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Leslie Osmera
I've been reading the FVL website for about 4 years now. It helped me find the study that Dr. Goldhaber at Brigham and Women's was running and a great doctor at U Mass Worcester, Dr. Rick Becker (who now run the thrombosis research at Duke) and Dr. Fred Spencer. I even met with Dr. Goldhaber in Boston (where I was living at the time). Now I just moved to So Cal, starting all over to research a Dr. who knows about this.
Like you, I did the heavy duty day job (in Biotech) moving from the lab to a desk. I had my first clot in 1987, I was 26 at the time and I think it was a result of being on birth control pills for 5 yrs and a sailing injury to the back of the knee. I spent a month at Scripps/Green hospital in La Jolla, and of course at that time didn't have any real answers While in the hospital I threw a clot to my thigh and has a small PE. I was on Coumadin for 9 months and that was that.
I went 14 years, great diet and exercise, training in a single handed sailboat in SF bay for the Olympics and did the Olympic Trials in 2000, still unaware that I had anything. After the trials, I happened on to a great GP and she recommended me to a hematologist in Berkeley who diagnosed me in June 2000. I can't tell you how many bruises and bangs to the head and other sailing related injuries I had over this time, as I was also racing big sailboats as well, just about every weekend. I attribute my long break from any problems to diet and exercise.
Then the desk job came and I was sitting more, not exercising, more stress and I had a clot in Aug 2001 on the same lower leg. At least I knew what I had and I got it treated right away with the Lovenox, new stockings, coumadin I also moved to Boston within a month and that is what prompted me to find Dr. Becker (working on the low dose trial). Thank you for helping me find him!! He is an amazing doctor and I was so sad to see him go. I had another clot in 2002 (same calf and thigh), and at that time it was 3 strikes for me and now on low dose regime (and 12.25. and 15 mgs). Still at 42 and very active, I did the Olympic Trials in a bigger boat wearing a helmet just last February in FL.
It sure caused a lot of great supportive comments as head injuries are quite serious in sailing! Biggest lesson learned, watching weight, low impact aerobic exercise, diet and low stress are key factors to reduce incidents.
My father and sister also have FV and because I encouraged her to be tested, my sister knew she had it and last September at the age of 40 had her first child, a very healthy 8 lb, 2 oz. boy who is the joy of my life. I am so grateful that because of the FVL site and education that is shared, our family is blessed with a new addition. !!
It feels really great to know that others have similar stories and feelings and that we have options, hope and now the technology to not only identify this, but to treat it as well. All very exciting and hopeful stuff. I'll let you know what I come up with. My dad has not really done anything about it, and I am working with and for him to get more informed doctors as well. He's been on coumadin for over 20 years and on the higher dose program. When the PREVENT study was published, I sent it to him and his doctor was not even aware of any studies and not really supportive on the lower dose regime. Hope to change that and my dad is getting more into the FVL site as well.