@hello1234

We never had a consistent transplant nephrologist that we saw at Mayo Az - it was who was available at the time. I remember the face of the female Mayo neph who made the switch but I think she was going on what the Mayo Az team advised. I remember asking why Everolimus and not Sirolimus she said it's because Everolimus is a better drug - a better/newer version of Siroliums due to cancer defensive property. Sirolimus also has side effects the common one is delayed or impaired wound heal. Unfortunately all txplant meds have side effects.

Tac trough level for hubby is 3-5 and currently tested at 3.4 so I think it's OK.

We saw a very good UCLA hematologist/oncologist on Wed and he is not happy about hubby being on Everolimus. Everolimus is a also a drug used by many of his cancer patients and he has seen many of these such anemia cases as a result. One of the first things he told us was "I can tell you right now that the Everolimus is causing his anemia." He also knew it wasn't Parvo because one of the blood tests(forgot the names) didn't indicate it could be. He said he would retest for Parvo again - not trusting the Quest lab!!

He checked hubby's hemoglobin again - got instant results at office. It dropped to 7.xx from 8.4 about 2 weeks ago. He says we would have to SIGNIFICANTLY reduce the Everolimus dose - down to 0, in order for his hemoglobin to recover and even that would take a while (not enough to go back to pre=anemia level). Meantime he has order some units for blood transfusion. Hubby going to hospital in today for cross type check and then scheduled for Friday morning out patient blood transfusion. BTW, he also said if cannot get blood transfusion appmt by Friday need to get admitted to hospital to get transfusion - it's that bad!

Hematologist spoke to home neph who told hematologist impossible to reduce Ev dose to 0 because that would hurt kidney. Home neph says he would contact Mayo but I have not heard back from him since I last spoke to him after hematologist appmt. I reiterate hematologist also said to "not use Everolimus" but that's not a decision that Mayo has to make, not the home neph.
Very confusing to us because conflict between transplant neph and hematologist. I can see the wisdoms of both but who do you side with?

So concerned that shortly after hematologist appmt, I also contacted Mayo and spoke to one of the txplant nurse coordinator. She says for our home neph to call and one of their providers would devise a plan for hubby. When ask if better for hubby to schedule appmt with one of Mayo Az neph, she says to go thru the home neph. Difficult to understand because of accent.

Later in the afternoon, we did receive a message from her saying she relayed my message to one of their providers and they have reached out to home neph and have given him "a plan" to address anemia issue. But thus far, I have not heard from home neph.

Hematologist visit in about 3 weeks but schedulled in 4 cuz he is all booked up!! If hemoglobin improves he would give hubby epogen shot. If that doesn't work then he would do bone marrow biopsy. At this time I think he believes it's the Everolimus causing havoc and not bone marrow.

I'll have to contact home neph to find out what is Mayo's plan for hubby - i wish they had disclosed that in the message. In talking to home neph yesterday he was saying it's possible they could lower Everolimus, reintroduce predisone to the regimen. Bad news if that's the case because diabetic hubby had a hard time on predisone controlling blood sugar - he was on it initially right after transplant. So many things to worry about...

@hello1234

Are/Have you ever been on predisone as your txplant regimen? Mayo used it for hubby but only initially post transplant. Was taken off a few months after he was discharged. He did not do well on it because blood sugar shot up. I have feeling that Mayo will add it back so Ev dose can be adjusted down. I