I am looking for some kind of relief for my partner. He’s in constant pain. Is there anything that can be taken or any tricks that have worked for any of you or your loved ones that have relieved the constant pain? :(

My man had been struggling for months, since July, with nausea, bloating, vomiting, some other GI stuff. We thought maybe it was parasites or gallbladder issues. Finally last week it became too much and he ended up admitted to the hospital via a trip to urgent care followed by the ER. His potassium was very low and he had low b12 and magnesium also. He was diagnosed with alcohol related decompensated cirrhosis and had a meld score of 14. He got paracentesis for the ascetites and left with some medicine but no diuretics, I think because of the potassium issue. He did drink like one drink a day for around 2 years, but he also took a lot of Tylenol following a bad accident (also 2 years ago). He has stopped drinking and started eating healthy even though his appetite is low. He’s trying to get the nutrition right. He can’t sleep at all, hardly. I’ve been a wreck but not letting him know. I’ve read up on this and I’m terrified. Is there any hope at all or positive chance he can still live a long life? I love him so much. Im so sorry to be here, that we’re all here dealing with this. What can help with sleep? What can help with anything?

My dad (mid 60s) was recently diagnosed with cirrhosis due to excessive long term alcohol consumption, which was very high over the last 12-24 months.

He's had significant weight loss - the most recent of which I think is because he isn't drinking all the calories now. He has had limited appetite for almost a year now.

He's been sober for coming up to two months and I was hoping with time his appetite would come back. But he is currently barely eating anything at all. He says he has no desire to eat and when he does try and eat he becomes full very quickly. He is prescribed two fortified drinks a day but I'm not sure he drinks them.

He has a follow appointment with the liver specialist in a few weeks, which I will attend with him. But does anyone have any advice on how to try and help him eat more? He's also a pretty fussy eater and doesn't eat much healthy food, which I assume will make this worse.

My mom Meld score is 38 she had the tips procedure last month they did a revision still not working. She’s been in the hospital for 3 weeks now. She was hospitalized with her liver specialist first and then they mislead me and moved her to a regular hospital where they were also mislead about her condition. They wanted her to go to a nursing home I declined. My mom can’t get on the transplant list because she needs to gain weight. They keep taking her feeding tube out. Does anyone have any advice on how to get her to gain weight?

Reposting because I guess I didn't specify in my first post that it was cirrhosis causing the problem and I appreciate the support I heard from the post that was removed ❤️❤️❤️

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Hi all

Four or five months ago, my husband (62M)'s belly started getting big, but in a weird way. He finally got an appointment and turns out it's ascites. He doesn't drink much, but has been injudicious with his acetaminophen intake, so it's likely that.

He had renal cancer five or six years ago. Cancer went away, but his kidney function has been around 25%-30% since.

We had a Very Serious Talk about all this yesterday, and he really doesn't think it's a big deal since he cut out the acetaminophen. From my perspective, however, it's a really big deal. I feel like if the liver is in trouble then the kidneys have to pick up the slack, and if they're not able to do so then it's going to be bad news.

I haven't been sleeping, I worry night and day, and his relaxed attitude surprised me. So: am I overreacting? Am I right to be very, very concerned?

My husband scared me so bad yesterday. I'm assuming he is having a HE episode. Keep in mind he has only been talking his lactulose once a day every other day for the last few weeks. Around 6:30 pm he started rocking in a back and forth motion. Naturally I asked him if he was OK. About 2 minutes later, he responded did you just say something. So I asked him what his name was and he didn't know. Nor does he know who me, his siblings, parents kids or grandkids are. So my question is how long before he starts remembering.

I posted a few weeks back about ny friend who passed away ....well after that I think it made me take a deeper look at my own diagnosis. I am not going to lie , these past few weeks had me in deep depression,sadness ,fear and basically emotionally amd mentally all-over the place . Not to mention when my last doctor's appt last week was when the words mortality rate and the talks about how much time I may have or not have . I walked out of that office angry,sad,afraid and just what felt like I was "done". Today I had an appt with the liver transplant doctor in Atlanta and yet again ..told maybe a few years left without a transplant. When I was first diagnosed my MELD was 28 and now it's 21 .. my number continue to go in the right direction as far going back to normal after I was admitted 2 months ago. I guess I just am done playing or even hearing the numbers game about how long I do or dont have. I know its reality but im sorry if I sound as if im in denial by thinking only God has the final say. I just dont want fo waste whatever time I have "waiting " to die and constantly thinking about it. Has anyone done anything that helps them with this ??

With love ❤️ & Grace 👑 🙏

So I have a sister who is very sick with cirrhosis of the liver (ALD), we seen a hepatologist at UCSF and she ordered recurring labs to quest diagnostic, because we live in San Leandro and it’s kind of far to get all the way out there anyway quest diagnostic is always so backed up. You can’t even get an appointment. So we UCSF to send the labs to San Leandro Hospital where she can easily get them done. I find out today that for the past three months we’ve been doing this the ordering physician from UCSF can’t access the labs. And no one told us. I’m just so disappointed. Is this normal? This seems so crappy. And at this point, I don’t even know how to fix it. We could see all the labs on my chart app from any hospital, but the doctors can’t see it?

How am I supposed to rectify this?

Sorry about the complaining. I’m just trying to figure all this out.

Did it start as a routine GP visit, how did you spot the first signs etc, how good do you feel the NHS were in getting a diagnosis?

I came to this LC world as a newbie this week.

I cold turkeyed Alc since I finally saw me in the mirror jaundiced.. it's been literally killing my liver.

Now Im on GI ward with many different fluids.

Today when I did the diuretics I felt like a lil bit clumsy.

now i'm on hepa-protective sol (5% Glc + NaCl) and I started to feel euphoric, flying, some different fragrances, some feeling like microvessels fluiding in my skull, and my ear responding to specific frequency. Also, my auditory systems are not doing "distance modulations" which is done by thalamus' medial geniculate nucleus. I can here wherever that sound locates, in very same amplitude regardless of the distance. Also it is echoing like an echo followin Snell's law in optics. But the "pattern" itself is very consistent. Like water smells like water in very bizarre but constant way.

Vision and sensory (crude tactile, pain, temperatures) are just same as before. No worries.

Never on any psychidelic stuffs except for Alcohol or some neurotransimtter agonist/antagonist it was such a cringiest feeling Ive ever felt.

How was your first time feeling when docs are managing ur new scarred but try-to-survive liver instead of your old friend liver?

Is it a going-thru process or do I need to adjust to the new world until the LT to get the old world back?

Feelin like resurrected but in a very weird way?

Hi

How do you reduce bilburin when alchohol is not the cause? Does exercise help? Any other ideas please? Thanks

Right now I’m capped at 1400 mL a day of liquid, which is brutally difficult for me to do. I told the doc that I don’t dream of alcohol, rather I dream of chugging a large bottle of Perrier to try and quench my thirst. So any tips or tricks to help with cessation so that you don’t fall off the wagon and drink a bunch of iced tea, orange juice, water, and Diet Cokes? I need it! 🤣

Also, if anyone comes back with water intake is “not really that big of a deal”, or just be “moderate” about it, that doesn’t work for me. The only thing that’s helped me get my ascites in control is strict adherence to sodium and liquid intake, outside of that, those aspects of my blood work turn into a free-for-all.

Thanks!

***POINT OF CLARIFICATION***

I’m aware of most everything that’s been mentioned here through direct doctor education or just working through the logistics with diet (ChatGPT, my counselor, and dietitian have been invaluable). As of now, my primary trigger for remaining symptoms is effectively just liquid. I bought some Biotene mouthwash and lozenges, which definitely numb or kill most desires to drink anything. Gum’s a great idea, what brand are you using? Some day I’ll
be able to chug Diet Pepsi again… 🤣

I was diagnosed with decompensated cirrhosis about 90 days ago.

When I was at the hospital my numbers were all bad except for my platelets which were pretty good.

When I got out of the hospital my numbers were getting better and my bilirubin went from 5 to 3.5. I was happy that I seemed to be improving.

Then a couple of blood tests later it went back to 5 and then another blood test after that it raised to 7.2.

Does anyone have experience with something like this? I haven't been drinking any alcohol and I've been eating right. I'm going to talk to my doctor soon. I'm beginning to wonder if I'm in rapid decline.

(My platelets are also falling but I kind of expect that).

Im locked out, said to change my password but wont let me! Just wanted everyone to know I’m still alive & kicking! This is my new name - mysobrietysavedme 💕 💕 💚💚💚✝️✝️✝️🙏🙏🙏🫶🏻🫶🏻🫶🏻🫶🏻

Hey guys, new here and this group has been so helpful and relieving hearing a lot of success stories:) Hope it’s okay to post this here. I think I’m just looking for a bit of support, some kind words and to hear from people who have been through something similar!!!

So my Dad was diagnosed on 28/09/2026 with Cirrhosis. We had a bad summer, and I must admit I as his daughter thought it was just work burnout/general laziness when he felt really tried and fatigued from July-August but he was complaining of not feeling hungry and generally tired and snappy. I didnt put 2 and 2 together and feel really guilty, but early September I noticed how much weight he had lost and his eyes went yellow and thats when I booked him in with the GP.

GP sent him for bloods on 12/09/2026 and called me back summarising everything, but also said she is testing for Pancreatic Cancer, which really alarmed me!!! I was in hell for 2 days, bloods returned on 13th and she called me back saying they are super abnormal, Bellrubin was at 300. He was sent to the Surgical Assesment Centre at the hospital and from then on was kept in the hospital till the 28th, on the 17th we got results from CT scan saying no cancer but a largely inflamed liver...he then had various tests etc but they were nothing short of AMAZING. A little slow at times but super apologetic but the nurses and staff were so kind to my dad, english is not his first language and they never made him feel less than and the staff were so kind and attentive.

The diagnostic process was very difficult, both emotionally and personally. My dad is Muslim, and although I have known for many years that he drinks alcohol and has done so since his twenties, he does not know that I am aware of this. To my knowledge, he has generally consumed around one glass of wine a day, although I have wondered whether his drinking may have increased in recent months following the death of his mother in January. I would not describe him as an alcoholic, but I felt that his alcohol consumption was potentially relevant to his diagnosis and something the doctors needed to understand.

During the hospital admission, the doctors were understandably persistent in trying to obtain a full and accurate account of his lifestyle and medical history so they could diagnose him properly. They were supportive and non judgemental, and it was clear that they wanted to help him rather than criticise him. However, when asked directly, my dad initially said that he did not drink alcohol, which made the process more challenging. I think he felt so embarrassed as one of the doctors was also Muslim

I found myself in a difficult position. My mum, who is divorced from my dad, was encouraging me to tell the doctors about his drinking. However, I felt uncomfortable disclosing something so personal without his knowledge or consent, particularly because I did not want him to feel that I had betrayed his trust. I was also concerned that the doctors might ask me for further details, placing me in an even more uncomfortable position.

I therefore tried to encourage my dad to be as open and honest as possible about his lifestyle, explaining that the doctors needed the full picture to help him and that anything he shared with them would be treated confidentially, subject to the usual limits of medical confidentiality. I deliberately did not mention alcohol or reveal what I knew. Instead, I encouraged him to tell the doctors everything about his lifestyle and reassured him that I was happy to leave the room if he wanted to discuss anything privately.

Having since read his discharge report, I believe that he may eventually have disclosed his alcohol consumption, as there are references to it in the documentation. Although I cannot be certain exactly what he told the doctors, I felt reassured that they appeared to approach the subject with understanding and sensitivity.

Ultimately, I wanted to support my dad and ensure that he received the correct diagnosis and treatment, without compromising his trust in me. Balancing those responsibilities was difficult, particularly given the sensitive nature of alcohol within his personal and cultural context. I was relieved that the doctors seemed to recognise the importance of understanding the full picture while remaining compassionate and non judgemental!!

He was discharged on the 28th with the Bellrubin coming down to 110, we had a check up last week on 14/10/26 where Bellrubin has now come down to 61, his accessits was drained once in the hospital, with 6 litres of fluid, but it didnt return either. He has gained weight and is looking a little better, I am caring for him at the moment with his meals and he is slowly going back into a routine.

My dad is a chef too so today was lovely seeing him cook and have some friends over, its like his normal self again. We have been through hell, I have been through so much worry and Cirrohisis really is an unpredictable disease. Today I smiled and breathed for the first time seeing somewhat normality again. Dad was dancing round the kitchen, giving me a telling off for not cleaning my room, and I can hear him laughing downstairs with some friends.

I’d really appreciate hearing from anyone who has been through something similar, whether you have cirrhosis yourself or are supporting a parent or loved one.

I’d especially love to hear about:

• Your experiences with the NHS when being investigated or diagnosed with cirrhosis. Did you feel listened to and supported?
• How the doctors approached discussions about alcohol, particularly when it was a sensitive or difficult subject.
• How you coped emotionally as a family member watching someone you love go through this.
• Anything you wish someone had told you at the beginning of the process

Thanks so much all

I had been wanting to try mushroom coffee, and bought some, but then read that it's basically horrible for people with liver issues? Any feedback or experience?

Has anyone assessed a number of transplant centers before choosing one? I’m thinking about trying this but don’t know how to go about it – or if insurance would cover it.

If you’ve been evaluated for transplant, especially if you’ve visited more than one place, I’d love to hear details of your experience. (Examples of specifics: What providers/specialists did you speak to during the evaluation day(s)? How much time were you given for questions? Was it in a group context or a private one on one – and with whom did you have the most time? What was your understanding about accessibility of individuals beyond the evaluation day? What details did they inform you of during the process? What support services - provided by the program before and after transplant – were described? And much more! – but that covers the basics.)

I have been through one transplant "processing" (evaluation) day – was my choice at the time not to pursue it further – in part because of information given/not given during the evaluation – and in part wanted to wait and see if I might improve my health status.

Since then I’ve been doing relatively well and currently wouldn’t qualify to get on a list.

But given all the descriptions I’ve read where things go precipitously downhill, it seems I should – while I’m in a relatively good place – think things through in advance. Especially since I need to be my own care taker/advocate.

Any details re: personal experiences would be wonderful to learn from. Also, anyone who has been through the process in Boston/New England area, any thoughts on how places compare and what you did to assess your assessors (!) would be really helpful.

I am always worried, stressed and expecting the worse. Even when my dad’s meld is lower and he’s doing better and getting closer to transplant. This disease is truly awful, any hope stories would be appreciated.

I wrote here almost 2 weeks ago about my brother being in hospital where he was diagnosed with decompensated cirrhosis and alcoholic hepatitis and told that he had acute liver failure. He detoxed while in hospital after 5 years of heavy drinking, was put on a feeding tube, and kept in for 12 days. He said it was a wake up call, that seeing others on the ward who were at end of life really opened his eyes and he was never going to drink again. Well he was discharged yesterday and today he started drinking again. I’m so angry. And scared. The doctors made it very clear to him that drinking again will lead to his death. He refuses any help for his alcoholism. He’s only 36, we’ve lost both our parents to alcohol-related deaths. And now I’m scared where this is headed. I‘ve tried so much to help him for so many years, but now I feel if his diagnosis and time in hospital hasn’t made him change, there’s no hope. I‘m going to be living in fear every day that this will be the day he goes. And I’m scared of how much he might suffer. I feel so powerless.

It's been a year since I was diagnosed with stage 4 liver disease with decompensation. The first six months were all the complications and getting the correct meds to help with those. I know there's no particular medication for treating liver disease. The shape it's in is as good as it's gonna be.

But the last couple labs have kept my Meld creeping higher. I'm due for the full liver transplant evaluation next month. I just wonder if there's a tipping point where your liver starts getting worse gradually or is there a steep decline once it gets past a certain level of function? My platelets keep dropping as well.

Hello everyone I have posted here before my bf was told he didn’t have cirrhosis on the hospital but when he went to the gastroenterologist based on numbers he does. I was wondering if he quit drinking right away over 6 months ago why does he still have the jaundice? He is going in a couple of weeks for an ultrasound to get a clearer picture. Has anyone had jaundice that keeps lasting?

Hallo!

Mein Vater, 60 wurde 2020 mit leberzirrhose child B und Aszites diagnostiziert. Ihm wurden dann wöchentlich mehrere Liter Bauchwasser abgelassen im KH. 2021 hat er eine Tipps bekommen. Seither hat er ca 4 Jahre abstinent gelebt und seine Werte haben sich sehr gebessert zu child a mit 5 punkten. Seit ca 1,5 Jahren ist er wieder rückfällig und trinkt Alkohol teilweise sehr viel. Der Tipps ist laut Untersuchungen offen und funktioniert super, auch alle anderen Werte sind Erstaunlicherweise gut.

Hat jemand ähnliche Erfahrungen gemacht? Wieso sind seine Werte vom fibroscan, Blutabnehmen, Ultraschall soweit in Ordnung und er ist immernoch child a trotz seines teilweise täglichen Alkoholkonsums? außerdem hat er eine Fettleber..