I am now 43. I found out I had FVL in 1998. In June 1997, I had a DVT in my left leg, and a pulmonary embolism in my right lung. I am very lucky
to be alive. I had the embolism for at least a month; it was first diagnosed as an asthma attack. I was having a lot of leg pain, and one day my
left calf was swollen. I called my doctor to make an appointment, and he sent me from work directly to the hospital - "Leave now." I was
very active - mountain biking, volleyball, etc., and the doctor guessed that it was that that gave my lungs the ability to supply my body with oxygen.
I got a Greenfield filter in my lower Vena Cava, and was put on warfarin for 6 months. Funny, I considered it a hardship - the activity, especially
biking and skiing, is what kept me sane.
Exactly a year to the day (first Monday in June,) I got another one in my right leg. I had gone for a trail ride, and I couldn't climb hills because my right leg was useless. That night, my right leg was swollen. Luckily I realized what was wrong, and went to the ER. This time, the clot started at my knee, up my thigh, and PAST the Greenfield filter. And another PE. Another filter was inserted above it via my arm, after my doctors consulted Dr. Greenfield. That is when they tested for FVL.
I am pretty lucky also that I do not bruise very easily on the warfarin. I still mountain bike, I just don't let it loose - probably not the smartest thing, but I understand the risks. I think being in a car in Metro Detroit is WAY more dangerous. I can't play volleyball at all, even back-yard games.
At any rate, I have adjusted. I had felt like my life was over for about 2 years. Maybe my story can help someone else that thinks they might as well die because they have to change their lifestyle in such a drastic manner..
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