Start of my Transplant Story

Posted by livertransplant91 @livertransplant91, Jan 23, 2022

Hello

I recently was told that I’m going to need a liver transplant. I start the evaluation process hopefully soon. I’m 30 years old and my latest meld was 25. Transplants run in my family…..my father will soon be 5 years post transplant for his liver. We both suffer from NASH or Fatty Liver.

I’m not worried about the procedure. I trust the doctors and nurses. What will happen will happen with that. I just wish I had some relief from the symptoms. Over the past three months I’ve had fatigue and swelling that has progressed. I have trouble sleeping because of it. To complicate matters (and make them better) my wife is pregnant with our first child. That’s a big reason I’m fighting. To be able to run around with my son one day.

I wanted to connect to folks who are in the same Boat I’m in or are post transplant. See if there is advice on things to do to or not do. Just any advice really.

Interested in more discussions like this? Go to the Transplants Support Group.

Rosemary, Volunteer Mentor | @rosemarya | Jan 24, 2022

@livertransplant91, Welcome to Mayo Connect! Starting your journey with this new discussion is a great idea! We all have to start that difficult uphill journey to an organ transplant at some point and it can be a lonely confusing time. I can't think of a better way to begin than to invite others to walk along and share the load.
As I read your intro, I can guess that you already have some amount of knowledge for what might be in your future. You have set your sights on an exceptional goal of running around with your son. That is perfect!
My first thought is that you will need a caregiver, someone other that you and your wife can depend on. Is there someone nearby who will be available to get you to and from appointments, to be an extra set of ears, and to fill in when your wife is not able to be at your side? She, likewise, needs to consider someone to fill in when you are not able to (temporarily) be at her side.

Are you being referred to a specialist like a gastroenterologist (GI) or are you already connected to a transplant center? What is the next step for you?

athenalee | @athenalee | Jan 29, 2022

Hello @livertransplant91. Welcome to Connect. You’ll find many discussions about liver disease and transplants. And, importantly a supportive community. I developed liver disease due to Primary Biliary Cholangitis. I had my transplant in August 2020.

I’m sorry you’re dealing with ascites. It does indeed make one very uncomfortable. Unfortunately, it will continue, but you might speak with your gastroenterologist about suggestions to find some relief. I was able to take a low dose of Gabapentin to help me sleep. I also used a product called CALM, which is relaxing and also helped with the cramps I was experiencing. Drastically limiting salt intake is also helpful…I quickly became a “label reader.” Eating as healthy as possible and walking/exercise keeps your body strong and helps you to be in better shape for your transplant.

Please let us know how you’re doing. You may find the attached article insightful. Athena

Shared files

LiverTransplant part 1 May2015 (LiverTransplant-part-1-May2015.pdf)

Rosemary, Volunteer Mentor | @rosemarya | Feb 15, 2022

@livertransplant91, I don't know if you have seen the replies here or if you have had a chance to read them, and so I want to bring them to your attention.

We are ready to walk with you.
Have you found any relief for your progressive symptoms? Have you been in contact with the transplant team or started the evaluation process yet? How can I help you?