Replies to Hi! I'm new here but felt compelled to reply. I also contested a virus post transplant….

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Transplants | Last Active: Apr 23, 2022 | Replies (109)

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@dcbrenek

Hi! I'm new here but felt compelled to reply. I also contested a virus post transplant. I caught Epstein-Barr Virus with associated meningoencephalitis this past Christmas Eve. I was finally discharged on Valentine's Day. I was told I had a very severe case including "bright spots" on brain MRI. Since discharge, I have been placed on acyclovir 1 gram twice daily. Almost 3 months later now, I am still experiencing some fatigue and lightheadedness from time-to-time. The infectious disease doctor told me I was susceptible to this because of being immunosuppressed. Again, not too bad considering my life pre transplant, but a hurdle to overcome nevertheless.

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Replies to "Hi! I'm new here but felt compelled to reply. I also contested a virus post transplant...."

Colleen Young, Connect Director | @colleenyoung | May 3, 2019

@dcbrenek, I'm glad you jumped into the conversation. Welcome to Connect. What type of transplant did you have?

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JK | @contentandwell | May 5, 2019

Welcome to Connect, @dcbrenek I too had a liver transplant, in September 2016. Thankfully mine was uneventful. I had not heard of cryptogenic cirrhosis before so I googled it. The symptoms are pretty much the same as they were with my cirrhosis which was from NASH. The immunosuppressants can be a challenge, having to be so careful of not being exposed to germs, etc. I generally fly with a mask on now, and restaurant buffets are out of the question. I did catch Legionnaire's disease but that is pretty minor compared to what you are dealing with.

It sounds as if the EBV really caused a lot of problems. It must have been a bit scary when they had to cut back on the immunosuppressants and your liver was almost rejected, but it sounds as if those problems are history now, and I hope they will stay that was -- as history.

I hope the symptoms you are experiencing now will be over shortly, but as you commented, they are not as bad as what you went through prior to transplant. You mention not being in a big city, so did you have to travel far for your transplant? I live in southern NH and there is not any hospital in the state that does liver transplants. Thankfully Boston is only about 55 miles away so I went to Mass General there and they were fabulous.
JK

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