End stage liver failure

Hi, @dogdad - sounds like a very new diagnosis of end stage liver failure. Since this site is full of fellow patients who are medical laypeople, I don't believe anyone will have a precise prognosis for you. However, they may have some thoughts from their own experiences with liver failure, especially in the context of 3+ decades of heavy drinking and your age at 54.

I'd like to tag some members who may be familiar with end stage liver failure who can tell you about their lives after their diagnosis or that of a loved one @jkswcon @rosemarya @jeanne5009 @katebw @rstains. @agent @runninglykos @mollyb1968 also may have some thoughts for you.

What tests do you still have to complete, dogdad? How are you feeling about the end stage liver failure?

@dogdad I’m so sorry to hear of your diagnosis. I am 57 now and was diagnosed with end stage liver disease at age 53. I had a liver transplant 3.5 years ago. My disease stemmed from acute autoimmune disease versus alcohol, but when you get to “end stage” the origin of it has little significance. The significance lies in your treatment options- I know my liver team at MassGen requires at least 6 months of sobriety prior to being eligible for a transplant and they encourage active recovery based treatment such as AA if relevant . Are you currently drinking?

When I was diagnosed I was obsessed with my mortality and asked my providers how long I had to live, and was waiting for a liver futile? I felt lousy physically. Once I began taking medications prescribed, having a high protein healthy diet, no alcohol and tons of water to protect my kidneys— I did begin to feel a bit better and amassed significant new energy to get through all of the pre surgical testing- nuclear medicine stress tests, ct scans, dental procedures, mammogram and gyn exam, frequent lab draws, psychiatric evaluation, insurance issues…. Eventually I became so focused on being as healthy as possible and getting to appointments (I also was not allowed to drive) I worried less about dying. There is a lot that can be done by you and providers to get you in a better place physically, especially if you avoiding alcohol. It’s as if both diseases are worthy of being treated all at once.

A lot of concerns about life span relate to your underlying health- when I was diagnosed I was in otherwise decent shape and my only other medical concern was ulcerative colitis, which was linked to the development of my liver disease. I have had a pretty uneventful recovery and by now am back to work as a clinical social worker, waking up most days with renewed energy.

Has transplant been mentioned to you? When it was first mentioned to me I was stunned and still remember a feeling of fear in my body, like I was on fire. Eventually I adapted to this concept. I think I was someone who, by the time I was diagnosed there was little hope for recovery without a transplant. But I know that the liver can regenerate at certain stages- I imagine your providers are assessing the stage of your disease, the effects on other organs, and your treatment options if you cease alcohol.

All best to you- this is a great site of caring people; I wish I had discovered it when I was first diagnosed.
Kate

I was diagnosed 9 years ago with endstage cirrhosis. I'm 46 now I missed the call the other day for an organ. But right now I'm walking and looking like I don't have cirrhosis. It's a miracle. You can fight it just follow everything your doctor says and I still need a liver but I went from actually dying and they had given me two weeks to live to still holding on. It wA from drinking for 20 years plus