What's gonna happen w/ my decompensated liver disease?

I’m wondering if anyone with ESLD /decompensated cirrhosis has or had bouts of severe fatigue, dizziness with difficulty walking, etc. I’m currently listed for transplant, but trying to find a living donor as my MELD is still relatively low. I have a pretty low quality of life right now with these issues ( plus ascites, portal hypertension, etc). I just want to know if anyone else has been affected the same way. I’m frustrated!
Thanks!
Chris

I’m sorry you’re afraid and so unwell. If you’re going through the transplant evaluation that’s a great thing, and medication and other procedures will help manage some of your symptoms. Talk to your transplant team, do everything they say, and please stop drinking - there’s help for that too. Again, as your transplant team, they will help.

Sending positive thoughts and angels.

Kelly

You are doing the right things. We can relate as to how scary this is as we have been/are going through it too.
Great advice to stop drinking. That is really really hard at a time when you might go to it but cool, cool. Good for you ! Both my sister and a friend stopped and were much happier for it. And you have extra incentive. I had a full liver transplant a year and a half ago. Cancer caught by accident, 70 tests by insurance co locally and then 15 more by Mayo in AZ. Made the list and despite blood type I was called to fly down to AZ in less than a month. Could not go to the hotel, had to go straight to Mayo from the airport. Recovery was no walk in the park but doable. Almost 2 months living in a hotel in AZ. Trips to Mayo every other day for testing. At the hotel 6 Mayo liver transplant patients. At least one woman in each pair (patient & caregiver). The gals would meet at the pool after dark when it was cooler and share what was going on and some wine. They still keep in touch (4 in CA , 2 in CO) via text and report card is 4 are doing great, 1 ok out of the 6. Hang in there. Stressful and hard but everything is doable and you can do it !! Prayers up to you !!!

Stop thedtinking with strong support. I was In same situation. O had to be in rehab program and show i was attending support meetings to be accepted to mayo. They do not accept if you aren't. I knew of another from my town who didn't quit drinking and is now passed. You wo survive if you do stop drinking. The good and very hopeful news for you is that you CAN quit drinking. Today we are lucky. Great medical support a great AA support. There are meetings in every town and country. Grab yourself a great AA sponsor and do everything your team of doctors. My doctor told me she had a team of people waiting for me when I was admitted to hospital. I had no idea what that meant. But 6 years later, I am sober, healthy and living a life I didn't dream I could have and ENJOY without alcohol. It is doable. Keep the hope a grab hold of those supports.

First thing stop drinking and smoking immediately no matter what it takes you will be tested for it and if you fail you get kicked off the list, if you are being drained your liver is failing towards my end it was every 2 days, getting a transplant isn’t something to be afraid of I was celebrating getting mine 2 1/2 years ago and I was 62 at the time, you can do stay healthy and stop drinking or anything else, I hope it goes well for you

Thanks, Kelly! I haven’t drank in years, so that’s not a problem. I was listed for transplant this year in March. I appreciate your support!
💕Chris

Omg you had to get your stomach drained every 2 days sorry, n Thank you, have a good day 😊

Sorry, I’m new. I just realized you were referring to someone else, not me. My bad! Take care!

I am so sorry. I thought I was replying to a post from a new person who’s terrified.

I was in ICU most of 6 months from start to transplant I waited on the list 3 months 7 altogether from diagnosis