I was diagnosed with FVL (Homozygous) August 22, 2007… I had a pulmonary embolism. I was 27 years old, not on birth control, a non-smoker, active… everything I should be to avoid a clot. I was told over and over how lucky I was to have walked into that ER alive, and they weren’t providing any real positive likelihood that I would survive it–but that we would try to treat it and hope.
Many people have FVL, but most are heterozygous for the condition. Many people who are heterozygous never have a clot, they may not even find out about it unless another family member is diagnosed. That said, I would encourage really following what your doc recommends. If you pursue pregnancy, do talk with your OB well before and discuss whether or not he/she would like you to coordinate with a high risk OB.
Many women find out about FVL after multiple miscarriages, a clotting episode during labor & delivery, or through a stillbirth. I pray I never go through these things and I believe my daughter’s uneventful birth (in 2005) was truly a miracle. I don’t know how she made it here healthy, and how nothing happened to me due to the FVL at that time.
My sister, mom, and many of my relatives are heterozygous. They are treated through more caution with things like surgery as well as the doctor limiting birth control options.
I have been on Coumadin since my PE, and due to being homozygous and having had the PE, I will be on lifelong Coumadin therapy. Like you, should my fiance and I pursue pregnancy, I will need to use Lovenoxx/Heparin (it doesn’t cross the placenta and Coumadin does) prior to the pregnancy (as we TTC) and throughout the pregnancy. I think they monitor pregnancies in heterozygous women similarly but I will have frequent ultrasounds to monitor fetal growth.
As for birth control, the options are extremely limited due to Factor V. I’ve had an IUD for a couple of years now and that has been a wonderful option. Aside from that it’s pretty much barrier methods that are allowed.
I know it’s scary–for a good year or so after my PE I would have scares when I would feel the same pain in the same place as I did when I had my PE. I’ve had a number of CT scans to make sure I wasn’t having another PE. I have to have my INR monitored at least monthly, and often times more than that when it’s unstable.
I hope this helps… at least to know there are others out there going through similar things!