Transplant patients - anyone get anemia or Parvo Virus?

@hello1234

It's 12:45 AM 07/28/26 and just notified test results completed.
Parvo Virus PCR is "undetected". Hubby has GI procedures Tuesday around noontime so we'll have to wait for results to rule out internal bleeding - I don't think it is.
Hubby also seeing hematologist/oncologist Wed afternoon hopefully he'll do a biopsy to show bone marrow is functioning properly.
If all the testings come back normal then it's got to be the Everolimus. Home neph says Mayo not happy staying with lower dose so IDK what is the solution. Mayo Az will have to make the meds change/adjustments because home neph cannot recommend what medication to switch to - he's NOT transplant specialist! We do not have office visit again until 09/01/26 which is about a month from now.
I'll contact our neph first thing in the morning re test results - I feel so bad about bugging him because he is extremely busy. Am lucky he gave me his cell number.
What else do you suggest I can do? Very worry!!

Hi @caretakermom
So sorry for the delay in response.
I am very happy to hear that the Parvo virus test came back "undetected". That's excellent news.
Has hubby retested his CBC since your local nephrologist reversed back to the original pre-anemia dosages?
Did your local nephrologist mention any thoughts regarding a med change if all is well with the other tests that you have scheduled this week? .

@hello1234
Yes CBC hemoglobin went up a bit 8.4 to 8.6 but different labs. The former is UCLA and the latter Quest. Now in the hospital waiting for hubby to recover from GI procedures. The UCLA GI doctor is greater says hubby has clean colon but found some minor ulcers in stomach lining. Gi dr will prescribe medication which should clear up. GI doctor has ruled out internal bleeding so that's a good thing.
Next home neph says to see hematologist to test bone marrow is working well. One of the labs shows the reticulocyte count is low but home neph thinks it's cause the Everolimus is suppressing the count. I suspect the hematologist is going to do bone marrow biopsy to test. If biopsy comes back with bone marrow functioning properly then it's got to be the Everolimus. Home neph says he personally agrees that it's Everolimus but have to prove to Mayo Az it's not not these other factors that could be contributing to anemia. Hope they get this sorted out soon. If hubby has to meet with Mayo Az, I'd rather start the process now to get appointment with Mayo Az transplant neph. They will have to be the ones who can determine what meds to switch to or what dose of Everolimus is OK to keep hubby's kidney from rejection. Again, home neph cannot make this determination.
Home neph also says we will know the meds is the culprit if the reduced dose of Everolimus is going to improve hemoglobin GRADUALLY. Next appmt with him is 09/01/26, says it's OK to be on reduced dose for a few weeks.

Did your home neph say it was OK for you to be on a reduced dose? Did you work directly with your transplant center on the change of dosage?

I'm sitting here in waiting room for them to discharge hubby. Sorry if I'm being redundant and not making much sense. Love to hear you inputs!

Hi @caretakermom ☺️
Excellent news regarding no internal bleeding from the GI tract!
Excellent news, regarding no Parvo!
(Soon we will get excellent news from the hemotologist or bone marrow biopsy).
I think your home nephrologist is right on track working the "anemia" checklist, to prove it's the immune suppression.
It sounds like he is very familiar dealing with the transplant centers.
The transplant centers don't like to change immune suppression meds or dosage until every other option has been explored.
But don't worry, if nothing else is contributing to the anemia, the transplant center will either reduce the medication or make a med change.
Has your local neph been calling the transplant center to speak with one of their transplant nephrologists in your behalf?

@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!

@caretakermom
Thanks for reminding me of hubby's history of over immune suppression.
I completely forgot about the recurring CMV virus.
Do you happen to remember the Mayo AZ transplant nephrologist that made the switch to Everolimus?
If not, do you know how to log on to the Mayo portal to check the clinical notes by the doctor to get his name?
Maybe your local neph can request to speak directly to that doctor about the Everolimus situation now.
Regarding your concern about running hubby's immune suppression too low right now, what blood level Is hubby's Tacrolimis now? Is he 4 or 5?

@chickytina my numbers always low. My hemoglobin is falling and at 8.1. My hematologists just days watch. I’m anemic, and more tired a weak, getting ready for international travel. Don’t need transfusion but curious what bi-weekly shot you get to increase hemoglobin. Appreciate any help. Thanks

@mkhogan I get the Epogen injections bi-monthly when needed. First they have to check my CBC panel for my hemoglobin level and then if below 10 I get a shot. I only get transfusions when I get down to level of 6.

@chickytina
thank you!

@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...