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

I had CMV also. At the time it had to be in maybe 3 places before they could treat it. Blood, urine and can't remember the last one. I got very sick waiting for it to be treated. Once they gave me the meds it went away pretty quickly. It does stay in your system for life but in 38 years post liver transplant, I have never had a problem with it. When I had it, the meds were still experimental.

Thanks so much Rachel. I have heard stories of folks that have beat the 5 to 7 year average for liver transplant folks but 38 years. Wow (--: . That is helpful for me to know that it did not do permenant damage to you (yeah). And another case of someone going long term with it. Gives me even more hope. Thanks for sharing !

Another thing I have had is a lot if skin cancers. I have lost count of how many Mohs surgeries I have had. Only squamous or basil cell. If you get checked they are not dangerous. I tell people if is new and tender, get it checked. I have been doing this for many years and they are showing up pretty often. But I didn't really have any problems for the first 20 years.

Thanks for sharing Rachel.

Thank you all for sharing. An update. I know , as many of you, I will have CMV for life. Will need to be monitored. But after 2 months of Valcyte my miraculous journey continues (my liver cancer had been caught by accident after a endoscopy of a different part of the body accidentally caught a tiny tip of the liver, where 3 tiny cancerous tumors were, despite blood type Mayo found a liver for me in 18 days, etc, etc, etc..). After a year of narrowing arteries, ducts, etc the stents seem to be holding and...... My CMV went from 850 to not detected two weeks in a row and Mayo is taking me off Valcyte. Thank you all for sharing and encouragement. You made a real difference in my life. Thanks again and happy Easter.

I am 6 years out from my liver transplant. I was diagnosed with alpha 1. I took Valcyte for the first year after my transplant. I was never told I had CMV but I did have mono as a child. I never went through any rejections but I did have 3 additional surgery’s that first year due to bile duct issues. I ended up with c-diff after one of my additional surgery’s, I have had every Covid vaccine but still ended up with Covid but probably milder than some. I am somewhat of a worry wart but what I have learned is to read less and try not to worry stress itself is hard on your health. I am also a stage three cancer survivor of ten years(nothing to do with my liver) and I have sometimes looked at those stats as far as it returning. Never in my life did I ever think I would be in a position to need an organ transplant - when i do run into health issues I self talk LOL - damn it Becky your not going to survive a liver transplant and die of COVID etc. I know I probably rambled - Congrads on your first year -

I am 6 years out on tacromilis - at when did the skin cancer start showing up ? I am on a pretty low dose- I am just curious since my Dr brings it up. Did you ever experience type 2 diabetes year three I was feeling crappy and sugars were 600 I was put on insulin shots right away three years later my 5.3 and I am off insulin. I was told it’s a common side effect of tacromilis. Wow on 38 years that is so awesome !! Thanks for the positive post.

Thanks Becky. I have bile duct issues too but so far no surgeries for that. Thanks for the good advice and congrats on your cancer and covid victories !!!

I have not had any trouble with diabetes. It was a long time before I started getting skin cancer. Maybe 15 to 20 years. I was in the sun a lot when I was younger. I have also been on predisone since I was 16. No one told me I should stay out of the sun. I have been very careful since my transplant but the damage was already done. My best advice is if you see something new and it is tender, get it checked by a dermatologist. I have only had squamous and basil cell. If they are caught they are easily treated. I don’t know anything about melanoma. Wishing you the best of luck on your journey.

I am not a Mayo Clinic patient but I stumbled onto this cite and joined right away. I had a kidney transplant January 29, 2025. My cadaver donor was a perfect match with me on all 6 tissue types but it was positive for CMV and I tested negative. I was put on Valganciclovir prophylactically the day of my transplant but was tested positive for CMV in March. My med was increased but but my nearly 12,000 viral load kept getting higher and it was determined a month later I was resistant to all the usual medication treatments and had a refractory case. I was admitted to the hospital to try some IV meds and some orals. They all failed until they tried Livtencity (Maribavir) so I've been taking that for a month with some success although my viral load goes up and down. I am still considered infected and I'm still extremely fatigued and very anemic caused by the medication. I am beginning to think this will never go away, and I'll never get my strength back. I can barely climb my stairs and just trying to do simple household chores makes me have to rest every 5-10 minutes. I'm being seen by both my transplant nephrologist and an infectious disease physician. They don't seem to be able to answer my questions very well about feeling better or what's in my future as far as this is concerned. Am I being too anxious about this? Has anyone else suffered with terrible fatigue and other symptoms for months? The Marbavir is very expensive (my copay is $1700.00 for 224 pills and I take 4 a day, but I can't afford this much longer)! Thanks for listening. Any information or helpful words will help.