Transplant patients - anyone get anemia or Parvo Virus?

Hi @caretakermom
I feel badly that hubby is dealing with this new issue. I understand that he had both immune suppression meds increased at the same time to get back into his target ranges back in March.
How many blood retests has he done since the immune suppression med increases, and have all the tests shown that he is now in target but also anemic?
Important: Has his WBC also been affected and is now low too?
If so, it's not internal bleeding and I would skip the colonoscopy. (You can always ask for the mail in Cologuard test that identifies blood if you want, but if the WBC is low too then internal bleeding is probably not the problem).
The low RBC and WBC is most likely the immune suppression med increase, right?
Does your husband have any Parvo virus symptoms? When will get that result?
What is hubby's current dosage of Everolimus and Tacrolimis, now that he is back at his target? Has he ever taken these dosages before or is this the first time he has been at this high of a dose for both Tacrolimis and Everolimus?
Do you think he may be over immune suppressed or do you think it's something else?

I had my numbers all come back low other than the size of the cells on my CBC panel. My hemoglobin levels have always been on the lower side, but went down to 6.4. I needed a blood transfusion (twice actually). I had had a colonoscopy and endoscopy done (I don't remember if they had been done prior or after finding out about the low numbers, because I was also having GI issues). They had me do a bone marrow biopsy to rule out cancer, which was thankfully negative. Then I started on shots for anemia. I was going once a month at first and now every other month to have my CBC panel done and if needed I get a shot to increase the production of my hemoglobin. The shots have generally been able to get my numbers up. Even if I need a shot my level is closer to a 10 and I haven't needed any more blood transfusions since last June.

@hello1234

I'm so glad you responded. I'm so concerned about this because hubby is very weak - low hemoglobin.

Just found out he is anemic when met with home neph on 07/10/26 per lab results. Since then 2 more CBC have been done, 2 with RETICULOCYTE COUNT.
His WBC is lower at 3.4 but not terribly low.

Have to get colonoscopy and endoscopy - did a Cologuard at UCLA and it shows occult blood presence! Wish he can skip colonsocopy though.

I think the anemia is caused by increased in txplant meds, esp Everolimus, but Mayo Az does not agree. Told home neph to check for Pario Virus B19. Have not even heard of this virus and neph has NEVER checked for it. Now waiting for result, Quest estimates available on 08/01/26!!
Home neph says to reduce Everolimus back to pre - anemic dose which is 0.75 mg BID, tacrolimus increased stayed at 2.5mg BID(from 2.0mg BID). Don't think it's the Tac increase because have increase to 3 mg, BID prev and no issues. Home neph says for now revert back to 0.75mg on Everolimus (so not in trough range; it's about 0.5 off). Home neph says Mayo Az is "not happy" to permanently keep at the lower Ev dose because not in trough range. This is the first time we have increase Ev dose(in March 2026) and the increase is quite significant from 0.75mg to 1.25 mg BID, then to 1.25mg/1.0mg am/pm, now adjusted back to 0.75mg BID while it's being sorted out.

I think he might be over-immuned(too immuno suppressed), thus causing Pario Virus to
surface - but I don't know for sure. If I'm right I don't see any way they can fix it unless switch out Everolimus. Home neph says RETICULOCYTE COUNT low because the medication is suppressing hormone from producing normal level.

I don't know much re Parvio virus and the symptoms from others who experienced it are very low hemoglobin and pain(headache or joint pain). Hubby not experiencing any pain but hemoglobin dropping. Hope he can make it thru colonoscopy and endoscopy.

Home neph will need Mayo to make txplant med adjustments(if necessary) but do you think hubby (patient) should work with Mayo transplant neph directly? I don't know if they like that because I heard that once they turn over care to home neph they don't really like to follow patient. I think they should make exception in this case because home neph is not transplant specialist and cannot make these transplant related meds!! Mayo Az should be willing to see hubby, esp if they bill the insurance for the appointment, don't you think?
Mayo Az also says to see a hematologist because I think hematologist will administer IVIG if positive Pario Virs PCR? This has been related to me by home neph via text so not a lot was said. Hubby has hematologist appmt this coming Wed, lucky to get it that quick because had to squeeze him in. Hematologist booked out to mid Aug!!

I'm very concerned about how we can get help from Mayo Az to help get medication sorted out. I may have to involve the UCLA PCP - don't really want to involve him because at first he was having us go down a rabbit hole because was not even looking at transplant meds.

Our home neph is extremely busy so idk if he would have the time to expeditiously work it out with Mayo Az and might be quicker for us to reach out to Mayo Az directly. Mayo Az took 3 business days to get back to home neph. I think it would be wise for home neph call Mayo Az and ask them to set up an appointment to see hubby?? I don't really know what the protocol is for 3+ year post transplant patient to request appointment.

Sorry for ranting but I've been extremely concerned ever since his hemoglobin has been getting progressively low. We are hoping to find out more details this coming week with results from GI, hematologist, and Parvo PCR. I also think hematologist can do bone marrow biospy to determine if that is the issue(I don't think so). Looking forward to your inputs/suggestions.

@chickytina

Thank you for your inputs. Are you a transplant patient and what was the cause of your anemia? Was it Parvo Virus B19? UCLA PCP says they do not usually give blood transfunsions to transplant patient because it can cause antibody in the blood to attack the transplanted organ.

@caretakermom 🙂
I think this is going to turn out to be easy to solve after all this testing is complete.
I think your local nephrologist is very smart to back down on the Everolimus to see if that helps to solve the anemia.
Has your hubby taken a CareDx Allosure blood test (or similar test) to determine his risk for rejection?
It may be his target range for Everolimus is set a little too high for his body and the increase in medication is causing unnecessary over immune suppression.
That's what happened to me.
I got sick with CMV.
I got sick with the BK virus.
I was running over to the local cancer center for shots to bring the numbers up.
All do to over immune suppression.
Once Mayo adjusted the meds down, all was beautiful! I take a CareDx Allosure blood test every 90 days to confirm low risk of rejection.
Now that your local nephrologist has wisely adjusted back down, has hubby retested?
Don't worry about the colonoscopy. It's not unusual for the Cologuard to be positive for a little blood. How old is hubby?
When will we hear back about the Parvo?

@hello1234

Follow up to my first response to you.
What do you know about Parvo Virus and its prognosis. Want to prepare for what is coming down the pike.

@caretakermom
If I remember correctly @jennifer0726 may have experience with Parvo. Jennifer, are you there? 🙂

@hello1234 @caretakermom
Hello friends,
Sorry to hear you are going through this, but I haven’t had experience with Parvo. (also thankful!)
I do have a great tip to make the colonoscopy easier, though from an OR nurse many years ago. I have had many colonoscopies and several at Mayo post transplant. Here it is:
Suck on hard candy right before and WHILE drinking the prep. If one has low kidney function, they usually want you to do the big prep. This tip has helped me have a perfectly clean colon and perfect Boston Bowel Prep Scores. An extra tip, A&D Ointment is also helpful to apply prior to starting and during the prep. Saves the bum.
The only time my hemoglobin was low was post op in 2023, and it didn’t improve until I could get back to eating red meat.
@caretakermom I hope they figure this out soon!
Jennifer

@caretakermom
If I remember correctly @danab1968 ( formerly @danab ) may have some experience with Parvo.

@rosemarya
Hi Rosemary! 😊 I hope all is well with you! Do you remember some of the transplant patients that mentioned they got the Parvo virus?
@caretakermom is trying to find out about it and it's prognosis. I remember several members mentioning that they had it and recovered nicely.

@jennifer0726
Hi Jennifer! 😊
Thanks so much for jumping in! I always love to hear from you. Awesome tip on the colonoscopy prep.
You are correct about that the BIG JUG of prep solution. It tastes like drinking a jug of turpentine. The hard candy idea sounds like a lifesaver!