Women with blood clotting disorders - Page 26

[Sage_SS]

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...

[~Mamaterra~]

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?

[kwilki8]

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.

[~Mamaterra~]

bumping

[orangefoot]

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

[neverdoingitagain]

[theartsymom]

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.

[kwilki8]

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.

[neverdoingitagain]

I had hospital birth, that was a natural childbirth. What would you like to know?

[Ilaria]

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.

[Ilaria]

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.

[Girlprof]

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

[orangefoot]

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.

[orangefoot]

I had no idea it had been so long since this thread was on page 1!

[jenholle]

Just found this thread :)

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

[Sassypants]

Can I please get some feedback from you ladies??

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 Antiphospholipid Antibody Panel, Lupus Anticoagulant and Factor 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

[theartsymom]

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!

[Ilaria]

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.

[whateverdidiwants]

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.

[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...)