Guest guest Posted May 30, 2003 Report Share Posted May 30, 2003 Hi Beth You have named two of the three people who we literally owe our lives to. Dr. Lillehei is also our surgeon and he is the one who performed Joey's pancreatectomy and islet transplant. It was the first one he had ever done and there isn't another person I would have rather had do it. There aren't words to describe the compassion that they have shown us over the years. If you are wondering about the third person, it's Dr. Sethna from the pain team. He is truly an angel sent from heaven. The last couple of years Joey very rarely had increased enzymes with his pain. He was home (and hospitalized) on a constant infusion of Demerol - eventually enough to kill an elephant - and was never free from pain. We tried nerve blocks, epidurals, patches, etc. and when he was having an episode, there was nothing that gave him total relief. At the end, his episodes were lasting between 6-10 months. During those times he was unable to eat or drink anything. He existed on TPN and Demerol. Noone knows why his pancreatitis was so debilitating. I think he was the exception rather than the rule. I believe that Joey's pancreatitis was auto- immune related. He had a history of severe food and environmental allergies. Then the pancreatitis started when he was 5. And now that his pancreas is gone, he has developed alopecia universalis. Of course, the best part is that now he is completely free from pain and is growing and gaining weight and just enjoying life! We will keep your family in our prayers. Suzanne Quote Link to comment Share on other sites More sharing options...
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