Factor V Leiden

Factor V Leiden is the most common hereditary blood coagualtion disorder in the United States. It is present in 5% of the Caucasian population and 1.2% of the African American population.(more...)

Other sites

http://en.wikipedia.org/wiki/Factor_V_Leiden

http://www.cmaj.ca/cgi/content/full/167/1/48

http://ghr.nlm.nih.gov/condition=factorvleidenthrombophilia

http://www.circ.ahajournals.org/cgi/content/full/107/15/e94

http://circ.ahajournals.org/cgi/reprint/107/15/e94.pdf

I have 1 cell of FVL mutation. According to my Dr, I need to be aware of this as it pertains to: flights or car trips over 3 hrs, or prolonged periods of sitting. Now during all meetings (no matter how long) I try not to cross my legs at the knees and also constantly flex and rotate my legs. Easy to do and I feel like I am continuing to 'fight' any future clotting by these small, and simple preventative measures.

I have factor V leiden too. I take aspirin every other day just to keep my mind at ease, as I do lead quite a sedentary lifestyle. I just wish I had more peace of mind as my haemotologist never offered any further check ups after my treatment ceased for my DVT. She just wrote to my GP saying I could stop warfarin & that was it! No more mention of it again! I never even had a scan to check my leg or anything. Have never had an INR or d dimer or anything again. I've been left to live my life in fear.
I also had a P.E 5 months before my DVT, although both were linked to my pregnancy, so at least that explains why they happened, but still, my haemotologist can't say she knows 100% I'll never suffer an embolism again! Is anyone else living in fear of Factor v leiden?

Hi Christine,
Welcome to LADVT!!!
I'll take it a step further, I had an Idiopathic DVT in 2007 an dhave been OFF anticoags since may 2009.
I have been told I will clot again, when, I don't know but I live my life like there is no tomorrow, living every single day, to it's fullest.
Idiopathic means they have NO idea why I clotted, so any treatment is a long shot for me...
This is simply a suggestion, live your life to it's fullest!!!
Leave the worrying for somebody else.

christine2051 wrote:

I have factor V leiden too. I take aspirin every other day just to keep my mind at ease, as I do lead quite a sedentary lifestyle. I just wish I had more peace of mind as my haemotologist never offered any further check ups after my treatment ceased for my DVT. She just wrote to my GP saying I could stop warfarin & that was it! No more mention of it again! I never even had a scan to check my leg or anything. Have never had an INR or d dimer or anything again. I've been left to live my life in fear.
I also had a P.E 5 months before my DVT, although both were linked to my pregnancy, so at least that explains why they happened, but still, my haemotologist can't say she knows 100% I'll never suffer an embolism again! Is anyone else living in fear of Factor v leiden?

Hi Christine,
I blows my mind how doctors can differ of opinion on the same subject. I am also Factor V Leiden. I had a DVT as well as PE (a year apart). After my PE, two doctors told me that I would need to be on Warfarin for the rest of my life. I've tried to find more info on the side-effects of Warfarin but have not been too successful. I've asked the doctor about the negatives of being on Warfarin life-long and he felt that the risk of clotting far outweighs the risk of being on Warfarin. A friend of mine also has the condition and her doctor also took her off Warfarin. I honestly don't know which is best.
I guess that each case is different. Your doctor could be right that this is the best thing for you. I would get a second opinion - it can do no harm. At least your mind will be put at ease.