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Jenny
I'm Jenny, recently diagnosed with Factor V Leiden and Prothrombin mutation after throwing a PE to each lung from my left leg.History: PE in 1992. Second event about 3 weeks after first. Never became stable on coumadin. Factor V and prothrombin mutation incredibly not checked as parents did not admit to hospital that my "mom" wasn't my biological one.
Approx 2002 had small clot in left leg small vein given clot busting drug in ER and symptoms resolved. Still no tests done.
12/ 2007 with absolutely no discernible reason I threw two additional clots (one to each lung). Had not had recent travel, surgery, or immobilization. This time knew about only having one half of family history and was tested. Came back positive for Factor V Leiden and Prothrombin mutation. Also came back positive once of two times required for diagnosis for antiphospholipid antibody.
Did fine on heparin while in hospital but despite INR of 4.5 threw two additional clots to the left lung the next week. Spent New Years and the next 13 days in hospital for second time in a month. Vitamin K shots failed to resolve high INR quickly so I had two units of fresh frozen plasma. This worked.
Had Greenfield filter placed 1/2008. I was on Heparin in hospital and recovered again. Sent home on Arixtra, which seems to work.
I never felt good on Coumadin either time I have been on it and still form clots while therapeutic on it and even with an INR of 4.5 which seems to be quite rare.
I have multiple other rare genetic disorders. Other disorders include Dercum's Disease (www.dercumshope.org) and Madelung's Disease (www.aboutmadelungs.com), and cone dystrophy. History of polycystic ovary syndrome with multiple dermoid cysts at age 24.
My own research on the blood clotting issue leads me to suspect I probably have "coumarin resistance" and I would like to find out how to determine whether or not this is true. Doctors here (Cincinnati area) are discussing whether or not I should eventually go back on Coumadin but my instinct is that it's not going to work on me. How do I find out for sure if I have coumarin resistance or some other reason that makes Coumadin not work for me? I know about coumarin resistance only because I happened on it in one of my own textbooks during my recent hospitalization. If I'm understanding correctly I should probably also be checked for the VKOR (VOKR C1?) mutation before we should consider trying me on Coumadin again. I do not want to have Coumadin resistance confirmed by throwing another clot. Would there be other things I should have checked?
Thanks to those who have shared stories about Factor V parents who are still alive and kicking in their 80's. At 51 and nearing completion of a PhD in Epidemiology I'm glad this latest illness looks more like a beacon to redirect my focus than an early death sentence if I take care of myself. The stories about older survivors of this give me hope that I can reach my goal of living to 100.