Have had 2 Kidney Transplants: Problems with the first kidney

Welcome, @dhozarksmo. I added your question to the Transplants support group as well so you can connect with other members who have had a kidney transplant or two like @chinniechudd1943 @jennifer0726 @hardaway3 and others.

It is frustrating when the cause is not clear and you can't get answers. What has been ruled out? What are the next steps? Is your 2019 kidney functioning well?

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?

Hello,
I am not familiar with this rule. I'm Stephanie and I have PKD - genetic kidney disease that took out both of my kidneys. At time of initial transplant, I went to Indiana University Transplant Center, where they removed one kidney . My old kidney continued to spew out icky stuff and I did not feel very well. Two years later, I went to Mayo and asked Dr Prieto to remove my old kidney. Removing both old kidneys is normal protocol for PKD after transplant, because the diseased kidney will continue to cause issues.

With that being said, I am wondering if you could request having the first kidney removed? I know nothing of your medical situation, so perhaps this is not possible. Just offering it up as a suggestion. Perhaps, Mayo would consider removing a leaking kidney that is not serving you well, as opposed to "working on a transplant" not done at Mayo.

I am sorry you are having difficulties. The medical world can be so frustrating, and yet miraculous, all at the same time.

That is a good idea for surgery there. But I have a long ways to go before that's even an option. We don't know what's causing this strange sediment in my urine. We're pretty sure it's from my oldest kidney transplant. But that's all I know. I'm going back to the first urologist that I saw because everybody after him has really dropped the ball. Or too difficult to get appointments with in a timely manner. I'm really a complicated case. But if I ever do come to the point where they decide it needs to come out that is a good thought. Thank you!

@dhozarksmo I will be interested to hear how they isolate the sediment you are experiencing, and determine its source! Will you please let us know? How long will you have to wait for an appointment with your first urologist?

It can be frustrating to have to track down causes for current problems, and sometimes you feel like you're the only one who is interested in doing so, right?! It sounds like you have kept good records of everything, and that is sure to help.
Ginger

I see him in 2 weeks. Hopefully he can help or steer me in another direction that ca

Mayo called and I got in. Two weeks from tomorrow. I really was shocked but am pleased I will finally get my problem looked at!