Factor V Leiden Support Community Group

This is a group for anyone who has Factor V Leiden, a clotting disorder. Or people who know someone with this condition.

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Heart, Blood & Circulation
/ Factor V Leiden Support Support Group

Hello!/Pregnancy

deleted_user
deleted_user
Hello!
I am a new member. I'm heterozygous for FVL. I also have PKD. I joined the group because I'd like to be more knowledgeable on the risks of pregnancy. My husband and I are trying to decide if it would be safe to try (we should definitely get Dr. approval anyway, but they tend not to know anything about PKD).

So, if it's not too personal or forward for me to ask, what was your pregnancy like? Was it easy to get pregnant? I don't mean to be insensitive, but I understand there are risks for miscarriage, and I'm a little concerned about that, but any information would help at this point. Thank you!
deleted_user
deleted_user
if you get pregnant, you can not be on Coumadin or Warfarin. When I was pregnant with my son I had to take Heparin shots every day (twice a day) to protect my son. We had some other unexpected, and seemingly unrelated complications, but by son is 12 about to be 13. I would do it again if anybody could explain why my son was born in renal failure. Nobody says it was tied to the Heparin or my diabetes. I did not have any clotting problems for me or my son, however. Discuss with your OB/GYN and be sure to get a referral to a HIGH RISK OB. They helped me so much!

Good luck!
txbrandi
txbrandi
I am homozygous for FVL and have had a Deep Vein Thrombosis in the past. I have had a miscarriage in the past before I knew about it (who knows if it had anything to do with it or not). When I was pregnant 7 years ago and knew about the FVL, I did the heparin shots every day and had no complications at all. I had an IUD for birth control and when we decided to have another baby, I had it taken out and two weeks later -when my fertile time came around, I was pregnant (of course, I didn't know it yet), so no problems getting pregnant.

I only found out about having FVL when I got pregnant. The DVT had happened years before. At some point a couple of years before the pregnancy (but a few years after the DVT), a Dr. ordered some tests to check my blood (he seemed to be the only one in all of this time concerned with why it happened). Apparently, it showed that I had FVL, but no one ever called to let me know! When the nurse called to tell me I was pregnant, she happened to see the lab report sitting on the top in my chart and mentioned it to me (thank goodness, or I may have never had my son!)

I found out pretty early that I was pregnant and the OB Dr. made me wait to get on the heparin shots. He said that if I miscarried, I could bleed too much if I was doing the shots, so he wanted me to wait till I got past a certain point (can't remember if it was 8 weeks or 12). I was very upset about this knowing that FVL could cause miscarriages and I couldn't even take Coumadin. I had to pester him a little bit, but he finally made a compromise with me and cut the time I had to wait down (but he refused to let me start it right away like I wanted to). so just a heads up in case your doctor is the same.
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