@caretakermom
Oh no!
I was afraid that is what you were going to say.
QUOTE: "A nurse told you that Mayo wants their transplant patients at 540mg Myfortic bid".
Do NOT accept this generic answer from a nurse.
You need a video consultation appointment with one of the experienced transplant nephrologists at the transplant center to discuss a customized immune suppression plan for your husband and his issues.
I went through this same nightmare until I spoke with a Mayo doctor who customized my immune suppression dosage based on what was happening to me. (Active CMV, BK virus, leukopenia).
Your story is bringing tears to my eyes because I went through the same challenge to find someone knowledgeable to help me adjust the meds correctly. (NOTE: My local nephrologist knew the answer from the start, but he needed to defer to Mayo....but not the nurse!)
Do NOT accept a generic answer from the transplant coordinator or nurse.
Getting the immune suppression dosage customized correctly is too important. As you know!
A nurse saying, "Mayo wants everyone at 540mg Myfortic bid" is infuriating.