@hello1234

Thus far, our home neph has only called over to Mayo Az txplant team once. It took 3 business days to get a response from the transplant team. A friend from another transplant support group called on her own and she said they were not happy to talk to her. She said it took 4 business days to get a response. Neph doesn''t even remember which transplant doctor hd spoke to. I will ask him more in detail at our next appmt.
When Mayo transplant neph first talked to our neph, their first reaction was they don't believe hubby's anemia is caused by Everolimus but to : 1. check for Parvo virus and 2. to see hematologist. This second part was not explained to me in full detail. I asked home neph what was Mayo's reason for seeing a hematologist. Neph says it's to check bone marrow is functioning well. Neph also said the hematologist would be able to give hubby some Epogen injections for the anemia. Initially, I had thought Mayo mentioned hematologist because that's who would be treating Parvo virus because they were certain that was the cause. Anyways, we are meeting with a UCLA hematologist tmrw. He is the same doctor cleared hubby for transplant by doing a bone marrow biopsy.
Subsequently, if the bone marrow biopsy shows all is well, there is no internal bleeding, AND hubby started feeling fatigue at the same time that Everolimus was adjusted up. then we can say to Mayo the culprit is likely the medication. You're exactly right, transplant centers don't like to change meds unless they are out of options. The last time they change hubby's med, it took about 6 months of CMV reccurence, on and off, for them to agree that a change is warranted. They finally switched to Everolomus from Myfortic(and Myfortic was switched from mycophenolate in ther first month of transplant). The Myfortic dose Mayo wanted hubby to be on was too immunosuppressive for hubby and was causing CMV to recur every time the dose was adjusted back to whatever was the standard level.
So like our neph says, we have to do a thing at a time and I'm sure(hope) neph will help hubby do what is best for him. This whole thing has been very taxing on me because all I think about now is keeping hubby's graft protected. I don't think I can relax until this whole thing is sorted out and we will need Mayo's cooperation for that!