@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.