Cirrhosis Progression

[puddy68]

Hi Everyone. I've spent the afternoon reading all of your lovely posts, and I'm so sorry, but I have another question. I was under the impression that decompensated can revert to compensated, as long as you work really hard at it [no drinking/exercise/clean eating]. I realise that this a life long commitment. However I just read that even if you do this, the cirrhosis will continue to progress anyway. My anxiety has reared its ugly head again. Would anyone be able to shed some light on this please? Thank you so much.

[DaveQ67]

Hi,

My take on it in what has now been just over a year is…. You can hunt for a definitive answer on anything related to cirrhosis.

Please if you find one, let us know on here. It’s a frustrating experience. My take from it is a definitive answer does not exist.

It’s down to the individual and a whole lot of luck.

The main advantage to stop progression is to find the cause. Mine was alcohol. I stopped the second I heard or more accurate a few days before I heard. Not a drop since.

I’ve always been fit, I started back exercising, cut out the rubbish food, and moved decompensated to compensated in 4 months.

I am determined to reverse the unreversable but I try not to obsess about it and focus on building a healthy body and mind. Hopefully the liver follows soot.

To get a simple question answered by anyone is like getting blood out a stone. I tried to find out if I could take a protein supplement to train. It took me 2 months and many phone calls to find out.

I have been told in regards to your question ( one I also asked) yes you can by stopping the cause. But…… followed by you need to eat correctly or it can worsen in time.

You won’t find many success stories online. You will on here albeit a few. But there are several stories out there on social media, I spoke to a few people at AA who have had cirrhosis 36 years. One had died twice and was now feeling great.

In a nutshell, the advice you are given through life is pretty much the lifestyle to follow. You can only do your bit the rest is out with your control.

I personally look and feel far better now 1 year later than the wreck I was before diagnosis and the years leading up to it.

Focus on what you can control, the rest doesn’t matter. Be patient. I couldn’t walk 100 meters, was 17 stone, looked awful, jaundice. Had no balance and couldn’t shower. Varices annd little anscites. Abandoned by everyone, Unable to work and was told I had months to live.

I treated it as a fork in the road. Decision time, not just survival but to have a good healthy life.

Now by living as healthy as I can, 5 stone lighter, running 5k faster than ever. Feel full of energy bloods stable and now progression on my US. Also been studying full time for a new career. My clothes I had at 20 fit me again at 43. Unfortunately fashions changed!!!

Focus on you, explore what diet suits and be patient on your progress, it will come.!

[puddy68 in reply to DaveQ67]

Thank you so much, Dave. You, and the other people on this forum, are just amazing. You were so kind to put so much thought and effort into your reply to me. You have definitely eased my anxiety.... thank you so much. God Bless.

[DaveQ67 in reply to puddy68]

No problem, I wish I found this site at the start.

I came on here after 4 months. I would try one thing, then jump onto the next without giving it time. So many questions and nobody could really tell me what to do. It was all very overwhelming and frustrating.

The day after I got out hospital I went to the gym. Walking there finished me. Just persevere, have a plan. Stick to an eating plan. I’ve heard vegan with plant based protein and loads of fruit is really good. I just struggle with it. I was counting sodium, if you’re eating clean you don’t really have to count anything. It’s all common sense.

It really is just planning and sticking to it. The way I see it if I’m looking and feeling good all can’t be bad. Before hospital I was sick every day, sleeping all the time. I was really ill. A social media site really helped me in addition to here. Good ideas but it was the success stories that really hit home. The body is an incredible machine if given the proper fuel. The hard part is making the changes.

[RugbyMama]

So my back story here.

I joined this forum in a tailspin when my husband was told he had some kind of issue with his liver in December 2022. He stopped drinking at this time. I can't remember all his test results but the doctors were immediately looking at his liver.

In 6 months he had every test under the sun, lost 6 stone, got diagnosed with a genetic blood disorder, insulin-dependent type 2 diabetes, pancreatitis and liver cirrhosis.

Cirrhosis means that your liver is at a point where it can no longer regenerate itself. It should be soft, slippery and bouncy, it regenerates itself constantly- this is why a healthy person can donate part of their liver, because it can regenerate. It is the most forgiving organ in your body. With cirrhosis, it becomes tough, blood struggles to flow through it and it can no longer regenerate itself. Your liver performs 500 functions and when it's ability to perform these functions fails, other symptoms appear like varices and ascites or hepatic encephalopathy. Cirrhosis without any of these symptoms is compensated. Cirrhosis with these symptoms is bordering on decompensated.

You can switch between compensated and decompensated and back again. But your cirrhosis will never go away, it's a lifelong disease. It may improve and then get progressively worse. But plenty of people on this forum live long, relatively normal lives with cirrhosis. And no two journeys are the same, your liver is a fickle thing, so don't assume because you read one story on here that's how it will go for you.

Eat well, exercise gently and above all else remain abstinent. You're living with liver disease, not dying from liver disease. And STEP AWAY FROM DR GOOGLE!

[puddy68 in reply to RugbyMama]

Thank you so much, RugbyMama. I learnt a lot from your post, and I particularly like your statement that I'm "living with liver disease, not dying from liver disease". Thank you so much once again. God Bless.

[Rshc]

you can definitely revert from decompensated to compensated. My partner was as poorly as could be, with all the symptoms he is now more or less symptom free and was told at his last scan the overall look and outline of liver was much improved . Our hope is he will live a long and happy life

[puddy68 in reply to Rshc]

Thank you so much, Rshc. I am so happy for you and your partner, and the fact that he is now more or less symptom free. You give me hope. God Bless.

[Kristian]

There's a simple answer to this. The " will progress despite..." is very person specific and cause specific. Some may be unlucky but for many others, progression may stop or even improve. The key thing that influences what happens is removal of what is causing the damage. For some diseases that's not possible for others it will certainly help. There's obviously no garauntees, but it will certainly increase your chances.

[puddy68 in reply to Kristian]

Thanks so much, Kristian. My specialist actually more or less told me that giving up alcohol [which I've done - nearly 5 weeks without a drink], eating cleanly and exercise are all obviously a good thing, but it really comes down to how my liver/body reacts to doing these things. I realise that in life there are no certainties, but oh how I wish I knew for certain that doing these things will prolong my life. Thank you so much once again...God Bless.

[Rshc in reply to puddy68]

the cause of my partners cirrhosis was alcohol and one thing is for sure, giving up will have significantly prolonged his life. When he was rushed to hospital his bloods we so deranged that I don't expect he would have survived much longer. Even after 5 days of not drinking his bloods started to improve. Imagine what you could achieve after 5 months or years. I think Doctors are particularly blunt with patients that have cirrhosis due to alcohol because they have experienced many people who simply continue to drink, we certainly felt with my partner there was an expectation he wouldn't give up . They also dish out a bit of tough love because they want to shock you a bit I expect. My partner is a living breathing example of how you can turn things around and the impact of giving up drinking.

[puddy68 in reply to Rshc]

Thank you again to replying to one of my posts, Rshc. My husband was with me at my last specialists appointment, and he actually got the impression that my specialist didn't think I would stop drinking, so I think you're right with what you say. I'm so pleased that things are going so well for your partner. Your comments about bloods are also so encouraging - thank you so much. God Bless.

[kensimmons]

It can stay compensated for many years. There are patients who have it and live 20 years and more. Dont get depressed, you can be okay. No guarantees of course. Keep your chin up and dont overtink or overworry. Just do what you have been told, good news should follow.

[puddy68 in reply to kensimmons]

Thank you so much, Kensimmons. Your reply came at just the right time as I've had a very down day today, constantly thinking that because cirrhosis is called terminal, that I might not have long left. It's the uncertainty that's got to me I think, and the mixed messages I get from my specialist. One moment he's telling me I've got less than 5 years to live, then during the same appointment he tells me I can reverse from decompensated to compensated, and he then he mentioned a patient who lived for well over 20 years with this. The mornings, when I first wake up, are the worst. Thank you so much again for your reply.

[Snips71]

Hi Puddy. My hubby liver is beyond repair so we are waiting for our final assessment at Brum. Some cirhotic livers can improve so best thing is to have a chat with the liver nurse or the heptologists.

My hubbys was diagnosed as NASH as they couldn’t find another reason.

The signs happened suddenly but to late to be able to do anything about it.

Please try and get some answers before you worry even though I do that all the time xx