Transplant patients - anyone get anemia or Parvo Virus?

@hello1234

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).

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?

I want to bring this discussion back to the question persented in the title: Transplant patients - anyone get anemia or Parvo Virus?

@caregivermom you asked if anyone ever had an episode "where you're anemic and your CBC panel is low?" As I recall, your husband is currently experiencing such an episode - and that the Parvo Virus has been tested and ruled out as the cause of his anemia. In a couple of weeks he will be having a bone marrow biopsy in a couple of weeks to investigate a possible clue about the anemia and fatigue.
I sincerely hope that the results will provide some information that will lead your doctors to a cause for the anemia. Hopefully after that test, your doctors will know more about whether his medications are the culprit. And that is when your transplant doctors will be able to make adjustments, if needed.
Remember that the immunosuppresant meds must be at a level that prevents rejection! Also remember that everybody's transplant medications have been individually prescribed, because each of us has different genes, responds differently, and has different medical history.

@caregivermom, Will you have to travel to UCLA for the biopsy? Will there be any preparation beforehand? How will you and husband spend the next 2 weeks?

@rosemarya

The bone marrow biospsy will be done at a UCLA lab facility. Yes he will have to prep for it. He has had one done before prior to transplant so it's not a big deal. Our local neph, hematologist and myself believe the culprit is the Everolimus but hematologist ordered bone marrow biopsy at the request of Mayo Az transplant team via our home neph.

I got the hematologist office to write him a note for work indicating it's medically necessary for him to travel NOT to work at this time - he will be working remotely from home.

Yes I'm very concerned about the rejection medication. I was told by our home neph(who spoke to Mayo Az) to temporarily take him off Everolimus, replaced with prednisone but continue with Tac as before until he recovers from anemia. After anemia is gone, the nephrologist(s) will decide whether to restart/change txplant meds. My preference would be to stay with current med but with an adjusted trough range but that's up Mayo Az.

It's a little frustrating now because everything has to be done thru home neph who has to reach out to Mayo Az for advice re txplant medication. Wish we could deal with the Mayo Transplant team directly.

@hello1234

You got it. But I'm still feeling anxious because I'm concerned about rejection being that hubby is off of Everolimus. I expressed this to home neph and he says that's what the prednisone is for. I remember Mayo Az also put husband back on prednisone during CMV saga. Hopefully Mayo Az agrees to restart Everolimus at the lower dose level, because it has been working well prior to dose increase!

@caretakermom
I wish we lived close by so we could meet for a cup of hot tea and a slice of cheesecake. My two greatest stress relievers!
I know you have been on high alert because I was getting stressed out too from this situation. I can only imagine your stress level.
That said, I am feeling much better tonight with this plan of action for hubby.
I think you are in good hands and have with an excellent plan.
And the prednisone is temporarily replacing the Everolimus as immune suppression. That is a very common strategy for this type of situation. So, don't be concerned about rejection during this transition.
Please continue to update as you get additional information.
It sounds like your health care team, including your local neph, UCLA hematologist and Mayo Arizona are going to work together to resolve this for hubby.
In the meantime, hubby's is stable and the anemia should resolve in the coming weeks.
Are you also feeling a little more secure tonight that things are going in the right direction?

@hello1234

Thank you for your reassurance. I do feel more at peace today now that we things seem to be moving in the right direction. I am concerned though about what our home neph is going to do about the txplant medication because it seems like we have exhausted all options. I hope that the Mayo team will be there to advise about that. Am trying to be optimistic and hoping for the best. I will update you as I get more information. Thank you for being there to support me!!