Transplant patients - anyone get anemia or Parvo Virus?

@hello1234

Yes up next is the appmt to go over the bone marrow biopsy with hematologist. I’m also going to ask him whether he thinks hubby can restart Everolimus under slower titration and better monitoring. TBH I don’t think he is in favor of anyone using this drug unless absolutely necessary. Then off to see home neph o 08/01 to discuss (possible) change to txplant regimen. Mayo Az and UCLA use the same medical platform(MyChart) so they can share/access each other’s notes.
My biggest concern as you know is the “new” txplant regimen and how it affects hubby. Prednisone not only spikes blood sugar, but thins bones and causes more cataracts all of which hubby are already having issues!!

Hi @caretakermom
I am happy to hear that both facilities are on MyChart for easy access to the biopsy results.
Maybe the biopsy results will available on MyChart in tbe next couple of days, and the med discussion can be moved up too.
I can totally understand the urgency you are feeling about prednisone. My Aunt was put on prednisone when she was in the hospital for pneumonia. She is a diabetic and it took her weeks after stopping prednisone to get her sugars back in order. It was very upsetting, so I completely understand how you and hubby are feeling.
The sooner this gets resolved, the sooner we will all be happy!

@hello1234

Still waiting for the bone marrow biopsy results. Meantime, other test results are coming in and the UCLA hematologist is responding as they come in saying "looks better, but, let's see what bone marrow shows". The CMV result is negative.
I asked him if the blood counts improvement was due to blood infusion or pause from Everolimus he says it's most likely the latter!!

Hi @caretakermom
Thanks so much for the update. I can't wait to hear what the bone marrow biopsy confirms.
(I find it interesting that the hematologist is so familiar with Everolimus).
I am happy that we are at the two yard line towards getting this resolved for hubby!

@hello1234

Our hematologist is also an oncologist so he has a lot of cancer patients on this drug. He has seen such anemia cases many many times, more in cancer patients becuz they take a much larger dose!! He is not happy hubby is on Everolimus.

@caretakermom
I had no idea that Everolimus was used for cancer. I learned something new!

@caretakermom, it sounds like your local nephrologist (home neph) is coordinating with the Mayo Clinic nephrology. If you have any questions about your husband's transplant care, don't hesitate to contact Mayo Clinic through his patient portal account or with an appointment coordinator at Mayo AZ https://mayocl.in/1mtmR63

@colleenyoung

Hi @colleenyoung ,

My husband is the kidney transplant patient from Mayo Az in March 2022 - we live in Calif. He's currently experiencing issues with severe anemia that our hematologist believes is due to one of the anti-rejection drugs. Our home neph has informed us he is not in a position to resolve this because he is NOT a transplant nephrologist so he is trying to work with the Mayo Az transplant nephrologist.
Mayo says to get bone marrow biospsy - results should be available soon.

Question we have is if we feel or on the recommendations of our home neph that we should connect with a Mayo Az neph, would we able to schedule an appointment with one of the Mayo Az nephrologists - hopefully one that husband has seen previously? Does Mayo Az accept appointments from kidney transplant patient who has past the 3+ year mark, or does it refer back to the local/home nephrologist? Feeling we will probably need to talk to Mayo Az nephrologist because the resolution may be a change/modification of current transplant regimen that requires consultation from a transplant nephrologist.