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Cirrhosis of the Liver: What to expect when waiting for a transplant?
Transplants | Last Active: Aug 16, 2023 | Replies (104)Comment receiving replies
H Rosemary, thank you so much for your kindness and compassion. The denial pieces are really big pill to swallow. I just keep thinking I should have done something or could have done something and now I'm in this mess. I think it'll take a long time to not be mad at myself if ever. I have seen a GI doctor who specializes in hepatic disorders. I have to say that it has been rather a cold and disconnected process. He conducted an in office density test and this was the first time that I had been given the information that I was suffering with cirrhosis and his delivery was awful. "Density level shows that you are in stage 4 a liver sclerosis, which is the final stage". He then shared with me that I needed to get in an MRI elastography. With the MRI I found out that I am in stage 4; however, I am compensated and not decompensated. Which I don't exactly still know what that means but I'm so researching. I have seen him three times and I still haven't been given any type of information in regards to what to expect, what's next, a diet plan, or even life expectancy. I have no idea how this evolves. I'm so sorry I'm rambling. Thank you so much for reaching out, I can't tell you how much I appreciate your time. 🌷 Jimi
Replies to "H Rosemary, thank you so much for your kindness and compassion. The denial pieces are really..."
Hello, I had the same initial notification. Got a phone call. Yikes! I am also decompensated. There is good news though. You can live a long time with cirrhosis. Get some diet advice from a nutritionist familiar with cirrhosis if you can. Be sure you are screened for liver cancer regularly. I go to Mayo Jax every 3 months. Hang in there.
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@missi, I'm wondering whether your GI is collecting the information needed to make a diagnosis for the cause of your liver condition. When I was diagnosed, my GI had to do many tests then and consult with a liver specialist before a diagnosis was established. It seemed like forever! I had labs drawn every 4 months as he monitored me. In 2008, he sent me to the transplant center at UofKY where i was evaluated. I was later transferred to Mayo Rochester where I received a simultaneous liver and kidney transplant in 2009.
Here is a link to information about Liver Disease from Mayo Clinic Health Library:
- Liver Disease
https://www.mayoclinic.org/diseases-conditions/liver-problems/symptoms-causes/syc-20374502
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Jimi, You are among friends here. We all 'get it" and we all have felt the need to ramble and to clear our frustrations from our minds. I hope that you will find the information about diet and ways that you can take care of yourself while waiting to hear something from your doctor. I'll be back on line tomorrow.