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CMV positive what now?

Posted by myringo @myringo, Dec 2, 2023

I tested positive for cmv on my Thursday labs. Called the 24 hour coordinator she said it was low it was 120 UI/ml. I haven’t been feeling good last couple days no fever or sore throat but GI issues. I am scared but she said its fine to wait til Monday. Anyone dealt with CMV? I am almost 4 months post transplant. Just trying to calm my nerves.
Thanks everyone

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Mentor
Cheryl, Volunteer Mentor | @cehunt57 | Dec 6, 2023

I’m 18 years post pancreas transplant. I tested positive for CMV prior to transplant. Post transplant the meds included (2) immune suppressants, antibiotics, antivirals (Valcyte), a troche to dissolve in my mouth and an a proton pump inhibitor (Prilosec / Omeprazole) for good measure to ward off gastrointestinal issues. Early on the the immune suppressants (type and dose) changed a lot. Eventually the antibiotics, antivirals and the troche were discontinued. One time during post transplant labs an increase was noted in CMV and I resumed Valcyte for awhile. It was temporary and I haven’t heard anymore about it in years. I also got off of Prilosec / Omeprazole after convincing the chart people that I didn’t have (never had) GERD!

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 7, 2023
In reply to @mkhogan "I had it. Found I had it and donar so became active after transplant. Mayo told..." + (show)
@mkhogan

I had it. Found I had it and donar so became active after transplant. Mayo told me many adultshave it in system dormant kind, of like shingles. Because my donar had it too, mine became active. Took antibiotics and eventually went away. Recurred once, back on antibiotics and gone now for years. My understanding is eas to treat but keep monitoring with medical team.

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Welcome, @mkhogan. It's reassuring to hear from others that CMV is easily treatable and you have dealt with it more than once.
May I ask what type of transplant you had? When?

REPLY
valbob | @valbob | Dec 7, 2023

My husband has been struggling with CMV for a while now. After liver transplant, in January, he was taking large doses of Valcyte and testing for CMV weekly. Once he stopped the valcyte he tested positive so was put back on the Valcyte which works until he has a couple of clear test results and stops the Valcyte. Is is an ongoing cycle. He is seeing an infectious disease doctor in January to see if he has any ideas. He main complaint with the CMV is extreme fatigue.
The post transplant life is a journey you take one day at a time, good luck and try and not let the bumps a long the way get you down.

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1 reply
myringo | @myringo | Dec 8, 2023
In reply to @valbob "My husband has been struggling with CMV for a while now. After liver transplant, in January,..." + (show)
@valbob

My husband has been struggling with CMV for a while now. After liver transplant, in January, he was taking large doses of Valcyte and testing for CMV weekly. Once he stopped the valcyte he tested positive so was put back on the Valcyte which works until he has a couple of clear test results and stops the Valcyte. Is is an ongoing cycle. He is seeing an infectious disease doctor in January to see if he has any ideas. He main complaint with the CMV is extreme fatigue.
The post transplant life is a journey you take one day at a time, good luck and try and not let the bumps a long the way get you down.

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Thanks for responding my Dr put me back on valcyte. He took me of microphenolate put me on Prednisone. I’m also on Bactrim
vitamin D ursodiol and Tacrolimus. I haven’t had a lot of symptoms. My Tac trough level decreased this time no idea why. I’m starting prednisone tomorrow. My white red cells and platelets are low. It’s a balancing act for sure
Take Care

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