CMV ?

I had it posted transplant. I was carrier as well as donor. My understanding is many adults are carriers if virus from childhood often. Stays inactive but can flare when compromised. I had treated with antibiotics. Tested for awhile another longer positive. I guess i am unsure about have for life itger than carry in system. Kind of like shingles virus?? Sorry for my ignorance but never told it was an ongoing problem.

@craigcraig, Here is a discussion where other members have shared their experience(s) with CMV. I encourage you to start at the beginning, and read what they have to say. And you are welcome to jump into the conversation at any time! (Mentor TIP - If you want to direct your comment or question to a particular individual, include their @name .
- CMV positive what now?
https://connect.mayoclinic.org/discussion/cmv-positive-what-now/
I have no experience with CMV, but do remember being on Valcyte after my transplant surgery. How long age were you diagnosed with CMV? How was it discovered-did it show up in labs? How is it monitored?

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.

Your response, demonstrates the importance of our routine labs and an annual check-up with our transplant team. A CVM lab is part of my annual check-up and throughout the year, I do contiunue with my routine labs. One thing that I have learned to appreciate is that the team at Mayo, keeps close check on any changes in routine labs to be on the alert for anything that could indicate a potential problem - before it becomes a serious issue.

I think your team is doing the best for you, because your CMV is caught early, before those scarey side effects can develop. And that, along with the weekly blood draws give you the advantage! Have you shared your concerns about potential side effects with the transplant team? If you do not see them in person, I suggest that you contact your transplant nurse via the patient app and tell her/him your concernd and questiond just like you did here on Connect. What are your thoughts about messaging your nurse?

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.

I am in a similar situation to you. They started me on valcyte immediately post transplant (8 months ago). They adjust the dose to the minimum needed to keep my cmv load low. I assume I will take it for the rest of my life or until cmv load does not reappear after discounting valcyte - under controlled supervision by my doctor. I hope this helps.

Thanks Brin. Yes that helps and sounds similar. They currently have me at twice the normal recommended dose of Valcyte but said if the load stops showing up in weekly tests they will take me off it. Hoping for that if. Congratulations on your transplant. I keep hearing "it gets better" and I would say other than my stenosis (which has improved) and this new CMV thing my life after one year is downright pretty normal. My golden retriever loves that, more walks. Hang in there. Thanks again.

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.

Thanks Dana That is very helpful ! Here is a real live person who has had it also and is doing well after five years ! This will help me stay patient if I am on the extra drugs for a while. And hope for a good outcome.
Congratulations on your 5 years ! I like your odds too. (---: