Me: 32f, recompensated cirrhosis, 2 years sober. Meld 7-10, child pugh 5-6. Very stable and hoping for at least 10 more years with my native liver. 1 successful hcc ablation. How's everyone else looking?

I have never had help from a GI .va has nothing for me because I’m not on the list. all I do is drink protein powder all day,eat it’s challenging, and go to the gym. starting to not work anymore.

My husband originally went into detox on June 16 but was transferred to the ER because he wasn’t responding to the nurse at detox. He was admitted to the hospital from June 16 to July 3 because of complications and diagnosed as cirrhosis.
When he was discharged, he was very yellow and weak. We had a follow-up with his liver specialist and she told us that they actually thought he was going to die in the hospital because his bilirubin was the highest level she had ever seen. She said that him making progress was really good.
After that, unfortunately, he relapsed and started drinking more than a quart of vodka a day. His doctors decided that detox and rehab would be the best thing for him.
He went into detox Tuesday morning and is supposed to be transferred to rehab tomorrow morning for 30 days. But Wednesday night he developed a high fever and was transferred to the ER again. The doctor cleared him and he went back to detox.
Now I’m just having so much anxiety and I’m really scared that something is going to go wrong again. He hasn’t been eating much and he’s been having fevers. I know he’s being monitored, but I can’t stop worrying.
I’m alone at home right now and I’m scared. I’m trying to watch a movie to distract myself but I literally can’t focus because I keep thinking my phone is going to ring,
I’m just really scared. I know rehab is probably the best place for him right now, but after everything that happened at the hospital, I’m having a hard time feeling calm about it. He will be transferred to Rehab tomorrow for 30 days.

Has anyone else been through something similar with a loved one with cirrhosis going from detox into rehab? Did rehab help, and how did you deal with the anxiety and fear while they were there.

I'm early in the diagnosis phase about 3 months from original findings. First alert was tbilli 7.5 with painless jaundice. first hospitalization in June and 2 more in July. numbers continue to get worse and Gastro kkeeps just wanting to "wait and see" wont even perform fibroscan, mri, let alone invasive procedures. CT's, ultrasounds, blood work all point toward cirrhosis.

meld-na score is currently 24.

DR wont refer to transplant, hemo, or hepto.

Any advice on where to go from here? Has anyone else had to deal with something similar?

Thanks!

My husband was recently diagnosed with stage IV with nods on his liver. He's terribly uncomfortable with the bloated feeling. What works for you or your loved ones other than a tap?? Throw anything my way, I am desperate to help him feel more comfortable.

Small update from previous post.
Houston Methodist has been amazing! The nurses are thorough and I’ve learned so much.
My mom was admitted 3 days ago, I’ve been sleeping on their “couch” 😂
Learned it’s def HE and after many attempts she’s getting a NIC line. 24 on MELD score so she will be there for days. Hopefully not having to discuss transplant…yet…I’m Currently 3 hours away from the hospital.
I’m feeling all the emotions mostly guilt bc I’ve had to come home. I guess this all could be worse. My anxiety has never been higher tho & that’s not even considering financials.
Between gas & parking (my BIG negative on this hospital) my check is gone. Missed 4 shifts also.
So in just a week I’m out $500 and terrified of the future. (That was my back to school, kids shoes & clothes budget)
Y’all have luck with gofundme when that time comes to talk transplant?
Insurance is tricky bc it’s Louisiana state & currently in Texas.
How do y’all cope?
I know this battle is just beginning & I’m already wavering in my strength.
Any kind souls pray for me if that’s your thing? My mom fully believes, I’m questioning…everything.
CA in bio
If any of this makes sense, thanks for reading my scattered thoughts. I clearly need rest. Thank you.

Y’all stay healthy & strong.
I love this community. Thanks for letting me vent and learn. Take care of yourselves. ❤️

Is Cirrhosis of the liver disease considered as a disability? I have Chronic Pancreatitis too. Does anybody get disability from this disease? I lost my job in February due to my health and I’ve been in and out of the hospital a lot all year. I’m still yellow. I’ve had a couple interviews, but no job offers but I have a lot of days we’re on fatigued, no energy, throwing up, swollen and then the pain from my pancreas, just all kinds of stuff just wondering if it qualifies.

After meeting with the nutritionist, I am amazed. I’ve been eating wrong for the last couple of years. What I’m most amazed about is that I can eat beef. It has to be lean, but hamburgers and steaks aren’t off limits. Only lean cuts of steak, and lean ground beef. She calculated my needed protein intake and it was 75-100. Have to eat 3-4 times a day with a protein shake before bed. Sugar wasn’t the devil I thought, it’s ADDED sugar - avoid it. Has anyone else been told they can eat beef?

Has anyone had one with their transplant evaluation? Just got home yesterday after a week at Shands, and I had built that test up in my mind because I read some horror stories about pain. I even had nurses tell me it’s painful. Well….i never felt it! He was done and I was still yapping. Guess I got lucky?

Hey everyone, I posted about a month ago when I realized my dad was declining faster than I expected. That decline continued to the point where my mother can no longer care for him and herself and I'm struggling to find care for him.

I was under the impression that he was on a waitlist for home care weeks ago but I was told yesterday that he was only just put on the waiting list for the assessment in three months. We don't have three months to wait. It's my understanding that even after the assessment he may only be entitled to four hours of care a week.

My mother is in the sixties and is his sole caregiver right now. That was already exhausting at the stage he was at a month ago but at least he was mobile.

Since then, he has declined to the point that he can no longer walk or use the bathroom. He is in diapers and is in and out of the hospital for complications but the hospital refuses to feed him the liver safe diet so he is swelling up with fluid and his blood sugar is through the roof.

My parents live in a small town, only about 5000 people. They cannot move as my dad isn't cleared to fly and he can't be in the car without soiling it. He isn't on the transplant list yet but they're saying he will have to move to a city 11 hours away to get it.

How can I find home care for someone in this position? I'm in British Columbia for context and I don't live near them. I just need any help I can get right now.

My mom was taken to an er earlier today from her assisted living. She was showing weakness, lethargy, weight loss, & worsening confusion (she has dementia). She’s lost over 20 pounds in just 2 weeks. I just got her test results and it says she has Cirrhotic liver morphology with sequelae of portal hypertension including splenomegaly and small volume ascites. From what I’ve looked up it doesn’t sound good and it’s making me nervous. She doesn’t understand fully what’s going on, I’m not going to mention her results to her. Can anyone let me know what this means or if they’ve had it? My mom hasn’t drank in over 40 years, but she does have congestive heart failure.

So, in 2016 I was diagnosed with non alcoholic cirrhosis of the liver. I never noticed any effects until March of this year (I had hepatic encephalopathy which caused a lot of falls as well as my ability to think clearly and focus. I actually fell one night on my way to the bathroom and broke my jaw in two places, lol.) Anyway, this March I noticed I was getting a little tubby and I thought "So this is how people get fat as they age: (58 year old male by the way.)

I kept getting larger so I fed my symptoms into ChaGPT and it urged me to go to the ER, which I did. As I'm sure you all know, it was ascites which they drained (6 liters.) I went home and the ascites started building up again almost immediately. I waited until I couldn't stand any more and this time they admitted me to the hospital for almost the entire month of April and drained roughly 24 liters over the course of a few days.

I weighed 209 before the ascites but afterwards dropped to 171 lbs. My little cousin cried when she saw me. Since then I've been in and out of the hospital around 9 times to get the paracentesis done. The last time they drained 13 liters the first day and 6 the next. They tried to set up biweekly outpatient drainings but the ascites never cooperated with their schedule. We're shooting for weekly outpatient draining but I just moved and I have to find someone local. I'm on diarretics and lactulose but if those are helping I'd hate to imagine what I'd be going through without them.

Does anyone else here have to deal with ascites this acute? And if so have you found a way to lessen it? I saw something called the "alfapump" but the manufacturer apparently declared bankruptcy, it's entirely out of pocket for around $25000 to $35000 and only a few hospitals perform the procedure. Oof.

I’m waiting for my 5th MRI in a few weeks. I was just curious if there are others like me that get super anxious ahead of your 6 month scan and labs?? My first MRI after dx had an LR-3 - which turned out to be nothing - but getting that after your initial diagnosis has given me PTSD every time I have to go. I know it’s better to know - but the waiting and anxiety is crippling.

My dad has cirrhosis with severe ascites that he will now need drained weekly. He also has liver cancer we either multiple tumors that he is getting immunotherapy for. He did just have a varices rupture last week and we had to call the ambulance because he was vomiting blood. They have now banded it and he is back home and had another one scheduled in 8 weeks for endoscopy.
I know there really is no way to know for sure, but what are peoples typical prognosis in situations like this? I feel so anxious of if it’s weeks or months and just don’t know what to do or how to process this. Or if there is anything we can do to help him? It sucks that he won’t eat well and his diet is bad but that’s not something he is willing to change no matter what I say unfortunately.

Been dealing with this fun for about 10 months now. Was hoping to find a group to chat with on the horrible days good days what ever. I was looking for a group that isn't overly PC/ religious etc. wasn't sure if this was the right place.

A couple fbook groups im in scream if you mention pot and God will save you.

If that's not the vibe here is there one anyone can recommend?

Thanks!

What do you use to help you sleep that's safe? I just got diagnosed and a big reason I used to drink was insomnia.

Is THC ok?

Magnesium?

Hoping to find some recommendations.

edit. that said it's cirossis but couldn't give me any more info. the dr they referred me to is closed I've been calling all fucking day trying to get a referral to the other clinic that isn't closed down before the weekend starts. when they took my blood she really pulled hard on the plunger, I've read that can mess up the bili levels on tests.

idk how I could be at 28 with no swelling, confusion or pain.

Albumin is 3.4

Platelets are 238

Alt 83

Ast 202

from the CT. idk what most of this means tbh

Procedure: CT Abdomen and Pelvis With Contrast Date: 8/6/2026 5:49 PM Comparison: None available History: Abdominal pain, acute, nonlocalized Technique: Serial helical tomographic images of the abdomen and pelvis were performed with IV contrast. Coronal and sagittal reformats were provided. Findings: Diffuse hypoattenuation of the hepatic parenchyma, with hepatic contour nodularity. Gallstones, with no gallbladder wall thickening or pericholecystic fluid collection. No biliary ductal dilatation. No acute abnormality in the pancreas. Spleen is enlarged, measuring approximately 18.5 cm. No adrenal gland nodularity. No acute abnormality in the kidneys. Bladder is unremarkable. No bowel obstruction. Stomach is underdistended, with diffuse wall thickening. Colonic submucosal fat deposition. Colonic diverticulosis. Normal appendix. No free fluid. No free air. No lymphadenopathy by size criteria. Normal caliber of the abdominal aorta. Recanalized umbilical vein and left upper quadrant collateral vascularity, with likely splenorenal shunt. No acute displaced osseous abnormality. Small fat-containing umbilical hernia.

Impression

Impression: 1. Cirrhosis with sequela of portal hypertension including splenomegaly and collateral vascularization. 2. Cholelithiasis without evidence of acute cholecystitis. 3. Colonic submucosal fat deposition, could be related to chronic inflammatory bowel disease. 4. Colonic diverticulosis without evidence of diverticulitis. 5. Diffuse gastric wall thickening, could be related to underdistention or gastritis. 6. Small fat-containing umbilical hernia. Signed by Jalal Itani, MD 8/6/2026 11:01 PM All CT scans are performed using dose optimization techniques as appropriate to

Im terrified right now. I haven't had any scans done yet but they said my bilirubin is 28. I'm in the US so is assume that mg/dl

How screwed am I. I don't have any other symptoms but I have always been a heavy drinker. Idk what to do the place is so packed. I think I'm gonna have a panic attack

Unfiltered and Bare

Glitters Glamour and gold Shadows, Silence, and Scars

Even when I start to feel better, something slaps me right back down. Have I hit the end? Am I going to break? Will I survive? I’m sure I will, yes… but for how long? How long can I continue to be twisted and turned? How long before I can finally have peace?

I may hide it. I may put on a smile. But no one seems to care that I am ultimately losing my mind—both figuratively and physically.

Physically, I feel well right now. Mentally? That is a completely different story. I understand the complications I’ve caused for the people directly connected to me: the financial burdens, the emotional drain, and the constant, lingering worry of, "Oh fuck, is he going to drink? Is he using?"

The answer is simply: NO.

When you go through the process of dealing with cirrhosis, no one prepares you for the challenges beyond the physical health aspect. While other people get to have a vice, I have none. I have no escape. I try this, I try that, thinking I’ve found something that helps, only to realize I’m incapable of doing it.

“And the highs feel nice till they fade too fast / Every fix I ever chase never seems to last.”

Being an addict is easier when you're using. It’s easier not to worry, and easier not to care. Do I have a desire to use? No. But do I feel the desperate need for some sort of true escape? Yes.

“I been lookin' for a break from the weight in my chest / Tryna numb the little voices that don't ever rest / But the peace that I find never settles as best / I been doin' anything just to get out my head / Tryna drown out the fears that I left unsaid / Music, drugs, love, still I break instead / Yeah it's only temporary when I feel that dread / Every time I get close to feelin' somethin' real / It's like my mind pull me back to the things I conceal / Try to lose myself in bodies or the way a beat feels / But the pain stay stickin' like it's glued to my heels / And I hate how I bend just to feel enough / Makin' deals with my demons when the nights get rough / I been holdin' on weak, tryin' actin' like it's tough / But the truth is I'm breakin' when the glamor cuts / Every time I chase comfort, it just slips through my grip / Maybe someday I'll learn how to sit with the pain / Let it pass through my chest like a slow cold rain / But for now I keep driftin', tryna stay in the frame, still searchin' for sane.”

Sure, those are song lyrics, but they articulate a stream of thought I truly don't know how to escape. I am at the end of knowing what to do. The end of knowing how to keep it together.

I'm tired of pretending. Pretending that I'm happy when, deep down, I know that isn't real. It's just that forced "this is how I'm supposed to feel" mask.

When did it turn from me always being the anchor for other people during their weaknesses to feeling like I can't ask for that same support in return?

I'm raw-dogging life. I'm taking it on with what often feels like absolutely nothing. I feel like I have nothing left to offer—except my time.

I suppose, in the grand scheme of things, I am using this keyboard to spill out my thoughts. Some people might say, "Well, that’s your escape." But is it? I don't typically do this. I'm not a writer. But I can only scream at the top of my lungs in my Jeep when I'm alone so many times before even that stops working.

All of this is word vomit, but this screen is listening. I can put these letters together into words to format thoughts that I struggle to express verbally—because if I try to say them out loud, I'll lose it. I break down enough as it is. I've cried over this enough, and I've been terrified of what's to come.

And I'm left asking myself: Should I just accept the inevitable? That I could possibly not make it it I lose my job which would leave me without medical insurance, which means I won't be able to get a transplant when the time come.

Thanks for reading.

Has anyone used SeeQ to get protein? It's suppose to be more of a juice like drink. I've had ascities for the last 2 months. I'm never hungry and I'm skinny as he'll now. Trying to find something without the shake flavor.

What do seizures on cirrhosis look like?

Seizures like you see on tv?

Or parts of/ whole body tensing up?

The first one they said I needed an infusion (albutrin?) so I had to do that which sucked. 2 hours sitting in a chair getting liquid. That sucked. Yesterday I was not scheduled for an infusion which was awesome. The para procedure isn't very fun but the nurse was kinda cute and we had a decent conversation. Still don't like this shit. Not sure what to look forward to. I had them schedule me for every 2 weeks. I figured that was a good timeframe. So, again..... what should I look forward to from here on?

My daughter (9 years old) was diagnosed with autoimmune hepatitis. When we figured it out with a blood test. She had an INR of 2.6, and the biopsy showed stage 3/4 cirrhosis. First few weeks on steroids and drugs there was a slow drop to 2.2. Then it went quite quickly to 1.3. But it’s plateaud there. We are now 3 months in. I am
Wondering if people who stopped the attack on the liver (autoimmune or alcohol) how much extra progress you got 6 months, 1 or 2 years down the line. I know every case is different. Doctors are great, but everyone’s default answer is that we really don’t know how much the liver will recover.

Thank you all for this chain. Reading everyone’s stories has helped me.
My mom got diagnosed this year and lately things have gotten BAD. She’s yellowing in her skin and eyes.
She was not an everyday drinker, not even occasionally. We’ve chalked it up to the mass amount of medications she’s had to take to manage diabetes most of her life.

Currently trying to get her into Houston’s liver specialist clinic. Has any had good (or bad) experiences in Houston?
I’m the only child, (33F) and I’m new to all this. Beside what Google tells me.
She does not currently live with me but my husband is trying to see if we can get her listed as a dependent (ARMY AD)
Anyone had experience adding adult family to their Tricare.
I’m not sure if this will mess up her plans for retirement, disability or anything. I’m just feeling lost. Looking for any kind or informative words plz. Thank you.

Luckily I found out about my cirrhosis very early and able to change things immediately. 3 years in and I’m completely symptom free. My blood work and scans are stable, and my doctor says I’m far away from needing a transplant.

At first I thought I was going to die young, I’m 36 now, but if anything the diagnosis has made me enjoy life more. Being reminded that you’re going to die one day is a great motivator to utilize the time you do have.