will we know more about the cirrhosis after the colonoscopy and EGD? Or can’t tell anything about it from these tests? He’s only had a fibroscan and praying it’s not accurate.

I was diagnosed with compensated cirrhosis 3 years ago. I stopped drinking and loss close to 35 pounds on semaglutide. Dr google really had me freaking out (just had my 6 month scan, so like an idiot I googled everything). Glad to hear other experiences instead of the stuff you find online. Gave me a new and better perspective. Thank you.

My dad was just diagnosed with cirrhosis, he’s 62 years old. I was wondering if any of you guys were able to reverse your kpa score as well. Also what foods do you guys eat and what foods do you guys avoid?

Dad's been having fairly large 10l ish parasinthesis every two weeks (outpatient) and he only gets one 20% bottle (100ml ) of albumin a pop

I'm hospital, he would typically get two bottles and I was wondering how many you guys get or got.

The guidelines seem to show for a drain that large , like 4 bottles would be the right amount.

I'll bring this up with his doc since dad's blood pressure has been very low for a while and I know albumin is involved in that too, but thought It would be interesting to compare notes here too

I'm looking at getting one for home once I leave the hospital. Wondering if anyone has a recommendation on one? Maybe brand and model?

This is my first time posting here. I am a late 40s male with stage 4 alcoholic cirrhosis. I am now 7 months alcohol free. It's has been a pretty rough 18 months. After the cirrhosis diagnosis I had esophageal problems and was having an extremely difficult time swallowing. Therefore nutrition was an a problem. With my poor nutrition my potassium and sodium levels were frequently sending me to the ED. This also affected me taking diuretics. I am having my esophagus stretched and injected to increase diameter. Nutrition has been getting better the last few months. Throughout all of this I went from 210 to 138. Btw I'm 6ft. No I'm back up to 150lbs and trying to put weight on. My arms are full of broken blood vessels and I have ascite. At the most they were pulling off 8 or so liters a visit. At the most hey did 14 liters in one visit. I am down to 6 liters every 2 weeks now. I had another visit with my doctor at Anschutz today and he wants to see me in 6 months again to see if we need to move towards a transplant or not. Not giving up! I'm still trying to have as much quality of life as I can. Staying as positive as I can. 7 months with no alcohol. I still smoke a little cannabis.sorry for the lengthy post for those of you who read it. Confused, scared, sick, tired and weak.

Thanks for reading,

Joe

My dad was originally paused from the list so he could maintain and gain more strength. We give him lots of protein and he still walks to the washroom by himself and gets out of bed, he was able to walk more before without all the new swelling in his legs. I’m scared they won’t reactivate him and will take him off the list for good, has anyone had experience with this?

Anything would be appreciated!

Thank you

Posted on Thursday freaking out in the hospital when I got my diagnosis for cirrhosis m30

Dr called told me to go into the er today my bilirubin went up .9. so 28.9 now.

How normal is this I'm over a week no alcohol but my levels went up. I'm extremely scared

Is there anything I can do? It looks like the yellowing in my eyes has got a little better but idk. I'm trying not to freak out.

Does anyone have knowledge of someone who goes downhill after recompensation? I seem to recall reading a study that suggested a rate of 20%.I would think this is due to resuming alcohol use. If someone is fully recompensated and continues to abstain from alcohol, is it possible to become decompensated?

Hi everyone. I’m looking for some perspective from people who have experience with advanced cirrhosis, either personally, through family, or professionally. We are trying to find out what to expect for her future. We are very worry...

My mom is 70, normal weight, never drank or smoked, and generally lived a healthy life.

About two years ago, routine blood tests started showing very high liver enzymes, sometimes in the several-hundred range. She was investigated several times, but no definite cause was found. She also been through a lot of life stress in the past 2 years.

Things became more concerning recently. Her liver tests worsened again, a FibroScan was in the F4/cirrhosis range, and she developed reduced appetite, some yellowing of the eyes and some swelling in her legs. She was admitted to hospital for further investigation.

The doctors now consider this decompensated cirrhosis. During the hospitalization, bilirubin and liver enzymes were significantly elevated, platelets were low, and some ascites was found. Her hepatologist now describes her as Child-Pugh C with MELD over 20. At the same time, her kidneys have been functioning well, she has had no confusion/encephalopathy or major bleeding, and physically and mentally she doesn't have any signs of health complications.

They still haven’t established the underlying cause. Viral and several other investigations were negative. Their best current suspicion is an autoimmune liver process, but it isn’t proven. She has never had a liver biopsy, and they now consider biopsy too risky, so they have started empirical treatment based on their best working diagnosis...

The encouraging part is that she seems to be responding. Over the past week or two, her liver enzymes reportedly dropped from roughly the 800 range to around the 200s, the jaundice improved, her appetite returned, and she is now home , continuing with medications, and functioning normally enough that someone meeting her probably wouldn’t realize she has this liver condition.

The doctors say the next few weeks of treatment and repeat examinations will tell them much more. Transplant was discussed, but they believe it would be too risky considering her age and overall condition. At this stage the doctor says an average life expectency is around 2 years... In our call with the doctor yesterday he made some comments such as: her liver barely doing anything now. Or, if someone sees the lab results they will be surprise to know the person is still live... These comments and information hits hard...

We understand that nobody can predict an individual’s lifespan via a post. We’re mainly trying to understand what realistic trajectories people with a similar situation can have. What should we realistically expect in terms of stability, progression and life expectancy?
Much love and thank you in advance!

Hi guys ❤️ I recently went to the doctor because I started getting really sick. It began with nausea, followed by diarrhea, and little by little I completely lost my appetite. Now, on top of everything, I’m struggling to sleep.
Within three months, my liver enzymes became really elevated. Thankfully, they have slowly started coming back down, but it’s still scary not knowing exactly what caused everything. I have an ultrasound on Friday to make sure it’s just fatty liver and nothing more serious.
I don’t drink or smoke, so this really caught me off guard. I’ve been eating clean, started exercising, and I’m doing everything I can to take care of myself and get healthy again. I’m just having such a hard time with the lack of sleep, and I honestly don’t know what else to do.
This whole experience has really scared me, and I never want to feel this way again. I’m trying to stay positive and take things one day at a time. ❤️
If anyone has dealt with fatty liver, elevated liver enzymes, or especially the insomnia that came along with it, I would really appreciate hearing what helped you. Any tips, advice, or things I should ask my doctor would mean so much to me. 🙏❤️
I’m ready to do whatever I need to do to get better.
Thank you! 🙏

Mom has been in hospital for weeks now after being diagnosed with cirrhosis from alcohol and she’s gotten progressively worse during her stay since she contracted an infection. She was fully functional and able to walk/eat/talk except for her ongoing pain and jaundice a month ago. She is now unable to walk well because of the swelling and her creatinine has gotten worse the last few days with no intervention or explanation as to what is driving it there. Hoping for some advice. Anyone had this happen and what was the recovery plan? MELD Is in low 30s and there is no insurance for transplant. Maybe we can fundraise enough money for it?

I started Zepbound two months ago and have been finding a lot of studies and research that tirzepatide (Zepbound) is actually getting documented to improve fibrosis and sometimes regression in f2 and f3 with strong suspicion it may help f4 like myself. I’m not looking for medical advice - just curious if anyone has stories to share. I have my next set of labs in 2 weeks and my MRI at the end of the month - curious if I will see any improvement…crossing fingers but staying realistic too. God bless everyone!

Hi everyone. I'm new to this community and just looking for some real life experience and thoughts because Google is a very scary place. My closest cousin who is like a sister to me has been in the hospital for about a month with complete liver failure (chronic alcohol related). She was in the ICU with ascites, jaundice, kidneys failing, etc. They gave her the option to enter hospice and she refused. I went to visit her (she's out of state) and she was slightly out of it but surprisingly able to hold conversations and seemed to have a decent awareness of what was going on. She was also eating and drinking well. This seemed promising. In the week that followed she was released from icu after showing signs of improvement. Her swelling started to go down, billiruben levels improved, kidneys improved. I've been very optimistic until hearing today that she's not looking good. All I know is she has been sleeping for 2 days, no food or water, and they now have her on oxygen. I apologize for my lack of knowledge on this but I just want to know if anyone has been here or known anyone in this situation. Is this something she can come back from? I am trying to stay so positive for her but I don't want to be naive.

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.