What can I expect long term with cirrhosis?

Are you a patient of Mayo.?when I went to Mayo I was diagnosed and taken as patient. After my initial consult, referred by my outside doctor, Mayo put me through a week long evaluation. My liver status qualified me to be in their transplant program. I was followed and treated by them for many months and given a nurse coordinator to oversee everything. She was my contact for questions, concerns etc. I was treated with medication, ultrasounds, procedures to reduce as cited and natives to keep me stable until I reached level of qualifying to be listed for transplant. Whoever you’re doctoring with (should be hepatologist/GI doctor. Make sure you’re seeing a liver doctor ( sounds like possibly kidney too). They can treat and monitor with level of damage a scarring. They should look at MELD score. That is a marker used by Mayo for liver function level. Ask what that is and watch that level.
As for life expectancy, it is hard to predict and depends on level of liver damage and other complications that may result from that. Those complications are things they treat to stabilize you. There is compensated and decompensated level to describe liver. Transplant may be option if things progress a you qualify. In meantime, all you healthy living a changes can keep things working. I know people who were on the list to be transplant ed and then removed because the functioning improved. Work with good doctor, advocate strongly for yourself, ask lots of questions and expect answers. There is lots of help and treatments out there. Good luck

Hello there,
I have often wondered the same thing. How long? I also found the 12 year longevity when researching. I was diagnosed with cirrhosis in 2020. Since then I developed a slow growing tumor that was ablated in 2022, have been on the liver transplant list, taken off the transplant list, and been monitored by Mayo for six years. I too take Carvedilol to keep my portal hypertension in check. So far I have been fortunate enough to stay relatively healthy. I do not drink, however mine was caused by chronic hepatitis C that was treated with antivirals in 2020.
Long and short of it, I will continue to be monitored for any cancer return and try my best to prevent complications with diet, excercise, and a positive attitude. Since I am in my seventies I consider every day a gift and realize that something will take us all to the other side.
The uncertainty about time serves as motivation to be mindful of each day, every person, and the wonders of our planet and our universe. We are after all only a speck of dust or a small pixel in the big picture. Sending you good vibes and wishing you a great life.

I also found this calculator that you may want to check out.
https://www.hepatitisc.uw.edu/page/clinical-calculators/ctp
You can find the necessary test results, hopefully, in your medical portal or by asking your doc to provide them to you.

@mkhogan I had a month long evaluation by Mayo, then they just said go live healthy and you could live a long life. I now am with MNGI. I know that I am extremely lucky. For the most part I forget that I have it. Then something like an MRI for something else notes that my left lobe is completely atrophied. It’s just that when I ask questions I get vague answers like, “all you need is a small part of the liver to work “. I would rather they just say, “ we have no clue” if that is indeed the case.

@jum13 -
I think that those words to "go live a healthy life" are very similar to the words that my gastroenterologist said to me in my early years with a diagnosed liver disease. However, he added that "he was going to be monitoring my condition, checking my labs, performing scans/tests as needed, and that when or if I needed to see a liver transplant specialist-he would refer me. In addition, I agreed to follow his instructions and to focus on healthy eating, staying physically active, avoiding any alcohol or over the counter meds or supplements, plus maintaining my lab and appointment schedule. For nearly 9 years, I did that until my chronic progressive disease began its downward spiral, and then I became a candidate for a transplant. I am so appreciative of my GI for setting high standards for me to follow, and I am happy to share that I am now 17 years post transplant, and still have absolutely no idea of how long I will be blessed to enjoy a healthy life.

I made a personal decision along the way to ignore the statistical charts for how long I might live, or wait for a transplant because I had enough to be concerned about. I didn't even look at my MELD score because when I was in liver failure, my body was telling me all I needed to know. I guess that I'm different from other patients, but that's OK, because liver disease can affect each of us differently.
I did receive my transplant at Mayo Rochester in 2009, after being sent there from ICU in Kentucky. I trust that if you need the specialty care that your current MNGI will make a referral to where you can get treatment.

@jum13 I Want you to know that I am thinking about you and hoping that you can continue to live a healthy and long life for a long time. In the meantime, what kind of monitoring is the GI doing? Do you still have connection with Mayo?

Thank you so much for that uplifting success story!!! So glad you enjoyed the life that you have. MNGI is a very good organization and do a good job at monitoring things. I moved away from Mayo so I get my care elsewhere. I’m not afraid of what the future may bring, I just want to be prepared should I find myself in the spot you were in after 9 years. We are all different but ………

You got some great answers here. I find the same thing. They don’t know or like to give you a time frame for meeting your maker. I actually started my liver journey in 2017 with pancreatitis from clots in my portal veins. Testing showed the clots were from polycythemia Vera. I had all the testing but eventually the liver got cirrotic and have ascites, esophageal varices, portal hypertension, kidney issues. I probably had 3 alcoholic beverages in my entire life. I am now getting weekly Paracentesis. I’m told at 73 I’m too old for a liver transplant though my doc did say I could possibly get one from a living donor. My kids would do anything for me but I wouldn’t ask that of them. I’m ready to go when God wants me.