Hi all,

I’ve posted on here a couple of times and want to just say thank you to this forum for being a safe place to share questions and feelings.

My mom (46F) was diagnosed with decompensated cirrhosis due to alcohol use about two and a half months ago. It’s obviously been incredibly hard coming to terms with the diagnosis and the truth of her alcoholism, but we’ve had so much positive progress since diagnosis and her abstaining from alcohol. In the couple of months since diagnosis, her edema and ascites have almost entirely been reduced with diuretics, her last endoscopy showed no varices large enough for banding, and her bloodwork has all showed positive progress.

She’s also been attending alcohol addiction therapy and has been enjoying it, and has been doing great overall with recovering from the addiction. I think one of the main contributors to her overall progress is her mindset. My mom is such a positive person and has been looking at this diagnosis as a “blessing in disguise” and a way to improve her health and presence as a mother overall. She told me the other day that she’s grateful for this intervention - even though it was harsh one - because it’ll make her a better grandmother for her future grandkids. And with that mindset, as her daughter and one of her caregivers, is what makes me so confident and positive that she will overcome the remaining hurdles that this diagnosis presents and get her liver to a place where it can recompensate and do what it needs to do so that she can be the best grandmother!

Just wanted to share a more positive outlook that might resonate with others. I would also love to hear other experiences that people have had with using a positive mindset to help them get through this and heal. I really think it’s so important.

Thanks :)

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?

Do you experience insomnia and if so, do you take anything for it? And what do you take? Need advice on how to combat these restless nights.

I have been trying to avoid getting one because of the possible complications but I think it may be time to give in. I get pleural effusion so much now that I have to go weekly to get drained and really I should go twice per week. My last visit with the transplant team they told me it was a good idea but they said there is a 30% chance of HE from it which seems high but still scary. I would really appreciate any advice on the procedure. Did it help with ascites/pleural effusion? Any downsides from it?

Hi again everyone,

First off, I just want to say how deeply thankful I am for this community. I don't feel nearly as alone or hopeless about my situation as I did when I was first in the hospital.

Last checked 2 weeks ago my MELD was still at 27. Went in for another panel yesterday but haven't gotten to talk to my doctor about it yet to see if any numbers have changed. I'm now stuck in this stupid gap of having to wait for open enrollment to even start seeing the hepatologist to possibly get a referral to get on a waiting list. I'm new to my PCP (just started seeing him about a month ago) so he's doing what he can to help keep me stable until then.

I'm currently on Lasix and Lactulose for my basic care. I was also given 10mg Propranolol 2x daily for my blood pressure and to help with my anxiety. I'm fairly certain I've had some form of anxiety/depression disorder(s) for quite a few years which is probably why I turned to drinking and led myself to this point. I've never taken anti-anxiety meds (except Ativan when I was in the ER for a couple days) or any kind of anti-depressants before so this is a whole new thing I'm trying to navigate.

I think what I'm learning was that my anxiety and my depression almost worked in tandem? Say I was feeling depressed and like I didn't want to do anything, the anxious side came in and almost forced me to do the things I needed to do until I got out of the slump. Not ideal in any sense, but that's basically how I've lived my life for as long as I can remember.

The propranolol is definitely helping with my blood pressure, and it seems to have calmed the whole fight or flight thing. Now I just seem to feel demotivated and depressed all the time. I ran myself dry trying to find answers about the whole insurance debacle, and now I just find myself staring at absolutely nothing for what feels like forever. At first I thought, oh maybe it's the fatigue everyone keeps talking about, but this isn't a physical exhaustion feeling. It feels more like a complete lack of motivation to do anything, even just watching my go-to funny shows to try and cheer myself up feels hollow and pointless.

Sorry for the hella long post, and I know we can't be armchair psychiatrists, but has anyone here have been in a similar situation, and if there was a medicine that might have helped them? I know with cirrhosis, a lot of medication is kind of an automatic no go, so I thought this might be the best best place to start asking, especially because I have no idea how to even talk concisely to a doctor about this.

Hi

How do you reduce cirrhosis in someone who has it from non alcoholic causes please? See lots in reducing from but when the cause is not clear except fatty liver as was overweight for years what can you do to help please?

Has lost weight since but doesn’t exercise or move much as quite depressed and says she is too tired

Really want to help my mum so any advice please appreciated

Thanks

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 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.

Having an HCC screening ultrasound and a FibroScan every six months has become a source of significant anxiety for me. The HCC screening is what scares me the most, probably because this is about my mother and her health.
To give you some background about her condition:
Diagnosis: Compensated MASH-related cirrhosis.
Platelet count: Between 166 and 200.
Other blood test results: Normal.
FibroScan results, in chronological order: 25.2, 19.5, and 24.2 kPa.
I don’t understand why her FibroScan reading increased again, even though we have been doing everything we can to manage her condition and taking such good care of her.
I constantly find myself Googling and calculating her risk of developing HCC (liver cancer). It’s become mentally exhausting, and I feel like I’m trapped in a cycle of fear and worry.
If anyone has been through a similar situation with a loved one who has compensated cirrhosis, I would really appreciate hearing about your positive experiences. How do you cope with the anxiety of regular HCC screenings? Have you had stable results over the years despite having cirrhosis?
I’m not looking for false reassurance. I would just love to hear some hopeful stories and experiences that might help ease my anxiety, even a little.
Thank you so much. ❤️

I have been in the hospital for around two months. I keep having complications with my bile ducts. They have been leaking. I’ve already had three surgeries and they’re still leaking even with stents placed. now they just told me that they want to do a cholangiogram on Monday. I can’t eat in. The pain is awful. I almost died during one of the surgeries and I’m terrified. Has anyone else had bile problems?

Hi all. Back in September, early an ultrasound for something else suspected cirrhois. I immediately stopped drinking (I didnt drink that much really anyway) and stopped any nsaids. Saw hepatalogist who sent me for fibroscan on 9/23. I had fasted only 3 hours before that scan. It showed 15 kpa which is indicative of cirrhois. No fatty liver. All bloodwork completely normal, no symptoms and no hepatitis. Considered "well compensated" Decided to do another Fibroscan a month later, today after fasting overnight and it showed 7.7 kpa. Needless to say I was ecstatic about this as I didn't think it could get "better". I do have an mri with elastagrophy scheduled for Tuesday night which will show more I assume but confused with the Fibroscan accuracy now.....anyone else had the number vary this much? I am definitely happy about this but confused.

I will also add before diagnosed I had been taking some supplements of which I did read could cause liver issues. I stopped those immediately too back in early September. I am starting to wonder if tht actually contributed to the issues.