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Transplant patients - anyone get anemia or Parvo Virus?

Transplants | Last Active: 57 minutes ago | Replies (67)

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@caretakermom
Just an FYI:
In an older thread, did you see @danab comment that he was given IVIG infusions for Parvo? It looks like IVIG infusions are intravenous immunoglobulin antibodies to fight the virus. Usually used in conjunction with lowering immune suppression.

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Replies to "@caretakermom Just an FYI: In an older thread, did you see @danab comment that he was..."

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

@hello1234

Yes I saw @danab comment. IVIG infusions is what I heard to treat Parvo(if hubby tests +). We are going to see UCLA hematologist and will ask if they can get prior authorization for infusion. Hubby is no longer on Medicare and has employer insurance so idk how difficult to get approved.

Home neph ordered the Parvo Virus PCR via Quest and the estimated result is 08/01/26 - blood draw was on 07/24/26. I hope to have the result in another 2-3 business days, before the Quest estimate date.