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Blood and Blood Vessel Message Board


Blood and Blood Vessel Board Index


Hello, I also recently found out on top of my anti-thrombin III deficiency I also have Lieden V disease. It is a missing protein in our blood. It is a inherited disease, my 32 year old brother died before we were diagnosed, with multiple pulmonary emoblism. I have had many, many, episodes a huge mesenteric vein thrombosis that damaged my small intestine so it is difficult to absorb nutrients from food, I must eat NO chemicals at all, since this causes great pain in my abdomen. It was in my liver, gallbladder, spleen, stomach, small intestine, pancreas, and it was a miracle I survived! Since I have had pulmonary embolism, have taken a medical trial where I used lovenox injections in my tummy twice a day for two years, I lost 1 inch and bone mass, so that turned out not to be a good remedy, I take coumadin, but have gotten clots while taking it and been within the correct INR too. They say that Lieden V is somewhat coumadin resistant but is the only thing to treat this with. I am a 54 year old woman who has had problems with clotting since age 20. I have had 16 surgeries over the years since each organ one at a time gets a clot, lost both ovaries to blood clots, then a hysterectomy, had 1/3 of my large intestine removed due to pre-cancerous polps. Lung surgery, and on and on, after each episode of surgery I naturally get my normal bloodclot as well. I am going to the Mayo Clinic soon to find out if I can learn more and see what they can do or at least find out what is wrong with me. I weigh only 103 lbs used to weigh 125 and am 5'5, I am wasting away. Eating is difficult when you know you will have pain. So I eat only once a day, something has to give. I have been researching my blood disorder for many years, I will have answers soon to the Lieden V disease as well. I hope I have helped somewhat as far as clearing things up. Hope to meet some people I can relate to out here, thanks for having me. Dawn





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