Liver transplant with CMV infection

Hi Smiles @preetismiles, I’m going on 19 years post pancreas transplant. After the transplant Valcyte (antiviral med) was one of the many post transplant meds I was prescribed. The post transplant labs kept a close watch for any problems such as rejection, infections, viruses, blood count disturbances etc. After awhile some of the meds were discontinued such as antibiotics and the Valcyte. The post transplant lab frequency reduced over time. One lab draw revealed the presence of CMV but I too was asymptomatic. The Valcyte med was resumed until it was no longer detected in a lab draw. I don’t know if that helps answer your question. Congratulations on your liver transplant. 2 months is not a very long time. I promise things generally settle down in time. The early super vigilant monitoring will be worth it. What immune suppression are you on? How are you feeling?

Thanks for your reply. I am on tec level 6 -8 and cellcept 500 mg twice a day. I am feeling well and energetic. I am doing a mile walk everyday morning and evening. Can do more walk but going slow as it’s too soon. Waiting for quarterly visit to know more about my health. As per your experience it looks we may need to switch on valcyte when needed. Once it’s stop doesn’t mean it stopped forever. Is it true?

Congratulations on your transplant. WOW sounds like you're experiencing a wonderful recovery. I was a year out before I could walk around the block. Welcome to the club. 🤗💞

Smiles @preetismiles I’m not really sure what you mean by “tec level 6-8”. Do you mean Tacrolimus and a goal of drug level 6 - 8? No matter. I was just curious.

We were talking about CMV. I think once it is identified in your blood you are considered CMV positive. Many people are and don’t even know it. You can be asymptomatic and it isn’t a problem at all. When you are in a post transplant situation everything is monitored closely (especially at first). One of the reasons for this is being immune suppressed (to prevent rejection) and allowing your system to adjust to the immune suppression. CMV will be monitored in the post transplant labs and Valcyte may be added to your meds from time to time to keep it at an acceptable level.

A story from my own experience. As I said I’m post pancreas transplant going on 19 years. CMV was identified during the pre-transplant evaluation. Valcyte was in the mix of meds post transplant (I think for nearly 6 months). It was eventually discontinued. But sometime during the first few years post transplant the CMV was found to have increased and the Valcyte was restarted temporarily for a time then discontinued again. Eleven years later I was back having a pre-transplant evaluation, this time for kidney. During the pre-transplant evaluation CMV was again detected and again it is low level, not active and I’m asymptomatic still (7-8 years after that). It is just one of the many things that needs to monitored as part of the transplant world.

Hope that explanation and story sheds some light on the CMV topic. Do you trust your transplant team? Hope so and know that they are monitoring things and helping you to care for your precious transplant! If you have further questions or concerns do you have a coordinator you can go to for more information?

You can need to take it again if you have a positive CMV count. But will stop again once it resolves

Hi, @blairbear1681. I would like to extend a welcome to Mayo Connect as I see that this is your first public post! It sounds like you might have had some experience with CMV at some point since your transplant. Thank you for your encouraging words related to CMV.
I transplanted with a liver and kidney in 2009 at Mayo Rochester for PSC. I did not have any episode(s) of CVM, so I really appreciate your participation! Are you comfortable to share a little about yourself? What organ did you receive? How long ago?