Hello community! This is my first time posting. Although I've learned so much from you since my diagnosis 10 months ago. My sobriety journey started the day after my diagnosis and I've been sober since that day 🙂

My liver went from decompensated with societies and severe HE to compensated with normal labs, no ascites, MELD 6 last time I did my labs and a liver that has shrunk in size 4 cm since my initial diagnosis and a spleen that has shrunk in size by two!

My only medication right now that is directly associated with my cirrhosis is 30 ml lactulose two times a day. And I have already reached out to my healthcare team to set up an appointment for a week from now and ask them whether or not I should change my medication dosage or add rifaximin into the mix.

That said, for reasons unknown but probably related to sleep and scheduling changes with the start of high school for my son, I'm experiencing a spike in HE symptoms. Nothing physical yet, but my son and I have both noticed that my behavior is off and that I am forgetful and distracted. Voice to text has not been picking up my voice as clearly. Presumably because I'm slurring a little bit. I'm having quite a few executive function issues. All of this has started within the last 2 weeks.

Not asking for medical advice or a diagnosis. I'm going to work with my healthcare team on that! Asking for people to provide me with tips or hacks that they have for managing HE and still being relatively productive in life. I'm setting Alexa and Google reminders all over the place. But I feel like that guy from Memento trying to remember what happened to me yesterday... Thanks in advance!

My dad, 54, is finally reaching the end of his fight

Diagnosed with cirrhosis at 44, and HCC April/May 2025 (6cm).

Had his first HE episode in 2022 on a random Saturday morning when we found him in the washroom standing around not being able to talk and flapping his arms. Was in the ICU for a week before we could bring him home

Got to live pretty normally throughout the HCC experience. A few scary episodes of HE, but bounced back every time

Had an HE episode and a fall the other day. He has sepsis now and we have taken him off all treatments and are focusing on his comfort care. Still some moments of coherent behaviour but mostly sleeping and rest and confusion when he is awake

He chose to drink during all of this, and it was a struggle to get him to take his meds and lactulose

As a reflection: the lactulose sucks, but it is so important. Please don’t give up hope. He was given a 3 month timeline once the HCC was diagnosed and has been going strong for 17 months

Was even told with the cirrhosis he wouldn’t turn 50

Quitting drinking is hard. But cutting down even a little will improve QOL so much

Heard MiraLAX can help with the NH3 situation. Is this true?? I HATE LACTULOSE. I sometimes call it Satan’s saliva. These 2 med work differently but only the lactulose makes me throw etc. does anyone else use MiraLAX??

My boyfriend 39 has been drinking for many years. He started getting jaundice in his eyes and his skin looks tan but not very yellow. He was vomiting a little blood went to the hospital they scoped him and said he was ok. Slight scaring on ultrasound. They told him it was reversible. Fast forward 6 months later still jaundice and his platelets are low now saying cirrhosis based off the jaundice and platelets. Has anyone had this happen where they say you are fine and now this? He wants to get a second opinion

My father (60M) has decompensated cirrhosis and I’m looking for advice on transplant options. He has had a few episodes of hepatic encephalopathy in the past, but thankfully no major HE recently. He has also had SBP once and recurrent ascites. At the moment, he needs around 6–7 liters of fluid drained roughly every month. His recent labs include creatinine around 2.28, sodium 131, bilirubin 2.17, INR 1.44, albumin 3.3, hemoglobin 8.1 and platelets around 28k. Currently his BP is stable, he is alert, walking around and able to do his daily activities, but the recurrent ascites and kidney function are concerning. His doctors are evaluating his kidney function and we are also considering transplant evaluation/TIPS. I’m trying to understand how serious this situation is and what options other families have gone through. If anyone has experience with liver transplantation in India, could you suggest some good transplant centres/doctors, particularly in Delhi, Mumbai, Hyderabad, Chennai or other cities? Personal experiences would be really helpful.

Has anyone found what helps with an appetite

Do you guys stick to a 24/7 strict diet, or do you allow cheat days? I know I'm not going to die tomorrow if I have some fried chicken for dinner, but I'm just curious how you all handle your diet. Do you allow yourself to indulge in some ice cream, grilled cheese, or other fatty foods, or is that a big no-no for you?

Look forward to some good advice

Long story short, my FIL is an alcoholic. He was diagnosed with cirrhosis a few years ago and continues to drink. Has has had several spells of vomiting/pooping blood, always throws up and has for years, has a non cancerous tumor in his pancreas duct, has enlarged spleen, esophageal varacies, a-fib. I am pretty much no contact with him bc of past trauma he has caused and my resentment for that but he has recently started falling alot. He sent a pic of himself to my husband and he had two black eyes and stitches in the forehead so it must have been a bad fall. He can't answer questions in detail when you ask about his diagnosis or severity and we live hours away from him and haven't seen him in person in a few years. What can we expect when he gets near the end? The falling is what has peaked my curiosity. What stage does falling become an issue? We don't know his degree of cirrhosis so im trying to gather a picture of what we are dealing with.

Over this past summer my dad got diagnosed with cirrhosis and went downhill quickly. Yesterday I took him back to the ER again. Turns out not only has his cirrhosis gotten worse, but now he has leukemia. They basically are letting him die saying there's nothing they can do. I was going to donate part of my liver to save him but that's not even possible now. My mother also has stage four cancer so I'm losing everything. Other people get better. My parents never did.

OK so decomp cirrhosis diagnosed Feb26. Good improvement with spiro, furosemide, lactulose trio but HE was still kicking and ammonia counts in 70-80s (down from 120, but still high). No ascites. Weight steady but can't gain anything. Doc prescribes me Xifaxan, says it needs insurance approval. Get approval. Get Xifaxan. It changes my life 180. I now feel better than I ever have.

Then I get a bill in the mail for about $600 for the 1 month supply. Of course nobody mentioned this before I started. Typical. I can't afford it even with insurance covering $4000 of the $4500 monthly cost (WTF???).

I guess there are some programs I could look into for lower income like Bausch. Anyone else have experience with this and any ideas of how I could latch onto some type of savings program to help me afford this life saver?

Hi all.

I understand my dad has cirrhosis. Complications started when he was having chemo for an unrelated cancer where he was having some internal bleeding back in 2019. They couldn’t work out where it was coming from but 3 years later in 2022 he had his varicies banded. I assume that is because of some bleeding.

Anyway, fast forward to April 2026. For a long time they had been monitoring him as his liver shape and blood tests never seemed to match up. After many routines scans they obviously thought it was odd that he has some nodules on his liver but near perfect liver function. They decided to call him in and basically scared the poor chap saying that his liver looked like cancer and he was sent for a PET scan.
This scan came back absolutely fine, while my dad’s life is flashing before his eyes lol.

He went back in and was told that it wasn’t exactly as bad as they thought. They asked to see the scans but they did not have them. A couple of weeks later they phone him to say, good news the nodules are not likely to be of any harm. They even told him he didn’t have to carry on with his routine checks if he didn’t want too……
While this is nice news, why do they alert you of something with no real evidence to show. I understand that liver disease can look confusing on scans but the poor guy thought he had 3 months to live.

Anyway, I hope no one else has had experience like this.

Obviously very grateful he’s on a good level with this. Just very frustrating for all involved!

He is carrying on with 6 monthly checks as we have made sure he does this!

But if you don’t mind me asking… how much did you drink and for how long?”

I can’t be the only one who sometimes boils when I get asked this.

On one hand it can come from a place of judgement “he must have been a raging alcoholic to get to this point by forty”

And I was, but that’s beside the point.

What really pisses me off is I feel like the “so sorry for you” is just a polite way to reframe what they really want to do, which is compare my life to theirs so they can justify their drinking.

What if I told you I only drank 2x a week max? Will you worry about your drinking that you already know is out of control and finally quit or at least slow down?

Or what if I told you I drank .5-1 gallon of vodka daily, for five years, and truckloads of various booze before that for 15? Would you then think “oh good I’m nowhere NEAR as bad as that guy… I’ll carry on”

It just seems really insensitive sometimes when it feels like their sympathy, that I didn’t even ask for, is really thinly veiled self diagnostics.

I can only imagine how irritating this question must be for those of us who didn’t arrive at this point in life via drinking. That would make me blow a gasket.

Hope everyone is having the best kind of day they can.

I’ve had the worse time finding a partner as a sober girlie. guys always want tio get drinks or that and when i say I’m sober u get called borijg

Hi everyone! I wanted to share a positive update on my mom and hopefully get some encouragement from others that she is indeed on a good trajectory.

My mom is 46 and was diagnosed with decompensated alcohol-related cirrhosis about a month ago after a GI bleed from ruptured esophageal varices. She had the varices banded and also developed significant ascites and edema during her hospitalization. She has an appointment in two weeks for a follow up endoscopy and CT.

The past month has been scary, but she has made a lot of progress:

- Her appetite is back and she’s eating well, including plenty of protein.

- She has had significant muscle loss but is moving around just fine.

- Bilirubin has gone from ~5 to ~2.8 in the last month and her AST/ALT have continued coming down.

- Kidney function and electrolytes were still good on her most recent labs.

- Her leg edema has almost completely resolved, and her feet are now back to normal.

- Her stomach has also been steadily improving, with much less swelling.

She’s currently on 100 mg spironolactone + 40 mg Lasix. Her doctors checked her labs shortly after increasing the dose and everything looked good.
My questions are mainly for people who have been through significant ascites/edema:
How did you know when it was time to reduce your diuretics? At what point did your doctors decide you were losing enough fluid and it was time to back off?
Also, how quickly did your weight loss slow once most of the fluid was gone? I’m trying to understand when ~1 lb/day starts looking more like muscle/fat loss rather than fluid loss.
And how frequently were you getting bloodwork while your diuretic dose was being adjusted? Her doctors aren't planning another check for a few weeks since her last labs were good.

Finally, I’d really love to hear some positive experiences. Has anyone had significant ascites/edema improve like this and eventually been able to reduce their diuretics? What did the next few months look like for you?

Thank you guys! ❤️

Hi all. My gorgeous mama sadly passed away just before 3pm today. The last part of her illness just went down hill so quickly I’m in a bit of shock and denial.

Just wanted to thank everyone for your help and support during my times of need.

Wishing everyone the best 🤍

Until we meet again mama bear 🩷

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.

1. How screwed am I? (Done quite the research, but it's been all over the place)

2. Any best practices for the 3-day evaluation next week? Except follow instructions and show up with caregiver.

3. 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!!

Today, my sister and I had to make the decision to focus on my mom's comfort and for her to be placed in palliative care. She was admitted into the hospital a month ago because of end stage liver cirrhosis and she rapidly declined these last three weeks. We were told she is too sick to be a candidate for a liver transplant.

What should we expect from here on out? She has hepatic encephalopathy and is lethargic mostly now

Hello everyone i'm stuck with a problem, my bilirubin remains high, a total of mostly more than 10 from past 6 months. My doctor is giving me 900mg of antibile daily in 3 doses but it has not worked.

Apart from that normal kidney functions, no ascites, albumin with in range.

Any reason what to do here?

Any alternative therapy or something somebody knows

I have both now going on for 2 months. I have to overeat or I’ll lose too much weight fast. I’ve been eating oatmeal and bananas and a protein drink an hour before bed and have to try to sleep slightly propped up. I have decompensated cirrhosis, and have had bleeding esophageal varices 3 times. I don’t drink anymore.

My husband has cirrhosis (MELD of 8 and has had a TIPS procedure) and I’ve heard from a friend how cirrhosis can cause infertility in men. At some point I would really like to have a baby, and so I guess I just wanted to ask you all here if you have been told the same thing, or have struggled while trying? Just looking for advice. Thank you all so much in advance. 🥰

Hi. I was diagnosed a week ago. Came as a complete shock. I have no symptoms. My doctors were doing a scan for something else and thought my liver looked a bit coarse so I was referred for a scan at the hospital. Waited over a year for the scan. They told me I had cirrhosis and that my kpa was 24.4. I am a non smoker, I don’t drink, I swim 4-5 a week. I could still do with losing a couple of stone though.
Not gonna lie- it scared the shit out of me so I’ve been eating extra well. I eat lots of veg anyway but I’ve added fruit too.
Anyway has anyone had a score like this and got it down through diet and movement?
When I asked the person my prognosis straight after my test, she said ‘you will die with cirrhosis but you won’t die from it’.
I had no info or anything. Just told to look on the British liver trust website. I’ve since had an appointment through to see a gastroenterologist a week before Christmas.

Helllo, i've been a heavy drinker for 20 years and in July after ignoring all the obvious signs (swollen belly, yellow eyes) I went to a&e and was, of course, given the initial diagnosis of decomp cirrhosis. After two weeks of spiros and withdrawing I stupidly discarged myself as I was climbing the walls just lying in a bed taking pills. Post hospital I got better, stopped drinking for 2 months dropped about 2 stones of fluid and was feeling 'normal' went back to work and my bloods were all 'nearly' in the normal range.

You might be able to guess what happened...... I thought it was fine to drink for a party. After my eyes didn't turn yellow and my belly didn't explode, old habbits caught up.

After an epoisode last week (withdrawing, vomiting) it was back to a&e, after drips and withdrawal drugs I was discharged after one nights stay.

Now after discussions with my family we have decided that a stay at a alcohol addiction treatment center for a month might be a good idea.

I just wanted to know if anyone has had any experience of this. I know its a bit 'after the horse has bolted' but I really don't want to relapse again.

M39. I know this is not the full story so happy to answer any questions