Liver transplant - Let's support each other

@athenalee - The content that you shared from your experience is appropriate anytime. This is a great place to share it. Members and viewers are always popping in to see what is happening in the transplant world.
Healthy eating and exercise, keeping a list of symptoms, and the emotions and trauma the real. I went thru similar experience in 2008-2009, and your list and references would have been a welcomed resource for me and my back at that time. And still important today!
Thank you.

@gman66, I would like to tell you that I am thinking about you as you complete your evaluation process. Even though you have not heard from other HCC patients as you had hoped for, I assure you that those of us who have had liver transplants, are ready and available to share from our own experiences.
How can we assist you as you move thru the evaluation process? Do you have any questions?

Do you live in the Jacksonville FL region? Do you know about the Second Chance Support Group, Mayo Florida?

Hi I am 5 months post transplant diagnosed with HCC, cirrhosis,fatty liver and liver failure all in one day at Mayo! I was sick for years and misdiagnosed from other so called drs. Had y90 in Aug tumor was rendered non viable got on transplant list and 6 months later I was blessed. I had to go for thoracentesis 3x week removing 2.5 liters each time I was drowning ..today I am doing great! Only complaint is weight gain but I'm working on that I wish you much success And if you're fortunate enough to be going to the mayo clinic you are in the best hands in the world. Good luck!

Thank you for your comment. I am new to this site and the whole process. I am currently doing work up here in CA for a Liver Transplant. My MELDS are 26. I am looking for virtual websites and interaction meeting to meet and speak and share with questions/concerns and everything.

This is wonderful that you are doing this. I am new to all this and my biggest issue is trying to find online virtual meetings to interact with others going through the same thing. Questions, concerns, what am I experiencing and should I be concerned and seek advise or is this normal process of the disease.

@karmamamma, Congratulations on your successful transplant! You are a champion. No doubt you are a strong willed individual to have come through all of these barriers. I am looking forward to learning more about your journey to transplant as you join in out transplant discussions. As a member, you can join in anywhere. A hint: If you want to address a question or comment to a particular individual, use their @name.

Are your doctors concerned about your weight gain? I was the opposite after my transplant in 2009. I needed to gain weight after transplant because I had lost so much muscle mass prior to surgery. I remember that at my 4 month check-up I was scheduled to see a nutritionist for advice on healthy eating and controlling weight. Since you are at Mayo, I expect that you will have access to a nutritionist. If this has not happened, you can request one.

Here is blog post by Mayo Clinic transplant experts:
– Weight Gain After Transplant: Where Does it Come From and How to Get Rid of It https://connect.mayoclinic.org/page/transplant/newsfeed-post/weight-gain-after-transplant-where-does-it-come-from-and-how-to-get-rid-of-it-2/

Your liver team should have a social worker on staff. When I was preparing for my liver transplant they were immensely helpful. During my hospital stay she visited with me daily (I don’t have family in the area and it was during Covid). And now she still checks on me when I go in to see my liver doctor. In fact, during the “interview” process you’ll go through to get ready for your transplant, you’ll find the entire liver team very approachable and happy to answer your questions.

Your hospital may also have a support group you can join now. We have people join ours prior to their transplant in order talk with us and ask questions.

This discussion on Connects and others in the liver transplant group are very helpful as well.

Be sure to eat well and walk and exercise as much as you can within your limitations. Talk with your doctor about your limitations if you’re not sure. The more in shape you are before your transplant the better off you will be.

I posted these articles here previously, they’re quite informative. The other doc I put together for our social workers as they’re putting together resources and tips from us transplant patients to help new patients such as yourself.

Best wishes for your new journey!

@jennkat73, I want to say Welcome to Mayo Clinic Connect. I am a liver and kidney transplant recipient, and although my transplant was in 2009, I can remember the emotions and fears as if it was yesterday.
On Connect, we are patients and who have a desire to share our own experiences to support others. We are here to answer questions and to listen to concerns and ease fears. And best of all Mayo Connect is available 24/7 and germ free!

I hope that your evaluation is going smoothly, although it is a lengthy exhausting process. What is a concern or question that is on your mind as you undergo your tests?

I wanted to join in the liver transplant discussion group, however I see the post are dated from a couple of years back. Is this still active? I hop so.