44M - Diagnosed Recently, kind of overwhelmed
Diagnosed with Decompensated Cirrhosis in early June after having bad bloating (later learned to be ascites) in April.
Been jumping through the hoops, went from PCP to GI Doc and now have a hepatologist and transplant team. I have a 3 day assessment next week which is kind of the last step of hoop jumping in the short-term I'm hoping. I quit alcohol on my own before even formal diagnosis, basically them saying we're looking more into the liver than colon now which was end of May. When cirrhosis came back alcohol just felt gross as an idea to me, no cravings so far at 4 months sober today. I'm working on creating a AUD and Relapse plan anyway with my psychiatrist they recommended. Haven't tried AA, don't think I need it, but it may be a condition of the evaluation I'm told.
Main stats are MELD 19-23, most recently settled in around 20. Feel more stable, but just not worsening and getting meds right rather than feeling like I'm truly returning to a workable baseline.
Here's what I have and haven't had symptom wise:
-Ascites: Started the whole thing and eventually messed with appetite, breathing, sleep. Had 3 paracentesis so far 10.5L, 7.5L, 6L. Diuretics are finally helping now that I'm on my 3rd dose increase so it is not filling near as fast.
-Extreme Fatigue: Heavy sarcopenia, lost 50lbs probably more muscle than anything, approaching a skeletal look, but on new diet and appetite back I've been able to slow it dramatically. The weight loss is tiny now, but fatigue is still brutal. Walk up stairs, sit and take a break, move a few things 10-20lbs I get terrible cramps, dizziness, near syncope and a long nap usually. Have 1% endurance compared to before symptoms (not an exaggeration).
-Hepatic Encephalopathy: This one is rough as well. No confusion or coma or the heavy symptoms. But forget things in seconds, lost trains of thought are gone, can't remember tasks even 2 simple tasks I lose one at least. Sleep is reversed and only in 2-3 hour bursts. Lactulose has stabilized this but not improved it much if at all. Can't really trust my brain.
-Bleeding: Been lucky here, no blood in stool and no varices to band on endoscopy. Still we jokingly say I'm leaky, platelets and PT/INR are quite a bit off so if I get a minor injury it takes forever to stop bleeding, and I just sort of get nosebleeds or things with no trauma.
-Several smaller symptoms, but more curiosity than brutal. Damage isolated to liver right now, kidney/spleen/pancreas/etc. have remained solid. No ER visits and just a couple urgent care checks on things.
I've also been able to get my diet more solid last few weeks now that I have actual hunger. Mental health is holding pretty well. Support structure with my family has been awesome and supportive once they learned more about it.
Just meant as an intro and a few questions.
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How screwed am I? (Done quite the research, but it's been all over the place)
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Any best practices for the 3-day evaluation next week? Except follow instructions and show up with caregiver.
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Does dropping my MELD 3 points actually help at all? I feel like healing would be great, but unless I'm recompensating near fully for a while it almost seems worse to sit in purgatory with these symptoms waiting to get sicker to get listed or actually get an organ. Maybe totally wrong attitude.
Anything else anyone wants to share or questions answered I'm happy to. Thanks in advance for your time and attention!!
Posted Sep 29, 2026, 2:30 AM UTC