mrsnlel you mention feeling unsupported in the cities (MN Twin Cities?) and that you may get more support in Rochester. I have a feeling that your current clinic and my previous transplant center are one in the same. When I started my kidney transplant journey I started with the previous center because that is what I knew and was familiar with (but wasn't really satisfied). I got the idea to go to Mayo and after checking with my insurance regarding coverage I found out that both facilities were covered but that my previous transplant center had lost their designation as a center of excellence (COE ?). I went to Mayo in Rochester, had my evaluation and thankfully was approved and accepted. I have complete confidence in their evaluation, especially compared to my previous transplant center. I forgot to mention that my father-in-law had a kidney transplant and my daughter was his living kidney donor. It was 14 years ago at the same "cities" transplant center that I have been at. If I knew then what I know now I might have steered the project toward Mayo in Rochester. You said that you have several people inquiring about donating for you that qualify. That is fantastic. I have had 3 that I know of in the past year. I referred them to Mayo. Sadly, they were ruled out but with the trust I have in Mayo I'm sure it must be for the best. I recommend you at least meet the Mayo team before you make a decision on what to do. Think of it as a second opinion. I'm glad I did that and chose Mayo.

I think you are right. Only 1 of the 3 in Mpls is not a COE. My husband was told there have been several tested, but we do not have any names or information. That is where I feel the risk of losing them comes in. I feel unsupported because once I was listed it seems that I really do not have a transplant coordinator. I talked to her once and she basically told me that she will not be in contact with me again until she has a donor for me. I was told to start looking for a living donor. No help or suggestions on how to do that. I have done a lot of research so that my husband and I could work together to get a campaign going. The only reason my husband was called was because he did not qualify as a donor. Head is spinning. I meet with my nephrologist next week and I will talk to him about making a change. Please private message me. I would love to talk to you privately about this if you are interested.

Hi @mrslnel, you'll notice I removed your email from your message on the public forum. We encourage members to use the private messaging function to share personal information. We want to avoid your getting unwanted spam. I agree that some things are better shared privately. However I also want to point out the benefits of using the public forum for information sharing.
All the best
Colleen