Alpha-1 Antitrypsin Deficiency Support Group

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Posted on 09/03/08, 06:07 pm
Hello to everyone. I am starting my 2 week liquid diet prior to lap-band surgery. In the last three weeks I have lost 35 lbs. on my own. I had a lap band that gave me an infection that lasted 2 years and it had to be removed.I had more than twenty-five wounds on my abs and chest that had to be cut and drained. One wound was so deep in the middle of my chest that I could see my sternum. I had to pack and unpack these wounds twice a day for a year and a half. The antibiotics I was given had a side effect that made my lose feeling from my knees to my feet. I had to learn a different way to walk because of the neuropathy in my legs. Inclines, declines, and stairs still give me trouble. I was given a clean bill of health after 2 years. Two weeks later they discovered that I was in the last stage of liver cirrhosis. They gave me two years to live. Earlier this year I was put on Hospice. It was another wake up call. I got all of the pain meds. that were dragging me down more quickly, and learned to live with the pain. I was given the OK for another lap band, and will have surgery on the 18Th of this month.I have 130 more pounds to lose in order to be placed on the liver transplant list. I will die without one. The cirrhosis was caused by a rare genetic defect called Alpha 1 antitrypsin deficiency ZZ. It is the rarest and worst form of the illness. I will be put on the transplant list as soon as I lose the weight. Than I will just wait on a liver. I was a long distance runner in my early to late 20s. I have run a half marathon, but never a full one. My goal is to run a marathon which is 26.2 miles. I have no choice but to make it. I will not accpt defeat. Gene
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Posted on 09/04/08, 02:09 am