This patient support community is for discussions relating to transplants, anti-rejection drugs, financial and insurance issues, long-term issues, organ rejection, pre- and post-surgery, and waiting list issues.
our 13 year old son is a 10 yr heart transplant. this Nov he began developing abdominal pain which intensified. he was hospitlaized in Dec where ct,PET, endoscp[y, stool, fungal thrush, tetsts were run for PTLD, lymphoma, EBV, cmv, mersa, zes, and ulcers. all came back neg negative. except for ulcers (h pilori) he saw about a week of relief and then it intensified. Now he has pancreatitis added to the problem. They are treating the ulcers w/ carofate. his lipase levels keep soaring (600-1500) every couple of days. any ideas?
I wish I could answer your questions. as you have probably already been told, heart transplantation is still in the infancy stage for the most part and there are SO many questions that have no answers. What has the transplant team told you?
His heart function is perfect. Their gut tells them it's PTLD but thus far unverifiable. The team of other disciplines want to biopsy a node in a tough area in the upper right chest. I believe they are doing a pet scan tomorrow to assess that lymph node.
I was glad to see your son's heart is doing as well as it is considering the drugs he is on combined with what is happeing. I can't give you thwe answers to what you are asking but I just had a thought.....have you contacted the Hypertrophic Cardiomyopathy Assoc.? There is a woman named Lisa on there that started the orginazation and they have a world wide following, I think something like 40,000 members at this point. Sign up on there and go to their transplant forums; they may be able to help you find your answers. One of the most frustrating things about the transplant heart is the not knowing why things happen. My daughter just celebrated 11 years on the 5th of July and her heart has been in failure 4-5 times already. No one knows why this keeps happening to her and no one's heard of it happening before. Her EF% is 15 and they say that she isn't in failure, but in a bad rejection even though the biopsies are perfect. Go figure!
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