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Existing kidney denied because it wasn't Mayo transplant
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, nephrology,
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 to disease, 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
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Not getting accepted by a transplant center which hasn't been involved in your kidney transplant ... is a standard policy ( I find this pathetic gesture & policy) Medicine is a supposedly considered to be a Noble & Alturistic profession..Don't look those alturistic expectations .. they no longer exist.
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3 ReactionsI had a pancreas transplant in 2005 at a transplant center other than Mayo. I was satisfied with the pretransplant evaluation and grateful for the transplant but the follow up was lacking. In 2016 my transplanted pancreas showed decreased functioning and I also showed signs of needing a kidney transplant. I ended up returning to the original transplant center AND going to Mayo for pretransplant evaluations for simultaneous pancreas kidney transplant. Once I experienced how things are done at Mayo I wish I would have started there in the first place. Mayo was reluctant / hesitant to weigh in on my previous transplant (at another facility) but accepted me as a new transplant patient. I had a very thorough pretransplant evaluation including a team of various specialties collaborating and recommending the best transplant plan for me. I ended up being approved and accepted for kidney transplant. The endocrinologist I saw did not think I needed a pancreas transplant but recommended great treatment options for my diabetes. I had also aged out of a simultaneous pancreas kidney transplant. I believe Mayo is truly in the business of helping patients but not necessarily fixing other providers mistakes.
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2 ReactionsI don't believe this is another provider's mistake. It is a case of a kidney transplant that functioned well for years. It is old (82 years) and hasn't been functional for several years.
Something unusual is going on with it. From what I have been able to research there is very little to no information or research on this.
I thought Mayo was in the business of working on unusual or complicated cases.
I have seen 5 doctors who should know something about it but have no answers at all.
I got in! Two weeks from now. I'm very surprised! After my phone interview it didn't sound like there was much of a chance.
But I'm grateful. Maybe I can get some answers now.
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4 ReactionsGood news! I hope you can get your answers now. Best of luck to you.
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1 ReactionThanks so much!
Curious, which mayo center will you be seeing
Rochester
My liver was transplanted in 2021 in Oregon. I may be moving to Arizona next year and queried here at Mayo Connect about Mayo in Phoenix taking me and my transplant. As I found, the hospital that did the transplant keeps responsibility for it no matter where I am. After I thought about it, Mayo didn't do it, doesn't know exactly what the surgeons did in the OR during the process. They couldn't know any extraordinary the surgery team may have done without extensive liaison with my transplant hospital, hampering Mayo's ability to help me. Plus they're picking up liability for something they did not do.
It made sense to me. With the age of your kidney, seems like Mayo would do something, unless the hospital that did your 2001 transplant is still in business and has your records. I wish you speed in getting this resolved.
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1 Reaction@johnnoregon My husband had his kidney transplant in October 2016, at Scripps La Jolla Green Institute [near San Diego, CA]. He was followed by them until he moved up here to Oregon in 2020. In 2021 his care was transferred to OHSU [Oregon Health and Science University] near Portland, OR. He goes there now for his annual appointment.
Ginger