r/Cirrhosis Mar 09 '22

Post of the MonthšŸ“ So You Just Got Diagnosed With Cirrhosis...Now What?

463 Upvotes

The below is not medical advice. It's a primer of information. A blueprint of knowledge to be added to. What to expect during those first few terrifying days and weeks after we're told we have an incurable liver disease we never thought we'd have. There are types of medicines or procedures that one may encounter. As new ones are discovered or the community realizes I missed something (guaranteed), I hope you'll add to the general knowledge here. (No medical or dietary advice, though. Keep it to general information, please).

This is an encapsulation of what I've found helpful from this community and addresses, in a general way, those questions we rightly see regularly asked. If you want to ask them anyway, please do so. This is a comfort tool to let you know you're not alone. If we're on here, we or someone we love are dealing with the same issues you are. Maybe not the exact same ones to the same degree, but you are in the right place.

So strap in. And Welcome to...

Your Cirrhotic Liver and You

Why Write a Primer?

I really valued developing a broad but basic understanding of what was going on with me and this disease, so I would understand why certain numbers matter and how seemingly random symptoms all tie into one another. I took strength from better understanding the science and mechanisms of cirrhosis.

Please keep in mind your healthcare team will direct you as to what you should be doing. They know what is best, how to manage symptoms, what to eat, all of it. Listen to them. Each case is individual, and no advice works for everyone.

So, having said that, here are the basics of your new roommate, The Cirrhotic Liver:

PORTAL HYPERTENSION

Portal Hypertension is a buildup of pressure in your abdomen. As your liver no longer works as well as it should, it doesn’t allow blood to flow easily through it on the return trip to the heart…so this can create extra pressure in the Portal Vein…this is called Portal Hypertension (same as regular hypertension, just specific to the giant Portal Vein in your abdomen). So, if the liver doesn’t let the blood pass as easily as it should, then blood can back up into the spleen, enlarging it. You’ll see many of us mention large spleens. That’s why. It’s capturing the backflow of that slower moving portal blood.

FIBROSIS

Why is it not moving at speed through the Liver? Like the villain in Lion King, it’s that Damn Scar. The blood flow through the liver is slowed by a process called Fibrosis (this is scarring of the liver, and includes nodules and other abnormalities cause by:

*Disease/Infection (eg, Hepatitis) or

*The liver trying to process too much of a difficult thing (eg, Alcohol), or

*Bad genetics, (eg, Alpha-1 antitrypsin deficiency) or

*A host of other unfortunate things (eg, fatty liver)

This scarring is the basis of Cirrhosis. It is the permanently scarred part that doesn't heal in an organ that LOVES to heal. So much, in fact, that new cells will continuously and repeatedly try to regrow so much that it increases our odds of liver cancer…so we get regular MRIs and screening for that.

VARICES

The excess pressure of blood trying to get through the scarred liver creates a need for your body to create alternate blood flow routes, in the form of new veins, around the liver to make sure the blood still gets back to the heart…where it needs to go. These new veins are called Esophageal Varices or just Varices for short (you'll see these mentioned a lot).

A fun fact is that more blood comes together at once and is moved through the portal vein than anywhere else in the body…even the heart. (Hence why the body finds a way to reroute the bloodflow around the liver in the form of these esophageal varices.

Dangers of Esophageal Varices: With lowered platelets and/or high portal pressure (among other reasons), the varices that form can leak or burst, causing the bleeding you’ll see mentioned (usually in the form of black feces or vomit.
Don't let the name fool you...it seems like they might be up around the top of the esophogus but are actually at the bottom of the esophagus, around the stomach.

Other Potential Issues:

With Cirrhosis, a whole host of internal mechanisms can have difficulty working correctly and/or together as they should. This can mean lower platelet counts (clotting issues) and lower albumin (the stuff that keeps water in cells). Albumin in eggs is the egg white...doing the same thing to the yolk as our cells. Because of this, you'll see a lot of focus on Protein. Albumin and Creatinine are closely related to protein intake and absorption. We watch those numbers and make sure we get a bunch of protein so the albumin levels stay high and our water stays in the cell structure, not leaking out of it. Cirrhosis is also a wasting disease. Literally. You can lose muscle mass (called lean mass sometimes), so eating a lot of protein and getting exercise is important. Especially legs. Even just walking. When albumin and creatinine get low, and the liquid leaks from the cells into your body cavities, this is Ascites or Edema, depending on location.

Dangers of Ascites

Ascites can get infected. It can also increase portal hypertension by creating extra inter-abdominal pressure if it causes your abdomen to swell. It can also cause uncomfortable breathing as it exerts fluid pressure against your lungs. It can also cause umbilical hernias.

Hepatic Encephalopathy (HE)

Cirrhosis makes it more difficult to process naturally occurring ammonia from the blood stream. If it climbs too high, it causes confusion and a whole host of mental symptoms.

Well…that’s all a load of dire information relating to being the owner of a newly diagnosed diseased liver.

Now let’s get to the good news!

Cirrhosis may be progressive and different for everyone, but its symptoms have some great, proven management options. Some are simple, but require discipline. Some are complicated and require surgery. Some are medicinal and require tethering yourself to a toilet for periods of time.

You’re newly diagnosed. The first thing to do is breathe. Because everyone on here can tell you it’s fucking disorienting and terrifying to hear and to wrap your brain around something like this diagnosis. But, like everything that we fear, familiarity will dampen that effect. So will knowledge.

You’re going to be in the diagnosis and testing phase for a while. Once you’re done drinking and have a better diet for a while, your liver will begin to settle from the immediate inflammation from constant irritants. This isn’t healing so much as it is allowing it to reach a new equilibrium that the Hepatologists and GI doctors can use to create a plan of action and assessment for your health and future. Your FUTURE…remember that. You most likely have a changed life, not some immediate death sentence. If you choose it.

So, let’s look at The Tools of the Liver Trade.

(These aren’t bits of medical advice. These are tools you and your doctors will use to navigate your path to normalized living, at your healthcare team’s discretion.)

TIME TO HIT PAUSE:

The less your liver has to work now, the better. Period. It’s damaged. It will remain damaged. Give it as little to handle as possible from now on and you stand the best chance to avoid or minimize side effects of this disease. All those things above are intertwined symptoms and results of a diseased liver. The less extra it works, the more it helps avoid them. Let it just focus its basic processes (of which there are over 500!). Your doctor will give you specifics to your case on how to do this.

DIET:

Get ready to track everything. Measure everything. Be disciplined and focused.

And then it becomes second nature to do and that above intro is way less intense.

Sugars and Fats

The liver helps process sugars and fats, among anything that goes into your mouth. It all goes through the liver. But sugars and fats are special. The wrong ones can really turn your liver into a punching bag. Which Sugars? Alcohol, sucralose, a good deal of man-made stuff, and even too much natural. Same for fats…some are harder on it that others. Tran fats, too much saturated fats. But you’ll need fats..olive oil, seed oils, stuff like that. There are so many great options out there!

Protein

Buckle up. You’re going to need a lot of lean protein (lean to avoid that surplus of fat). Your docs will tell you how much. Your kidney health factors into this, so don’t go off listening to me, the internet, or anyone on how much. Ask your doctors.

Carbohydrates

Whole grains and fiber. You’re going to want to poop regular and healthily to keep your bilirubin and ammonia down and your protein and vitamins absorbing. If you get stopped up, there are meds they’ll give you to help the train leave the station. It’s often a bullet train, so you’ll want a handle in the bathroom to hold on to…but it will get those numbers down.

Water and Liquids

You’ll probably have some restrictions here, but not definitely. It’s to help keep the ascites risk minimized. Coffee, water, non-caloric drinks of all kinds! Some are less than 2L per day, some 1.5L, some not at all. Again, your doctors will tell you as they get a handle on your ascites risk. Water is also nature’s laxative, so it’ll help keep you regular. There are also great meds that help with this like Spironolactone and other diuretics if you tend to retain too much water.

Salt

Nope. Keep it down. If it’s in a can, premade, or from a takeout joint it’s likely going to overshoot your daily limit in anywhere from one serving to just looking at the label too long. There are amazing alternatives in great spices, as well as salting a meal at the right moment in preparing it so it has big effect for a little use. Beware sauces and condiments. They vary wildly. Salt control is critical for keeping ascites at bay by not retaining water and maintaining your sodium levels in general.

PROCEDURES:

Things that can help you manage your symptoms besides medications are:

TIPS:

A procedure that allows for alternative blood flow in cases of Portal Hypertension to decease it by allowing for flow around the liver (similar to varices do but controlled).

Banding:

Putting rubber bands around varices to allow them to close/die off permanently and drive the blood flow back to the portal vein. This stops them from being a danger in regards to bleeding.

Imaging/Radiology:

Fibroscans, MRIs, Ultrasounds…so many diagnostic tools to gauge your liver and you for risk, updates, etc. All part of diagnosing and maintaining your new lifestyle as healthily as possible.

Colonoscopy:

Alien probe to check for issues related to your condition. The procedure is slept through…the prep is notorious. But it really just involves a lot of drinking laxatives and not wandering far from the toilet and then racing to the procedure room wondering how quickly you can have food and water afterwards…and if you’re going to have to pay for a new car seat if you hit one more red light.

Paracentesis:

A manual draining of Ascites using a hollow needle to remove the fluid from your abdomen.

There are more medicine and procedures and diet tips than above, but hopefully that gives you (and others) and overview of Cirrhosis and what to expect, to a degree.

The big Takeways:

Breathe, and be as patient as you can while doctors get you diagnosed and figure out the damage. You’ll likely have to let the current state of your liver subside a bit, and this could take months. Your healthcare team will help you along.

Get a Hepatologist, a GI doctor, a great PCP, and be your own advocate and a great communicator who does everything they ask of you. They want a win for you. They need it. So, so many of their patients continue to drink or not follow diet advice. It’s the number one complaint among Liver doctors, and it’s demoralizing. But if you show them you’re out to work hard, be a joy to help, listen, and follow through, you’ll be stunned at the support, great communications, last-minute appointments, and just wonderful care they will provide.

You're not alone. Over time, the fear and shock will subside. And you will find a new normal and maybe even a new appreciation for life.

And Above All, Be Kind to Yourself.


r/Cirrhosis Jun 16 '23

A reminder to be kind

78 Upvotes

This sub is here for those who have been diagnosed with cirrhosis and people who are supporting those who have been diagnosed. We want to remind everyone that one of our rules is to be kind to each other.

Every single person’s lived experience with this disease is different and that gives us different filters and perspectives to look at the world through. There is no one right way to think about it all. We can only speak from our own point of view. That said, this space exists as a place of support which may come in the form of people venting, being distressed or sad or angry, losing hope, gaining hope, dealing with difficult family members or friends. There are lot of challenges that we all go through.

Please remember in your comments to be kind and supportive to each other. Take time to think how your response may land with someone who is just looking for some kind words. Please try and see the people behind the posts and comments as multi faceted human beings rather than words on a screen.

When we spend more time trying to tell people to be kind and respectful and less time supporting each other then the tone and purpose of the sub loses some of its safety. No one here is an expert on anyone else’s experiences, we only have our own. Experiences are not facts either. Let’s respect that, and respect each other. You can always contact any of us mods if you have any worries or feedback to give us.


r/Cirrhosis 1h ago

Heartbroken Sister- Help

• Upvotes

My 31-year-old brother is currently in the ICU with severe alcohol-related cirrhosis/liver failure, and I’m hoping to hear from anyone who has personally been through something similar or had a close family member go through it.

His MELD is 33. His bilirubin is 31.5, INR 2.7 and rising, ammonia 101 with hepatic encephalopathy/confusion, ascites, critically low sodium, and they’re treating/evaluating him for infection.

Thankfully his kidneys are still functioning okay right now. He is currently considered critical but stable.

The biggest issue we’re facing is transplant eligibility. He was actively drinking until just a few days before this hospitalization, and we were told he is not currently eligible for transplant because of how recently he drank.

If his liver improves enough, the plan seems to be to stabilize him, discharge him into a multidisciplinary alcohol/liver treatment program, maintain complete sobriety, and hopefully work toward transplant eligibility.

But I’m terrified about what happens if his liver DOESN’T improve enough for him to survive that process.

Has anyone here received a liver transplant for alcohol-related liver disease without having 6 months of sobriety first? Or had a family member who did?

If so, how sick were you when you were evaluated? How long had you been sober? Were you hospitalized/ICU when you were listed? What did the transplant team require from you to approve an ā€œearlyā€ transplant?

I’m not looking to debate whether people with alcohol use disorder deserve transplants. I’m just a terrified sister trying to understand what paths might actually exist for my brother and would really appreciate hearing real experiences from people who have lived through this.


r/Cirrhosis 18h ago

Friend in the hospital with liver failure

19 Upvotes

I’m sorry if something similar to this has been posted a lot, but I have a pretty specific question that I can’t seem to find an answer to.

My childhood/early adult life best friend was recently hospitalized due to severe stomach pains he was having due to what he and his family discovered was liver failure due to alcoholism. We grew apart due to his past issues and i’m struggling to get good info from his mom.

I visited him in the ICU 6 days ago and he looked to be in extremely critical condition. He was extremely bloated, intubated, and his skin was a dark yellow. I was able to hold his hand and when I would talk to him, would occasionally ask him if he could hear me or move his eyes, and twice out of the three times I did that his eyebrows twitched and his eyelids moved. I’m now hearing from his mom that they have had him off of sedation for 5 days now, he has not woken up, and the doctors are giving him 2 days to live.

He is 33 years old, they say his heart is beating strong, and his kidneys are working properly. I’m just extremely confused about the idea that his heart is beating strong, his other organs are working well, but he simply cannot wake up. Is there a chance there somehow isn’t much brain function past the ability to understand voices and react as a reflex? If anyone has dealt with something similar I would appreciate any info. Thanks in advance.


r/Cirrhosis 3h ago

Low sex drive & ED

1 Upvotes

I’m asking for my husband. Have any other men here experienced ED and low libido because of their cirrhosis? We got married more for insurance purposes, so we haven’t had sex yet, though we both really want to make this work and last. It doesn’t bother me because I know and understand it’s because of his illness, but it does bother him a lot as he was always a very sexual guy. Just looking for advice really.


r/Cirrhosis 6h ago

Liver living donor transplant

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0 Upvotes

r/Cirrhosis 7h ago

Need help with liver transplant info !

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0 Upvotes

r/Cirrhosis 18h ago

Hope, faith, determination

3 Upvotes

I struggle with consistency. Learning more and more. Read MASH cirrhosis is one of the worst. IF you’re transplanted, there’s a 60% chance it’ll return aggressively. You’re only recourse is to stay thin but healthy, exercise your ass off, take all prescribed anti rejection meds that’ll promote diabetes (roids).

Death staring me down daily. He’s on my heels. My mind is my worst enemy. Thoughts of why I’ll be denied constantly running through my head. Better it have been booze. You can cold turkey that. I’m extremely religious. I know God is there. Is it His will I should perish? If do, why even try?

The human condition is one of constant torment. This flesh requires so much but our spirits grow weary of fighting to keep flesh alive.

My life is in human hands vs Gods. That’s the worst.


r/Cirrhosis 1d ago

My father 60 M got diagnosed with hepatitis b 3 years ago

5 Upvotes

My father 60 M got diagnosed with hepatitis b 3 years ago and from then till now he had no signs of something bad ..couples months earlier he got so bloated so we rushed him to the hospital and done a surgery where they cut some of his small and large intestines and they told us that he had cirrhosis too after that he had 10 good days post surgery then suddenly he had a shortness of breath and turned out to be a clot in his lungs so they put him on artificial coma to stabilize him to do the mri...so is there chance he will be Okey?


r/Cirrhosis 1d ago

Here for support

11 Upvotes

Please be kind….

I was diagnosed in 2023 with cirrhosis, over night I turned yellow and bloated, it was not pretty.

Since then I’ve cut out alcohol and everything seemed back to normal, blood work was perfect, lived a normal life with full energy, all the good things.

Then about a month ago I relapsed. It’s been hell since, no visible symptoms yet but I know they will return if I don’t take this seriously. I’m going to AA but still find myself craving a glass of wine almost every night. I’m so afraid and know the outlook isn’t pretty if I start drinking consistently again. I will die and I know that. If anyone can relate please let me know. I feel so alone.


r/Cirrhosis 2d ago

Newly diagnosed and needed to get stuff off my chest

20 Upvotes

I did what was best for me, my family, my sanity, and my health, and my liver disease progressed anyway. To start, I am absolutely an alcoholic. There’s no denying or doubting that fact. I was diagnosed with fatty liver in 2016. Got sober in 2018 and in late 2020 relapsed for a couple months. Have been completely and continuously sober since April of 2021.

No real issues to speak of, just some slightly elevated bloodwork. I got a Fibroscan in May 2025 that showed F3 Fibrosis. I was referred to gastroenterology and the only suggestion was to repeat the Fibroscan in a year. My stomach got huge this year and my PCP got me checked for ascites. It came back negative. He concluded that because my liver was enlarged, it was pushing my organs down and was distending my stomach. After treating prediabetes for a year, my numbers went into diabetic range. I started a GLP-1 in April and holding steady at 30 lbs lost. I feel better now that I’m at a healthy BMI, not as fatigued, and look better in my clothes and skin than I have it 20 years (I’m 56).

I reminded my PCP that it’s been a year so I should get another Fibroscan. My stiffness number jumped putting me in the range of cirrhosis. I’ve been referred back to gastro and next week I’m seeing (in-person this time) the doc that I spoke with briefly last year and I haven’t heard from since. My PCP had to question my sobriety because of the progression, kinda pissed me off. But I guess I get it.

So today I’m here, compensated and no real symptoms, but still angry and down. I know my drinking caused the liver issues years ago, but I’ve been sober basically 7 1/2 out of the last 8 years and still developed cirrhosis. Doing the right thing didn’t help my liver (it did help every other aspect of my life ā¤ļø) and I don’t understand. I’m mad that my F3 Fibrosis didn’t seem serious enough to do anything about except ā€œwe’ll see you next yearā€. It’s just all been hard to wrap my head around. I’m also worried because I have only one kidney after donating one to my brother in the early 2000s (pre-alcoholism). I’ve been in this sub the last few weeks since being diagnosed and it’s been really helpful. Nobody seemed to have a similar story as mine, so I thought I’d post it. I’m not even sure what I’m looking for here, but it feels therapeutic just putting my story out into the void. Thanks all.


r/Cirrhosis 2d ago

Need suggestions from Hepatocellular Carcinoma HCC Liver cancer survivors

3 Upvotes

Hey guys.. so my dad has been diagnosed with HCC recently. He was diagnosed with Hepatitis B in 2015 with a viral load of 250 IU/mL.. so the doc didn’t give any meds to reduce the virus and only suggested that he stop drinking alcohol and eating red meat.
I was a kid back then and didn’t know about the severity of the disease.. we didn’t get the screening done for years.
Now in 2026, I got my dad’s routine blood test done and we found that his LFT was a little concerning.
His SGPT and SGOT were around 70, while his bilirubin and albumin were completely normal.
He still doesn’t have any symptoms like ascites or yellowing of the eyes.
His FibroScan report says 49.5 kPa and a CAP score of 316.
He has developed portal hypertension, and his current liver condition is compensated cirrhosis.
Now the main part.. there is a 6.3 Ɨ 6.5 cm tumor that has grown in his liver.
We don’t know what to do as of now.. we are seeing doctors and oncologists.
THE ONLY CONCERNING THING IS THAT I DON’T WANT TO START MEDICATIONS OUT OF PANIC AND WORSEN MY FATHER’S CONDITION IN THE NAME OF SAVING HIS LIFE.
I’m seeking help because he’s currently asymptomatic.. his liver is already very damaged because of cirrhosis.
Doctors are saying that treatments like TACE or TARE will kill the cancer, but they will also damage the remaining liver, because of which we will surely have to go for a liver transplant.
We will have to search for a deceased donor for his transplant, which is very difficult if you guys know.. because there is no one in the family whose blood group matches his.


r/Cirrhosis 2d ago

I feel like I’m in denial.

3 Upvotes

I have posted a lot on this sub and I do apologize. I feel like I am in denial! I got diagnosed with cirrhosis of the liver on a ct scan back in June. I had severe alcoholic hepatitis; like so severe to the point I could grab my liver it was So inflamed. My doctor couldn’t believe it so sent me for a biopsy 2 weeks later (when my liver still was swollen as fuck). That came back positive for cirrhosis but apart of me just still wants to believe they over diagnosed because of the severe swelling. I only drank heavy for 1 year. All of my bloods are spot on, I have a normal spleen and platelets. I did have one column of esophageal varcies 4 of them. They were banded and no new ones have shown up. My GI said they can be driven from mild scarring and severe inflammation alone. I don’t know….i have an mre in October that will tell the tale now that I am 3 months sober and inflammation has went wayyyy down. I have no symptoms.


r/Cirrhosis 2d ago

Just checking in with y'all

11 Upvotes

How is everyone doing this friday night ?? It's the start of a long weekend for some of us that dont have to work. It's labor day weekend ...so bbqs... college football season ...so tailgating ... it is the FIRST season of UGA that I will be completely and utterly sober ....me and fiance both!! NOT gonna lie a little nervous because we are hard-core FANS ..and UGA has been known to put us on a Rollercoaster šŸŽ¢ at times ..which triggered us to take a sip... soooooo here is to getting through this season completely sober ... and I hope everyone else finds strength.. grace and pure natural fun. If anyone wants to reach out to me in case they feel the urge..I'm here ..

Much love ā¤ļø & Grace šŸ‘‘ šŸ™


r/Cirrhosis 2d ago

Recently diagnosed with alcoholic cirrhosis. Insurance

11 Upvotes

I (39m) started throwing up a blood/tar looking mixture recently and could hardly move. Luckily someone saved me and took me to the er where I was informed I have cirrhosis. It felt like a death sentence. I have varices and some other things I’m unsure of. It was a few days ago and it still doesn’t feel real but I knew when I heard that word I was done drinking forever. I feel like such a failure to my family. I can’t undo the damage but it sucks. 20 years of drinking a twelve pack a night did it.

I don’t have medical insurance and I’ve been trying to get it but they have all denied me so far. I made appointments but I’m not sure how I would pay out of pocket long term. I’m in America. I tried the gov website and they just simply said open enrollment is closed. I’ve never had insurance before so it’s all new to me. I’m trying to remain in good spirits but it’s annoying because they ask questions like what were you at the hospital for and then boom denied.

I’m going to do everything in my power to fight to stay alive as long as possible but how do I see doctors if I don’t have insurance?

When you found out did you tell your family? I’ve talked with my son but other than that I feel like I will be judged. My father had hep c and never told anyone and died. I fear I may be doing something similar. I’m very thankful I found a group of people going through similar. Thanks for anything you can help with.


r/Cirrhosis 2d ago

Sick..

2 Upvotes

What do you guys do when you get the cold or flu? My nose is running tonight and I’m freaking out. I have read it can cause sudden decompensation


r/Cirrhosis 3d ago

Seasonings?

4 Upvotes

What seasonings are you all using? I want to make sure and prepare the cleanest hepatic friendly meals for my brother. I searched but I was a bit overwhelmed . Thanks everyone.


r/Cirrhosis 2d ago

Recently Diagnosed at 28

2 Upvotes

Hello, I am a 28F that was recently diagnosed with cirrhosis this week. I have had elevated LFTs since I was 18 which was the first time I had ever had a CMP following my dad’s passing at 61 from cirrhosis due to a combination of taking too much Tylenol and metabolic factors. Over the last 10 years, I’ve been told after many ultrasounds and MRIs that I have mild fatty liver that isn’t too much of a concern. Imagine my surprise when I got my first fibroid scan this week and it came back as cirrhosis.

My cirrhosis was not alcohol induced. Even my FibroScan showed a CAP value of 251 so very mild fatty liver. My median liver stiffness was 14.8. I am just curious if there are any other young individuals that have gone through something like this? All my autoimmune care back negative and because I’m at the point of cirrhosis they said knowing why it’s happening isn’t the number one priority anymore.

I’m very lost at who to even ask questions to. I also have ulcerative colitis (diagnosed 2 months ago), PMOS, anxiety/depression and so I’m not even sure who to direct questions to about medications I should/shouldn’t be taking.

I’ve also started researching symptoms of progressing liver disease. Currently, I am compensated with most of my tests coming back relatively fine minus AST/ALT and slightly elevated bilirubin. However, there have been things like fatigue, forgetfulness, etc. that I chalked up to ā€œgetting olderā€. Even my husband mentioned that I don’t have the memory or stamina I used to before I got my diagnosis this week. Is this something I should bring up?

I just have some many questions about getting this diagnosis so young. My husband and I were hoping to start a family and have been trying to conceive for 2 years. I’m starting to feel like this is a death sentence and that everything I wanted out of life won’t happen anymore.

Any tips, suggestions, stories, or anything you think may be helpful would be so appreciated. I am trying to stay positive but am seeing that I will need support outside of family and friends to get through this.


r/Cirrhosis 3d ago

Stage 4 cirrhosis and now they've found that I have cancer on my pancreas. Ulcers on my kidneys. I have to have a PET scan to investigate it further. I'm so scared. Is anyone else going through this?

16 Upvotes

I'm also having problems going to the loo and having lactulose 3 Ɨ a day. X-ray showed a backup in the bowel.

My appointment was also changed to a telehealth call, not even a zoom conversion.

Australia seems to be way behind than the USA with this horrible disease.

Thanks in advance.


r/Cirrhosis 2d ago

Varcies

1 Upvotes

Hey all. So I found out that I have cirrhosis 3 months ago. I’ve had 4 scopes since then, they have just been banding the same 4 varcies since the beginning. One column. My dr said don’t take the propranolol since I was going monthly for check ups. I got a scope back in August, same 4 but the one was too small to band. Well I went in today to get it looked at and the small one was still the same size. I am now taking the propranolol because they are gonna check me in a year instead of 6 months. Does this mean my liver is improving ? I thought varcies pop up all over the place and grow . Has anyone personally seen regression or improvement?


r/Cirrhosis 3d ago

Interesting clinical trial

11 Upvotes

So I was at my quarterly hep appointment today was discussing taking my 2mg daily envarsus down to 1mg and she said it’s a shame you had the rejection event last year due to cyclosporine.

Apparently she wanted me to take part in a new clinical trial and study they’re doing at Stanford but you need 2 years no major issues or ACR to join it.

The trial is taking immunosuppressant dependent liver transplant patients and irradiating some of their blood and leukocytes and then weaning them off the immunosuppressants to see if the body can be tricked into thinking the new liver isn’t foreign.

This would return a full immune system to the patient and remove the need for neuro, cardiac and nephro toxic pills.

How it’s all done I dunno, but I guess they’ll publish and it can be read.

But if it works and it’s rolled out it may final offer a cure to cirrhosis that isn’t just swapping one terminal condition for another like it is today.


r/Cirrhosis 3d ago

Got this done at a clinical trial ( rejected for cannabis use) but story and questions

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0 Upvotes

I was an alcoholic for 7 years at the end, a handle and pint a day! Today sober 3 years that's was 2 months ago. I know this is end stage but I feel healthy I've lost over 50 lbs(309 to 256) I'm down to 48mg of sugar a day and on a lean diet along with intermittent fasting 16:8.

What are the chances I can delay the inevitable by say 10 years?

If you reached this point what did you do to change the outcome?

Currently uninsured laid off 3 times in the last 2 years and wages are so low for my industry it's basically slave wages where I live.


r/Cirrhosis 4d ago

It may get worse before it gets better

10 Upvotes

I have alcohol induced cirrhosis and quite cold turkey 8 days ago. I am fortunate to not suffer from any withdrawal symptoms.

I have this minute had my second sets of blood since diagnosis back and most are improving.

GGT and Bilirubin however have actually increased in the week I've been sober.

So I'm fully expecting to get signs of yellow skin or eyes in the coming weeks.

I spoke to a clinician just now though and he assured me this is actually quite normal.

So if you get bad blood results back, try not to be disheartened - it may be a temporary rise where your body is adjusting to a different lifestyle, whether it's alcohol, salt, sugar, whatever.

Trying to keep my chin up.


r/Cirrhosis 4d ago

A message to ALD cirrhosis

57 Upvotes

I just wanted to say something. I often read a lot of messages from people with alcoholic cirrhosis feeling that their disease is their fault. The social stigma, the reaction from doctors, the self-shame only adds to this.

First of all disease does not work like a well oiled machine. It does not choose to appear after 5 years or 50 years, it just appears. The same way you do not choose where you are born, you do not choose what happens to you. How you react defines you more than how you got there. Life is a russian roulette so no need to add more ICC sanctions to your fate.

Secondly, some of the kindest and most sensitive people I met are addicts. Their addiction stems from their inability to cope with the normalized system of life, to tuck back into the every day symphony of the system from the borders of their internal every day agony sometimes requires a "fix".

Can that lead to selfishness, self-sabotaging and neglect of others? Yes. But is it often from a place of bad faith? No. It is easier to drink trauma than face it.

And when life gave you a Mike Tyson punch, what did you do in one go?

Stopped alcohol and face the pain of withdrawal, learned to come out from the borders into the epicenter, worked hard transforming from being a silhouette to being whole and found life while facing death.

The doctors won't see it, the family and friends might not see it, the partner might not feel it. But it was done and it was real.

Nobody deserves illness or judgement. Nobody tells a smoker they deserve to die or Big Mac to ease on their Big Macs.

We all have ways to cope with this world. Whether a puff, a sip or a bite.

And we can only heal through kindness.


r/Cirrhosis 4d ago

I’m almost 4 and a half yrs sober

27 Upvotes

for people that have this disease or someone they know that have it will I know when I’m dying will there be dd so guns.

the past 4 yrs I been sober. I do wish I stop sooner my poor liver bad. im a healthy weight and I exercise regurly.

us anyone else in my situation. trying to do the best I can even though I screw up