r/Cirrhosis

Hello! Thanks for the acceptance into the group. I was recommended to join by a very nice lady who I have been in contact with since February when my issues started. I want to make it clear I respect admin rules and know we aren’t doctors. I am here just asking questions of anybody’s personal experiences to see if it matches mine. Let’s back track a little bit. I am 26 years old. I have struggled with alcohol for about 4 years. I have been through some pretty heavy stuff in life and used alcohol as a vice and it got out of control. On February 5th I quit alcohol. On the 7th of February I went to work and a coworker pointed out that my eyes and face were very yellow. I didn’t notice because I was running late and didn’t have time to look in the mirror much and the lighting in my bathroom is yellow. But yes I was immediately terrified when I noticed how bad it was. It happened overnight. I went to the emergency room and was diagnosed with acute alcoholic hepatitis. My eyes, face, chest and stomach were bright yellow and my urine was very very dark and I felt a little nauseous. I was taken by ambulance to a better equipped hospital and I spent 2 days there. I had an ultrasound done and my liver was very inflamed and enlarged. All my liver enzymes were sky high, my bilirubin was very high and platelets were low. After release I was put on medical leave at work to recover from this. In the first week of release from the hospital. I couldn’t stay awake for more than 5 hours at a Time without needing a nap. I had a hard time eating or really doing anything. I got a liver specialist that I started seeing regularity. When I asked if he believed If this was cirrhosis he said “probably not” he wanted me to get a fibroscan about 3 months later after the inflammation had calmed down. I then developed fluid retention in my legs, ankles and abdomen (ascides) I had no libido whatsoever. My appetite was weak. Over the span of a month I went through a lot of emotions. 2 weeks after onset of hepatitis my appetite returned and I had only 1 liter of fluid drained as that’s all they could get out of me, and it never returned. I know cirrhosis is often a cause of ascides but hepatitis can also cause it. I don’t take water pills or anything to reduce bloating or water retention. About a month after onset of hepatitis all my bloodwork started to improve, I felt well enough to work again but didn’t just to be on the safe side. My weight stabilized and the swelling went away as well, my libido returned to normal. A month and a half after onset of hepatitis the jaundice disappeared and hasn’t returned and I started going to the gym full time. I was getting bloodwork every 2 weeks and due to my fast bounce back I was moved to bloodwork once every month because my labs showed amazing improvement And my prognosis was classified as “very good” I lived a normal life besides not working and just focusing on my health and working out and eating healthier. 2.5 months after onset of hepatitis I took a 2 week trip to Europe and got to see 6 countries and had the time of my life without a drop of alcohol. I felt great, I was able to swim, bike, hike, long distances and eat and feel completely normal besides a tiny bit of reoccurring swelling in my ankles but nowhere near as bad as it was the first time around and it went away again within a few days and I was on my feet a lot on this trip. I was very excited and happy to start this new life of sobriety and health. I got back home to the states on the 27th of April. I had bloodwork 2 days after I returned and my labs continued to show improvement. I returned to work on May 5th and it’s been a breeze and it is a physically active job. I was getting nervous for the fibroscan as I have read a lot of stories of false readings. I got the fibroscan and more bloodwork on the 19th of this month, a little over 3 months of onset of hepatitis and the results of the bloodwork were almost back to normal which is great but the fibroscan results were… bad. I had a kpa of 75 which is the highest level of stiffness that a fibroscan can read. They couldn’t give me a definitive diagnosis of cirrhosis. They said it “could suggest severe liver scarring and damage” I was crushed. My family, my friends and my partner were all crushed knowing how hard I worked to get and stay sober and get better and how proud I was to have taken that trip after that horrific experience, we all thought I was getting better and would make a full recovery including my doctor. My doctor did see enlargement and inflammation still present in my liver in the fibroscan images Which can absolutely make the results inaccurate and show more stiffness that’s not actually there. When I asked them if the results would be accurate I was told “eh, kind of” what?! I am not overweight and did not eat or drink anything several hours prior to getting the scan. I also have read many stories of inaccurate results due to the tech moving the wand a certain way or your ribs and body shape. I know the golden standard for a definitive answer is a biopsy. I pushed for one and they didn’t want to do one right now but I told them if they didn’t I would find another liver specialist. They did approve it and I will be getting that scheduled. I really had to advocate for myself and stand my ground. My liver is obviously functioning because of how well I feel and look and the lab work. I know you can have cirrhosis and have normal lab work at times. I just can’t believe that the results were that stiff. I would be more convinced if the kpa was high but so high it can’t read any higher on the scale? How could I look and feel so much better, eat normally, build muscle, travel, work a physically active job and work out with cardio and weight lifting full time and have that much damage? It doesn’t seem to add up to me. My nutrition such as vitamins and minerals are normal and my kidneys are healthy. Again, I respect admin rules and know we aren’t doctors and liver disease is an individualized disease and can vary greatly from person to person. I know the results were accurate for some but for others it was not. Maybe mine was, maybe it wasn’t. I sure hope not. So finally my question is, has anybody here had a fibroscan that showed inaccurate results of f4 liver disease (stage 4) for any number of reasons and then got a biopsy that showed lower stages of damage such as f1,2, or even 3? I know this is a lot to read but this whole thing has been exhausting and an emotional rollercoaster. I was doing so good mentally until I got that scan. I was planning my trip to Asia next spring with my partner and learning Spanish because I’ve always wanted to be bilingual. Now I’m not so sure about making any long term plans or goals because of a scan that seems to be inaccurate for a lot of people 😞 I am now 105 days sober and will never touch alcohol again. Or Tylenol. I’m happy to be approved for a biopsy for a definitive answer but I just am wondering if anybody else has had this same experience or very similar with scans vs a biopsy. Thank you for your time to read this and sorry for repeating certain words. I just want to be transparent as possible. I hope everybody on here is holding up ok ❤️

I got my score today 15 how bad is that?

My brother is an alcoholic with a MELD score of 45 and a DF score of 188. He cannot clot and self discharged himself when the doctors mentioned hospice. He wants to be at our parents and I believe he does not want to try other facilities for a transplant. I am searching hospitals that don’t require sobriety for an emergency transplant.
It’s been extremely hard to go through. He is only 33 and it’s my 30th birthday and I just can’t go through this. I had to be the one to tell him his life expectancy over the phone today also.
Just kind of wanted to post about it. Can’t stop thinking about it. Doctors prognosis is 20-90 days to live. But that’s likely with medical care which he is no longer receiving.
My parents are 70 and I also worry they can’t won’t make it through this.
My brother thinks he can just get better on his own but obviously we are all incredibly concerned but he refuses to be in the hospital or hospice another day.

Has anyone had one of these. How do they get at the liver to scan it since it’s under my ribs. It is going to hurt. Has anyone had a ct with contrast saying they have cirrhosis while never being diagnosed ever with fatty liver and then had an US where they say it’s fatty liver and not cirrhosis, I realize I’m grasping at straws but I’ve had ct scans without contrast in the last four years, and no fatty liver mentioned let alone cirrhosis. I’m scared. I don’t drink, I am obese with type 2 diabetes that’s fairly well controlled. My aic has been up to nine at a couple points in my life, but it’s at 7 currently. Im 71, I already eat a mostly Mediterranean diet, avoid sugar where I can. I’m just so confused and scared.

My fiance (39M) was diagnosed with cirrhosis in 2021, given 6 months to 4 years to live. This is year 5. However, he has not been completely compliant with sobriety.

In March of this year he began exhibiting signs of HE which then led to many, many hospital visits. Ammonia was at 125. Given lactulose in the hospitals, only once was discharged with a prescription for home.

Recently he was diagnosed with decompensated liver disease, and the HE is barely controlled; he has bouts of clarity and within a week he's back at a hospital.

Most recently (Mother's Day) he was assessed in the ER by a mental health crisis team who recommended he go inpatient for a higher level of care (mental/behavioral). The next day he was transported 3.5 hours away to a facility (as much as I'd love to drag this place through the mud, I will not mention what it was). He spent a week there receiving therapy and medications, and the few times I spoke with him on the phone he seemed hopeful about his recovery.

He was discharged yesterday morning. He had a ride to bring him home through his insurance and declined it (didn't find this out til 8 hours after the fact), thinking he was going to be able to go to a sober living house his roommate at the facility was going to. From there I had no contact with him for over 24 hours.

After making 50+ phone calls over last night and this morning, I finally found him at a large hospital in the nearest major city to the previous facility. I thought, "good, he's safe, he will get medical attention." When I spoke with him on the phone, he was short with me, demanding information I did not have, and called me names (not new since HE, completely unheard of before). He self discharged AMA and was told he had to leave the premises.

That was almost 5 hours ago. Still no contact with him.

Do I just let him be an adult and figure this out on his own? When I called the PD they basically said that he's an adult and can make his own decisions. But is that true, with HE? I've watched him be sedated 3x before he'd calm down. I've watched him be tackled by 3 police officers. He's not okay and I can tell.

I am afraid that, being loose in a major city, it will result in jail or death. He gets confused and nonsensical to the point where if someone doesn't understand he could get combative. Not only that, but chances for relapse are SO high being alone, loose in the city. Alcohol and drugs are everywhere.

I'm afraid for that inevitable phone call from 4 hours away. Or worse, finding out on Facebook or online way after the fact.

I'm not sure what I'm expecting by sharing this. But it feels better to get it out I guess. Thank you for reading.

Edit to add: I have recently been informed he is currently in the er of a different hospital 20 miles away from the last one. I hope he stays.

i mean anyone getting a transplant is great but i really think theres so many more men even that i see on this reddit. getting livers even into their 60s and i see so many females have that get cirrhosis at 30 and are just never really high enough for them.

im currently at battle with my mothers transplant team as they have deactivated her.

she has jumped through every obstacle for them, been sober for multiple years, always got her exams, but because shes a post menopausal women and is too frail then she doesnt get one. shes even small. enough that they could do a split liver and are still fighting this.

shit just seems so unfair

doctors said my dad can go home after 7 days of liver treatment. so far his bilirubin has not gone down (day 5), however they said when he’s feeling stronger and can walk he can go home… i’m confused? are they giving up on him?

he said prognosis is 6 months until his liver deteriorates. but what then?

his MELD score is 21

My pharmacy has been out for a month. I called around yesterday and none of the other big pharmacies in my area have it in stock either. This is getting aggrivating....

Anybody else?

Do yall notice more frequent cuts or scrapes with cirrhosis, I am not talking about bruises but skin tears like scrapes?

Taking beta-blockers and following a diet, could that reduce them?

28F here. My narc dad in his 60s who has emotionally terrorized my family for years almost died from his alcoholism this fall. He has liver failure. Of course, he went to the hospital for over a week, they saved him, and then he got sober for about 5 months.

Now he has started drinking again as of a few weeks ago, 10 drinks a night. In the hospital this fall the doctors acted like if he drank again, he could quickly pass away from liver failure. He had over 6 liters of fluid drained from his belly.

My family have all cut off contact w him except me. I am having nightmares about him and his alcoholism. I am having relationship problems with my new partner bc of my insecurities and low self esteem from growing up with a bullying narc father.

I’m constantly both dreading and longing for his demise. I can’t keep living in limbo. Is he gonna live or die??? The lack of control stresses me out beyond belief. I want to disconnect. I’m in therapy. I go to Al anon. But I just can’t handle the stress of him being alive and drinking. And I’m scared of him dying as well. All options feel terrible. And I can’t cut him off. It makes me feel so sad for him. It’s all just too much sometimes.

And I’m not gonna lie, I’m upset that his narc tendencies and him slowly chipping away at my self esteem since I was a little kid has made it so hard for me to be confident and secure in my relationship, friendships, career, and more. It’s not fair. It sucks. I know life’s not fair. I’m just sad and overwhelmed. Sending love to all of us who deal with this.

I would love some support, advice, love, etc. thank you. Just having a hard day :(

Let me start out by saying I am not currently on the list but my doctor is pretty insistent I get on it. I'm 32, last meld was 11, alcoholic cirrhosis and very likely a cancer spot/lesion on my liver(hence his insisting, as once he confirms it that will significantly increase my meld score). I've been sober for 1 year 9 months. I'm in the process of quitting smoking both weed and cigarettes. I'm actively improving my diet, I currently work, and I have the best partner ever. But I'm also depressed as hell, I feel pressured, stressed and like my doctors are more interested in improving their rates than my quality of life. Because I've been reading all the side effects of the meds they put transplant patients on, the rejection risk, the fact that I may never be able to work normally again. It honestly seems like unless you score just the right organ or get one very young your only future is disability and suffering. Even as a high functioning alcoholic I was always very independent and I don't like relying on others at least not long term. I'm also poor though, so it's medicaid city for me. Is anyone else on a similar boat? Those of you with new livers do you have any regrets? Any advice? Thanks

I’m 26 and Native American. Last year, I nearly died from liver failure after years of drinking. It started as a way to cope with depression, and even when life got better, the addiction didn’t go away.

I was in the hospital for about 2 and a half months. When I came in, my blood alcohol level was high enough to be fatal for most people. At one point, I nearly died from blood loss—my hemoglobin dropped to 3.3. I ended up needing around 12 blood transfusions due to severe bleeding (in my case, hemorrhoids). I also lost about 50 pounds during that time.

My labs were severe—my bilirubin was 36 and my MELD score was 38. One of my doctors called me a “walking miracle,” and at the time they were pushing for a liver transplant.

I wouldn’t let my family come see me, and I refused to take any pictures. I didn’t want to ever see myself like that again. Looking back, I kind of wish I had something to remind me how bad it really got.

My hepatologist didn’t think I would quit drinking, and early on my doctor didn’t think the damage would improve much. I proved that wrong. I’ve now been sober for 1 year and 2 months, and I did it without AA. That’s not a knock on it—I know it helps a lot of people—but I wanted to show myself it was possible another way too.

My fiancée also chose to quit drinking to support me, even though she didn’t have to, and that made a huge difference. Now I stay consistent with doctor visits and regular checkups.

My liver has compensated better than expected. The only noticeable issue now is an enlarged spleen—otherwise, you wouldn’t really know I have cirrhosis. My most recent FibroScan showed F1, which is a big improvement from where I started. Now my doctor even thinks some of the cirrhosis could reverse, which I didn’t expect to hear.

Looking back, I’m honestly glad I didn’t end up getting a transplant.

Just wanted to share my story and see if anyone else here has had a similar experience or insight on long-term recovery.

Currently working on my diet for my Liver Cirrhosis and wondering what’s the best diet? I know most of you will say Mediterranean diet and that’s good but I do not like fish or most seafood. I’ll eat shrimp and crabs but that’s about it. With those work arounds what would you do? What is your typical day/week meals? Snacks?

Also, my PCP said to intermediate fast and in my own research I’ve found that this not a good decision for someone with cirrhosis. She also said to take ibuprofen instead of acetaminophen, which my liver doctor disagreed with so I should’ve done research before intermediate fasting. I did message my liver doctor about this today and waiting for her response. For now, I’m going with the 3 meals a day with 3 snacks in between to keep up my protein over a longer period of time to not overload my liver.

I went to an urgent care place, got diagnosed by the doctor with gout and was prescribed a five day course of prednisone (specifically because I told him I have cirrhosis, since normally anti-inflammatories are prescribed.) Given that my hepatologist seems to vanish into the mist between appointments (messages are ignored), I'm trusting the urgent care guy and starting the course.

Does anyone have experience of dealing with gout itself, gout-related medications / therapies?

I was admitted to hospital just over 1 year ago. Alcoholic cirrhosis. I spent 3 weeks there and was released with 3 to 8 months to live. I'm now doing okay with the only symptoms of slight lower limb edema and I'm slightly yellow. My bilirubin got as low as 105 from the 450 in hospital. But for some reason it spiked to 135 in the blood test from a week ago. :( Haven't had a drink since I was in hospital.

I also got the second HCC screen US 2 weeks ago and there's a new lesion. So of course I'm terrified and can't talk to my specialist about it until 10 June. Looking for comments from other people who got a scary scan. I'm Child-Pugh C 8 btw.

Hello. Reading this reddit group has been very helpful. The past 5 months have been hell for me. I had a fibroscan done December 10th. In December right after the holidays, I got a call to go get an MRI/MR Elastography from my Hepatologists office. I asked why, and the nurse practitioner said the fibroscan showed F4 Fibrosis. I immediately panicked. I scheduled the MRI/MR Elastography. At the time I was 360 ibs. I was asked to also do another fibroscan day before new years. The scan on December 10th read 14 KPA, and the one before new years read 22 KPA. I was in a rut. I asked to see my hepatologist before my MRE, and when I saw him he told me that he doubts that I have Cirrhosis as the fibroscan in heavy individuals can be off, and that 2 different readings is also fairly strange. Jan 12 was the date of the MRE. The next day I got the results. 1.6 KPA, 21cm liver and 7% fat. I was immediately relieved. Since then, I now currently weight 299ibs as of this morning (completely changed my diet) I have been having on and off RUQ abdominal pain, and then got a HIDA scan done showing that I have a low ejection rate of the gallbladder. I am scheduled for surgery, but recently, my palms have been getting fairly red and have been getting stomach pains after taking a mild amount of tylenol. I was wondering if anyone has had symptoms like this despite getting good results from MRE?

I’m home alone and haven’t had any alcohol since the beginning of October, about 7 months now. My wife and daughters went out, and I was here at the computer, but all of a sudden I got this insane urge to drink. I don’t know what’s happening. I tried going to sleep, but I can’t. Being on the internet didn’t help, watching TV didn’t help either. I thought about putting on my sneakers and going for a walk, but I got scared I might stop somewhere along the way and buy beer.

I don’t know what to do. I feel frustrated and crazy at the same time. I know the consequences and all the effort I’ve put in up to this point, but these thoughts and cravings won’t leave me alone. What’s the best thing to do right now to get out of this spiral?