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Care and community for post transplant patients when you return home?
Transplants | Last Active: Nov 20 12:59pm | Replies (14)Comment receiving replies
@revkathy49, Hi and Welcome to Connect. I am a liver and kidney transplant recipient. I received both organs almost 17 years ago from an anonymous deceased donor in a simultaneous liver/kidney transplant surgery at Mayo Rochester. During all of those yeaes, I have maintained my follow-up care with the Mayo transpant team with annual visit and 3 month labs with a mail-in prograf kit. My local PCP is more than happy to authorize the lab orders because I don't live in MN. And he is really happy thay Mayo leads my aftercare. I guess I incorrectly assumed that everyone had a similar set-up for post transplant care.
RevKathy, How long ago was your kidney transplant? Have you considered looking for a different nephrologist? -one who is connected to a transplant center or is familiar with the needs of a kidney transplant recipient?
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@rosemarya Thanks for your kind note. My transplant was almost exactly six years ago at Mayo Clinic Jacksonville. I have an appointment with a new nephrologist who is known for his care for post transplant patients. I am hopeful because he will be the fourth nephrologist I have had in this area (Macon,Georgia). Not one of the four have had experience in post transplant care. I am in the midst of my second rejection scare, and my current nephrologist did nothing, not even explain my labs to me. Honestly, I know more than she does, and that is frightening.
I have made annual visits to Mayo and have bern in contact with them regarding labs that show the possibility of rejection. We have kept my Prograf level steady, and my levels were difficult to regulate. For at least three years, I have fluctuated greatly on my Tacrolimus.
Thank younfor your kind welcome and your suggestions for getting this latest crisis under control.