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?

Thank you. Yes I exactly mean Tacrolimus and a goal of drug level 6 - 8. Last two weeks CMV stays < 30 without valcyte even slight elevated liver enzyme. Let’s see next week how would it look like. Scared but having trust on Mayo (Phoenix) transplant care team. BYW, how long it usually takes to get settled down to make my life near to normal life?

Hi @blairbear1681, Many thanks for sharing your experience. In recent lab although CMV is still < 30 from last three weeks but liver enzymes got abnormally high ALT, AST and ALKP. Dr has increased my Tacrolimus by 1 gm daily. Had ERCP too 3 weeks back. Does anyone have any such experience or advice? Others experience definitely help me to understand situation better.

@preetismiles after transplant you will learn to live with a “new normal”. The post transplant labs will monitor the presence of CMV and you may need to take Valcyte from time to time. Your immune suppression drug levels will also be monitored (Tacrolimus etc) and the dose will be adjusted as needed. The labs and levels pertaining to your liver function will also be monitored to make sure that your precious newly transplanted liver is doing well. Your providers will monitor this stuff plus more and make changes along the way to keep everything going well. It seems like a lot early on but usually settles down as more post transplant time passes. This is the new normal. (I can’t remember what “ERCP” is, but that is probably being dealt with also.) Hang in there and blessings to you.

I am a kidney transplant recipient. I got my transplant December 3rd, 2023 in San Francisco California. I am not a Mayo Clinic transplant patient. I just found this support group and joined today. I took Valcyte for 3 months after transplant. The virus was never present. A little after the 6 month mark CMV was detected. I was super worried. I restarted Valcyte. After about a month I have tested negative. I have been told to stop taking it and to check with labs every two weeks. I hope it doesn't return. Good luck. Keep up your meds as prescribed.