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Old 11-14-2012, 12:37 AM   #1
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Join Date: Nov 2012
Posts: 28
DaveO48 HB UserDaveO48 HB User
Hereditary Clotting Disorders

In 2006 I had a total right knee replacement. I also developed a blood clot in the Popliteal vein. I was put on Warfarin (Coumadin) for 6 months. The clot cleared up. I was taken off warfarin, the next year I developed a clot in the same vein but left leg. No surgery before the clot happened. Back on warfarin INR 2.5. Next, while on warfarin INR 2.5, I developed PE's in both lungs. ICU for 10 days heparin shots and after release was sent to hematologist. He ran a lot of tests with the finding of compound heterozygous MTHFR C677T and A1298C, Factor V Leiden homozygous R506Q, and Prothrombin/Factor II Mutation heterozygous G20210A.
That's a mouthful but, suffice to say, I will be on warfarin as long as I live.
I have my INR checked every 2 weeks with a goal to maintain my INR between 3.5 and 4. As I am extremely sensitive to warfarin I take 2MG each day except on Sunday and Thursday when I take 3 MG. My INR has fluctuated quite a bit from as low as 2.1 when something I ate interfered to 5.9 when I had to take a sequence of antibiotics.
The pulmonary embolisms left me with chronic bronchitis and aversion to cold weather.
An unexpected change since my INR has been raised is the edema in both of my legs below the knees has subsided more so in my left leg that still shows a clotted vein 23mm in length. I was told that my body had developed an alternative return route bypassing the clogged vein.
I have a brother and a sister that have similar genetic problems. I also have a sister that has Marfans Syndrome but not the clotting problems we have.
I have lived thru 5 ER visits from this and still do not know all of the ramifications for this genetic disorder, a work in progress.
Other problems include: Tinnitis, osteoarthritis, spinal stenosis, renal cysts, non alcoholic steatohepatitis, knee replacement, 3 rotatorcuff surgeries, 2 angioplasties, one heart attack, high arches and hammertoes, burst fracture of L1,and maxillary sinus fractures.
I take an extensive list of medications but now have "normal" blood chemistry. Because of the many medications I take I find my INR makes frequent excursions out of therapeutic range.

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