Need some positivity

[Lifefan]

I have been diagnosed with liver cirrhosis I'm April/ may I have been alcohol free for 3 months but I am having a very anxious day today about my life expectancy and was hoping to hear of some positive news or advice please

[Grassroots112]

Hi and first of all sorry for your diagnosis, but congrats on the 3 months abstinence, that’s amazing as I know how hard that is, I’m almost a year and a half sober myself. Well done and you don’t need me to tell you to keep it up.

I’m no doctor of course and don’t know your story, but it’s not the death sentence as it once was considered. Many people with cirrhosis live long and healthy lives and die with cirrhosis not from it.

If your cirrhosis is caused by alcohol the good news is research and studies suggest of all liver diseases, while alcohol can be the more damaging, by abstaining full stop for good, the liver can make a remarkable recovery, remodel itself and more than compensate.

I recently learned from someone I know who has a relative who was diagnosed with cirrhosis over 20 years ago through drinking, I haven’t met the person in question, but I’m told he’s alive and well and you wouldn’t even know he has it if you were to look at him. He quit drinking and went in a Mediterranean diet and hasn’t looked back since.

Do you know if you’re compensated or decompensated? If you’re decompensated the liver can return to a compensated state and vice versa, the key is to keep your liver compensated, do that and it will perform the vast majority of its functions well enough where there is no reason why you can’t live a full term normal life.

Again those who have cirrhosis through alcohol, by removing the alcohol there is nothing that can attack the liver further so it can have that needed time to heal and once healed enough again it can function perfectly well enough. Of course a healthy diet is essential too.

I haven’t been diagnosed myself one way or another as I’m told that can only be achieved if they removed my liver and put it under a microscope. March 23 though I was hopsitalised with jaundice and ascites where I had to be drained, looked like a corpse and was effectively dying and would be dead now had I not went in when I did and I’ve been sober since and can never touch a drop again if I’m to remain compensated and healthy which is what my doctors are now saying I am.

Do you know your MELD and have you had a fibroscan yet? Your INR and platelets are also a good indicator as to how well or not the liver is doing especially with cirrhosis.

You are certainly doing the right thing by stopping drinking and if you follow all advice from your doctors and stick to any medication they give you and get checked over regularly (I’ve just had my 6 monthly US today myself which I’ll likely have to have for the rest of my life for example), then there is no reason why you can’t live a long life. Doctors certainly can’t predict your life span and don’t read Google looking for such answers whatever you do.

Hopefully a few more people on here will come into this post who have more experience and better advice to give who have been diagnosed themselves and who can maybe answer any questions you have. I wish you nothing but the best with your abstinence, take it easy and take care.

[Lifefan in reply to Grassroots112]

Thank you so much for your reply it was exactly the response I was hoping for.And congratulations on your sobriety!

I am positive for the future but have very anxious days and what helps me the most is too talk with others who have understanding and experience.

I can confidently say I will never drink alcohol again,my life and family are way too precious to lose and being sober actual feels good, just have to keep working hard and deal with things properly

[Grassroots112 in reply to Lifefan]

Thank you and definitely regarding the booze and it’s natural to feel anxious, worried and scared even. For the first 6 months after I left hospital it’s all I thought about day and night my liver and my condition. I was becoming anxious over the slightest of things. I’d check the colour of my wee and stools every day, seeing changes in colour that wasn’t really there as my mind started playing tricks one me.

If I saw some red marks somewhere on my body I’d think it was cirrhosis or my liver was getting worse and food… I would obsess over the labels, the ingredients and whether this or that type of food was liver firmed.y.

I think looking back I was suffering some form of depression as I lived like there was a dark cloud hanging over me and my mortality was constantly a thing back then. In many ways I’m now grateful I become obsessive about my liver and my health even though it lead to anxiety because it kept my mind off the booze and wanting a drink.

I’ve learned today not to dwell on things if I can help it and try to be positive about my flute. I now wake up every day like a kid almost excited about the day ahead and I now even enjoy the mundane things, but above all else I’ve learned to be content just sitting around doing nothing if there is nothing happening, happy to sit in my own company and not think hey this is boring, I’m bored because that would have seen me open the whiskey bottle a year and a half back.

I’m sure your own anxiety will ease and thoughts of your own mortality will lessen also in time and having a family and loved ones will only help in that.

When I left hospital I went to an alcohol rehab place for an month or so and although it wasn’t for me eventually I did learn a lot in the meetings I had with a key worker who was a great guy.

I was told the first year is the hardest when it comes to going sober and the body and mind will go through all kinds of emotions and struggles as we go through withdrawal, abstinence and the realisation that we can’t ever drink again.

Depression can often follow and of course booze itself is like hitting the start button to fire up anxiety as alcohol is a common cause of anxiety and depression so there is all of that playing havoc on the mind to contend with as well.

I was also told when it comes to advanced liver disease and cirrhosis that the first year is also the hardest, the longest feeling and that progress can be slow or feel slow.

Remember how much you’re taking in here and dealing with just on the booze front never mind that you’re also dealing with your diagnosis, mentally that’s an awful lot to handle and juggle so its only natural you will get days where you’re super anxious or down, but hey you are dealing with it and you deserve credit for quitting drinking in the first place staying off it for so long thus far.

You should feel proud of yourself because it’s one of the hardest things to do in life and made all the more harder when we can’t escape alcohol due to how immersed we as a society are in the whole drinking culture.

Again it’s not the death sentence it was once considered, people a decade or so ago felt sick from alcoholism, went to hospital and were told they had cirrhosis and sent home without anything, often back to a life of drinking and no real medical follow up, hence why a lot of data is inaccurate today in terms of life span estimates.

Today it’s totally different, we understand liver disease better, cirrhosis more and hard cold data research and actual real life experiences have shown that with ARLD a life of abstinence brings about a very good prognosis indeed. And if you’re hopsitalised with ARLD the care package itself is designed to make sure your chances of survival are far greater in the first year post discharge which used to be quite low. Now we get screened for cancer even every 6 months to a year.

My own hep doctor told me he has patients who he cares for who were diagnosed 20 + years ago and are still alive obviously, some of whom make visits to the hospital to speak to those newly in with cirrhosis.

[Maddog2024 in reply to Grassroots112]

The anxiety is so hard to deal with. You have a positive outlook and I am striving for that. But, I still get those pains in my abdomen sometimes and my mind starts to sink again.

[Grassroots112 in reply to Maddog2024]

Anxiety is tough, believe you me I suffer from it, but my mind has always worked on a pro vs cons, negatives vs positives type analytical way so I always end up convincing myself despite any anxieties, that for whatever reason the outcome will be OK somehow. Regarding your stomach pains it could be a while host of things, I know anxiety pangs can cause stomach aches and can disturb IBS which I suffered with for years, but didn’t even know I had it until I had an MRI. Do you have IBS?

Today it’s all resolved thankfully and touch wood, but I’ve never had any stomach issues like acid reflux, heart burn, pains and cramps since I quit drinking and started eating healthy. I used to spend a fortune on Gaviscon and the acid reflux would make me feel sick, I knew it was drink related, but also diet related too.

When I used to get pains I would stand up or sit up straight and also loosen my belt if I wore one or wore slacker looser pants, breathing techniques help top. An upset stomach is a sign the gut isn’t happy for some reason, more often than not it’s diet related or can be eased with medicine.

Hopefully your pains will ease and when you next see a doctor they can get to the bottom of it, good luck and take care.

[Ruthless247 in reply to Lifefan]

Hi

I was told in December last year I very likely had cirrhosis, portal vein hypertension and varices. Quit drinking immediately. Gastroenterologist told me in January that if its not cirrhosis it's definitely advanced fibrosis. Last month I had a biopsy and my liver was so normal they don't want to see me again

[Grassroots112 in reply to Ruthless247]

That’s amazing, you must be so happy and although I don’t know you I’m so happy for you, it’s experiences like your own that provide real hope to us all. It really does show what can be achieved when you remove whatever it is that’s attacking your liver once and for all and for good, alcohol really is a nasty poison!

I’m actually in two minds as to whether to get a biopsy or not, I’d love to actually know, but if it come back yes you definitely have cirrhosis I don’t think I could deal with that whole mental gymnastics I went through for a few months after I come out of hospital again.

Having said that, my hep doctor said even a biopsy isn’t 100% accurate and while he’s acknowledged some doctors and hospitals are different when it comes to diagnosis, he personally prefers to go off a totality of results from bloods, LFTs, fibroscan, US and so on and that because I had alcohol hepatitis with jaundice and ascites and even if it now turns out it’s not cirrhosis, because of that I’m at an increased risk of liver cancer so it’s prudent to keep having regular check ups and scans and I’m happy with that despite how nerve wracking it all is.

Thanks for sharing your story, take care and good luck.

[Lifefan in reply to Ruthless247]

That's amazing news thank you for sharing

[Ruthless247]

You're most welcome. The liver is an amazing thing and no one can predict what it might be able to do in terms of recovery, I've heard some amazing stories from other people. The very best of luck and health to you

[NorbertGrubbins]

well done! a day sober is a major triumph so 90 of them … well that is pretty excellent … feel good about yourself … and keep going, one way or another

[Lifefan in reply to NorbertGrubbins]

Thank you

[NorbertGrubbins in reply to Lifefan]

no worries - I know it can be grim but sometimes we all need a hug and a push forward - a bit like welsh rugby!

[DaveQ67]

Hi,

As pointed out, stay away from google! I would put that close to abstinence. If you’re toiling in the first case that will shove you over the edge!

Well done on 3 months sober, That is something to be proud of and highlight that you have the ability to take control of your health. It is difficult to achieve, especially when the one thing used to cope with hard times is the thing you cannot touch and also more than likely put you in this position.

I struggled with that… once my mental strength returned I was angry with myself, that I put myself in this position. However there’s a good chance that my diagnosis saved my life.

I’ve been diagnosed over 13 months, sober the same amount of time. I don’t count days and look back now in regards to alcohol. I only know the dates I was in hospital as I have repeated them so many times to the DVLA! As far as alcohol goes I only use the past to remember where I was when going through difficult periods.

I posted quite a lengthy post the other day, I won’t rehash it but it was aimed at anyone who had recently been diagnosed. It was about where I was at when being diagnosed and where I am now in 1 years time. My initial prognosis was not good.

You’ve made the hardest step, it took me almost 4-5 months to get used to not having the presence of alcohol in my life. There were times I started justifying it in my head. But That’s the little demon tapping me on the shoulder and complacency is dangerous. Especially during the difficult days.

Instead I made the decision to get fit and healthy again. It helped my mental state and gave me something positive to focus on. Taking little steps all adds up to helping you feel more like yourself, it certainly helps build your mental strength which I’ve found you need as much as anything else.

My life expectancy has changed dramatically in 1 year and the truth is they don’t know for certain. I was given months.!

Last week 15+ years ( the maximum) I know one person in particular who is 36 years diagnosed and Still here happy and healthy. Now 79.

You can take control of this, give yourself the best prognosis. Who knows you can also be one of the major success stories that seem to appear on here more and more. Diet/ exercise/ abstinence. Then patience. I’ve taken the view, it too me years to wreck my body, I’m not going to heel it the best I can over night.

Keep up the good work with remaining abstinent. You’re doing great!

[Lifefan]

Thank you everyone for all of your replies they are very helpful and aspiring.The support I have had from medical professionals, groups and people like yourself have been incredible.

Like what was said about dealing with depression and anxiety, arthritis by self medication is what got me into this predicament so dealing with those issues without masking it without alcohol is extremely hard but rewarding but I am in agony with pain and cannot not walk more than 20 metres and when walking to the toilet but I am hoping it will ease with recovery and rebuilding myself.

I cannot believe I abused my body so much but I think it's because we get a bit ignorant and cocky taking our bodies for granted.

[Lifefan]

Congratulations to everyone on sobriety it really does feel good even on the tough days.

[Nerico in reply to Lifefan]

I'll drink to that, with a nice big mug of coffee.