Complications post Heart Transplant

Posted by Dana, Volunteer Mentor @danab, May 19, 2019

Hi everyone I wanted to see if others are haveing issues with viruses and Hemoglobin. I am 16 months post Heart transplant. I was diagnosed with 2 different viruses one shortly after my transplant CMV and the other last November of Parvovirus B19. Ill start with CMV they put me on a heavy dose of Valcyte 900 mg twice a day. They tried once to take me off but the CMV came right back. The other virus it was detected in November ov last year and caused my hemoglobin to drop into the 6 range (normal is 14 to 20 but there happy at 10) which propted a blood transfusion and a ivig treatment over a 2 day period. Tjat helped mainly do to the whole blood which got me up to 10 fast. Well they thought we got it but this past February my hemoglobin dropped again and this time it put me in the hospital. More whole blood and a 6 day regiment of IVIG. Well i found out two fays ago the parvovirus is back. I have been working with a hematologist on the blood issue. There not positive its due to parvo. I know mayo said if this didn't work this time they want me to see a infectious disease specialist at Mayo. Im now waiting for approval from tricare to see the doctors at Mayo. Hopefully i find out tomorrow when i see my PCM. But my question is has anyone hade similar problems with parvo or CMV and how you were able to beat it.

Interested in more discussions like this? Go to the Transplants group.

My transplant liver came with CMV. I was on intravenious ganciclovir for three months and then valganciclovir for months off and on. I am currently virus free. The anti-virals are hard on the kidneys and lower white blood cell counts. My labs showed very low WBC a couple of times. I ordered neuprogen shots to boost the WBC. Yes, there is bone pain from taking the WBC booster. Better than the alternative. Good luck.

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