longevity

[Liveitup713]

I had seen something on here from someone that said that there are several people on this forum with cirrosis that has lived over 20 years? Is this true? If so, I would love to hear how they did that.

Thanks

[lonmallin50]

Many live there life with cirrhosis for years like you say they die with it not because of it. If you find the problem thats causing it say drink just cut the drink out eat healthy keep fit there the most important things the liver can go through a lot of damage and still survive if its caught early. The people that have lived there life for 20+ years just made changes where needed.

[Liveitup713 in reply to lonmallin50]

Thank you

[Aotea2012]

I have cirrhosis and was very ill to start. I was diagnosed in hospital, having been admitted with a deep rooted infection which had pushed my liver into acute on chronic liver failure. It really scared me. I got through it with some fantastic NHS care and vowed to change my lifestyle. That was three and a half years ago. I stopped drinking the day I was admitted and haven’t touched a drop since. I live a normal life and work in a demanding job. My scans are clear of any nasties and show normal blood flow through my liver. My bloods are all normal. I had two grade one varices at diagnosis….these had gone at my last endoscopy. I’m careful with my diet and eat a protein rich Mediterranean diet. A lot of chicken, pulses, turkey and fish with salads and veggies. I’m not so strict that I can’t have the occasional bit of chocolate or the odd takeaway though. I enjoy life and feel well. How long have I got left? Who knows! My consultant was really honest and told me he had no idea either! As long as I continue to live like I live then his best guess was normal life expectancy. Of course I take risks every day….like getting up, driving a car to and from work, walking passed a lot of buses to get a sandwich at lunchtime and riding a horse when I get home! I used to worry about my disease and frequently tried to work out how many years I’d shaved off my life because of my drinking. These days I’ve stopped worrying. I look after myself and listen to the healthcare professionals who care for me and live each day as it comes. I think in many ways…this second bite of life, which is how I now look at it…is more productive and happier. It’s not filled with hangovers, blackouts and arguments fuelled by alcohol. It’s much more fulfilling and filled with more joy.

[Liveitup713 in reply to Aotea2012]

Thankyou

[Liveitup713 in reply to Liveitup713]

That's great! Ididnt know the varices could go away?

[Aotea2012 in reply to Liveitup713]

I didn’t either. I remember asking the consultant whether he’d got it right! He assured me that he’d been scoping for many years and that he was sure there were no varices! He explained that my liver condition had improved because of my lifestyle changes (no alcohol, improved diet and exercise) and with it the portal hypertension which had caused the varices had gone.

[Grassroots112 in reply to Liveitup713]

Before my own issues I didn’t know what ascites was, portal hypertension or any of it other than that jaundice was liver related, or certainly was in my case. Then I learned all about them and the DR Google driven horror stories…

I’ve since learned, however, that ascites, varices, portal hypertension, blocked bile ducts, spider nevi and other things pertaining to liver disease and cirrhosis can disappear even as well as that a cirrhotic liver can return to normal size as can the spleen.

I’m also learning that while extremely rare, actual cirrhosis can also be reversed and has been reversed, some people have been fortunate to have reversed their cirrhosis. You can certainly most definitely 100% reverse fibrosis which is still scarring after all as cirrhosis very much is.

And I learned all that mainly on here otherwise I’d be stuck with I’m dying, have 2 years max to live if I’m lucky and that little red spot that wasn’t there a few months back must mean my liver is dying and I need a transplant or something or that when I’m full after a large meal, that must mean my ascites is back.

[Pie-eater]

I had cirrhosis for at least 27 years, all I did was avoid alcohol, even though that wasn’t the primary cause. Eventually developed cancer and had a transplant.

[LolaBow]

Hi, I was diagnosed with NAFLD stage 3/4 fibrosis around 18 mths ago, In June my Consultant said it is now stage 4 ( early Cirrhosis) I was shocked that it has got worse.. Can't understand why.. ( it was caused through medication) I have now come off all meds.. One thing that sticks in my mind is the Consultant said has I was leaving.. " you could live into your 90's and die with Cirrhosis not of it".. which made me feel positive.. and look more into the future.. Their is alot of people out there that have it and don't even know they have it and continue to live has they would normally.. Obviously knowing what I have got I have made some changes in my life and hopefully for the better.. Onwards and upwards is now my motto.X

[Dogbot]

Hi I’d just thought I’d let you know that my liver just about packed up on the 28/9/2003 , I was rushed into hospital and the doctor in the morning said well I’m was sure I was going to be writing your death certificate last night. Well in and out of hospital heath was up and down but I got my transplant 23/3/2023, now living a great life with grandchildren I didn’t have and a happy wife. Trick was NO alcohol fairly good diet and a bit of exercise when possible, no gym work just walking , every now and then a few small weights . Good luck to you from me and the wife 👍.

Stay safe all Dogbot 🐶🌈Dave

[Liveitup713 in reply to Dogbot]

Thank you

[Cat19]

I have had PBC with cirrhosis for 27 years

I gave up all alcohol and eat little red meat I try to eat health food

[4pjx__ in reply to Cat19]

Cat19, thank you for sharing this. I have PBC with cirrhosis too. I was diagnosed in 2017 . I have labs coming up this week and I do get to worrying about it , gets worse just before labs. Anyway, you gave me some hope!

-Pam

[isi123]

In my maternal family, we have hemochromatosis. My grandmother lived for more than 20 years after being diagnosed with cirrhosis. She passed away at over 85 years old. She had a controlled diet, an active lifestyle, regular medical check-ups, and lived as if she weren't sick. We only had one scare once with a digestive hemorrhage. I have inherited hemochromatosis and liver problems, I only hope to have 50% of her luck

[Millie09]

Hi 👋, I was diagnosed with end stage cirrhosis in 2008 , 6 months prognosis if I had continued to drink alcohol , I used this as a crutch for my awful anxiety and being abused by my ex husband, with hard work, improved diet , low salt , exercise of some form, I have other health issues that limits my mobility some days .. so moving onwards I'm now over 16 yrs living with cirrhosis, things are still ticking over nicely, no idea if or when I may need a transplant but I count my blessings each morning I awake , it's another day to enjoy, another day to spend with my family, try not to overthink life expectancy, we are all different, just enjoy life as it comes.. My very best .. Linda

[DaveQ67]

Hi, the NHS have told me the maximum life expectancy they issue is 15+ years for Cirrhosis diagnosis. That’s went up from 12 years.

So they are seeing longer life without transplant in those diagnosed. 15 months ago I was told months to live. 1 year on told 15+ years. Who knows if this will improve ifurther with advancement in technology.

I know one man who was in a similar position to me, he is still going happily along after 38 years since diagnosis.

[Greengal314 in reply to DaveQ67]

38 years…that is an inspiration. 😮

[2022minks]

My mum passed away from Nash in 2022, she was diagnosed at decompensated stage in 2017, not eligible for transplant. Looking back in her medical history she should have been diagnosed earlier and from such amazing stories here she may of have been able to change her outcome. In 2017 she was expected to have about 2 years but she survived 5 years, she always had faith in life so if you have been told you can improve your livers health then do it, make the changes, get support for mind and body and live your life's as well as you can because many never get the opportunity with this disease. Its SO amazing that it can be possible to reverse your outcome by changing what you put into your body's so sending much love to all with Liver Disease ❤ huge love to those lost from Liver Disease xx

[Grassroots112]

Bit late to the party here, but my own hep doctor says he has patients who were diagnosed with cirrhosis over 20 years back and someone I know has a relative who was diagnosed over 20 years ago through drinking and apparently you would never know to look at them. I think most of what is out there online is inaccurate in terms of timelines, life expectancy etc.

My own doctor said 10-20 years back a typical patient of the liver ward would come in as clear alcoholics, jaundiced, with a swollen belly, malnourished and the treatment was some medicine, maybe a detox and told to never drink again and most who were discharged would go back to drinking, never follow up on any appointments or take their medicine and therefore would soon end up in the morgue.

I mean it wasn’t too long ago ascites was confused with, not just by the person with it but doctors, as being a mere beer belly and of course medicine has improved massively too as have other techniques like screening and scans, all designed to diagnose quickly and allow the best course of treatment.

Ironically it’s those who end up with liver disease through alcoholism who seem to have the better prognosis once they cut out what’s causing the damage, and yet it’s also those very people who contribute the most towards the skewered data and make it hard to ever really create a definitive basis of accuracy around liver disease because sadly a lot return to drinking or never ever see a hospital to get diagnosed or cared for.

In short I’m confident it’s not the death sentence it was once considered and even more confident that in the next decade we will see real progress in terms of medicine and treatments for all forms of liver disease.

It does start with yourself though, eat well, drink moderately and exercise well and stay fit and healthy and you won’t damage your liver or other organs and should live a long long life. If you do have a damaged liver, do likewise and it should heal or not get any worse so that you can maybe die one day with cirrhosis or advanced liver disease and not from it which more and more people are doing. Then there is the option of a liver transplant of course should those that have no other option need one. It’s a last resort, but it’s saved many a life and I personally find it’s a gift from humanity by humanity, wonderful souls who donate their organs and wonderful souls who are skilled enough and care enough to make it happen via an operating table.

Of course no one can legislate for hereditary or genetic liver disease issues, but then that’s where I believe the most resources and research should go towards finding ways to beat liver disease not caused by alcoholism or dietary issues. My own is self inflicted and while I didn’t deserve it as no-one does, I did start out with a perfectly fine liver and it was only my own boozing that brought about my own ill health.

I now know if I stay off the booze, eat healthy and exercise well, as my doctor told me, my prognosis looks excellent. Who’d have thought it’s that simple.

Remember your health is your wealth!