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Comments

Anne

“who the hell are you”

Why you’re the girl with a great hematologist who has a librarian in her back pocket, that’s who! (well and you’re probably also a girl who knows a thing or two about how to use google:))

Julie

Posts like this make me weak in the knees I love reading useful information written from the infertile perspective!

Danae

Oh crap, now I have something else to obsess about. Thanks for the info. I think I'll go take a baby aspirin right now.

Heidi

My brother has Factor V Leiden. He actually discovered it a few years ago when he stayed up all night playing video games and then developed a blood clot in his leg! (Can you believe he stayed up ALL NIGHT playing video games? Believe me. I have made fun of him many times for this. He's actually a normal person too!) Anyway, now he's on heparin, but other than that, everything is just the same as it always was. Good luck to you.

k

hey! i've hit your blog a couple of times while searching on fvl stuff. I always enjoy reading about it from your perspective - I often feel the same way, c.f. this post. girl, it's true - if you've gotta have something that makes you lose babies, at least it can be the one that makes it easier for you to get preggo in the first place and keep the kid long enough to start your lmw heparin injections. I'll be back to read more later. good stuff. Take care, k.

Debe

I'm a mutant, too and this is one of the best explinations I've seen of Factor V. Thank you

Windy

Thank you so much for posting this. I found out this morning that I also have Favctor V Leiden Mutation. I have been worried sick all day about it and reading your post has set me at ease a little bit especially since I'm heterozygous. Thanks again for posting.

Tammy Ethier

I have been diagnosed with Factor V leiden mutation (homozygous), so is all my family. Im really worried about having more children. I already have a 3 yrs old boy.I had no complication during and after my pregnancy. Will my little boy have this disorder too????

Maria

I just want to thank you for your post and the nice overview you recommended. My husband (42 yrs old) developed a DVT in his right calf last July 3. This past March, after his therapy of Heparin and Coumadin ended, he was diagnosed as having FVL. We were told to get our children tested. We just found out this week (day after my father died - boy is life fun) that our 18 year old daughter also has it, and thank God because she was taking oral contraceptives for heavy bleeding/cramps. So now she's off to college, not happy about having to deal with bleeding/cramps, and I'm not happy she has to have pregnancy risks, surgery risks, HRT risks...but at least she's off the oral contraceptives and her risk is greatly reduced. I don't know if we're going to have our 11 year old son tested now or wait until he's older...too much at once. Thank you again - your blog is wonderful - you seem like a fun person, mom, and cat owner! Maria

Kari

Thanks for posting this. Can I ask you when you started on heparin shots during your pregnancy? I have Factor V Leiden and Activated Protein C Resistance. At 28, I had DVT after a long flight to Europe while I was on birth control pills - doctors in France tested me and discovered my blood disorders. Then at 36 I when got pregnant, they found the heartbeat at 6 weeks, started me on Lovenox injections at 7 weeks, and then at 9.5 weeks I woke up and didn't feel pregnant anymore. When the nurse asked me if I was bleeding, and I said no, she said "why don't you wait a few days and see what happens?" I said "so is it normal to wake up one day an no longer fee pregnant then???" She booked me immediately and the high-risk OB told me there was no more heartbeat and the fetus stopped growing at 7.5 weeks. Now that I look back on all of this, I wonder if it had anything to do with having heparin shots so early in the pregnancy. I'd like to start the shots in 2nd trimester, once I manage to get pregnant again. (Trying IUI now, and will try IVF if needed. The first pregnancy was without doctor's assistance.) So when did you start your heparin injections? Did you take baby aspirin while you were trying to conceive? What ended up working for you? IUI or IVF?

Emily

Thanks for posting this! I was diagnosed with heterozygous Factor V Leiden and I have a lower Protein S deficiency (just slightly lower than normal). I was 10 weeks pregnant last May, and I had a miscarriage. I started spotting, and went to the Dr. and there was no heartbeat. I saw the heartbeat at 6 weeks, but they said it looked like my baby passed at 7.5 weeks. Very similar to Kari, however I did not take the Heparin, I did not know I had this until after my miscarriage. We are trying to get pregnant again, but I was thinking I should start taking the Heparin early? But I guess you just never know- since Kari had a miscarriage with the Heparin. :( I am sorry for your loss, Kari! Right now I am taking a baby asprin a day and also prenatal pills and extra folic acid. I am going to see a high risk doctor when I get pregnant, but maybe I should see them now? My question is also the same as Kari's. What ends up working with people who have heterozygous Factor V Leiden? I also will say that I have never had a blood clot, but my cousin, dad, and his aunt have all had one. I have also had surgery, and had no problems.
Thanks again for sharing and helping educate people more on this!

lempskies

I have factor v leiden. I've had 3 normal, healthy pregnancies & 3 losses (2 in the 2nd trimester). I was diagnosed w/ FVL after the 3rd which occurred a couple months ago.

It's so hard to lose a baby. My heart goes out to every couple who knows too well that grief.

Thanks for the information.

L

Thanks for helping me feel less alone! I had a DVT at 30 weeks pregnant. No problems up until then and was able to get pregnant quickly. Was on blood thinners for the rest of my pregnancy and for a few months after. The doctor never thought to test for any reasons for why I had a clot and passed it off as pregnancy hormones. About a year later I started going to a new doctor she said it was not at all normal for a woman in their early 20's, non smoker and healthy weight to have a blood clot even if I was pregnant. She ran a series of tests and found that I have factor V leiden homozygous. Finally some answers. I went to a specialist shortly after and he said he wasn't going to put me on blood thinners...that I was to young to need them and that the only way to know if I'm going to get another clot or DVT is to wait and see. Now, a few years later and we've been trying for another baby for over a year. Makes me wonder if its because of the factor V and I can't stop thinking about the risks associated with becoming pregnant again.

lboekweg

Hey Brooklyn girl,
I really liked your post. It was very informative. I was diagnosed with Factor V Leiden in 2001 after having my second set of blood clots. Since then I have been on Warfarin. I've been able to live a relatively active normal life I just have to be careful what I do. I have 3 children of which only one has Factor V Leiden the other 2 are carriers. I still run and mountain bike play different sports including rugby and foot ball. Life does not end with being diagnosed with Factor V Leiden you just have to be more aware.
My younger sister was also diagnosed with factor V Leiden she was able to carry all three of her children to term. However, she had to take heparin through most of her pregnancies.Her oldest does have some severe mental issues though and all three have been diagnosed with Factor V Leiden. But Having Factor V Leiden should not stop you from having a life and having a family if are able and you so choose.
I recently started a blog about my experiences with factor V leiden at: http://factorvleidenlb.blogspot.com/
There's not much there yet but I am working on that. Thank you again for the info. Unfortunately I found this after I made a post with a little information about factor V leiden. I should just refer readers to your post

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