← Return to Care and community for post transplant patients when you return home?

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Profile picture for revkathy49 @revkathy49

@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.

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Replies to "@rosemarya Thanks for your kind note. My transplant was almost exactly six years ago at Mayo..."

@revkathy49 Good morning Kathy. I received a liver transplant at Mayo JAX about 3.5 years ago. We live near the Mayo now, but spend about 3 months in New England - where our kids are. I always ask Mayo to provide me with the blood orders when we are in Boston, and when the results come in, I copy them and upload them to my nurse coordinator with a note to please advise as to whether the transplant team has any concerns. Fortunately no rejection scares, but they have made a few adjustments to my TAC dosages over the years. I agree that your transplant team are the ones who should be interpreting your test results. It takes a bit of work to make sure they get them if the bloodwork is taken outside the Mayo system. Wishing you well.