Transplant waiting time with live donor

@dhrubasen Based on what your donor has been told, have you reached out to your transplant center and asked them about the status of your situation? Did something "fall through the cracks"? Are additional testings and considerations from your side holding up the forward progress?

I can only imagine the frustration from your situation!
Ginger

There are still tests for me. But why hold up tests for the donor? Same answer - because of me. Funny

There is a shortage of willing living kidney donors. I would think the Tx center would jump at the offer to be a living donor and at least begin with some preliminaries like health history, blood type etc. This is usually true even if the individual becomes an altruistic donor for someone else or participates in a paired donation. There are 2 other possible reasons. If your donor is adamant about donating to you and you haven’t been approved/ accepted yet for a transplant. Where are you at in your pre-transplant evaluation? (It sounds like that is what is being told to you and your potential donor.) The other reason is a heart breaker and is that your potential donor changed their mind and no one come clean on this to you. I’ve been looking for a living donor for nearly a decade. I’ve been through 2 pre-transplant evaluations, been approved and accepted for transplant but still haven’t found a living donor. I’m inactively listed on UNOS because thank God, my eGFR is in the low 30’s so I’m too healthy for active listing (eGFR 20 or less).
So how are you doing while you wait? What is your eGFR? Are you on dialysis? Where are you at in your pre-transplant evaluation? It can be done in a week to several months depending on the tests you need. Have you been listed with UNOS? Waiting is hard

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.

I would love to share intimation with you. We are experiencing the same thing. If this is the same hospital then maybe we need to change hospitals.
So frustrating! Thank you.

@kzeiss, you'll notice that I removed your personal email. Connect is a public forum. We recommend sharing personal contact information using the secure private message function. I might also add that by sharing here in the forum, you are connecting with several people where all can benefit from group support.

The donor and I talk every week. We know each other for 20+ years. And he would ask me what is going on every time we talk.
What cud b the issue in determining if his kidney is healthy enough to be donated. Both of us are getting frustrated. The attitude is not how to get it done but how not to get it done.

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.

Thank you for your feedback. Will connect through private message function, Could you please review the best way to do this? I am very empathetic for everyone anxiously awaiting a kidney transplant. I thought that by sharing hospital information, we might be able to ascertain informed next steps if this seems to be a problem with one particular hospital. Hope to connect with this person and really hope we are both just facing fixable situations.

Hi, @kzeiss -- if you'd like to private message someone, click on their username and then click "Private Message".