Talked to my pre transplant coordinator today about my frustration - TopicsExpress

Talked to my pre transplant coordinator today about my frustration of 7 years of being listed, the aborted living donor transplant two months ago, the bills are rolling, and the $$, time and energy that PSC has caused my family and me. I know that it is all out of her or our hands. When I was listed i met the criteria to be put on the list. She told me today that they are not adding anyone to the list due to the demand and shortage of livers unless their MELD is at least 30, or they have liver cancer, or are having a life threatening crisis due to liver disease. Because I am already on the list I have the option of staying on the list, or moving to the not listed but on maintenance. Which means less blood work, and being seen in the clinic by the pretransplant doc once yearly. My care than would all be taken care of by my local doctors (I live 5 hours from my transplant center) Is anyone else hearing of changes at their transplant centers?

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