I have had 2 kidney transplants 2001 and 2019. Neither were done at Mayo. The 2019 is functioning well. But the 2001 is spewing out sediment of different kinds. It is an 83 year old kidney.
I have seen urologist who confirmed material is coming from old 2001 kidney. I have seen infectious disease, my nephrology dr, and my 2019 transplant team doctor, and another infectious disease doctor.
Urologist, nephrology, and second infectious disease doctor all see need for serious testing and intervention.
First infectious disease doctor and transplant doctor are just saying "we don't know but don't worry about it."
I have having a terrible time getting appointments in a timely fashion.
I asked my nurse practitioner from the transplant team if I should seek help from somewhere like Mayo. She said YES! Excellent idea- go for it.
I did the Mayo application and had a phone interview today and was told that none of the Mayo Transplant teams work on transplants that weren't done at Mayo!
We tried through infectious disease to nephrology, and other routes with no success.
She kindly tried talking to a transplant person who said she might be able to get someone to review it. Said I'd hear in one to four weeks, but I don't have much hope.
I have had problems starting at age 20 (now 64) that have been strange and hard to deal with. Auto-immune, kidney failure, etc. I am used to having doctors not really know what to do with me and not really want to deal with it. Guess this is just another one of those times.
Anyone ever heard this rule about dealing only with Mayo transplants? Any advice? Think there's any chance of this happening?