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Transplant waiting time with live donor

Kidney & Bladder | Last Active: 1 day ago | Replies (11)

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@roxylulu22

We had a terrible experience with this (not at Mayo). Very long story short, the transplant hospital did not have a donor surgeon and was "stringing us along" until my husband's donor (his sister) coordinator whistle blew and told her what was going on. The transplant hospital was under no obligation to let us know the status because they had made all their notifications through the state. We were then stuck because insurance would only cover one transplant consultation per year, so we had to fight with the insurance company to obtain permission to consult with another provider. Since it was coming up on a year since the donor's initial tests, and many of the tests would have to be redone, the insurance company allowed us to have another consultation at another hospital. We arrived for our first consultation at UW Madison in Wisconsin on December 12th and my husband was transplanted on February 23rd. My long story is to say that if something feels wrong, dig until you get to the bottom. If we had just sat around and waited, I am sure my husband would no longer be with me, as we were definitely out of time waiting for a transplant due to complications he was having with dialysis. If you suspect something as nefarious as what we went through, you can request a FOIA request from CMS to see if everything is on the up and up with your provider.
One last comment, your donor's team works for them. If there is any reason not to do the transplant health reasons, change of heart or otherwise, they are unable to discuss this with you.

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Replies to "We had a terrible experience with this (not at Mayo). Very long story short, the transplant..."

They should tell the donor if he has health issues which will not make him a suitable donor but they have not a had a single test for him.