Transplant patients - anyone get anemia or Parvo Virus?

@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

Home neph ordered the test after talking to Mayo Az neph. I'm not sure home neph is familiar with this virus; otherwise, he would have added to his normal lab test orders. He tests for CMV, BK virus, and Epstien Barr, but no Parvo. I suspect from here on out he will adding it to his lab order on regular basis because it can recur.

Regarding the transplant meds, the home nep says Mayo Az has to be the one to determine drug dosage, trough level and whether a change of meds(Everolimus) is warranted. Remember a few years ago I told you hubby kept getting CMV recurrence when he was on Tac and Myfortic? At that time it was within 1st of txplant so Mayo Az was following hubby. They adjusted the Myfortic down each time when CMV tested positive, hubby would take the drug for the CMV, then when it clears Mayo would then raises Myfortic back to original dose level at which time CMV recurred again. This went on for about 9-10 months, finally was told by transplant neph to switch from Myfortic to Everolimus.
I hope hubby is not having the same issue with Everolimus - adjusted dose causing Parvo Virus. Because Mayo Az will probably have to dictate what medication to switch to, and I don't think they'd want to do that. They also don't want to lower the trough level for a smaller Everolimus dose; neph says Mayo "not happy" with pre-anemic dose!!
I guess we'll have to take it 1 step at a time to see what is the real culprit of his anemia. Could be
1. higher Everolimus dose 2. Parvo B19 virus. 3. bone marrow disorder?
Neph says Mayo does not believe anemia is caused by Everolimus per home neph.

@danab

Thank you for responding. Regarding the authorization from insurance, did you have a hard time getting insurance to cover it because you did not get prior authorization? Is this Medicare or employer insurance?

You say you got your infusions via Mayo but had you got your infusions locally, would the local hematologist have to work with the transplant team to set the IVIG dose? Hoping the UCLA hematologist can reach out to Mayo should he needs guidance from Mayo transplant nephrologist. Don't know if we are expected to make the coordination. Our home neph would not be able to make decisions re IVIG infusion dose.

At this time, we are waiting for the Parvo B19 PCR test result. I'm not entirely sure my husband has it because his only symptom is anemia - his CBC panel shows all blood count low/out of range. He is not experiencing any pain such as headache or joint.

What were you symptoms of Parvo B19? It sounds like your team warned you that you would have it since your donor had it, so they were watch out for it. In our case, we have never heard of it until Mayo Az told home neph to check for it last week!

I will be asking more questions as they come up. Thank you for volunteering to shed lights on this virus!

@caretakermom I was on Blue Cross Blue Shield Federal plan for transplant and was excellent for the transplant and first year. but after that it became non participating for MAYO clinic. that's what caused the problems. if I would have gotten my treatments at my Hemotologes clinic as they were participating in BCBS then it would have gone smoothly. It got a bit strange as this was during COVID and getting the prescription filled was the hard part. Mayo as a large hospital could get it easier as a pharmacy than my local Hemotoligy clinic which was on the mercy of an outside Pharmacy. So I was concentrating on that part but not the part about being pre approved which I was with BCBS but as an non participating Hospital at that time (after the first year) the approval did not really mean they would pay for the medication.it got really weird.

Now since I did get approved for disability from my job as a communication technician which required me to climb towers and I was already 58 my company was not able to accommodate me with a heart transplant so I got the approval for disability and after 2 years on disability from Social security I got Medicare. I've had it ever since. now on Medicare which is acted by Mayo I don't have those problems anymore. most things now I do at Mayo are covered. But only things having to do with transplant. I haven't needed any IVIG now on Medicare so I'm not sure if Mayo would cover it as it's really a blood disorder not directly tied to transplant. but maybe it is since I got the parvo from the heart. it hasn't come up again anyway. so sorry I can't answer your question.

As for doses and such Mayo has always worked with my outside doctors when it comes to dosage and other related needs. so I'm not exactly sure who decided the dose as both my Hemotologist and Mayo were sending messages back and forth.
As for location I had the actual infusions at Mayo Phoenix , But Ialso could have had it at my Hemotologist Clinic which is a Cancer center in Gilbert Az. That's where my Hemotologist who is also a cancer doctor (what ever they are called) So I'm thinking you could find a place near where you live to have the actual infusions.Most Cancer clinics are infusion centers also.
hope that helps.

@caretakermom 🥰
As always, I think you are doing an excellent job taking good care of your fabulous hubby!
Please keep me posted as you check off each box this week. Colonoscopy and Endoscopy results, and most importantly the Parvo blood test result from Quest.
I am confident that after all the results are in, your local neph will reach back out to Mayo Arizona for a consultation with the transplant physician in clinic. Once the results are available, Mayo will know whether hubby needs a dosage adjustment and IVIG infusions like @danab , or a a med switch, or something else. Mayo Transplant sees this immune suppression viruses, and how to resolve them, all the time.
BTW, your hubby is exactly my age. I asked about his age because I was concerned for the safety of a colonscopy. But it turns out, he is very young, so no worries there!
I am looking forward to hubby feeling better in a couple of weeks and this ordeal being behind you both. You and hubby will both feel better knowing what is causing the anemia and starting the treatment plan.
It will make me feel much better knowing that hubby is on a path to feeling better too!!
Please keep me posted as the results come in.

@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.

@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.

@danab

I think the "cancer doctor" is called an oncologist. My husband will be seeing a UCLA hematologist/oncologist who's office is local and there is an UCLA infusion center in the same medical building so that's a good thing. I'll be sure to ask about insurance coverage re IVIG at hematologist consultation.
My husband had Medicare(and employer insurance) at time of his kidney transplant but no longer qualifies after 3 year post transplant. I remember the Mayo Az transplant coordinator telling me that with Medicare it's always easier/faster to get prior authorization than other insurance with respect to IVIG infusion work. Hubby continues to work full time so we have Anthem Blue Cross PPO and fortunately Mayo Clinic is in-network in our plan.

@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.

@danab

Thank you for responding. Regarding the authorization from insurance, did you have a hard time getting insurance to cover it because you did not get prior authorization? Is this Medicare or employer insurance?

You say you got your infusions via Mayo but had you got your infusions locally, would the local hematologist have to work with the transplant team to set the IVIG dose? Hoping the UCLA hematologist can reach out to Mayo should he needs guidance from Mayo transplant nephrologist. Don't know if we are expected to make the coordination. Our home neph would not be able to make decisions re IVIG infusion dose.

At this time, we are waiting for the Parvo B19 PCR test result. I'm not entirely sure my husband has it because his only symptom is anemia - his CBC panel shows all blood count low/out of range. He is not experiencing any pain such as headache or joint.

What were you symptoms of Parvo B19? It sounds like your team warned you that you would have it since your donor had it, so they were watch out for it. In our case, we have never heard of it until Mayo Az told home neph to check for it last week!

I will be asking more questions as they come up. Thank you for volunteering to shed lights on this virus!