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Liver transplant - Let's support each other
Transplants | Last Active: 5 days ago | Replies (1572)Comment receiving replies
I had my liver transplant five years ago. I had CMV twice; the first was two months after my transplant, and the second was four months later. The first time I was given Valgancyclovir in pill form and it seemed to recede. The second time I was hospitalized and given intravenous Gancyclovir for ten days followed by oral Valgancyclovir for three weeks at home. I am tested regularly but it has never recurred. At the time, my doctors reassured me that they had other medications they could use if the Valgancyclovir failed to work.
I recall being very tired and breathless but I was having difficulty with some of my meds at the time and my doctors were unsure what exactly was causing my symptoms; the meds or the CMV. In retrospect, the first year post transplant is hard for most people and equally hard for our carers but recovering from the CMV and the change in my meds was a turning point for me. Within a few weeks I was better than I had ever been and I now take only Adaport each day. So...take heart. I know it has probably been a long haul for you and your carer but, believe me, you are over the worst now.
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Hi @wildcat, thank you for your reply - many aspects of your CMV story sound quite familiar. I am the worried caregiver and my brother is the one recovering from an early April 2020 liver transplant. Like you, the MDs are not sure if the CMV or the valganciclovir (oral - now that he's out of the hospital) and/or one of his other medications are causing some of his symptoms, including breathlessness, diarrhea and fatigue. After about 2 weeks anti-CMV treatment (7 days of IV in the hospital), the virus now is unmeasurable in his blood, but the MDs say it can continue to exist in other compartments in which it is more difficult to detect, such as the gut and, for example, cause diarrhea. Interesting story the MD told us that might be helpful for others: Another liver transplant patient cleared CMV in the blood but continued to have serious diarrhea. Turned out the virus was in her appendix and she improved as soon as they removed it (my brother no longer has his appendix, so not relevant to him). Everyone has such a journey after transplant. It is very helpful to receive the "take heart" message. I do hope we are over the worst!!