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Transplant patients - anyone get anemia or Parvo Virus?
Transplants | Last Active: 11 hours ago | Replies (68)Comment receiving replies
When you were going thru making changing to your txplant regimen, did you work with your local neph or were you able to meet with your transplant team to make the adjustments?
I sure wish the Mayo Az team finds a customized plan for hubby. And I wish we could work with them directly on that. Instead, I'm told by the Mayo txplant nurse coordinator to work with our home neph who is really the liaison to Mayo.
Next appointment with home neph is on 09/01 -- i think he's expecting to see hemoglobin improves and bone marrow biopsy result. At this appmt hopefully we can get clarifications of hubby's customized txplant regimen. I will definitely advocate for him to get off prednisone if that is NOT medically necessary insofar as it addresses rejection prevention. If we still need clarifications I will ask home neph to help us get an expedited video appmt with Mayo transplant nephrologist so that we can work directly with the Mayo team (Have already been told they will prioritize current txplant patients over us).
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Hi @caretakermom
Is this the plan?...
Currently hubby is completely off Everolimus, the offending drug suspected to be causing the severe anemia.
To replace the Everolimus, hubby is temporarily taking 5mg Prednisone until September 1st appointment.
The local neph feels that the anemia should begin to resolve over the next few weeks. (That will be the greatest confirmation that the drug is the problem).
Also, to double confirm that the problem is the Everolimus, the UCLA hematologist is preforming a bone marrow biopsy.
Then, on September 1, you have an appointment to meet with your local neph.
He will have all of this new data (the bone marrow biopsy result and a confirmation that hubby's anemia is resolving with the removal of Everolimus).
At that meeting, your local neph will give you his thoughts regarding the best plan moving forward to replace the predisone and then he will reach out directly to Mayo Arizona to consult.
It sounds like an excellent plan to me. Do I understand the plan correctly?