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Transplant patients - anyone get anemia or Parvo Virus?
Transplants | Last Active: 57 minutes ago | Replies (67)Comment receiving replies
Hi @caretakermom @hello1234 is correct on what they did to take care of mine. I got the virus from my donated heart as I never got this as a baby which is usually when you do. But my donor did have it as a child it seems. The official name is Parvo B19. They started me on the IVIG therapy and eliminated one of my 2 Immosupressents. I now only take Tacrolimus and they watch it closely to keep it betweer 5-7ish range. They also test me twice a year now that ive been stable for about 3 or 4 years i believe. I remember around covid time we tried to take me off the therapies and had a couple of positive checks but they were low and now i haven't had a positive test since 2022. My last IVIG was 10/2021 I had about 7 treatments monthly at first then went to every other month. I will warn you tho I had a tough time getting Insurance to OK they are expensive. Make sure you are approved with your insurance before starting as I went thru a lot of pushing by Mayo and myself to get it approved after the fact.
As for getting Mayo's help , That's where I got my infusions, but I Also have an hematologist who could have done it in a local site also in Arizona and it would have been easier to get insurance to cover. I live in Arizona but except for heart related issues I get my other care thru a local PCP and my anemia issues thru a Hematologist.
Also since Im not having any rejection issues Ive stayed on the Tacro only. They check it every 6 months at an outside lab unless Im up at mayo for some other reason. I live 70 miles from Mayo in Arizona.
If they adjust my meds then they go to every 3 months for a while to see if it stays at a good level.
Funny you mention Hemoglobin as I have a tendency to be low. right now Im at 12.2 and its been going down for the last year or so. I'm probably going to make an apt with my Hematologist soon. I typically see him 1 a year since Ive been stable but I have been taking more naps lately and feeling more tired.
Hope I answered most of your questions. Please feel free to ask more if something else comes to mind. Sounds like you husband is having the same exact problem I had.
Blessing
Replies to "Hi @caretakermom @hello1234 is correct on what they did to take care of mine. I got..."
Do you also take prednisone? Hubby's home neph has taken him off of Everolimus, added predenisone. His new txplant regimen is prednisone(new) and Tacrolimus(same dose) until his anemia recovers.
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@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!