was so easy - DD was an 'accident' as well, so I guess we're much more fertile than we thought







)

Anyway, after planning for a HomeBirth, DD was born at 36 weeks via emergency C-Section because at my weekly NST the Dr found she had no diastolic flow in the cord between us. He had been monitoring her because she was small and he was concerned about IUGR, but once he saw that on the ultrasound we raced over to the hospital and she was out of me within 20 minutes. After 1 month in the NICU (she was 3lbs 11oz and she was seizing when she was born due to the restriction of blood flow) we came home and she's now doing well, with only a few residual effects.

Bottom line, we were TOTALLY taken by surprise with the circumstances of her birth and we had no idea she was in trouble until that very day. The pathology report on my placenta came back saying that it was only half the size it should have been and that it was 80% clotted!!
A hematologist I took my results to made the comment that "a placenta like this usually results in a miscarriage during the second trimester". So you can imagine how blessed we feel that our baby girl pulled through and fought so hard to stay alive.
As you would expect they took tons of tests and the only thing that came back was that I was positive for Heterozygous MTHFR and my OB told me I'd probably have to be on blood thinners for any subsequent pregnancies.
But he also said that Heterozygous is a very mild version of MTHFR and he wasnt sure that was the ONLY cause of the problem because he's had other patients who were hetero and they had no problems at all.
He mentioned that we may need to do additional bloodwork to check for any other thrombophilia disorders.

Well, when I found out I was pregnant again, I immediately called my OB because I didnt know how pregnant I was (never had a period cuz I am still nursing) and I was worried I needed to get on blood thinners right away. I went in for an ultrasound and turns out I'm only about 4 weeks past conception and now my OB is saying that after reviewing all my test results with a perinatologist, I didnt need to take any other blood tests and that the "current thought is that all you have to do is start taking 4-5mg of Folic Acid a day with high doses of Vitamin B and maybe a daily Baby Aspirin".
So basically he's saying I dont need to be on Heparin or any other blood thinners, just the Folgard and Baby Aspirin and that I dont need to check for any other issues even though he had previously said it's rare for a heterozygous version of MTHFR to cause such severe clotting.

Does this sound right to you?? I have another appt with him next week and I plan to ask him why he changed his opinion on the Heparin. I mean obviously, if I can control the clotting with just the Folgard and Aspirin I would prefer not to be on medications during the pregnancy. But if being on Heparin means the difference between keeping my placenta from clotting and having a healthy baby, then of course, I would rather be on the medication, even if there are some possible risks.

So what should I do? I already called the hematologist who had reviewed my previous test results and asked him what additional blood panels he would suggest for me; he responded by suggesting an *A*ntiphospholipid Antibody Panel, *L*upus Anticoagulant and *F*actor VIII Activity. I plan to tell my OB this when I see him next. But reading all these posts about how most Drs put you on Heparin immediately after pregnancy was confirmed is making me nervous.

I did buy some Folgard AND some Folapro because I read that Folapro was actually a more absorbable form of folate for the body. I am taking those now and I have to ask my Pediatrician what he thinks about my taking the Baby Aspirin before I start doing that since I'm still nursing (Reye's Syndrome concerns). But I'm just so worried. After getting slammed last time with such a traumatic birth and finding out that my baby girl had been struggling for so long in the womb, I just want to do everything right this time for our new baby.

One last final question - how much of each (Folapro and Folgard) should I take to equal the 5mg of Folic Acid I'm supposed to take each day? I figured something like 50/50 (One 2.2mg Folgard and Two 800mcg Folapros plus the 800mcgs that are in my prenatals.) - that comes out to 4.6mg of Folic Acid, is that a good combination or should I change it up somehow or add even more??

Thanks so much!!
I am looking forward to hearing what you have to say


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## theartsymom (May 26, 2008)

HUGS-
I anticardiolipin antibody syndrome and mthfr 677 as well- no history of clots- but DD was a 31 weeker due to HELLP syndrome.
I had all the underlying condition test run and the OB wanted to do lovenox/ heprin from +hpt to 6 weeks PP.
We consulted with two Perinatalogists and BOTH agreed that with my results and history- that lovenox was not appropiate.
I am on 3 additional mg of folic acid and low dose asprin- plus the prenatals.
I am going to the OB and the Peri throught out the pg.
HUGS AND GL!


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## Ilaria (Jan 14, 2002)

Jenholle and Sassypants,
I cannot say what you should or should not take, but I can tell you what I did.

I have APS, no history of clots.
I have had 4 miscarriages and 3 healthy children. My children's pregnancies were very medicated!
My first 2: progesterone, baby aspirin, heparin. Both born at term, average weight.
My third: progesterone, baby aspirin, heparin, monthly IVIG, prednisone.
The last month I had ultrasounds weekly to monitor the placenta and blood flow.
I had an (unassisted) homebirth, 9 days before due date, baby was 8.4.


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## whateverdidiwants (Jan 2, 2003)

Sasspants - I would go straight to the hem and follow his instructions and at least start taking aspirin in the meantime. IMO OBs aren't the best source of information about clotting disorders and often have outdated protocols.


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## AllyRae (Dec 10, 2003)

I know I posted in this thread somewhere, but it was when we thought we weren't having any more children. Surprise--apparently we are. LOL! Anyhow, I have essential thrombocythemia which is a form of chronic leukemia (not just something present during pregnancy). I developed it over 2 years ago. During this pregnancy, my risk of clotting and hemmoraging is pretty high. I'm on baby aspirin and have ultrasounds at every appointment to check for clots, iugr, etc. At 37 weeks, I'll be having a c-section (I won't do pitocin after what happened to our son, but this baby needs to come out as soon as it's safe to do so...)


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## HoosierDiaperinMama (Sep 23, 2003)

Quote:


Originally Posted by *AllyRae* 
I know I posted in this thread somewhere, but it was when we thought we weren't having any more children. Surprise--apparently we are. LOL! Anyhow, I have essential thrombocythemia which is a form of chronic leukemia (not just something present during pregnancy). I developed it over 2 years ago. During this pregnancy, my risk of clotting and hemmoraging is pretty high. I'm on baby aspirin and have ultrasounds at every appointment to check for clots, iugr, etc. At 37 weeks, I'll be having a c-section (I won't do pitocin after what happened to our son, but this baby needs to come out as soon as it's safe to do so...)

OMG, Ally!!! I had no idea!!!! Wow!







:







: I wish you a safe pregnancy. Let's get little Amelia here safe and sound!


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## railyuh (Jun 29, 2005)

Hi everyone, I'm new to this thread. I have had 3 first trimester m/c and after the third I found out that I am compound heterozygous for MTHFR. My OB told me I just needed the folic acid, b6, and b12 and everything should be fine. He also told me he didn't really know much about it so I went ahead and made myself an appt with an RE. Our appt with the RE is next week and I am hoping to have some further testing done (to check for other clotting disorders or possibly other issues since my OB only ran a very basis test) and to ask about baby aspirin (which I've actually been taking anyway since it seems like everything I read online says I should be taking it) and the possibility of heparin/lovenox.

So here is the thing, I really want to have a homebirth. There is no birth center in my area so it is either a hospital birth (which I had with DS) or homebirth. Obviously, having my baby and myself be okay is what is most important to me, but I just don't know if this is something that would preclude me from having a homebirth. I don't really want to ask the RE about it because I am guessing he would say homebirths aren't safe for anyone at all. I figured here would be a good place to ask. If MTHFR is my only issue, is homebirth out of the question? Does it make a difference if I take heparin/lovenox? I would like to avoid using those, but again, I also don't want to lose another baby. I am just not sure if they are necessary.

Thanks in advance for any help you could give me on this...


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## babygrant (Mar 10, 2005)

Hey everyone
I have type 1 von willebrand disease and I've been seeing a hematologist. The only symptom I have right now is heavy heavy heavy severe bleeding during the first 4 days of AF. Hematologist says there is nothing he can do for me, I need to see an gynecologist.







: I bled a lot after the births of both kids and needed pitocin. Something also happened when I had my tonsils out when I was 15, but I can't remember what happened and neither can my mom. Anyone have any advice?
Angela


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## anjelika (May 16, 2004)

Quote:


Originally Posted by *babygrant* 
Hey everyone
I have type 1 von willebrand disease and I've been seeing a hematologist. The only symptom I have right now is heavy heavy heavy severe bleeding during the first 4 days of AF. Hematologist says there is nothing he can do for me, I need to see an gynecologist.







: I bled a lot after the births of both kids and needed pitocin. Something also happened when I had my tonsils out when I was 15, but I can't remember what happened and neither can my mom. Anyone have any advice?
Angela

Could be a hormonal imbalance - I would get some bloodwork done.

I am unable to continue with hormonal therapy (thank you, clotting disorders!














but I do drink RRL tea and bone up on my iron and B vitamins during AF. This helps to regulate things. Good luck!


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## orangefoot (Oct 8, 2004)

Quote:


Originally Posted by *Espresso* 
and is KNOWN to cause birth defects.

What are you referring to here?

BabyGrant I think there is a VOn Willebrand support group out there somewhere and I know the British Haemophilia Society have a VW page and I just found this link to a booklet you can view online which may give you some clues.

I am a clotter not a bleeder but I've read the info at the centre I go to and I'm sure that heavy menstrual bleeding is a sign of VW and so it is definitely a haematologist you need as this is not an obstetric problem - unless he is suggesting you do away with the problem by removing the offending uterus







:. You need a new haemo if yours isn't interested.


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## ghuaghua (Jul 19, 2005)

I'm back again...

I posted in here last year during my second pregnancy (we had a beautiful home birth 12/2007)

and NOW, I'm expecting in June 09! We are planning another home birth, and are quite excited about it now.

I had 2 blood clots, one after a c-section, and the other in the 3rd trimester of second pregnancy. I stayed on Lovenox post partum (because I'm nursing) and have just continued it right into this pregnancy.

During my last pregnancy I was seeing a hematologist that was 'ok' with home birth, but would push me to see an OB at nearly every visit. (which I never did)
I found out today that she is on maternity leave until March, so I will be seeing another doctor. This makes me incredibly nervous, because you never know who you will get!

I was told I would be seeing Dr. Hwang or Dr. Wu (In the Indianapolis area)
Is anyone familiar with them?
Also, for anyone who was considering a home birth, how did you pick your hematologist? It seems like it would be a little strange to just call around asking "hey, are you home birth friendly?" (although I really wish it were that simple)

I guess I should include that this is for a likely, but not confirmed protein S deficiency.

Thanks!


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## neverdoingitagain (Mar 30, 2005)

Quote:


Originally Posted by *ghuaghua* 
I'm back again...

I posted in here last year during my second pregnancy (we had a beautiful home birth 12/2007)

and NOW, I'm expecting in June 09! We are planning another home birth, and are quite excited about it now.

I had 2 blood clots, one after a c-section, and the other in the 3rd trimester of second pregnancy. I stayed on Lovenox post partum (because I'm nursing) and have just continued it right into this pregnancy.

During my last pregnancy I was seeing a hematologist that was 'ok' with home birth, but would push me to see an OB at nearly every visit. (which I never did)
I found out today that she is on maternity leave until March, so I will be seeing another doctor. This makes me incredibly nervous, because you never know who you will get!

I was told I would be seeing Dr. Wong or Dr. Woo (In the Indianapolis area)
Is anyone familiar with them?
Also, for anyone who was considering a home birth, how did you pick your hematologist? It seems like it would be a little strange to just call around asking "hey, are you home birth friendly?" (although I really wish it were that simple)

I guess I should include that this is for a likely, but not confirmed protein S deficiency.

Thanks!

Congratulations!







:







:







:
Its so great to hear that you were able to have the home birth you wanted AND that you're pregnant again! Nerve-wracking as it may be








I think that if you tell your hemo about your sucessful homebirth, they may be a little more relaxed about it. Though don't count on it







Not that it matters, you're the one giving birth. They may push for all kinds of things but ultimately, its up to you.


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## babygrant (Mar 10, 2005)

Anyone know of any dietary recommendations for people with von willebrand?


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## railyuh (Jun 29, 2005)

Hey, bumping this back up to ask about homebirth. As I said a couple of posts up, I am compound hetero for MTHFR. I'm almost 19 weeks pregnant and no problems so far. I have been taking the extra folic acid, b6, and b12 along with a daily baby aspirin.

Do you think my situation risks me out of homebirth? I really want to have a homebirth and am in the process of looking for a midwife. I know what my OB will tell me, so I was looking for opinions from the other side of the fence where people are actually open to homebirth in the first place.

Thanks!


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## anjelika (May 16, 2004)

Quote:


Originally Posted by *railyuh* 
Hey, bumping this back up to ask about homebirth. As I said a couple of posts up, I am compound hetero for MTHFR. I'm almost 19 weeks pregnant and no problems so far. I have been taking the extra folic acid, b6, and b12 along with a daily baby aspirin.

Do you think my situation risks me out of homebirth? I really want to have a homebirth and am in the process of looking for a midwife. I know what my OB will tell me, so I was looking for opinions from the other side of the fence where people are actually open to homebirth in the first place.

Thanks!

Do you have any prior clotting instances? If so, then have a hospital birth (I've known a few women with prior clotting who died shortly after birth due to further clotting).

I am not a doctor or involved with the medical profession other than being a patient, but I think that if you are not so severe as to be managed with Lovenox/Heparin (which due to the bleeding risk you'd probably be best in a hospital), that you might not necessarily be risked out of a homebirth. Definitely keep up on the prenatal care and keep close track of any symptoms and pain, but talk to a midwife to see what your options are. Can you get prenatal care through a midwife for consistency's sake? Is a hospital near by just in case?

Unfortunately, I'm risked out - 3 clotting factors (MTHFR, Prothrombin 20210A, and Lupus Anticoagulant), problems in prior pregnancy, and history of emboli with infarction - but I know of some moms on this thread have had homebirths. Good luck!


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## Ilaria (Jan 14, 2002)

I had a (wonderful, unassisted) HB







: I think I have some more detail in a previous post on this thread.


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## expatmommy (Nov 7, 2006)

Did your doctors make any recommendations for how long you should be on folic acid/B6/B12/baby asprin prior to conception? My doctor has said at least 3 months & preferrably 6 to build up stores.

I had a 22 week stillbirth due to a placental hemmorhage, and subsequently discovered I have very high homocysteine. My doc is treating me as if I have a clotting disorder, although most bloodwork is back & is clear (MTHFR pending).


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## ghuaghua (Jul 19, 2005)

Quote:


Originally Posted by *railyuh* 
Hey, bumping this back up to ask about homebirth. As I said a couple of posts up, I am compound hetero for MTHFR. I'm almost 19 weeks pregnant and no problems so far. I have been taking the extra folic acid, b6, and b12 along with a daily baby aspirin.

Do you think my situation risks me out of homebirth? I really want to have a homebirth and am in the process of looking for a midwife. I know what my OB will tell me, so I was looking for opinions from the other side of the fence where people are actually open to homebirth in the first place.

Thanks!

As someone else said, if you aren't on Lovenox or Heparin, it may not be that serious? I found midwives in my area who are fine with me having a home birth on Lovenox/Heparin. In fact, I already had one, and it went incredibly well.


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## lil_miss_understood (Jul 19, 2006)

Hope you ladies don't mind, I'm going to lurk. I have an aunt with an unknown bleeding disorder (possibly clotting, I'm wondering about von Willebrand's but she's been trying to find out what's wrong for at least 40 years).


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## BRmama (Mar 18, 2008)

Hi, I've also been lurking for a while. Unfortunately my options of a homebirth are out of the question for me. I've been diagnosed with dvt. I was on lovenox and now I'm on warfarin (coumaden). I just recently had my baby about two months ago, from an emergency c-section, and now I have two blood clots. I guess my question is this. Before last week my bleeding from the postpartum c-section was almost finished. Coming in drops here and there. After my six week appointment last week I have been bleeding a whole lot more. Like heavy bleeding. Anyway I called the on call dr. for my ob and he said that it's normal it's just me going into my first period since the c-section. So can you really go straight from the c-section bleeding to your first period? I thought your body needed time to recover so it could build up that blood for the baby and once it realizes that the body isn't pregnant then it would come.


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## airmide_m (May 8, 2006)

I finally have an appointment scheduled with a hematologist, but I need some advice!

My general doctor ran I think 4 tests last fall and just said "everything came back fine". I know from experience (12 years hypothyroid before someone checked antibodies) not to ever let it go at that.

So I told the scheduler at the hematologist that I'd had a few tests run, and that they could request records. I also told her that my insurance does NOT require a referral to a specialist, and I've already gotten confirmation this doctor is in network and the visit will be fully covered.

Today someone called me back saying "We called your doctor and he hasn't seen you since October of 2008. I need to know who we are getting records from about your blood clots".

1. I'm pretty sure I had an appointment in December of 2008. 2. if I KNEW I had blood clots, wouldn't I go to the ER, or already be under the care of a specialist and not totally fine with waiting 2 or 3 weeks for an appointment? (maybe not? I figure you go to a hematologist to get diagnosed as well as to get treatment)

I think I have a bunch of risks and symptoms, but with my experience with doctors I still always wonder if it will be enough to persuade them to test me.

I have agonizingly painful periods. (TMI warning) Very heavy flow for 5-7 days, with lots of clots, usually around the size of a smushed grape or so. I also spot for at least 7 days before my period. During that entire 2+ weeks I'm in a lot of pain, often enough to make it difficult to even stand up. For the first 24 hours at least, sometimes up to 2 or 3 days, it's bad enough that even on vicodin AND baclofen, I'm hardly able to get out of bed to go to the bathroom by myself.

I have Hashimoto's hypothyroid. Even after treatment of that and of low progesterone, the periods haven't really changed. And I know having one auto-immune problem, especially Hashi's, increases the chances that you'd have another, like an auto-immune clotting disorder.

I seem to bruise very easily. I often have bruises all over my legs and sometimes arms, and often have no idea where many of them came from.

My gums almost always bleed no matter how gently I try to brush or floss.

When I was getting blood drawn for some other tests, the nurse asked me if I'd ever been diagnosed with a clotting disorder, because my blood was clotting before she could even get it into the tubes!

I've been through one failed IVF, and 3 years TTC. I know we have severe male factor but I really think it's more than just that.

Do you think these symptoms will be enough to get a doctor to run enough tests to either diagnose me or put my mind at ease? Are there other symptoms I'm not thinking of that I might have and should tell them about? Any other advice? TIA!


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## ghuaghua (Jul 19, 2005)

With my last pregnancy I was on Lovenox from weeks 28-36 and then Heparin from 36-39 (labor started naturally/homebirth...)

This time I was wondering about just staying on Lovenox and not switching to Heparin. Has anyone does this that did not have a planned induction?

From what I gather, The half life of Lovenox is 24 hours vs. Heparin's 12, but I'm wondering if the fact that I take it in two doses would make a difference. (safer than just one large dose?) If I do go to Heparin, it will be the lovely 3x a day shots, vs. my current 2x Lovenox.

I will run this by my Hematologist at my next appnt. just thought maybe someone would have some experience with this. Thanks!


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## HoosierDiaperinMama (Sep 23, 2003)

Just wanted to post again and say that we are surprisingly expecting again. We are also adopting, but found out in January that I was pg. This is my 4th pregnancy. I have 1 living child, my 2nd pregnancy ended in a stillbirth at 37 wks., my 3rd pregnancy was a missed miscarriage somewhere between 10-15 weeks, and now here I am at almost 18 weeks and doing fine. I have MTHFR and PAI I.

I am on Lovenox, 100 mg shots twice a day. Heparin will come at the end at some point, but this baby will be taken by c-section as soon as it's safe to do so. Just wanted to update.


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## neverdoingitagain (Mar 30, 2005)

Quote:


Originally Posted by *ghuaghua* 
With my last pregnancy I was on Lovenox from weeks 28-36 and then Heparin from 36-39 (labor started naturally/homebirth...)

This time I was wondering about just staying on Lovenox and not switching to Heparin. Has anyone does this that did not have a planned induction?

From what I gather, The half life of Lovenox is 24 hours vs. Heparin's 12, but I'm wondering if the fact that I take it in two doses would make a difference. (safer than just one large dose?) If I do go to Heparin, it will be the lovely 3x a day shots, vs. my current 2x Lovenox.

I will run this by my Hematologist at my next appnt. just thought maybe someone would have some experience with this. Thanks!

Me, I was on LMWH all through my pregnancy and went into labour naturally. I was over 24 hours from my last shot, mainly because I opted not to take my shot that morning when I started having contrax. Had a natural drug free birth with no complications. I don't think the dosage amount matters, you will still have it in your system 24 hours later.

As long as you are not having bleeding issues (meaning your blood is too thin) being on LMWH will not affect your birth. Remember, they often use LMWH during surgery to prevent blood clots. As long as you aren't getting an epidural, you won't need to worry. (If c-section is necessary, you will need to be put under general)
Definately talk to the Hemo, so you have "ammo" when you talk to your mw or cp. Good luck







hope that helps.


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## neverdoingitagain (Mar 30, 2005)

Quote:


Originally Posted by *HoosierDiaperinMama* 
Just wanted to post again and say that we are surprisingly expecting again. We are also adopting, but found out in January that I was pg. This is my 4th pregnancy. I have 1 living child, my 2nd pregnancy ended in a stillbirth at 37 wks., my 3rd pregnancy was a missed miscarriage somewhere between 10-15 weeks, and now here I am at almost 18 weeks and doing fine. I have MTHFR and PAI I.

I am on Lovenox, 100 mg shots twice a day. Heparin will come at the end at some point, but this baby will be taken by c-section as soon as it's safe to do so. Just wanted to update.

















: gratz! Hope your pregnancy stays on a smooth course!


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## ghuaghua (Jul 19, 2005)

Quote:


Originally Posted by *neverdoingitagain* 
Me, I was on LMWH all through my pregnancy and went into labour naturally. I was over 24 hours from my last shot, mainly because I opted not to take my shot that morning when I started having contrax. Had a natural drug free birth with no complications. I don't think the dosage amount matters, you will still have it in your system 24 hours later.

As long as you are not having bleeding issues (meaning your blood is too thin) being on LMWH will not affect your birth. Remember, they often use LMWH during surgery to prevent blood clots. As long as you aren't getting an epidural, you won't need to worry. (If c-section is necessary, you will need to be put under general)
Definately talk to the Hemo, so you have "ammo" when you talk to your mw or cp. Good luck







hope that helps.

Thanks! I am hoping to have good timing like I did last time (labor starting just a few hours before my next shot, which I skipped) My last labor was 15 hours, so that was fine I suppose, even if I HAD taken my shot that morning. I was just a little concerned about the 24 time frame, as I don't expect this one to take that long.


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## KimPM (Nov 18, 2005)

Quote:


Originally Posted by *babygrant* 
Anyone know of any dietary recommendations for people with von willebrand?

I have type 1 von Willebrand. I have to avoid taking any supplemental vitamin E and fish oil. (I don't like fish so I don't eat it, but it's probably not a good idea to consume fish unless you know the type of fish you're eating has no EPA.) Actually any supplements containing EPA should be avoided. I've been okay for years taking DHA alone - Neuromins (so far only Vitamin Shoppe brand is what I've been able to find without both vitaimin E or EPA in it). Be careful taking too much vitamin A - you'll likely need to offset that with some vitamin K. The way I understand how vitamin A works is that it prevents the toxicity of vitamin D, but it uses up your vitamin K stores in doing so. You won't notice a problem right away, but after your vitamin K stores are low enough you could run into more bleeding problems than with just the willebrands alone.

Herbs: there are a number of herbs that aggravate bleeding conditions. Ginkgo is one of those herbs. There are plenty of others, just don't have them off the top of my head right now.

Estrogens: because the willebrand level rises with estrogen levels, it is known that taking estrogen (BCP or HRT) raises the willebrand level. I wonder if estrogenic foods (the phytoestrogens in soy, broccoli, medicinal herbs, etc) also do the same thing. I also wonder if bioidentical estrogen also does the same thing. Likely. This is only helpful for those with type 1 von willebrands, as the LEVEL of vwf is the problem, not the QUALITY or PERFORMANCE of it.

Estrogen levels are lowest in the first half of your cycle. I've noticed that when I get nosebleeds, I only get them the first few days of my cycle, usually day 1 or 2. Don't schedule surgery or dental work during the first half of your cycle if at all possible.

The von willebrand level also rises with cortisol (stress). If you're also having adrenal fatigue where they can't put out enough cortisol you may also have lower levels of vwf. On the other hand, if they are checking your blood vwf level, stress during the test and the timing of the test (say, in the second half of your cycle) can skew the test result to look higher than it would during other times.

babygrant - I'm surprised your hematologist hasn't prescribed or used Stimate or DDAVP. It could be a lifesaver. I was given an IV of DDAVP right as I was doing my final pushing to get my DS out. I also have Stimate nasal spray and the last nosebleed Stimate was the only way I was able to stop it. Also, it's nice to know I have it, in case of accident, though I hope I never need it for that. Though, it's probably not something you'd use every month for AF. Only if you perhaps once a year get a truly serious and worrying amount of AF.

ETA: I found this site awhile back... http://www.ctds.info/nose_bleeds.html


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## hmseyer21 (Jan 31, 2008)

I was told to stop nursing my 15 month old today because I found out I'm pregnant and I have mthfr(compound hetero) and started Lovenox. The concern was not the lovenox as much as the nutrient needs of the baby due to poor folic acid absorption with this disorder and history of miscarriage.

So I am so sad about this.







It's so sudden and unexpected and we have such a good nursing relationship that it breaks my heart. Anyone have any advice or help with sudden weaning?

I wish there was a way around this, but it seems too risky to keep going. I can do a nightime feeding for a bit just to ease him into no mama's milk in the middle of the night, but that's pretty much it. That will make it harder for me to dry up though, so I am going to try not to even do that, if I am strong enough.

Anyone else ever had to do this?


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## chilliepepper (Oct 14, 2005)

Hmmm. Well...I'm not you, and I don't have a history of miscarriage, and maybe your homocysteine levels are much different than mine were...but I was also nursing a 15mo when I was diagnosed compound hetero MTHFR and started Lovenox. No one told me to stop nursing, and I continued to nurse the 15mo until he was 2 and a half---along with the baby of course after he was born! They are now 4 and 2, and everyone is fine.

I thought the poor folic acid absorption was the reason that people with our condition are often advised to take megadoses of folic acid during pregnancy. 4mg or so.

Please don't take my experience as doctor's advice---your situation may be way different than mine---again I have no history of miscarriage---but I will say that MTHFR doesn't automatically mean a person has to stop nursing.


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## orangefoot (Oct 8, 2004)

Get a second opinion! Many OBs think it is wrong to breastfeed during pregnancy regardless of any other complicating medial conditions.

As Chillie says mega doses of Folic acid are there to help. Lovenox is fine for babies in-utero and babies at the breast.

If it were me I would keep nursing for now until getting a second or third opinion on the situation. Sudden weaning isn't good for mama nor little one so just doing it on the say so of one person would not be my choice.

That said, I am no doctor so do get a second opinion.

And congratulations on your pregnancy







:


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## isabchi (Sep 14, 2006)

Quote:


Originally Posted by *railyuh* 
Hey, bumping this back up to ask about homebirth. As I said a couple of posts up, I am compound hetero for MTHFR. I'm almost 19 weeks pregnant and no problems so far. I have been taking the extra folic acid, b6, and b12 along with a daily baby aspirin.

Do you think my situation risks me out of homebirth? I really want to have a homebirth and am in the process of looking for a midwife. I know what my OB will tell me, so I was looking for opinions from the other side of the fence where people are actually open to homebirth in the first place.

Thanks!

I had my HBAC, with not problem at all.







:

I have MTHFR, C677T,


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## hmseyer21 (Jan 31, 2008)

Thank you chillie and orangefoot! So helpful to know someone else was in the same situation and nothing bad happened after continued nursing. I was thinking pretty much the same thing but since I knew no one else who has mthfr, pregnant, and nursing I wasn't sure if it were a bad idea. I think I do want to begin the weaning process anyhow, but stopping cold turkey seemed harsh, physically and emotionally for the both of us!
My first son was born with spine and heart defects but I was not being treated with the extra 4 mg of folic acid at the time since I didn't know about the disorder until after my miscarriage with my second pregnancy.

I am taking the extra 4 mg, should that be sufficient while nursing as well, or should I take more?


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## HoosierDiaperinMama (Sep 23, 2003)

Just wanted to post a quick update.

I am now 35w2d and delivery is scheduled for next Tuesday @ 36w1d. My dd was stillborn due to a placental abruption @ 36w6d and so they are trying to steer clear of that time so as to have a safe delivery this time! I have switched to Heparin now and am on it twice a day. Monday evening will be my last dose and then I start back on the Lovenox (40 mg. once a day) after delivery for 6 weeks pp.

Just curious if anyone has had low birthweight babies due to being on Lovenox?


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## 5thAttempt (Apr 22, 2006)

I used to be an active participant of this tread 3 years ago while being pregnant. My lovenox/heparin baby was a slightly smaller then non-medicated baby 10 years earlier: 7.11 vs 6.8. 6.8 is still an everage birth weight. However apgar scores of lovenox baby was 9/10, vs first of 7/10. My scarest days were the days I stopped all medication (I elected to be induced 2 days before delivery date) for 24 or 36 hours - I do not remember exactly. I had to check the movements every 10 minuts or so, and if not I was in panic. Good luck to you!


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## orangefoot (Oct 8, 2004)

My LMWH babe was the biggest of all 4 of them! She was 8lb 4oz.








Hi 5th Attempt ~ how are you?

isabchi Congratulations on you HBAC







:

And HoosierDiaperinMama ~ I'm glad to hear all is well with you! Please do come over and let us know when you little one is safely on the outside.







to you while you wait.

It is great to hear updates after all this time


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## HoosierDiaperinMama (Sep 23, 2003)

Quote:


Originally Posted by *5thAttempt* 
I used to be an active participant of this tread 3 years ago while being pregnant. My lovenox/heparin baby was a slightly smaller then non-medicated baby 10 years earlier: 7.11 vs 6.8. 6.8 is still an everage birth weight. However apgar scores of lovenox baby was 9/10, vs first of 7/10. My scarest days were the days I stopped all medication (I elected to be induced 2 days before delivery date) for 24 or 36 hours - I do not remember exactly. I had to check the movements every 10 minuts or so, and if not I was in panic. Good luck to you!

So your Lovenox baby was not early? My DD was 6.7 @ 36w6d and my DS was 7.15 full term. This little one was estimated at 4.8 @ 35w3d. I'm hopeful he'll reach 5 lbs.

Quote:


Originally Posted by *orangefoot*
And HoosierDiaperinMama ~ I'm glad to hear all is well with you! Please do come over and let us know when you little one is safely on the outside. to you while you wait.

Thank you!


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## AllyRae (Dec 10, 2003)

Oh HDM...I am so so so glad that your little one will be here soon! It will be the day after Ry's birthday, so your little one's birth will definitely be a bright ray of sunshine. I know how long you've waited for this!


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## 5thAttempt (Apr 22, 2006)

Quote:


Originally Posted by *orangefoot* 







Hi 5th Attempt ~ how are you?

I am fine. My baby is 2y 9m now. He is a little darling. I am trying to forget this whole lovenox experience, but unfortunatly I can not. This stupid US health insurance thing... Because of these shots I am unable to get any private insurance, so I am paying now arm and the leg for the state sponsored one - like $700 per month just for me, my family gets insurance for $300 a month - all 3 of them!. I am self employed and do not have company paid insurance... Last year was also bad since I manage to slip my disk and had lots of serious back issues. As for clotting issues - I never had any - it is just a test that indocates my potential problems. However, every time I fly over atlantic (couple times of year) I wear special socks and try to walk as much as possible (that coincides with my back issues - I have to limit the sitting time).

HoosierDiaperinMama, no my baby was not early. We scheduled induction 2 days before my due date and I was not in any kind of labor. I switched to hepatin from lovenox at 36 weeks just in case and I stopped herapin 1-2 days before induction. Labor was a picture-perfect one - no issues at all. My baby was also measured a little small, he ended up being bigger than predicted... My dr insisted that I should not take shots after delivery. I had a long chat about it since according to some articale I am a high risk. But everybody is different. Good luck to you. There is nothing that you can change right now, even if you baby is a little small. They do grow a lot during the last days/weeks. All decisions are made. Just enjoy the rest of your pregnancy!


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## HoosierDiaperinMama (Sep 23, 2003)

Just wanted to post a quick update and let everyone know that I have a little one who was safely delivered!!









Elijah was born on 9/8 @ 7:55 a.m, weighing in at 5 lbs. 6 oz. and 19 in. long. He was bigger than predicted and came out screaming. He didn't require any help (NICU) and we were home in 2 days. He nurses like a champ too.









If I was going to have anymore, I would probably do the same routine. Steroid shots for lungs @ 34-ish weeks. 35 weeks of Lovenox, 1 week of Heparin and close monitoring. This entire pregnancy was very different from my DD's which makes me happy and sad at the same time because my mind starts wondering about what I could have done differently and if it would have changed the outcome.

Anyway, just wanted to pop in and update and say thank you for the encouragement!


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## neverdoingitagain (Mar 30, 2005)

Quote:


Originally Posted by *HoosierDiaperinMama* 
Just wanted to post a quick update and let everyone know that I have a little one who was safely delivered!!









Elijah was born on 9/8 @ 7:55 a.m, weighing in at 5 lbs. 6 oz. and 19 in. long. He was bigger than predicted and came out screaming. He didn't require any help (NICU) and we were home in 2 days. He nurses like a champ too.









If I was going to have anymore, I would probably do the same routine. Steroid shots for lungs @ 34-ish weeks. 35 weeks of Lovenox, 1 week of Heparin and close monitoring. This entire pregnancy was very different from my DD's which makes me happy and sad at the same time because my mind starts wondering about what I could have done differently and if it would have changed the outcome.

Anyway, just wanted to pop in and update and say thank you for the encouragement!























Congratulations HoosierDiaperinMama!


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## orangefoot (Oct 8, 2004)

Quote:


Originally Posted by *HoosierDiaperinMama* 
Just wanted to post a quick update and let everyone know that I have a little one who was safely delivered!!











Oh Congratulations!







It is so good to hear again that this does work and that one more mama has a lovely Lovenox babe in her arms


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## mocan55 (Oct 11, 2009)

I recently have been researching what are some good vitamins and decided that New Chapter had a whole food vitamin that sounded good. Well come to find out it had a lot of green leafy foods in the vitamin. Well I'm scared to take that because I have a blood clotting disorder (factor v leiden). Now I don't know what to take. I know I need a lot more b vitamins(not sure how much or which ones), and I have to be careful with vitamin k(which is found in green leafy vegetables). I am trying to find a "whole food vitamin". I am glad that I found there is a whole group of ladies that have similar disorders(can't think of what else to call it!)....I don't currently take aspirin,vitamin b or folic acid. All I take is a cheap multi,vitamin c, fish oil with vitamin D, and a probiotic. Any thoughts would be greatly appreciated.


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## neverdoingitagain (Mar 30, 2005)

Hi, just replying really quick
If you aren't nursing or pregnant there are a few supplements worth looking at. Serrapeptase, being one. I usually have a ton on the top of my head.
If you would like to go the whole foods route, garlic and ginger are good additions to your diet. Especially raw. Cod liver oil, vitamin C, b-vitamins (get a multi) or liver...aw heck, a traditional foods diet would probably be the best way to go








a link to check out, might help
http://www.fvleiden.org/publications/midwife.html
bbl


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## orangefoot (Oct 8, 2004)

AFAIK the concern over vitamin K is more important if you are taking anti coagulants (coumadin) and even then not so much that you should avoid it, more that you should have a regular intake.

I don't think the concentrations in a multivitamin are such that they would cause you to clot.

Vitamin E is thought to act in a similar way to coumadin/warfarin and is contraindicated when taking coumadin because it increases its effect.

Fish oils and flax seed oil are also considered to make platelets a bit slippery and less likely to clot so these are also contraindicated if you are taking coumadin.

I know one person who had bad reactions to coumadin and stopped taking it to manage her clotting with Vitamin E and oils. You should talk to someone who knows about dosage and monitoring if you want to take that route though.

Do you have a haematologist? If you do, I would suggest that you discuss this with him or her to get their view.


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## TonyaW (Dec 5, 2006)

I haven't been tested to see if I have a clotting disorder yet. I have had two mc's in a row, one at 10.5 weeks the other at 4-5 weeks. The first miscarriage I had there was a huge blood clot involved. My current Ob/Gyn took a look at the pics we took of the miscarriage that I had at home of the baby, clot and placenta and said it looked like a placental abruption due to the very large clot and nearly black blood. However, he said since it was at 10.5 weeks that an abruption didn't quite make sense because that usually happens later on. So he said it could have been a clotting disorder. However, when I went to have an antiphospohlipid panel, it was over $4000 dollars. I didn't have the test done because I was self pay. My husband won't let me get this huge test. So my ob/gyn recommended another test, which I can't remember the name of and I have to call and find out how much it costs. I am really afraid because if it was and abruption or a clotting disorder and I don't have the testing, this could happen again and it it could much more serious later in pregnancy.

I decided I will try to get pregnant again, but do all the things I naturally can to decrease clotting. My ob/gyn did recommend a baby aspirin, however I am not comfortable with that unless I know for sure I hvae a clotting disorder. My first pregnancy was normal and healthy. So anyway, I read that garlic, vitamin E, extra folate, and fish oil are good. Do you all have any other recommendations of things I could do naturally? Would cod liver oil be fine in place of fish oil? I am wondering if something like chlorella would be good to take too.


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## orangefoot (Oct 8, 2004)

Hi Tonya

Your situation is exactly why I am so MAD that the US cannot make the leap to Universal Healthcare. You should be able to get the testing and treatment you need without having to worry about cost









There is no way that the true cost of a thrombophilia panel is $4000. Someone is creaming off big bucks there.

Unfortunately, problem free pregnancies are not a sign of there being no thrombophilia. I have had four pregnancies and no losses at all but I do have Protein S Deficiency and have had a DVT as well.

In an ideal world you need to know if you have any of the possible types of clotting disorders which could have caused your losses. Then you would be treated throughout pregnancy with LMWH to keep you and your little one safe.

In a less than ideal world all the things you describe are useful and low dose aspirin is no more of a medication than purposefully taking high doses of Vitamin E or additional folates so I wouldn't dismiss it.


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## TonyaW (Dec 5, 2006)

So I got my test results back. I had elevated Beta2 Glycoprotein I AB which is often found in patients with Phospholipid Antibody Syndrome (according to the lab results) and often seen with systemic lupus erythematosus (according to my own research). The lab screwed up my blood for the lupus anticoagulant, so I can't verify the lupus thing yet. Also, it always takes the doc about a week to get back to me for anything and so I haven't gotten to speak with him about this yet. I had to redo the whole APS panel yesterday because they screwed up the lupus anticoagulant and I was taking low dose aspirin, so now I wonder if that will affect the whole test. Anyway, there is a good chance that I will have to at least take low dose aspirin.

Also, I was positive for one copy of the C677T Mutation, heterozygous under the MTHFR test. However, my homocysteine came back great. So I don't know what that means exactly, if I need extra folate/B12/B6 or not.

Finally, my soluble tranferrin levels test said I was greater than the upper limit of refference range, which I don't know what the heck that means.

I can't wait to talk to my doctor. I don't know when the heck he will get back to me and what all is going to happen. I had to put off conceive for another cycle, even though I asked him to call me back to know what to do. I don't know if low dose aspirin is enough. I don't know if I have this lupus thing and if that means I have the real Lupus or if it is just some odd thing with clotting. I have to wait days to find out all this crap. I wanted to conceive right now and am fighting my desire for that and trying to wait to to find out what I need to do and try next cycle.

If anyone knows anything about all this, it surely would be appreciated!


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## orangefoot (Oct 8, 2004)

s mama

I have no idea what all of that means. You need a haematologist and a high risk OB to get a full picture I would think.

Putting off for one more cycle and getting the right plan could mean the difference between another loss and a healthy babe so fight your desires and hold on. I'll be thinking of you.


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## mothergoose518 (Feb 3, 2010)

Ok ladies, this is going to be mega long so you might want to grab a drink and something to munch on. I'll try to break it up so that you can follow it. I really need your input.

Ok... I will say that my family history has signifcant evidences of cardiac issues. No clots that I am aware of, but lots of heart attacks, and my uncle had a stroke in his 40s. Other than my mom losing a baby to an incompetant cervix I don't have a family history of pregnancy loss or pregnancy complications (although there is some possibility that my aunt had IUGR, but my Grandmother was such a bold faced liar it's hard to believe anything that came out of her mouth).

_In 1996 I had a very early miscarriage_

August 1998 I was induced at 35 weeks for IUGR complicated by oligohydramnios* - my induction took 3 days and in that time I developed PIH

March 2000 I delivered at 41 weeks - developed PIH at 35 weeks but was not induced, baby had signs of possible late onset IUGR and was STARVING - he did nothing but cry and nurse until my milk came in and then he was like a different child

_March 2003 after almost 3 years of TTC I miscarry twins at 9 and 10 weeks. Termed blighted but a later pregnancy makes me doubt that was what really happened. My prenatal care with this pregnancy was terrible.

June 2003 I had another very early miscarriage.

June 2005 I had yet another very early miscarriage.

March 2006 I was initially diagnosed with a blighted ovum but things weren't adding up so we canceled the d&c and followed the pregnancy by ultrasound. Slowly but surely in the next 5 weeks a yolk sac and fetal pole appeared in the sac before I finally miscarried 12 weeks into the pregnancy._

After this miscarriage I finally got someone to pay attention. My thrombo panel and karyotype came back perfect. I started taking extra folic acid and baby apsirin with my prenatal vitamin.

January 2008 I was induced at 38 weeks for PIH. Delivery and baby were perfect.

I got lax and stopped taking the extra folic acid and baby aspirin because I didn't think I would conceive on my own (last baby was a clomid baby). And then I got pregnant. But I still didn't take the baby aspirin and folic acid regularly because I was so nauseated and since I had been told my thrombo panel came back negative so I was just being treated on a whim.

_January 2010 I went in for my regular OB appointment at 17 weeks 3 days and they couldn't find a heartbeat. When he was born it seemed very evident that it was a cord accident, but my OB was not convinced. She wouldn't even consider it even though she hadn't been at the delivery and hadn't seen any reports or spoken to the delivering doctor. She refused to redo the thrombo panel or run any more tests._

Finally I got fed up and went to see my PCP yesterday. I truly believe he died of a cord accident, but we still need to see what the path report says and with my history it is definately possible I threw a clot into the placenta. My OB has been talking about possibly doing lovenox with my next pregnancy but was going to consult with a perinatologist first. I need to call and set up a telephone appointment to discuss the results of the tests from the hospital and hear the perinatologist's recommendation.

ANYWAY... my PCP ordered a TON of tests - 20 vials of blood for 24 tests! AND!!! She referred me for genetic testing.

One of the tests she ordered is for my homocystiene levels. We have Kaiser and my lab work is available for me to view online. I went back and looked at what was in my thrombo panel and that wasn't in there!!! There's nothing in there related to MTHFR either (I don't think? Unless that is found in the karyotype?).

I am so angry!!! If that placental report is bad and I have MTHFR I am going to be SO BEYOND PISSED!!! If that happens, as far as I am concerned she killed my son!

So, I have 2 questions for right now:

1) I am taking 1600 mcg of folic acid. Will this intefere with the results of the homocysteine test?

2) Is MTHFR found in/on the karyotype or is that a seperate blood test?

My pregnancy related autoimmune tests all came back fine. What are the chances of having all thrombo tests come back negative, but actually have something? This is what my OB has been assuming - that I have a thrombo not detectable on the lab work. But then, she never freaking tested me for MTHFR!!!

*Now, about ultrasound screening for IUGR at the end of pregnancy. I want to make sure you all understand why this is so important. IUGR does more than just make the baby small.

When a baby is not receiving sufficient nutrition from the placenta, it automatically shunts the nutrients to the essential parts of the body first, and as there is more to spread around it goes to the other parts of the body. The first thing to be sacrificed is physical growth, and this lets the doctors know there is a problem. These babies actually tend to mature a little faster than their peers because they are under stress.

Eventually as the baby becomes more compromised the kidneys will shut down. This is when the baby is in trouble. If baby is not peeing, baby is not making amniotic fluid. If baby does not have enough amniotic fluid, baby can't float. If baby can't float baby will likely roll over onto it's cord and suffocate itself.

Those frequent sonograms are not just to monitor the baby's size, but also (and more importantly) to measure the pockets of amniotic fluid to make sure baby is in a safe environment. If the levels drop they can do things to try to bring it up - IV fluids, hospital bed rest, and hydrotherapy will usually bring it up at least for a time. If the levels wont stay stable the baby needs to be born to prevent a cord accident.

Please please don't refuse or avoid sonograms for IUGR because you think they are unnecesary. If my daughter hadn't been monitored by sonogram she would not be here today.


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## hmseyer21 (Jan 31, 2008)

I am pretty sure when I was diagnosed with mthfr it wasn't a specific test. I had a son with birth defects and a miscarriage so my OB decided to run tests to see if something showed and I had the MTHFR mutation, compound heterozygous. She only mentioned testing for clotting disorders but wasn't super familiar with mthfr, so I'm thinking it may be part of the karyotype? I know that isn't a definite answer for you, and I could be wrong but that is what I remember about my test. So sorry about you losses, it is so hard to endure one, I can't imagine what you've been through. Good luck and I hope you find answers.


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## LisaG (Feb 23, 2003)

Quote:


Originally Posted by *mothergoose518* 
So, I have 2 questions for right now:

1) I am taking 1600 mcg of folic acid. Will this intefere with the results of the homocysteine test?

2) Is MTHFR found in/on the karyotype or is that a seperate blood test?

First of all, I am so incredibly sorry for your losses.








And the frustration over not knowing why.

That's a good question re: the folic acid interfering with the results of the homocysteine test. It would make sense to me that it does (at least in the case of MTHFR) although I don't know for sure. It is my understanding though that if your homocysteine is normal then your likelihood of blood clots is reduced/normal.

When I was tested for MTHFR it was part of the thrombophilia panel not the genetic karyotyping that we had done as part of our infertility workup. The genetic karyotyping took much longer to get the results for. Although the MTHFR results will tell you what specific gene you are carrying for it (because there are 2 and it can be homozygous or heterozygous).

I do know that my doc had me taking baby aspirin even though my homocysteine levels were normal. He said there was some study done that showed that baby aspirin helped reduce recurrent m/c even though they couldn't explain why. Sorry I don't have anything more specific.

Best of luck to you


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## baby-makes-3 (May 13, 2006)

Hello, I just found this thread and wanted to ask a few questions --

After my third m/c, I had some bw and came back as ANA positive as well as anticardiolipin antibodies. I then was sent to a Rh who did full panel bloodwork. I came back with moderately elevated anticardiolipin antibodies and nothing else. He said this does not classify me as having "full-blown antiphosphosipid syndrome". He said my numbers were not anything he would necessarily medicate with lovenox in any subsequent pregnancy, but that the final decision would rest with the OB.

The OB said that based on the fact that I simply show up pos for anticardiolipin antibodies, he would treat with lovenox beginning at 6 weeks for any subsequent pregnancy. He also scared me with the info that having these antibiodies puts you at higher risk for pretty much everything, including 2nd trimester loss and stillborn.

Fastforward 6 months and I went for f/u bw and found that I was no longer ANA positive and my antibodies were down 30%. That was about 6 months ago and I haven't had them rechecked.

Now my question is -- if I was moderately high at first and now am down 30%, does that decrease my risk? Or is a positive a positive with quantifying the numbers irrelevant? And does the fact that I have only one antibody show up(anticardiolipin) also lessen my risks for the above? I know lovenox helps the risk, but does not diminish it.

Any further insight would be appreciated. Thanks


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## TonyaW (Dec 5, 2006)

I cannot answer your question specifically, but I can tell you what I do know. Anticardiolipin antibodies are usually indicative of Antiphospholipid Syndrome. If you are positive for the ACA antibodies more than 12 weeks apart, then you supposedly do need treatment at least during pregnancy. Since you were ANA positive and APS positive, that indicates that you would have a higher chance of blood clotting during pregnancy. Since you are ANA negative now but still APS positive, I think pregnancy increases your risk and everything changes once you are pregnant even if your ACA's decreased. So even if you are lower risk now, that doesn't mean that won't change during pregnancy. However, from what my OB told me and from what I have read, the treatment with low dose aspirin and low molecular weight heparin significantly increases the chances of a positive pregnancy outcome. My doc said he has seen a 90% success rate in his practice. So with regular monitoring, that is really good!


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## baby-makes-3 (May 13, 2006)

Thanks so much for the insight. I guess the factor I didn't realize was that everything does change with pregnancy (re: blood "quality").

Heavy decisions







. Thanks!


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## soglad (Dec 31, 2006)

Hello,

I just found out about this thread and I'm very grateful to know that I can look to the Mothering community as a resource on this topic!

It's very early in my second pregnancy (~4.5 weeks) but I am already anxious about blood thinners. My DD, who is almost 4 1/2, was born at 35 weeks - I had to have an emergency c-section due to a placental abruption, which I later learned was caused by a clot. Thankfully, she was small but healthy and only spent six days in the NICU! About six months after she was born, my OB recommended blood work to try to determine the cause of the abruption; this revealed that I have a prothrombin mutation. I then saw a high-risk OB and learned that I would most likely have to be on an injectable blood thinner for any future pregnancies from six weeks until 12 weeks post-partum. This was four years ago...

Thankfully, I've never had a m/c, but then again this is only the second time I've ever been pregnant! Reading this thread has made me very concerned about the elevated risk of m/c, something I didn't know about during my first pregnancy since my blood clotting condition hadn't yet been diagnosed.

I have an appt with the same high-risk OB on 4/28, at which point I will be ~6.5 weeks. I imagine he will start me on Lovenox at that point. But I'm wondering whether there's anything that I should be doing in the meantime? I've been taking an 81 mg aspirin each day since my condition was diagnosed, and I've been taking a prenatal vitamin for the past six months. I'm just wondering if there's anything else I can do...any advice would be GREATLY appreciated!

Thank you!


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## sadkitty (Jun 24, 2004)

I know this is an old thread, but I have some questions. I was told today by my midwife, that the high-risk ob that was around when my son was stillborn finally called her back about the autopsy report. (it's been 11 weeks!)

He suspected thrombophilia, as my son had an enlarged heart, but smaller kidneys and liver. He was only 4.5 pounds at 39.5 weeks, but was 21 inches long. He died at exactly 38 weeks (last time I felt him move) we found out at 38 weeks 4 days, but I tried desperately to go into labor at home for over a week.

Thing is; I had fairly severe late-postpartum hemorrhaging at 8 weeks pp. So I can't figure out how I could have a clotting disorder, take nothing for it and yet almost bleed to death 8 weeks later. What if I had been taking blood thinners!? I'm not sure how these things work. But, as I do more research it doesn't add up.

I could call the guy, who was not really involved until after the death, but considering he took 3 weeks to call my midwife back, I doubt he will respond in a timely manner.


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## orangefoot (Oct 8, 2004)

Quote:


Originally Posted by *soglad* 
I have an appt with the same high-risk OB on 4/28, at which point I will be ~6.5 weeks. I imagine he will start me on Lovenox at that point. But I'm wondering whether there's anything that I should be doing in the meantime? I've been taking an 81 mg aspirin each day since my condition was diagnosed, and I've been taking a prenatal vitamin for the past six months. I'm just wondering if there's anything else I can do...any advice would be GREATLY appreciated!

Thank you!

I think you are doing the only things that you can right now. 5-6 weeks is a usual time to start injecting so don't panic. I hope you are feeling wel otherwise - not too nauseous. Come back and ask about injecting as we have some great collective wisdom on doing that almost painlessly!


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## orangefoot (Oct 8, 2004)

Sad Kitty,

I am so sorry for your loss and also that it has taken you so long to get an answer that you aren't really happy with. I don't know why medical folk don't get that there is some urgency about finding the reasons for a stillbirth.

Can you get a referral to a hematologist based on the suppositions of the OB? That way you can request a full clotting panel be done and find out if you do have a thrombophilia or not.

If you do then a care plan for any future pregnancy will take this into account and you will be more likely to end up with a live babe in your arms.


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## orangefoot (Oct 8, 2004)

Sad Kitty,

I am so sorry for your loss and also that it has taken you so long to get an answer that you aren't really happy with. I don't know why medical folk don't get that there is some urgency about finding the reasons for a stillbirth.

Can you get a referral to a haematologist based on the suppositions of the OB? That way you can request a full clotting panel be done and find out if you do have any type of thrombophilia or not.

If you do then a care plan for any future pregnancy will take this into account and you will be more likely to have a clot free pregnancy.


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## soglad (Dec 31, 2006)

OrangeKitty, thanks for your response - I really appreciate it! I'm very anxious about injections so I'll be sure to check back here after my appt


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## Xenarthra (Jul 29, 2007)

Hi Ladies,
I am 5 wks preggers with my 3rd, woohoo! And I have protein-S deficiency and take Lovenox throughout pregnancy. My question is this: when do I need to start the injections? I can't remember when I did with the other 2, and of course I would love to hold off as long as possible









Thanks!


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## orangefoot (Oct 8, 2004)

Hi Xenarthra

Congratulations!

I have PSD too and started injecting at about 5-6 weeks. I can't remember exactly but I do remember that I had to bring my high risk pre-pregnancy appointment forward


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## scarletjane (Feb 4, 2009)

.


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## soglad (Dec 31, 2006)

Ugh, just need to vent - I went to have my first prescription filled yesterday - the dr had prescribed Lovenox, but when the pharmacy told me that my CO-PAY would be $1400/month, I called my dr back and asked for Heparin instead. Turns out my insurance wouldn't cover any of the cost of Heparin, so it was $230 for a month's supply. They didn't have it in stock so I am supposed to pick it up this afternoon.

My dr's office spent this morning on the phone w/my insurance, trying to figure out why they won't cover the Heparin at all...they haven't resolved the issue but assured me that they will keep working on it.

I was really glad that Lovenox syringes came pre-filled, but of course now that I'm going to be on Heparin instead I have to fill the syringes myself. When I was at the dr yesterday, a nurse showed me how to inject (using Lovenox), but she didn't show me how to fill a syringe since we didn't think I'd need to know how to do that!!!

I am feeling VERY nervous about filling the syringes, so any advice would be greatly appreciated!

Thank you!!


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## soglad (Dec 31, 2006)

Update - the pharmacist showed me how to fill the syringe so I guess I was panicked about nothing! I haven't had the nerve to inject myself yet, though, so DH has been doing it. Now I am going to read through this thread for advice on injections...


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## orangefoot (Oct 8, 2004)

I'm glad you feel more confident about that now and I think injecting yourself is better than someone else doing it once you get used to it! You just need to bite the bullet and remember each one you do is one less to get done.

Here are my tips:

Lie down and bend your knees so your feet are flat against your comfortable bed.

Make sure the bubble is at the plunger end of the syringe not near the
needle end. Hold the syringe like a pencil with your thumb and middle
finger with your first finger on the plunger. The bevelled edge of the
needle should be face up.

Pinch a good inch of skin somewhere low on your belly - you'll lose sight of this part of your belly after a while so its good to use it while you can.

At this point you might want to remind yourself to take a few breaths and relax.

Poke your skin a bit with the needle. If it hurts a lot poke another place
until you find a bit that doesn't feel too stingy. There are some
places where the nerves seem to be more 'alert' than others - honestly.

Once you have found a good place tilt the needle to a 45 degree angle and
push the needle in pointy edge first as far as it will go. Now hold very still and press the plunger with your first finger as slowly as you can. Once you have pushed in all the liquid and you have only bubble left pull the needle
out and let go of your skin. And keep remembering to breathe!

Fingers crossed for you

Rachel


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## aisling78 (Sep 13, 2009)

Hi everyone, my name is Crystal, and I was diagnosed with Factor V Leiden in 2006. I've never had a clot, myself, but was tested after my sister discovered she carried the gene. She had a stillbirth and then a pulmonary embolism within a three week period. The rest of my family were tested, and we discovered that my mother, brother, grandmother, and almost all of my mother's siblings also carry a copy of this gene.

When I was pregnant with my son I was put on blood thinners as a precaution. Now I'm pregnant again, and my OB's office wants me back on them. They want to prescribe Arixtra (generic name is Fondaparinux) and said that it's a better fit for my particular clotting disorder. But this confuses me, because all of the research I've read, and everything I've heard from other women who have FVL, is to go on Lovenox. Has anyone else here been put on Arixtra?

My main question is, is this safe while breastfeeding? My 2 1/2 year old still nurses several times a day. When he first wakes up, before & after nap, and before bed...and whenever he's sad/hurt/frightened/tired/overwhelmed/overstimulated/bored during the day. Right now my OB's office, my son's pediatrician's office, and my La Leche League leader are all searching for information on if this is safe or not. I know that immediately after my son was born they just kept me on heparin and I was nursing him then...but I don't know if arixtra -- or lovenox -- are OK while breastfeeding a toddler. I don't want to wean him cold turkey, so I'm feeling really overwhelmed and uncertain right now. Anyone have any advice or info?


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## GooeyRN (Apr 24, 2006)

Lovenox is safe to nurse with. The molecules are too large to get into the milk.


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## aisling78 (Sep 13, 2009)

Thank you so much for your responses! I just called my son's pediatrician's office back, and the nurse found some information on lovenox that she's printing out for me. So then I called the OB's office, and told them what I found on Dr. Hale's website, as well as what the pedi nurse found. I have to bring that info to my OB's office, and then they'll prescribe the lovenox for me. What a day.

I have to say...after digging around and doing the research and being an active participant in my medical care, I'm feeling so much more capable and in control. I hated that feeling of helplessness that I had all through my last pregnancy, so I feel like I'm already off to a much more positive start!

Thank you again for your answers, you've set my mind at ease!


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## orangefoot (Oct 8, 2004)

I am unsure as to why you would choose lovenox over fondaparinux? New is good as far as anti-coagulants go! Fondaparinux is a pentasaccharide which has been proven to be more effective in VTE prevention than Lovenox with just one daily injection.

From what I have read, it is active more quickly and acts more effectively. It is one of the new Anti factor Xa antagonists and this is where all the research into anticoagulants has been focused in the last 10 years since the initial wave of LMWHs were designed.

Fondaparinux is synthetic and not made in porcine mucosa like Lovenox or Fragmin or Clexane. Women who are religiously prohibited from eating pork have been prescribed Fondaparinux in pregnancy for some time now.

The only reason my haematologist started me on long term coumadin is because he is sure that an oral Anti Factor Xa is on the horizon in the next year or so to replace it and it will be much much safer for me to take than coumadin as the Xa meds produce very low incidence of bleeding and need no monitoring.

On the breastfeeding front, if you google the combo of coumadin, lovenox, Fragmin or any other LMWH or anti-coagulant and breastfeeding you will find 'research' and 'advice' telling you they aren't safe either. I'd speak to a heamatologist about the molecule size of the fondaparinux and compare that to the Lovenox before ruling it out.


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## aisling78 (Sep 13, 2009)

Quote:


Originally Posted by *orangefoot* 
I am unsure as to why you would choose lovenox over fondaparinux? New is good as far as anti-coagulants go!

I'm sure there's no denying that. As far as my OB is concerned, with the information available to him, if I was to be prescribed fondaparinux, I'd have to wean my son. Cold turkey. I can't and won't do that to him. Not when it's been such a source of comfort and security for him for the past 2 1/2 years. Yes, I do want him to wean during the course of this pregnancy, but I don't want to force an abrupt weaning..that seems incredibly cruel. So the options, as they were given to me, were to wean and go on fondaparinux, to take nothing but a baby aspirin, or to go back on lovenox.

I've never had a clot. Never experienced a pregnancy loss or had any other complications due to FVL. At this point, I'm on the blood thinners as a precaution, and one that very well nay be unnecessary -- there's no way of knowing. If I had a personal history of clotting or pregnancy losses they'd be treating me differently, I'm sure.

Quote:


Originally Posted by *orangefoot* 
On the breastfeeding front, if you google the combo of coumadin, lovenox, Fragmin or any other LMWH or anti-coagulant and breastfeeding you will find 'research' and 'advice' telling you they aren't safe either. I'd speak to a heamatologist about the molecule size of the fondaparinux and compare that to the Lovenox before ruling it out.

I do have an appointment with my hematologist, but not for another three weeks. He's on vacation this week, I'm away on vacation with my family next week, and he was booked both last week and the week after my vacation. I can talk with him about lovenox vs. fondaparinux at that appt, and he may recommend switching me over then. Or maybe they'll switch me over when my son (hopefully!) weans in the coming months. But with such a long delay until my appointment, neither my OB nor I were comfortable with me waiting that long before starting on any particular blood thinner.

I know research and advice on the safety of any medication while breastfeeding can vary. Drug companies and many doctors tend to err on the side of being extremely (overly?) cautious in regards to this. Both my LLL leader and son's pediatrician's office found their info in the latest edition of Dr. Thomas Hale's "Medications and Mother's Milk," so I'm pretty comfortable with the decision to start on lovenox at this point in time.


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## orangefoot (Oct 8, 2004)

Sorry, I wasn't saying that Lovenox was a bad thing, at all! Just that Fondaparinux is worth considering with a hemo not an OB. OBs are not experts in blood clotting despite what they might like to think!

You would not believe how many OBs still tell patients that they can't breastfeed on Lovenox or coumadin. I've been reading clotting forums and threads since the start of the millennium and I had hoped that by the time we got to this decade docs would have stopped giving such poor breastfeeding advice...maybe by 2020.

I have Protein S Deficiency and have been lucky to have four children but I have also had a DVT and been on and off Fragmin and coumadin since my second pregnancy in 1997. The fact that you are being treated at all is a sign of the times as 5 years ago they wouldn't have thought it was worth it.

Good luck!


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## aisling78 (Sep 13, 2009)

Quote:


Originally Posted by *orangefoot* 
Sorry, I wasn't saying that Lovenox was a bad thing, at all! Just that Fondaparinux is worth considering with a hemo not an OB. OBs are not experts in blood clotting despite what they might like to think!

You would not believe how many OBs still tell patients that they can't breastfeed on Lovenox or coumadin. I've been reading clotting forums and threads since the start of the millennium and I had hoped that by the time we got to this decade docs would have stopped giving such poor breastfeeding advice...maybe by 2020.

I have Protein S Deficiency and have been lucky to have four children but I have also had a DVT and been on and off Fragmin and coumadin since my second pregnancy in 1997. The fact that you are being treated at all is a sign of the times as 5 years ago they wouldn't have thought it was worth it.

Good luck!

Thanks, I understand completely. I'm looking forward to meeting with the hematologist and sorting this all out with him. It's amazing -- and discouraging -- just how little many doctors actually understand about breastfeeding, even now. I think their gut reaction is often to recommend that a nursing mother wean when beginning new medications. My former primary care physician tried to prescribe me an antibiotic for a respiratory infection when my son was only 8 or 9 months old, and told me I'd have to stop nursing. I'm just grateful that I asked her for alternatives, and wouldn't let it go until she looked up a safe antibiotic in Hale's book. I wonder how many mom's weaned their babies unnecessarily, due to her advice.

Thank you for all that you wrote -- I'm planning on talking with my hemo about the pros & cons of taking either Lovenox or Fondaparinux, and you've gave me quite a few talking points! I appreciate your help!


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## Rainy229 (Apr 4, 2010)

Hi all... Not sure if this is the right place to post this, so feel free to move it if I'm wrong. I'm looking to see if anyone has experience with Alpha Hemophilia (factor VIII deficiency) - specifically having a son with hemophilia. I may be a carrier (my mom is an obligate carrier), and am not sure if I want to be tested or not (as even if I am a carrier, I am not affected). My questions for anyone who has had a son with hemophilia are: Where/how did you birth (e.g. home/birth center/hospital, vaginal or CS, and if CS, was it due to hemophilia or other factors?), were you considered 'high risk,' did you find many people during your pregnancy and birth that were knowledgeable about hemophilia and birth (midwife/hospital staff/OB/etc.), if you had it to do-over again, what would you have changed (e.g. would have chose to deliver elsewhere/vaginally/via CS, etc.), and any other tidbits that you'd think would be helpful!

Thanks!

--Rainy


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## A&A (Apr 5, 2004)

Quote:


Originally Posted by *aisling78* 
I'm sure there's no denying that. As far as my OB is concerned, with the information available to him, if I was to be prescribed fondaparinux, I'd have to wean my son. Cold turkey. I can't and won't do that to him. Not when it's been such a source of comfort and security for him for the past 2 1/2 years. Yes, I do want him to wean during the course of this pregnancy, but I don't want to force an abrupt weaning..that seems incredibly cruel. So the options, as they were given to me, were to wean and go on fondaparinux, to take nothing but a baby aspirin, or to go back on lovenox.

I've never had a clot. Never experienced a pregnancy loss or had any other complications due to FVL. At this point, I'm on the blood thinners as a precaution, and one that very well nay be unnecessary -- there's no way of knowing. If I had a personal history of clotting or pregnancy losses they'd be treating me differently, I'm sure.

I do have an appointment with my hematologist, but not for another three weeks. He's on vacation this week, I'm away on vacation with my family next week, and he was booked both last week and the week after my vacation. I can talk with him about lovenox vs. fondaparinux at that appt, and he may recommend switching me over then. Or maybe they'll switch me over when my son (hopefully!) weans in the coming months. But with such a long delay until my appointment, neither my OB nor I were comfortable with me waiting that long before starting on any particular blood thinner.

I know research and advice on the safety of any medication while breastfeeding can vary. Drug companies and many doctors tend to err on the side of being extremely (overly?) cautious in regards to this. Both my LLL leader and son's pediatrician's office found their info in the latest edition of Dr. Thomas Hale's "Medications and Mother's Milk," so I'm pretty comfortable with the decision to start on lovenox at this point in time.


FVL has incomplete dominance, which means that it may, or may not, ever cause a blood clot.

I found out about my FVL (and Factor II, as well) AFTER the completely healthy birth of my second child. My OB said, "Wow, if I had known, we would have treated your pregnancy completely differently," which made me really glad she (and I) didn't know!

My younger sister, who also has FVL and Factor II, decided to just take blood-thinners during the 6-week postpartum period and not during her whole pregnancy.


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## orangefoot (Oct 8, 2004)

Rainy

I have a very dear friend who is a haemophiliac and is now just over 40 years old. He isn't in the best of health after receiving contaminated blood products and having damaging bleeds but he is a lovely bloke and has four children - two boys and two girls. Things are much better for young haemophiliacs now than they were when he was a child and there are lots of support groups for families too.

He has two older brothers who are unaffected and it was a shock to his mum when she found that she was a carrier when he was a young child.

Have a look here


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## Rainy229 (Apr 4, 2010)

Orangefoot, Thanks for the quick reply! I'm TingTC after literally years of research on current hemophilia treatment... I knew from the start that if I ever became pregnant, I would not choose to terminate or selectively reduce any pregnancy, which means that if I happen to have inherited my mom's gene for hemophilia, and happen to give it to my son, that I am (for lack of a better word) okay with that prospect. I wouldn't wish a chronic, life threatening disease on anyone, but when you add up treatment and quality of life, if it were me, I'd at least want a chance. (All - Please realize that I am speaking for myself only, and I am not in any way suggesting that what's right for me and my family should be right for you or yours, or vice versa!)

I'm really hoping to find out if anyone knew, as I do, ahead of time that their son might have hemophilia (or she might be a carrier), what choices they made with their son's birth. I've read studies that say a CS is required for safety, and others that say that a vaginal delivery is best. I really want to be prepared for this discussion, armed with as much as possible for the best outcome...

Thanks!

Rainy


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## Bebegim (Jan 9, 2010)

Hi Everyone!

I have a question, I hope there is someone out there who might know a little bit about this. My OB requested a special panel on my blood because my sister, when she was just 19, had a blood clot. At the time she was a drug user, smoked 2 packs a day, was overweight, was eating almost nothing but ice cream and was on the NuvaRing for month prior to the clot. I have none of those risk factors at all. But my OB insisted I may have "sticky" blood.

I had the screenings and the results showed I may have the opposite issue! That my blood doesnt clot enough! What are the chances of that?! Anyways, Im worried that I will not get to have a VBAC now, because no one will want me as a patient when I have an increased risk of bleeding as it is due to my c-section 3 years ago









Here are my results:
D-Dimer, QN was High with .54 mcg/mL FEU (reference range <.50mcg/mL)
Protein S Activity was Low with 45% normal (reference range 70-150% normal)

The results also showed my red blood cell count was low (3.52 million/uL), my hemoglobin was low (11.4 d/dL) and my hematocrit was low (33.4%).

If any of you ladies have had smiliar results, I would greatly appreciate any information you can give. Especially pertaining to labor and delivery.

I have never had a M/C that I am aware of. And I already have one healthy term baby who is now 3 years old.

Thanks in advance for any help!!!


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## gunnarsmama77 (Mar 7, 2007)

Hi Rainy, I was actually just on here for the same thing! I am a Factor VIII Severe Carrier of Hemophilia, we found out after my son was born in 2005.
Where/how did you birth (e.g. home/birth center/hospital, vaginal or CS, and if CS, was it due to hemophilia or other factors?), Since my son was a surprise (in terms of hemophilia) he was a normal, medical-model childbirth (pitocin, epidural, vaccuum extraction) After birth he continued to bleed from the vaccuum, and that's one of the ways we found out. This time around (due Aug. 23) I will give birth at a birthing center within a hospital, will not have an epidural, and vaccuums, fetal scalp monitoriang, and forceps are contraindicated. They do not recommend routine C-sections. I printed off the MASAC recommendations from NHF http://www.hemophilia.org/NHFWeb/Mai...contentid=1436 and put them in my chart and discussed them with all of the OBs. were you considered 'high risk,' did you find many people during your pregnancy and birth that were knowledgeable about hemophilia and birth (midwife/hospital staff/OB/etc.), I was not considered high risk, and neither is the son I'm surrently pregnant with (unknown hemophilia status, as I did not feel like doing an amnio or CVS). I have not found many people to be exceptionally knowledgeable about hemophilia--I feel like I have to give a five minute educational spiel (luckily I'm a teacher







). My OB only has experience with thrombophilia, a completely different animal, but he always talks to me and listens to my concerns and has interfaced with my son's hematologist to doublecheck everything. I feel good about the coming birth. The birth center I'm going to has a prenatal check with a nurse, and we talked for a while and she made notes all over my chart in case she's not the one I have when I deliver. if you had it to do-over again, what would you have changed (e.g. would have chose to deliver elsewhere/vaginally/via CS, etc.), and any other tidbits that you'd think would be helpful!
In your situation, I might get tested just so you would know whether there's a possibility or not (and since carrier testing is easier than in-vitro testing), since if you're not a carrier you wouldn't need to worry about it, KWIM? That may include genetic testing of your mom first, though, which can take quite a while if you don't have the "normal" mutation. We're definitely immersed in this right now, so ask away if you have any questions.
Quality of life-wise, I would say my son doesn't even realize he's any different from anyone else. He is severe (undetectable clotting factor VIII) but presents as a mild/moderate (requires treatment 6 or 7 times a year). We've been told he won't be able to play hockey, football, wrestling or boxing, but that other sports are fair game depending on how he tolerates it.
I am not really worried about pregnancy/birth, as most hemophiliacs have no problems with a normal pregnancy and uncomplicated vaginal birth. (And my first son was 9 lbs, 1 oz, so I wouldn't even opt for a c-section for thinking he was big, either. If you did have a traumatic birth, though, they may want to ultrasound the baby's head to check for an intercranial hemorrhage) I think the most important thing is to find an OB who is comfortable with the possibility, and who listens to you, since you'll probably be more knowledgeable than most medical personnel.


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## gunnarsmama77 (Mar 7, 2007)

Also, on the possible Factor VIII carrier status, you could be a symptomatic carrier. The test is fairly simple, a Factor VIII assay, though you'll probably have to go to a lab or the hospital, and will let you know where you fall. Normal is 50-150, mine is 52







, though we didn't know that before my son's birth. Apparently symptomatic carriers are more at risk for bleeding into the spinal column with an epidural--the cutoff for safety's sake is 50. So I would want to know that going in as well (in case you need an emergency c-section or something). Your factor levels do go up in pregnancy, though, so levels pre-pregnancy will change and they'd probably want to run the test again in the third trimester. Just something else to think about. HTH.


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## orangefoot (Oct 8, 2004)

Bebegim

Have you seen a haematologist to explain the results to you? Are you pregnant right now? Did your OB tell you that you are at risk of bleeding?

Low Protein S is called Protein S Deficiency and does predispose you to clotting problems. I have PSD and have had a DVT. You can only get a true Protein S result when you aren't pregnant because Protein S is naturally lower in pregnancy which is thought to be an ancient protection against excessive blood loss post partum.

Testing D Dimer is only usually done if you have symptoms of a clot right now as this is the chemical that a clot gives off when it is growing and is easily detected. I'm not sure what it tells you if you don't have any symptoms.

Low red blood cell count, low hemaglobin and low hematocrit can be signs of anaemia (lack of iron), inflammation or lack of minerals and vitamins.

To find out more about Protein S Deficiency have a look here I'm orangefoot on the forum over there too.


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## teeg1973 (Oct 15, 2008)

Hi Ladies,
I hope you don't mind my joining in! I am currently 16 weeks pregnant and on Innohep (a low molecular weight heparin, similar to Lovenox)and have been since I got my BFP. I have had four missed mc's and one DD (one m/c prior to DD, 3 after) prior to this current pregnancy. We finally did testing and found that I am homozygous for MTHFR, have the PAI 1 4G/5G gene, Protein S deficiency and antithrombin III! We think these were likely the cause of the prior miscarriages.

Hoping that this pregnancy continues to progress normally. Can't say I love the injections, but they aren't too bad. Still waiting to figure out what my caregivers opinion will be regarding repeat C/S versus VBAC (I am living in Germany, so I honestly don't even have a clue what their stance is!).

Thanks,
Tracy


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## Bebegim (Jan 9, 2010)

Quote:


Originally Posted by *orangefoot* 
Bebegim

Have you seen a haematologist to explain the results to you? Are you pregnant right now? Did your OB tell you that you are at risk of bleeding?

Low Protein S is called Protein S Deficiency and does predispose you to clotting problems. I have PSD and have had a DVT. You can only get a true Protein S result when you aren't pregnant because Protein S is naturally lower in pregnancy which is thought to be an ancient protection against excessive blood loss post partum.

Testing D Dimer is only usually done if you have symptoms of a clot right now as this is the chemical that a clot gives off when it is growing and is easily detected. I'm not sure what it tells you if you don't have any symptoms.

Low red blood cell count, low hemaglobin and low hematocrit can be signs of anaemia (lack of iron), inflammation or lack of minerals and vitamins.

To find out more about Protein S Deficiency have a look here I'm orangefoot on the forum over there too.

Thanks you so much! My MW ordered a very random collection of tests because she really had no idea what she was doing... in fact the computer wasnt working, so her and the assistant were absolutely dumbfounded as to which tests to order me. Im 21 weeks pregnant now. Apparently both tests can be elevated during pregnancy (at least thats what it says on the lab quest results). The reason they ordered it was because my sister had a DVT in her leg at the age of 19. It cleared up after a few months of blood thinners and a long hospital stay.

My MW and the OB, neither could explain anything about the results to me at all. The actually told me the results meant the opposite, that I was at risk for excessive bleeding. I just feel like, how could they possibly get that wrong? They clearly put in no effort at all to figuring out even the minimal amount of information for me.







and now they want me to go to a different OB at Johns Hopkins. The whole thing is irritating me. I told her I wanted the results to take to my sisters hematologist, and you know, I got the ..."oooh, uh, well a hematologist isnt what you need to see, because this could complicate your pregnancy and delivery." Oh brother!

Needless to say. I will be calling my sister's Dr. tomorrow morning to have him read the results. I anticipate him thinking they are crazy for ordering such a random collection of tests. I will also be switching MW's asap! They were also super rude to me about the whole thing. Like I was being incompetent in some way. As if I needed another reason to loathe the medical establishment!

Thanks again for posting back.







It was a huge help!!


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## Rainy229 (Apr 4, 2010)

Gunnarsmama77 - THANK YOU for your comprehensive reply! I REALLY appreciate it!!! It's nice to hear that pre/peri/postnatal practitioners may be more willing to listen than the previous providers I've discussed hemophilia with (renew rx for birth control several years ago - the doc wanted FOURTEEN blood tests before she was going to write the rx because "if you just keep bleeding, that could be bad." Really?! continual menstural bleeding is bad? I'm sure I never would have figured that out, even if I didn't know anything about hemophilia!







) I'll certainly follow your lead on taking published studies with me to any and all practitioners when (and if







) I am pregnant. On a side note, I'm not sure if I will ever test - I can't imagine anything changing in my plans - I wouldn't alter plans for pregnancy, natural birth, avoidance of medications/vaccinations for a while, etc. - and if I do have a boy and he's affected, that answers the question - I must be a carrier... if he's not, it's still up in the air.

Thanks again!

--Rainy


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## gunnarsmama77 (Mar 7, 2007)

Glad I could help! PM me if you need anything!


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## primipara (Dec 11, 2010)

Hi ladies! I am hoping to get some advice on a homebirth plan for those on blood thinners.

I am 9.5 weeks pregnant after 1 round of IVF, 2 FETs and 2 years total TTC. Naturally through infertility I had every test under the sun and they turned up a slightly elevated level of lipoprotein (a). As a result I was put on daily Lovenox shots from the first day of the transfer. Now I have interviewed 5 homebirth midwives (out of 16 in my area) and the 2 that I liked the best, who seemed the most educated and responsible, were both very cautious to negative about doing a homebirth while I'm on Lovenox.

They both referred me to a homebirth friendly perinatologist for a second opinion. I am hoping that he says I don't need to be on it, but short of that, do you have any ideas for a homebirth plan that would reduce the potential risks, or about what to say to the midwives to convince them to work with me? I am happy to consult with an outside doctor and to have a backup plan, but at least trying for a homebirth is very important to me.


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## sarahtar (Mar 19, 2004)

Do you need to be on the Lovenox until you deliver? The MFM we consulted with during my last PG had floated the idea of blood thinners with me, then ultimately decided they wouldn't provide enough benefit (for me) to outweigh the risks, but while we were still deciding, I had asked about homebirth implications. Every midwife will be different, of course, but my midwife had made it clear that as long as I had been OFF blood thinners for 3 (I think it was 3) weeks prior to delivery, she was fine with that, and the MFM said that she wouldn't want me on blood thinners at that point, anyway.

So assuming that they would stop the thinners as you approach delivery, that helps to change the conversation with the MWs you talk to. Maybe they would feel more comfortable if you offered to have a blood draw to show that your blood counts were all normal before delivery?

I mean, I wouldn't want to do a homebirth while on blood thinners - hemorrhage is scary and pretty hard to successfully treat at home by a midwife.


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## primipara (Dec 11, 2010)

Thanks, that is really helpful. Stopping the Lovenox early seems like a good solution.


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## wennerk (Aug 3, 2009)

Hi primpara,

I don't know how Lovenox compares to Heparin, but I was on Heparin (for Factor V Leiden) all through my pregnancy and managed to do a successful homebirth while on it. The doses are spaced 12 hours apart, so I was told by a perinatologist that as long as I didn't take a shot close to when I went into labor or until 12 hours after birth, I would be fine. It ended up that I took my morning shot, went into labor in the late afternoon, and then didn't get my shot again until about 1pm the next day. The midwife that attended my birth had never dealt with a woman on blood thinners before. When I first interviewed her, she did some research on the subject and concluded that as long as DH and I felt comfortable managing the Heparin, she would leave it up to us. That's just my two cents...


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## airmide_m (May 8, 2006)

After over 5 years and many different infertility treatments while TTC #1, I'm doing some intensive research into implantation failure due to auto immune issues and clotting factors.

I was able to get a few tests, but mostly they're saying I need to have 3+ miscarriages to justify testing. But if they can't implant, I can't get to the point of a miscarriage (not that I'd ever want that either of course!).

I did find three things elevated and I'm wondering if those may be cause for any concern, or justification for treatment with lovonox? Fibrinogen 427 (range 150-400 mg/dl) and under Coag Study, Von Willebrand, Von Will Ag 162 (range 49-153%) and F VIIIC Act 138 (range 65-130%).

I'd also love to hear if/how anyone has been able to get testing for other disorders without having prior recurrent miscarriages? I have Hashimoto's hypothyroid and insulin resistance which I've read increase the chances of clotting disorders and associated implantation failure or miscarriage. I also have (possible TMI warning til the end of this paragraph) excruciatingly painful periods with heavy bleeding, clots and mid cycle spotting (I've had a laprscopy - no endometriosis). And when I was 19 I had a reaction to sulfa antibiotics which involved GI bleeding to the point that my stool was basically pure blood for the better part of a week, and the doctor seemed surprised when I came in for a follow up and wasn't dead. So I'd think some of those things might be some justification, but I don't know!

Thanks for any help or advice anyone can provide!


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## jcwmama (Sep 4, 2009)

Can anyone in the Roanoke oy Lynchburg area of Virginia advise on a good OB or midwife for a women with clotting disorders? I'm currently 7w and on generic Lovenox once a day. I'm not happy with my current OB and practice and looking for someone famaliar with clotting disorders. Any information or suggestions on where to look would be greatly appreciated!


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## jcwmama (Sep 4, 2009)

Hi ladies- looking for a little advise.

I'm 8w and I have antiphosopolipid syndrome with anticardiolipin antibodies. I'm on a once daily 40mg Lovenox injection and once a day 81mg aspirin. I've miscarried 3 times before in the 7-9 week range. I made my first ultrasound with this pregnancy for 11 weeks because of all my negative experiences with ulrasounds around the 7-9 week time frame. Now I'm wondering if I should go in for an ultrsound this week, around 8.5-9 weeks. Can anyone let me know if they know of any reason this would be beneficial? Is there something that could be seen on the ultrasound that could indicate that my dosage is incorrect and could be adjusted? I don't want to wait until 11 just because of emotional reasons and then at 11 weeks the ultrasound show something that the OB says we could've fixed had we known earlier. Does that make sense?

I lay awake at night worrying about...well.. everything and I'm wondering if the u/s now would calm my nerves.

If it helps, my number for the anticardiolipin antibody was 47 (though I can't remember the units right now) which the OB said was just inside what is considered 'treatable'. Apparently 40+ units is treatable.

Any advise would be most appreciated. Thanks for your time!


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## nsmomtobe (Aug 22, 2009)

I know this thread is old, but there is a lot of wisdom contained here and I hope by resurrecting it, I can bring back some of the knowledgeable participants.

I got my blood work back yesterday after 3 miscarriages. Karyotype testing is pending, but as far as I know, that doesn't test for MTHFR, does it? It does not look like my Homocysteine levels were checked, but I'm not sure what that would look like. I know I was checked for Factor V Leiden, but I don't see those results either. I was tested for Antithrombin III, ANA, Protein S, and Protein C activity, as well as TSH and CBC.

According to my doctor, all of my blood work came back normal, so there is no obvious clotting disorder. However, she has suggested that I start taking baby aspirin anyway. She said it might help and it shouldn't hurt. Does this sound like a good idea to anyone? I've read somewhere that if you take baby aspirin, you should have your platelets monitored regularly.

I'm noticing that my platelet count is 201 (10e9/L), which is on the low side of the reference range (186-353) but my mean platelet volume is 12.3 fL, which is higher than the reference range (9.6-12). Does this mean anything in terms of clotting?

ETA: After reading through the thread and looking back at my results I notice now that I actually have a positive result for ANA: Anti-dsDNA is in the indeterminate range and anti-RNP is in the positive range (1.3). What does that mean? According to what I see, it might be systemic lupus erythematosus? Does that have anything to do with clotting?


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## Redmom (Jul 26, 2011)

I've had 2 m/c and had a panel of bloodwork for RPL (recurrent pregnancy loss).

I've tested positive for 2 copies (homozygous) of the 4G variant in the PAI-1 gene.

I'm just learning what this means, so far my understanding is that it is associated with miscarriage, also clots and heart attack.

My doctor (we are seeing an RE) said the management would be daily aspirin during my next pregnancy (hopefully this will happen) - but I've also read of women with blood clotting factors being daily shots of lovenox (or similar).

Does anyone have any experience or knowledge of this subject?

Thankyou


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## nsmomtobe (Aug 22, 2009)

Hi Redmom,

I have never heard of that gene before and I know little about blood clotting disorders (I just resurrected this thread in hopes of bringing in those with more experience) but I have started a thread for taking baby aspirin, which I hope you will find helpful: http://www.mothering.com/community/t/1398846/baby-aspirin

My RE mentioned that the ideal standard is to combine the aspirin with heparin injections, but she said that I did not qualify for the latter because I didn't have an obvious clotting disorder. If you do have an actual diagnosis, maybe you do qualify. You should ask your doctor about it when you get pregnant again.


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## artemis80 (Sep 8, 2006)

Hi ladies,

I remembered this thread from when I used to post on here back in the day, and I'm hoping someone or some of you are still posting.

When I was pregnant with DS back when I was 25-26, some members of my family tested positive for FVL. Because I was pregnant, I got tested as well. I found out I am hetero for FVL and compound hetero for MTHFR. They didn't have me do Lovenox during pregnancy back then, but postpartum, I did do Heparin for a few days and then Coumadin for six weeks. At the time, the perinatologist said it'd be best to be done having babies by 30. I had never, and still have never (knock on wood) had any clotting issues at all. 

Well.... (what happened to all the old smilies?!!??) life has changed a lot, I'm 34, and wondering about having another baby. I'm assuming that because of declining fertility (already? sigh) and the blood clotting issues, I should do this sooner rather than later. 

Without being too indelicate, how old are you all? Have you been told anything about getting pregnant in your 30s? 

Do most doctors still want to induce? With DS, the peri I was consulting with told my CNM that "we like these patients to deliver by their due dates." It turned out not to be an issue, as he came a few days early. And I was only 26! Sheesh! I'm assuming any OB would now, since I'm older, have me do injections throughout pregnancy?

Thanks!


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