Did your doctor tell you if you were Homozgyous (two copies of the FVL gene) for FVL or Heterozygous (one copy of the FVL gene)?

Here is some good information about this disorder written by Dr. Mary Cushman of the University of Vermont:

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

As far as length of treatment, here is a nicely done article by Dr. Stephan Moll of the University of North Carolina which address that topic:

http://patientblog.clotconnect.org/2011/03/30/dvt-and-pe-how-long-to-treat-with-%e2%80%9cblood-thinners%e2%80%9d/#more-715

R/Tom

I tested positive for FVL hetero. I did 6 months of warfarin after my PE 3 years ago. I now take aspirin daily.

I believe that my FVL gene in combination with knee surgery caused my DVT / PE. I am comfortable with not being on warfarin for life at this point. If i am ever in a situation that puts me at higher risk, then I will definitely ask about a short term solution to reduce my risk.

As an aside, I wasn't upset to hear my results. It was actually comforting to get an answer to the "why me" question.

Thank you both for your responses. And thank you for the links to additional info.

I am heterozygous. My clotting episode is believed to have been triggered by a mild risk factor, combined with severe anemia and the gene created the "perfect storm" in my body. I was on warfarin for 7 months and last month had my IVC filter removed.

I guess I was starting to feel normal again and now I've started worrying again, you know? Just need a little time to digest it, I guess.

Thank you both again.

I also showed to be heterozygous for factor V. I was 61 (6 months ago) when I had my "multiple PE's in both lungs". My father died at 60 from a "heart attack" (no autopsy done) and his father died at 59 from a heart attack. There is no way I will go off anti-coagulants. My Dr. agrees the risk of another PE and stress worrying about it isn't worth the risk of going off anti-coags..

I was diagnosed with homo FVL in 2000. The diagnosis came after I was diagnosed 95% clotted. It took almost five years before the clotting stopped being a bi-weekly event. I took warfin for the next 12 years., clotting frequently despite three times a week monitoring. My INR was always very erratic.1.2 to 7.6 back down to 2.6, these were my usual PT .Constant P.E.s were a constant problem. Two years ago my wonderful doctor put me on Lovenox injections, 80 MG daily. Except for a bad accident where I continued clotting for one month, I have had no clotting episodes on this drug. I feel wonderful. Unfortunately, medicare doesn't want to pay for this drug($1900.00 a month). I may have to go back to Coumadin. I pray everyday that something will happen and that I will be able to continue the Lovenox. I ask all of you for your prayers

Hey, GK, some studies show that Factor 5 is linked to increased risk of heart attack. I think with your family history, you and your doctor made the right choice. I have the Factor 2 Mutation and APS. I am also on thinners for life.

As you, I have a DVT, and PE's. I have tested positive for FVL, and am on thinners for life. My three brothers have this, as well. Two of them have had clots, and are on thinners for life. The third has had no clots to date, and is not on thinners.

Dad had multiple clots over the years. This was before they knew anything about FVL. In his later years, around 70 I believe, he tested positive for FVL. He was put on warfarin after that, but still had another clot.

My older brother decided to try the homeopathic thing. He went off the warfarin to do this, and got another clot for his efforts. Needless to say, he went back on the thinners.

I am not saying that your doctor is right or wrong about not putting you on thinners. There may be other concerns that he is considering. Thinners are hard on your body, and can cause you problems by themselves.

I wanted to add that even with two clotting disorders, APS and the Factor 2 Mutation, my clots did not happen until they were provoked by an injury. I had two risk factors already, obesity and inactivity (I was a long haul truck driver). That coupled with an accident where injured my right leg is what caused my DVT. If you do not have any risk factors, and the veins in your DVT led is not damaged, I think you will be fine. You know what symptoms to look out for in the future if you ever have another clot. Also, you know what precautions you need to take if you're ever on a long flight, long car ride, or if you have any type of surgery or inactivity due to a medical event. I know it can be very taxing not knowing what's going to happen, I totally get that. I hope you never have another clot and that you can remain blood thinner free! I sometimes wish I didn't have to take Warfarin anymore, but it is what it is.