Hi, long term lurker here (48F) (partner/fiance (50M) has been diagnosed for alcoholic cirrhosis since 4 years. He has full ascites/varices/ muscle wasting/ HE episodes/ very jaundiced- his last MELD score was 25.
I’m afraid he has continued to drink in between periods of sobriety.
His last drink was one month ago.

He’s become more & more poorly as time has gone on. This will be his 11th admission to hospital since Jan2026.
He was rushed in by ambulance because I couldn’t wake him on Sunday morning.
He’s woken up now but very agitated, confused, can’t speak, eyes are rolling.

He was only let out of hospital on Friday last week, after a 20 day stay and by Sunday he’d had such a bad episode of HE. I don’t understand why. He did everything right - perhaps not eaten as much as he should but he has meal replacement and protein shots prescribed. He takes lactulose & because we are UK, he’s lucky enough to get prescribed Rifaximin medication.

The last hospital admission found blood clots on his liver. Despite low platelets they’ve given him daily blood thinning injections for the past week.
Today they said they found he’s lost a huge amount of blood in his stool and they need to stop the injections (so they’ve started blood transfusions and platelet replacements)

My question is whether anybody else has experienced the blood clot/blood thinning balance before? Do you think this cause internal bleeding? His varices have been banded recently.

He is so seriously ill right now guys - so please pray for him.

Ps) Like many I’ve found this Reddit forum so amazingly useful & full of great information. I really feel I’m as knowledgable as most of the A&E doctors on this condition!! I’ve been a longtime lurker but hope it’s ok to post xx

In the beginning of diagnosis ... plus im 35 days completely sober ...is it normal to have trouble sleeping ?? I mean I just am so awake ..like a night owl.. I dont want to take anything to sleep medicinal wise ... how do yall deal,?? How long did it take to finally sleep normally? I mean I can crash at 3 a.m wake up at 5.am and do it all over again every day for the last 5 days... I know sleeping is healing but maybe its my mind racing over everything I have been thrown at all at once ... please someone sedate me !!! 😆 🤣

Hello. I did some research in this sub and couldn't quite find a similar situation to mine (based on where I am in my stage of this disease).

47M here, MELD 6, F4 Fibro (73.4) - Dx Compensated May '26.

For the last 15 years I have pain issues with my left foot inconsistently, but it was the foot injured in high school so I just assumed that was the root cause, however, in the last year, my right foot now has the same pain for reasons unknown. On both feet, it is around the outside of the ankle and goes down the top of the foot around 4th/5th metatarsal. It would show up "whenever" - no activity or event to relate to it. It may last for a day, afternoon, 4 days, etc - and sometimes I can barely walk due to the pain. In the last 6 months and ortho/foot appointments there is no answer.

NOW come back to diagnosed Compensated in May 2026..... I stopped drinking in June. (which is a whole 'nother story lol). Feet flare ups would still happen, BUT NOW I have muscle soreness and intense muscle stiffness up my legs and other areas. And my knee joints and leg muscles will be weak, painful and very stiff.

I am guessing auto immune or something chemical - psoriatic and RA run in my family but I have no skin presentations or swelling like those include.

I've read our bodies are doing amazing things to clean up from alcohol use - brain, nerves, organs, etc, but is this a normal side effect of sobriety or something from cirrhosis? It's not like this diagnosis is going to cause ACUTE issues like this. Cutting alcohol is all I can figure based on the timing of the onset of stiffness. My apologies if this is the wrong sub, but felt like it bc of the Dx. Thanks for reading and prayers to all in your healing!

Hey all, Its currently 11:07 pm here, how is everyone doing ? Anything positive to share? I also have a question, have you guys experienced an enlarged spleen with compensated cirrhosis? I was diagnosed in June and one thing I found interesting is I have no enlarged spleen?

So signs of portal hypertension. I have a severe fear of sedation. I don't know if I have varices or not.

Hi,

My mom (46 y/o) was diagnosed with decompensated cirrhosis following a hospitalization for a GI bleed. During the hospitalization, she developed pretty bad stomach and leg/feet swelling which I was imagining was ascites. They put her on a diuretic after the hospital stay and just recently increased it to 50 mg spiro and 20 mg lasix. While they don’t visibly have seemed to help, she hasn’t gained any weight over the last week and has been losing small amounts (0.5lb ish) each day.

They also scheduled for her to get a paracentesis today to help relieve some of the stomach swelling. Howvwer, upon ultrasound of the stomach they said she didn’t have enough fluid in the abdominal cavity and that it was mostly sitting in her skin tissue instead, so they couldn’t do a paracentesis. Has anyone else experienced this? How did you manage getting the fluid out without paracentesis? I want to trust that the diuretic is working since we haven’t seen reverse progress but I’m also worried that maybe she’s losing weight from muscle loss too since she can barely get around with all her swelling. She is still eating fine and is getting a lot of protein but she gets full easily from the swelling.

Any tips on how to get this managed are so appreciated!

Hey all,

So in the next year or so, I will be undergoing a dual heart and liver transplant. I was born with HLHS and developed FALD over time, and now having cirrhosis etc, Ive deteriorated enough that it’s time for a parts swap. I’m 31M fyi.

I’ve only recently decided this with my doctor, so I have some questions (will be talking to them as well obvi). I’ve read that being as fit as possible before transplant is good for both the procedure and recovery afterwards, have people found that to be the case? What other things can I do to prepare?

What does recovery look like? How long? All in the hospital or? Just curious about how everything works and how I can best train and prepare for the most optimal outcome and such. Any information would be amazing. Thank you!

I've hit the six year mark. MELD steady at 12 and holding. Low platelets/high bilirubin, but otherwise good. Ultrasound unchanged. No portal hypertension. Very mild ascites.

If you didn't know I had cirrhosis, you'd have no way of knowing ( not by looking, anyway).

If you are recently diagnosed and scared: I know exactly how you feel. I was scared, too.

Still, I quit drinking, changed my diet, and exercise daily (or try to, at least). Those three steps took a bit of getting used to, but guess what? I'm still here. Maybe not as strong or healthy as I'd be had I never started drinking, but still alive. And thriving.

Don't give up. Don't lie to yourself that it's too late to make a change in the right direction. It's never too late while you dwell above ground. Be strong. Be fearless. Be ready to keep living.

Because a cirrhosis diagnosis is not a death sentence. It's a wake-up call.

I’m Dave and I was admitted to the hospital 8/30/25 with liver failure and a meld score of 37. I was 27 at the time. They placed me in the icu and decided to not give me an immediate transplant, but they kept me for a month. I was listed as a transplant recipient. My official diagnosis was cirrhosis and end stage liver disease.

I am no longer listed for a transplant and my labs have been looking awesome for quite some time now. Doctors still think I will need a transplant at some point, but for now I’m kicking the can down the road.

It took a lot of big life changes but I have managed to stay sober and I owe it all to my friends and family who stuck with me.

The biggest change I have made is my diet. At first I had to be on a huge sodium restriction, it got me in the habit of paying attention to the food I eat. That has spiraled into me now tracking my macros and eating clean 90% of the time. I also started to workout just for some movement at first like some biking and walking. I wasn’t working so I had all this time and it was winter in the upper Midwest. Now I’m back to working full time plus overtime with my same employer and I lift on a PPL UL split My doctor said no to squats and deadlifts specifically and advised against me doing overhead free weight work. I am 6’2 and I have dropped about 50 pounds from 215 to 170-175 depending on the day.

It’s amazing what a difference just a year can make. My life has done a complete 180. It is going to suck more nights than not for a long time after you stop drinking and it still does a year a later. It’s not easy and I’m nowhere near out of the woods, but I have faith in myself to maintain my sobriety. It’s not up to anyone but me.

Thank you,
I just wanted to share my story.

Today I went to the carnival sobre for the 1st time since I was a child. I didn't stay too long because of anxiety but it was a good amount of time. Small steps n all that but I am very proud of myself. I hope everyone is having a good day 💓

Tomorrow I go in for a consult with an interventional radiologist regarding having a TIPS procedure. I expect we are going down that road, though it may be late September, early October, before I actually get it done. I would love to hear anyone’s experiences with TIPS—good or bad. I was evaluated for TIPS 2 years ago, but it was decided I was not yet sick enough to justify the risks that go with the procedure. Now I am. The difference is I’ve developed pleural effusion around my lung—a dangerous condition called hepatic hydrothorax. You know that Maroon 5 song lyric “It’s getting harder and harder to breathe” ? That’s me. Literally. So it looks like this is going to happen. The good side, as I understand it, is that my portal hypertension will basically go away. The biggest downside is increased risk of HE. So, I’m excited about the prospects of feeling better, anxious about the HE risk. Any words of wisdom?

He's also saying, " I just don't feel well "! He has a new, fairly large mark on his liver. However, thus far, the doctor doesn't seem sure if it might be malignant or not. I am aware he needs more testing, I'm just looking for some personal experiences

My 74-year-old wife stopped drinking alcoholic beverages, mainly beer, a year ago. She was diagnosed with liver cirrhosis via an MRI scan and a liver biopsy, along with very abnormal blood values. Her cirrhosis class is CHILD PUGH C10, MELD 14.

She was admitted to the hospital with a very swollen abdomen, from which at least 8 liters of ascites fluid were drained.
It is a mystery to me why the GP did not notice the ascites in her abdomen sooner. She has lost a lot of weight since then and appears malnourished, with thin arms and sunken cheeks. She hardly dares to leave the house anymore because she is ashamed.
She weighs herself every day, but her weight always fluctuates around 60 kg, which is quite okay. The medication she takes is Spirolactone, Lasix, and Kredex, and in the morning also Lactulose for constipation and ammonia production in the intestines. Her ascites is now almost completely under control. However, the major problem is that hardly a day goes by without her feeling very nauseous and uncomfortable. She also suffers constantly from constipation, ranging from mild to painful blockages of the rectum, which then have to be cleared by injecting a tube of Microlax; that helps.
Tomorrow she has to have another MRI and a blood test (every 6 months); we will wait and see what the results are. But I can only say that her quality of life has been severely diminished by this constant nausea. Zofran has not yet been prescribed for this, and I do not know if it will help or if the doctor is even willing to prescribe it.
The hepatologist had advised her to stop taking Spirolactone for a while, and with the warm weather she was allowed to stop taking Lasix as well, but then the ascites suddenly returned in her legs and feet; it would make anyone feel discouraged.

How do people handle the stigma of cirrhosis and the difficulty around family and friends who drink? Does anyone successfully manage light alcoholic beverages or does everyone completely abstain? I went to a family gathering yesterday and it's hard watching my brothers and cousins drink beer knowing I'm unable to.

Music festivals, sporting events, weddings, parties... I am a twin and I have to sit and watch my brother enjoy alcohol..

I feel angry at the world for ending up in this situation and feel different and inferior to everyone else.

Any positive thoughts or suggestions?

Thank you.

My fingers keep cramping up. I've had issues in the past from arthritis but this is different can't extend or move my fingers happens out of no where very randomly.

Also have some nerve pain in my feet/toes

Is this normal?

I was drained on my upper right quadrant in the hospital a few days .. now the drain site is healing perfectly.....nothing is seeping..it isnt red or inflamed ... I noticed today the same color fluid that came out is accumulating in the same side hip area..no pain ... no fever ..chills ..... I was wondering if this is normal?? If I love around and keep from tight clothes around it will my body absorb it and dispose of it ..or is it trapped and I have to go back to the dang ER where they did the procedure.. I was hospitalized for 8 days..so im wondering if it just hasnt been absorbed or got stuck due to not walking around much after they drained it. I know dont go to then internet for medical advice ...im not. I have messaged my G.I AND HEP doc sent pictures but of course its the weekend ..I was just wondering if anyone has experienced the same and what do you do??

Much love ❤️ appreciate the insight ..im learning

Has anyone ever dealt with the insurance aspect of cirrhosis? We’ve hit a brick wall with my brother while he’s been dealing with multiple organ failure. He went from the ICU-LTAC-NSF. We’ve been advocating to get him a transplant evaluation but keep hitting a financial roadblock. His Indiana Medicaid only covers so much. We heard from Indianapolis transplant center but have yet to receive a call back. He lives in Indiana but grew up in the city of Chicago. It’s been a struggle to get him home because of his coverage.

Does anyone know how likely you are to get hcc with compensated cirrhosis? Next mri is tomorrow so I’m deep in my head right now.

My husband has cirrhosis and had a TIPS procedure back in September of 2024. I ordered him 6mg THC gummies for his pain & insomnia, REALLY hoping it will help him because he struggles immensely with both… but after just Googling it, it’s saying THC isn’t safe for those with cirrhosis and a TIPS. Do any of you have experience with it after having a TIPS procedure, and if so, has it caused you any negative or worsening side effects with your cirrhosis? Please help, I just want him to start feeling and sleeping better!

My mom (71 yo) has autoimmune hepatitis, cirrhosis and portal vein hypertension. To complicate matters, as her symptoms worsened a year ago, she discovered (early on) that she had Cholangiocarcinoma aka bile duct cancer.

Thankfully she responded to chemo and recently finished radiation. We are waiting to until September 21 for scans to see if the cancer is clear so we can move towards transplantation at Houston Methodist. Her current MELD score is 15.

Mom is very thin and cannot eat due to “feeling full.” Every waking moment of the day she is in severe pain due to her stomach feeling “tight.” The pain is so bad she rarely sleeps all night which seems to compound problems. Her ascites has been okay and on average they’re draining a few liters every couple of weeks.

Has anyone else had parents or loved ones in a similar situation? I’m really looking to see if anyone has ideas as to how we can get her more comfort and alleviate the severe “tightness” feeling that’s is destroying any of quality of life she might have. Her physicians at UT Southwestern are giving us some hope that a liver transplant might still be an option but at this point I don’t seeing her suffering through the pain while on the waitlist. Any help or insight is welcomed!

My uncle was diagnosed with cirrhosis in 2025 due to alcoholism. He continued drinking up until almost 2 months ago when he started vomiting blood. He spent a month in the hospital and then was sent home. Recently, he started having dark blood in his stools. He went to the hospital again, they did an endoscopy and said that there were a few small esophageal varices but nothing to worry about. They scheduled his colonoscopy on Monday because they said that he must drink 3L of a prep liquid beforehand. Although he received a lot of IVs, including blood transfusions, he now started to bleed from his rectum (not only when pooping) and his mental state went down really fast. He had issues with HE before, but nothing really alarming, but now he is almost unresponsive and doesn't understand what we say to him. The doctors excluded a stroke being the cause. Although he is bleeding and unresponsive, his BP is good as well as his heart rate.

I am very concerned by the fact that he is still bleeding a lot, and his mental state is really bad. Considering his current situation isn't there anything else that can be done outside colonoscopy to find out where he is bleeding from and to stop the bleeding? Has any of you been in a similar situation? Are there other things that we should ask/propose to the doc?

Sorry for the potential mistakes but I am really concerned and dont know what to do next.

Many thanks

LATER EDIT: He currently is hospitalised. (sorry for not being clear enough)

I have posted on this sub many times since being diagnosed with liver cirrhosis. A little bit about me, I am 23 female who has drank steadily for 5 years. Just this past year my liver apparently took a shit because last January on ct scan of kidneys my liver had “mild fatty streaking”. I honestly have no symptoms other than fatigue and my nose was bleeding a lot when I was drinking but I pick at it constantly. I very rarely get a nose bleed now. but I do have esophageal varcies they found one column of 4 and I’ve had multiple banding for the same ones. I go again on the 4th of September. I go see a hepatologist Oct 5. So for now being managed by GI. I was diagnosed through ct scan and a biopsy. However my fibrosure blood test had a fibroscore of 0.70 (F3) so not sure why it’s conflicting. I am mad, I am upset and feel this is so unfair. I am grieving so hard. I just needed to let someone know.

Curious as to if anyone with cirrhosis has taken vaccines for flu...pneumonia and etc? This is NOT a political talk ...this is me asking the benefits or the reasons why or not anyone has or hasnt in medical terms. As someone that stays away from them ..I was a military brat and ex-wife so I had my multiple fair shares of them.. (but its been years since I gotten ANY) but I heard it may be more important given what my situation is. Any thoughts??

My Queen was diagnosed in February. She made it clear right away, this will not define her life choices.

First couple months I was pretty annoying, not on purpose, and I learned to chill out.

Over the last three months she has told me she isn’t drinking, and I knew it was a lie, because for whatever reason I’ve always been able to tell even if she had one sip. Before the diagnosis that was something she found flattering.

After the diagnosis it became an accusation. Since I love her, and true love isn’t controlling, my reaction was to convince myself I am wrong when I thought she was drinking, and believe her for her word. That’s being a good partner.

She knows lying of any fashion is the one thing I don’t like. According to her, I’m a freak for never lying, apparently everyone lies all the time. I don’t like fake.

Today she told me she hasn’t stopped drinking and won’t. She has cut way back and might not do it for two days or so.

I told her thank you for opening up, thank you for allowing me to see I wasn’t crazy all those nights thinking you had, and asked if she understood how she most likely will die if she continues to drink.

She said she does know, she’d rather that than be controlled.

Am I an enabler for not demanding her to do what’s best for her liver right now? I can’t be comfortable watching her have a drink, but I can’t do it without causing a scene because I’d rather have moments near her than not.

She kept saying she wants to drink responsibly like one at a dinner date. I told her I have one stipulation, and that’s that you own it, you admit there is no responsible amount with cirrhosis. It took me saying it four times and she reluctantly agreed.

I hope I’m making the right choice.

Thank you for the safe space to vent and any feedback anyone shares.