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

Posted by craigcraig @craigcraig, Mar 29 12:01pm

Hi. Almost 1 year to the day on a full liver transplant. Things have gone really well except for a 4th trip back to AZ for stenosis warranty work which has seemed to have improved. But now I have CMV virus. They have me on Valcyte and I trust Mayo, they are so good, but according to their site (and Cleveland Clinic, etc) it sounds bleak. I will have it for life. Blindness, brain damage, lung damage ? Can't find any stats on how often transplant patients with CMV just live with it np and how often the bad stuff. Anyone here have either experience ? Thx.

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craigcraig | @craigcraig | Jun 6 5:59am

Hang in there. Glad the Maribavir is working. I guess all with immunity issues do have the CMV for life. Its good you are seeing good doctors. It's understandable you are anxious. But it is early and I bet over time both your stamina goes up and your viral load goes down. It's good that you keep up with the drug. They do come up with new ones but this seems to work for you. I am sure if need be you will continue with insurance, I think maybe their are gov programs to help with cost, family for finances or help around the house ? But I don't think they can cut you off of the med regardless. I bet you will feel better and your load will go down over time. When the side effects from the drugs from my liver transplant are bad I think to myself at least I have a good liver. At least you have a good kidney (--: Prayers up.

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rachel5239 | @rachel5239 | Jun 6 10:40am

I got CMV also during my liver transplant. I will be 38 years post transplant on June 9th. I have never had any trouble with CMV so hopefully you will have the same result. Best wishes on your transplant journey!

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rachel5239 | @rachel5239 | Jun 6 12:05pm
In reply to @stolson1 "I am 6 years out on tacromilis - at when did the skin cancer start showing..." + (show)
@stolson1

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.

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I think it took at least 15 years before my skin cancers started showing up. I have only had squamous or basil cell. Very easy to get rid of if you get them checked. I always say, if something is new and is tender, get it looked at by a dermatologist. Best wishes to you n

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rachel5239 | @rachel5239 | Jun 6 12:08pm
In reply to @craigcraig "Thanks Rosemary. Was diagnosed a few weeks back. Bloodwork for my 1 year call with Mayo...." + (show)
@craigcraig

Thanks Rosemary. Was diagnosed a few weeks back. Bloodwork for my 1 year call with Mayo.
Never had it on weekly blood draws, then a low (load is it called ? )of under 100, then it went to around 850 and I go again Monday. I still do a weekly blood draw as I have the past year. Mayo's , Cleveland Clinic's and Pub Med websites all describe possible very bad outcomes for transplant patients with CMV but no hint anywhere are they common, rare, in between ? Thanks for your encouragement and advice. Have a great weekend.

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I also has CMV. I am 38 years post transplant and I never had an issue with it.

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