Factor XI Deficiency

lilmissmama468

I got a call from my midwife that I'm a carrier for Factor XI deficiency, a clotting disorder. Which also means I could be deficient myself and be at risk for bleeding during delivery. I have to go to the hematologist soon to get my blood tested to see how it clots. Any other ladies out there that are deficient or have a clotting disorder? To be completely honest, I'm pretty freaked out, terrified of excessive bleeding when I give birth.

Anyone have experience or advice?

nikkidavis421

I have a clotting disorder (kind of along the lines of factor V deficiency but not quite as serious) - my issue is that my blood clots quicker than normal. Runs in our family. Yours sounds like it maybe doesn't clot fast enough? I've never had any issues while giving birth (I have 2 kids), however, just as a precaution, I had to give myself heparin shots for a couple weeks after each birth just to make sure I wouldn't have any issues with clotting.

kjs08

I have a genetic mutation, Factor V Leiden, where I can clot too much, but only if the mutation becomes "active". I was first tested 11 years ago when it was first discovered that it runs in the family on my mom's side. I tested positive and my sister was negative. I just had blood drawn Monday to get the specifics as I don't remember them and I have no idea what happened to the records. For me, because I've never had a blood clot, my risk is very low of anything happening during my pregnancy, but I don't bruise easily and I've been that way my entire life. My mom had 2 kids and didn't have problems, but she didn't know she was a carrier till 2003/2004. 

As long as you're aware and being monitored, you'll be fine. Try not to stress out about it too much. Your doctors will make sure that all bases are covered. 

cafriend

I had a pulmonary embolism two years ago due to the contraception pill I was on and diagnosed with factor V. Now I am pregnant I have to have a heparin injection every day until 2 weeks after birth to ensure I don't get another clot. My consultant has really reassured me as she sees lots of women with clotting disorders who have very healthy pregnancies and babies! Try not to worry, it's better that they know about it now so they can be prepared.

whitfi24

I've got protein C deficiency. Another clotting disorder, though less serious. I also had PE which was attributed to birth control - I used NuvaRing. So I was on blood thinners for a year then off for a year. Now I do the heparin shots once a day. At 34 weeks I go to 2x a day until 6 weeks after birth. I have good doctors, so as long as they aren't worried, I'm not going to stress. 

bbarteau16

I'm Factor V as well! Baby aspirin once a day, no c-section, and I'm seeing a high risk doctor just to be safe. Maybe you'd want to see a high risk doc? Mine is absolutely wonderful and has given me tons of reinsurance that it will be okay! Best of luck ladies!