Switching Transplant centers for post transplant care

@schwartz welcome to Mayo Clinic Connect. I had a pancreas alone transplant at U of M 18 years ago. At that time I was told that my kidney disease was only mild - moderate and that I did not need kidney transplant at that time. I was satisfied with the pre-transplant evaluation and thrilled with the pancreas transplant. It was my own personal life changing miracle. The transplant occurred just 2 1/2 weeks after listing! BUT over time I felt the follow up care was inadequate. 11 years later the pancreas function was loosing ground and my chronic kidney disease (CKD) was worsening. It was time to start looking into kidney transplant. I went through pre-transplant evaluation at U of M and at Mayo in Rochester. I was approved and accepted at both. I chose to switch to Mayo. The pre-transplant evaluation was thorough and far superior to that of the U of M. I asked questions about the follow up care and was convinced that it would be better at Mayo than the U of M. So it is possible to switch transplant centers (for future transplant needs) BUT Mayo is not technically following my pancreas post transplant care (as it is not their transplant). Since switching I have received excellent care from Mayo and look forward to kidney transplant there when the the time comes. I am in the Twin Cities, MN metro area and have local endocrinology and nephrology providers that collaborate well with Mayo providers for my diabetes, CKD and post transplant care. I suggest that you contact the Mayo Transplant Center to inquire about an appointment. What can it hurt? Could you please comment post again to let me know how things are going?

Thank you so much for the reply! I will give them a call! My favorite Nephrologist from the U went to the Mayo and is the most kind and thorough doctor I have ever had. I have had a complicated post transplant experience and he has really helped me navigated that. Since he left the U my follow up care has really suffered. I guess the worst they can say is no! I will update how that goes!

When I had my kidney pre-transplant evaluation at the U of M 2 of the nephrologists I was in contact with went to Mayo within months after that (maybe the same providers as yours?). When I switched to Mayo I was able to resume care with my nephrologist.

Good to know! I did give them a call today and they are reaching out to my old nephrologist from the U that’s at the Mayo now to discuss. Fingers crossed!!

I am six years post Liver transplant and we moved to Phoenix. Transplant occurred at Jewish in Louisville Trager Transplant and I am doing great however my team said I should set up follow up care here and after several recommendations I contacted Mayo and after registering O was told I could not have follow up care with. Mayo due to them not doing transplant.
I was looking forward to follow up and also volunteering to encourage pre and post patients. I am now cycling 75-100 miles per week and hiking and enjoying a full life again. Any recommendations on how one could set up care and Hepatologist going forward ?

That’s wonderful you are doing so well and discouraging they would not let you transfer care. I guess I don’t really understand the reasoning behind it especially when you are no longer close to your original center!

Me neither and started wondering how I can find care even. The lady was nice and said she could direct me to a nephrologist ? Not sure how that would help especially if it was tied back to transplant issue ? Then why would I need a Kidney doc instead of a Hepatologist ? I am doing great and labs are better than most but now I have some concerns over if I did experience a transplant related issue what do you do?
Interesting 🙏🏽 not sure why O am even allowed on support group here ? All I wanted to do was support recovery

Hi @edwardlwallace, Mayo Clinic Connect is an online community where people can share experiences and ask each other questions no matter where you received your transplant or where you get follow-up care. We have several members in the Transplant support group here who did not receive their transplant at Mayo. You are most welcome to stay here and continue to share.

Like you, @rosemarya, is a hiker and is living life to its fullest post transplant. Did you have a kidney transplant or a liver transplant? Or both?

I was listed at University of Southern California and they recommended that I also get listed at Mayo Phoenix due to it's much lower wait time. My gastroenterologist was able to do this although it required a lot of additional tests and vaccinations. Make sure your insurance is accepted at Mayo Rochester though.

For people following this discussion, this info may be relevant.
Follow-up care may differ between Mayo Clinic sites in MN, AZ and FL, depending on available capacity. Many patients in Rochester, MN choose to have their follow-up care continue for life at Mayo Clinic and travel for annual check-ups. At all Mayo Clinic locations, follow up care is variable depending on the complexity of the transplant and availability (clinic capacity), as well as the preference and convenience choice of the patient.

Mayo Clinic has high demand for post transplant care, so not all requests for transfer of transplant care can be accepted unfortunately. It is always good to inquire.

@schwartz26, I'm glad that you called back at Mayo Clinic in MN, since your nephrologist moved their practice to Mayo from the U of MN.

@edwardlwallace, I re-read your first post and see you are a liver recipient. I encourage you to call Mayo Clinic in AZ again to ask for a recommendation for a local heptologist. Your transplant team at Trager Transplant Center at Jewish Hospital should coordinate your care with a local specialist.