Post Transplant Symptoms

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

Hi @contentandwell and thank you for the welcome! I had to travel about 250 miles (about a 4-1/2 hour drive) for my transplant. I live in West Texas (about in the middle of Texas) and went to Dallas at Baylor Scott & White. They were nothing but nice and professional, although I did kind of throw them a curveball with my recent EBV illness. An interesting aside, when I was ready for transplant, I made the 4-1/2 hour drive to attend Clinic in December 2017. My lab results were not read until later in the day, but I was dismissed from clinic. After making the drive back, I barely re-entered the house when I received "the call." I was told I was sicker on the blood labs than I appeared in person, so I had to make the drive back to Dallas that same day. I knew I wasn't feeling that good - my MELD score had jumped to 35 (putting me at the top of the list in my region). Anyway, thanks for letting me ramble and thank you again for the support!

Hi @contentandwell and thank you for the welcome! I had to travel about 250 miles (about a 4-1/2 hour drive) for my transplant. I live in West Texas (about in the middle of Texas) and went to Dallas at Baylor Scott & White. They were nothing but nice and professional, although I did kind of throw them a curveball with my recent EBV illness. An interesting aside, when I was ready for transplant, I made the 4-1/2 hour drive to attend Clinic in December 2017. My lab results were not read until later in the day, but I was dismissed from clinic. After making the drive back, I barely re-entered the house when I received "the call." I was told I was sicker on the blood labs than I appeared in person, so I had to make the drive back to Dallas that same day. I knew I wasn't feeling that good - my MELD score had jumped to 35 (putting me at the top of the list in my region). Anyway, thanks for letting me ramble and thank you again for the support!

Hi @contentandwell and thank you for the welcome! I had to travel about 250 miles (about a 4-1/2 hour drive) for my transplant. I live in West Texas (about in the middle of Texas) and went to Dallas at Baylor Scott & White. They were nothing but nice and professional, although I did kind of throw them a curveball with my recent EBV illness. An interesting aside, when I was ready for transplant, I made the 4-1/2 hour drive to attend Clinic in December 2017. My lab results were not read until later in the day, but I was dismissed from clinic. After making the drive back, I barely re-entered the house when I received "the call." I was told I was sicker on the blood labs than I appeared in person, so I had to make the drive back to Dallas that same day. I knew I wasn't feeling that good - my MELD score had jumped to 35 (putting me at the top of the list in my region). Anyway, thanks for letting me ramble and thank you again for the support!

@dcbrenek, That is fantastic! Please share what happened after you drove back ? Did you get the transplant right away? Did you have a caregiver??? Did you have a place to stay? I cannot begin to imagine how I could have driven anywhere after I got my call. I needed my husband to just guide me to the shuttle at the front entrance of the Gift of Life House!

@screen Wow, a long day! Glad you made it all safely!
Ginger

@dcbrenek Oh my goodness, having to make that drive two times in one day must have been tough. I hope you had company for the drive. I have a bad habit of being lulled to sleep in the car so if I am alone I often pull over and grab a brief nap!

That's great that the hospital was so good and on top of things. I hear nothing but good about all of the transplant centers, although I do know some are not as high performing as others. I cannot say enough good about Mass General. Since they are relatively close I go there for basically everything now, except for my PCP. I love that hospital and how thorough they are. My local hospital pales by comparison.

No need to apologize, your story is interesting, and the end result is good. That's what matters.
JK

@contentandwell: Thanks for putting up with my rambling. I go to clinic now every 3 months and have blood work drawn monthly. I couldn't agree more about the differences in my transplant hospital and local PCP hospital/clinic - like night and day. You're correct, the end result was good - and that's what counts!

@dcbrenek, I send a request for you to share your ‘rambling’ anytime and anywhere on Connect. Your experience is an inspiration to others who are currently waiting for their own transplant.

@rosemarya: Well, after arriving back in Dallas with a MELD 35, I was at the top of the regional list for transplant. I stayed there for 6 days while receiving treatment to get my lab numbers under control.. Then, on day 7, a liver became available and my second chance at life came true. I'm sorry I left the impression that I myself drove back and forth and back. My brother-in-law took me and brought me back. He was tired of course after driving 9 hours, so my backup ride took me back about 6 PM that same day, thank heavens. No, I was barely coherent myself being so ill and riding in a car for what turned out to be 13-1/2 hours. Encephalopathy kicked in upon arrival back. All I remember was hearing a doctor call my name and not being able to answer - like a bad nightmare. After transplant, I stayed at Twice Blessed House (a place for our of town patient's to stay on the campus of Baylor Medical Center). My caregiver was my Mom, bless her heart. She spent 5 out of 6 weeks with me in Dallas with a 1 week break when my sister and brother-in-law took over. So, my story i guess is a little different in that "the call" came before a liver was available for me. That's my story. Looking back, I wonder how we made it through everything we had to go through. But for the grace of God I guess...Thanks for asking!