← Return to Living with cytomegalovirus (CMV) after liver transplant: Anyone?

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@craigcraig

Thanks Rosemary. The Mayo Arizona Transplant team Nurses are great. One or two are assigned to me and I get weekly emails re my medications. I ask them qs from time to time, they are great at responding and I emailed them twice on this. On long term prognosis. Not that they can know for sure but the likelihood of possible outcomes ? They were quick to respond, gave general CMV info but I am still unclear on the likelihood of this getting worse or better. Paraphrase they said if I get to no longer showing the CMV over time they will eventually stop the med for it. Still don't know if that is likley. Or the possible outcomes Mayo lists for transplant patients with CMV on Mayos website (mortality, blindness, brain damage, lung damage, etc.) are common (50% of the time ?, 10 percent of the time ?). I guess they don't want to give general info and its to early to tell anything for me. Thanks again.

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Replies to "Thanks Rosemary. The Mayo Arizona Transplant team Nurses are great. One or two are assigned to..."

Hi Craig, I also am a transplant Patient. And I also had CMV as others have mentioned. I took Valcyte as a protocall for 6 months as my doner heart had CMV but I had not had it as a child. I went thru treatment for it with valganciclovir 900 MG when it appeared after the 6 month mark after stopping the Valcyte. I took valganciclovir for almost a year and they tried once to take it off at about 6 months of taking it (11 months post transplant) then they took me off it at 1yr 8 months(Aug 2019) and I have not back on it since. Like Rosemay said Im tested every few months for it just in case. So I hope that gives you some hope in a full recovery from it. I also until I read your post had not heard of the side affects possible with getting it. As far as I know Ive had no ill effects from it. BTW my transplant was Jan 2018 so about 5 years since I had it. I like the odds.