Liver damage

[CeciledeVolangesdeNouveau]

Hi everyone,

Looking for a handhold and personal/secondhand experiences please.

I’m sober atm but have had serious problems with heavy drinking since about 2018-2019, with some intervals of sobriety. My health wasn’t good before with 15 years of eating disorders.

I’ve recently started having blood results which indicate some degree of fatty liver and liver damage but my doctor said it was likely still to be reversible. I’ve had a FibroScan which indicated similar - damage, but still reversible. I’m now in hospital for some gastro issues and have had a liver ultrasound and the tech said it looked swollen and “not very happy” and that it was POSSIBLY reversible.
I’m in treatment for the alcohol and food issues and can accept the damage and the problems but does anyone have experience of recovering full or nearly full liver health after this sort of damage? I’m happy to put in the work and wait for it to get better but I’m terrified I’ve gone past the point of no return.

If anyone wants to say anything like I brought it on myself, I deserve it please save your breath, I berate myself for it daily already.

Thanks in advance x

Hello, here for a handhold. I got off the “down escalator” of problem drinking before significant physical problems kicked in, but I think that was just a matter of luck.

Hopefully someone with more useful experience will come along soon,but you are doing the right thing in facing up to this. There are countless people who ignore the issue until well past your stage. Wishing you all the best with recovery

I had liver damage when I stopped drinking 20 years ago, I’m not sure what stage it was at but I was very poorly during detox. It completely reversed itself given time and strictly no alcohol.

Please don’t beat yourself up for it, I found stopping horrific and it took a good year before I felt comfortable sober. It’s been 21 years now and I don’t take it for granted.

@CeciledeVolangesdeNouveau - hand hold 🌷

as far as I know, only scarring to the liver is irreversible- inflammation and fatty liver are usually reversible with abstinence/very low intake. I believe scarring is not reversible (as it is literally scar tissue) but that doesn’t mean your liver won’t be able to function. Massive scarring leads to cirrhosis which we all know is irreversible.

I’m interested in the “tech” who did your scan and told you this - was this person qualified to be assessing your liver formally and should they have been telling you? In my experience, a consultant radiologist would need to review your scan and assess the liver.

I once had an echocardiogram done by a cardiac technician who incorrectly diagnosed I had a leaky valve when I didn’t!

Thank you so much everyone who has responded. It is reassuring and as it’s not the only piece of information I have received on it recently (and I really hope my reply doesn’t count as drip feeding - I just didn’t want a huge outing essay as an OP). Also congratulations for everyone who has led an alcohol-free life after struggling! Proud of you all.

Starting with @Pippa246, I’m not sure of the exact qualifications but they weren’t a doctor, but were qualified enough to interpret the scan as they were doing it - they did take screenshots which I assume the consultant hepatologist will look at. I doubt they were underqualified as this is a big posh teaching hospital, but the consultant may take a different view. I find it frustrating because I have more medical/scientific knowledge than they assume so they’re often so busy simplifying things for me to tell me what I want to know. A year ago I had a very woolly explanation of an ultrasound and then at the end said “so, steatosis but not cirrhosis?” and they just sort of looked a bit surprised and said yes. At that stage that was the case, but my GP then confused me about my more recent fibroscan by referring to mild and reversible cirrhosis, then said cirrhosis just meant any type of scarring but normal people only called the fatal ruined liver sort cirrhosis 😡. So I think there are degrees of scarring? I’ve also had a series of blood tests over months which show that there is damage but it’s not too worrying and has improved a bit or at least fluctuated over time.

@Sweetladyjane congratulations that you got through detox and stayed off! 21 years is such an achievement. I agree that I’m really not looking forward to the coming months maybe even less than the initial violent withdrawal period, which is horrifically unpleasant but at least I can focus on vomiting blood or whatever. I know I will have done myself some damage anyway, but it’s half reassuring and half not reassuring to have more precise details. My health already wasn’t very good when I started drinking, so when I’m in hospital with people who have been drinking more heavily and for sometimes decades longer than I have, they’re often shocked that I’ve damaged myself so badly in other ways - I caused myself acute kidney failure two years ago, for example, and have had pancreatitis multiple times (I’m one of the lucky few for whom it’s only moderately painful). So I was already under close medical monitoring and almost have more information about my liver than I want.

Another thing is that I’m honestly not one of those people who deluded themselves they’re invincible or immortal (although quite a lot of the time I am too depressed or self destructive to care that I’m damaging myself) but almost all clinicians are used to impressing the severity of alcohol damage on people and will warn me about it instead of what I need which is a bit of hope that I can salvage at least something! My mother also does not help, I’m on a ward at the moment with someone who hasn’t moved, hadn’t spoken and is bright, bright yellow (think the exact shade of Coleman’s mustard). My mother saw her and said “that’s probably going to happen to you” as if that hadn’t occurred to me! She never misses an opportunity to make comments like that, usually with a glass of wine in her hand.

Thanks for the handhold @Onewildandpreciouslife - glad for you that you got off the nasty down escalator and well done :)

Thanks again all and 💐for those of you who read all of that and will never get that hour of your life back, lol.

I was the yellow person next to you 18 months ago (maybe not quite mustard!). Severe jaundice and my bilirubin was nearly 300. Spent 4 weeks in hospital and it wasn't clear for a while if things would improve but v strong steroids kicked things in to action (Plan B). My consultant told me recently 'there was no Plan C'.

I am now fully recovered (my ELF is still above normal but has come down significantly) - my bilirubin is 12! All other indicators are great and I feel the best I have for decades.

I have obviously had to stop drinking. The improvement in my mental health as a result is immense. It was hard and I'm still on a journey, but all I can say is at the moment there isn't a single part of me that wants my old life back.

So it can be done. My health is great, and the liver is a marvellous thing. Hope this helps.

My husband has serious liver damage - cirrhosis - due to drinking - he was suffering from ascites two years ago and very badly bloated. He was told by his doctor to abstain completely from alcohol and, to his credit, has done for the last two years. The scarring won't go away but at his last tests he was told that his enzymes are now normal and his liver is self-healing to an extent. The bloating etc. has completely gone. You don't say how old you are, but my husband is in his 60s, so his liver didn't have youth on its side. I hope this gives you some encouragement, OP.

Thanks for the further comments - those are actually particularly encouraging because I’ve sort of got it in my head that cirrhosis is basically like terminal cancer. My aunt has had ascites and no longer has it even though she hasn’t stopped drinking entirely!
I’m 31 and have been drinking for five years. I’ve also had eating disorders for fifteen years though so I went in with my body already in quite a shabby state (they can cause fatty livers but generally don’t end up causing cirrhosis).
I was discharged from hospital today, they refused any treatment that’s not to do with alcohol and cancelled my ED assessment on the day on the basis that I’d got sober relatively recently and they “didn’t feel it would be fair to put me through the stress of an assessment” - because that’s so much more stressful than struggling with my eating in early sobriety - and probably bored my consultant to tears going through my FibroScan from November, my blood tests from the hospital stay and the ultrasound I had three days ago. The ultrasound was a huge shock because every other test I’ve had has shown mild fibrosis at maximum, and the ultrasound person really scared me. I finally settled with him on a range from moderate fibrosis to mild cirrhosis/scarring which is a HUGE change in about eight weeks when I am sober right now and have been drinking pretty much nothing compared to my worst. It’s really reassuring to hear your stories because I don’t really scare straight, I’m much more likely to change if I have hope things will get better.
Thanks again! It really helps. Unfortunately I think both the yellow people I saw aren’t going to make it - the really yellow one didn’t move or speak the whole time I was there and had stopped eating, her family had come over from Russia to stay nearby :S and the other one I was told was receiving palliative care. A year ago when I was barely out of hospital though I met someone who had survived multiple organ failure and she had massive ascites but was expected to be able to go back to a semi-normal life.

Sorry to post again to bump a thread that already has answers (thank you again, kind people). I’m doing some anxiety googling and finding awful things about life expectancy with even early stage cirrhosis and it’s terrifying. I’m only 31 and I know it’s my fault and I’m staying sober but some of the statistics say I might not even make forty if I’ve got cirrhosis (one paper said 2-12 year life expectancy. I had about two drinks a year until five years ago. The consultant was basically reassuring and said as long as I stopped now, I could probably still live a normal life expectancy even if it is mild cirrhosis. He must see a lot of livers surely? I have a FibroScan result and blood tests over months which show it should still be reversible. Just absolutely panicking. I know it’s my fault and I deserve it but I’ve cut my life in half apparently and I’ve got relatives who have drunk heavily all their lives healthier than me in their mid-eighties.

It sounds as though you're doing everything you can to take the best steps to a healthier life.
What exactly is it your so worried about? Quote liver will repair itself why do you think you've got irreversible liver damage exactly?

I have been sober in AA just coming up to 21 years,I have known people with bad liver damage stay sober and their livers repair themselves over time.

Stay sober,do not pick up an alcoholic drink for any reason whatsoever.Give the AA helpline a call and get support from other alcoholics in recovery.I found it impossible to do it on my own,I could stop drinking,but not stay stopped.

Wishing you well,you can do it.I did!

I did the same Googling when my husband was diagnosed. He hadn't even been given the hope that his liver would heal, yet it has been doing - he will always have the scarring but the function is normal now. The damage means that he will never be able to drink again but if he looks after his liver there is no reason for it to get any worse and if it's now functioning as it should, no reason why he should not lead a normal life.

We none of us know what is round the corner - you could be the healthiest person in the world and still develop a serious illness; we could probably all name people who have developed non-lifestyle-related cancer, for example. All anyone can do is live the healthiest life they can and hope for the best.

Congrats on stopping drinking. Keep in mind that part of alcohol withdrawal/recovery includes a spike in anxiety and depression. Your mood is going to be all over the place. The worrying and fretting you are doing is all part of recovery. I promise it's temporary. Good luck!

OP even with early cirrhosis things can go very well for you if you give up drinking entirely, and forever. It is a fork in the road. The outcomes are much, much better for those who remain abstinent than those who carry on drinking. From my observation diet is also important in recovery from liver disease so it is great you’re addressing the ED side of things. Good luck and take heart.

Sorry I'm replying at such a late stage.

Livers can repair themselves or even regrow half of themselves (that's why liver transplants work) except in the case of cirrhosis - I'm not sure why but I think it's because the scar tissue is just sort of there, and not sending out inflammatory markers or going through apoptosis or being unable to cope and needing to get bigger, but it's also not dealing with all the toxins etc the liver needs to process. So it's sort of a point of no return. My panic was brought on by being told I was still at the early or midway reversible stage of liver damage and then suddenly, a matter of weeks later, being told I was suddenly in the irreversible phase.

I guess I'll find out in the coming months and years. Apparently my liver function improved even during my week in hospital but I feel very wary.

Thanks again for your kind replies and congratulations to all of you and your relatives for getting through this.

I have cirrhosis. I don't know how bad it is, as in my area they don't score it as they do in some. What I do know is that it is 'compensated', which basically means that the liver is fulfilling its functions. 'Decompensated' is the term for when that stops, and you get ascites and other complications. 'The yellow people' were definitely decompensated.

I haven't had a drink for about 7 years now, and I feel fine. My bloods are normal/borderline, and things like bilirubin are well within range. I feel so much better than when I was drinking, and although it was a horrible shock, being told I have cirrhosis probably saved my life.

On the positive side, I get regular ultrasounds to check for liver cancer (and they also look at the pancreas and other organs), and my bloods are monitored. I also get an endoscopy (not pleasant, but ok if you go for sedation) every two years to check for varices, which are enlarged veins that can bleed. This all means that my general health is probably monitored more than that of a healthy person, which is good for my anxiety levels.

The bad side is that I am ill, however good I feel. I could tip into a decompensated state at any time (eg if I got an unrelated infection) and as I get older that becomes more likely. Hospital visits are a pain, even though I am grateful for them. Travel insurance is very expensive and hard to get, too.

So don't panic. If (and it's not a given) you do have cirrhosis it is not a death sentence. You can keep it at bay if you don't drink, and research is advancing all the time. I am considering asking for a fibroscan, even if I have to pay for it, so that I know how bad things are, but am a bit worried that if I find out things are worse than I thought it will overshadow my life, and if they say that it is actually fibrosis and not cirrhosis there might be a temptation to have an occasional drink. I was diagnosed based on bloods (which were dreadful at the time) and an ultrasound. Ultrasounds show scarring, but not the severity of the damage, so as you have had a fibroscan (which does show the severity), I would rely on that over the US.

Hi @ShyMaryEllen and thanks for your reply. Seven years of sobriety is amazing and I'm glad you're having your health monitored and it's good at the moment. I should be having regular endoscopies because I have a lot of issues with my oesophagus and stomach, but they haven't found varices yet despite about fifteen years of severe bulimia before I touched a drink...

I saw my discharge letter again as I had bloods booked yesterday, and the precise phrasing was "cirrhotic changes likely", so of course now I'm fretting over whether I misremembered the FibroScan! The only thing I can do about it is control what goes into my body, though.

Wishing you the very best of luck and thanks again! From what my consultant and the scan technician told me, the blood tests and in particular how they trend over time are the most important and reliable indicator of how you are day-to-day, though. I guess it also must be like having only one kidney - if your remaining kidney gets hit with infection or injury you're in a bad position but otherwise you probably don't notice!

I am in a similar boat OP, currently waiting for a diagnosis as to how bad a condition my liver is in & absolutely terrified. This thread has helped so much to put my mind at rest that I can maybe (hopefully) turn things around. The liver is an amazing organ that has the ability to heal. I understand that the google life expectancy is based on the person making no effort to change what they are doing & help the liver heal.

I understand that the google life expectancy is based on the person making no effort to change what they are doing & help the liver heal.
Yes, and when you think about it, another huge factor is at what point in the process someone is diagnosed. If one person is diagnosed at the point at which cirrhosis develops and another at the point of liver failure their life outcomes are going to be very different. At best, the life expectancy predictions are huge generalisations.

My understanding is that it is most unlikely that a cirrhotic liver will heal (although a fatty one will) but that if the cause of the damage is removed then further damage can be halted or slowed right down. If the cause is alcohol, then it is in the hands of the patient to stop their disease from getting worse, which is better than if the cause is something beyond their control.

When I was diagnosed the consultant (who has, unfortunately, left the NHS now) said that with total abstinence the chances were high that I would die with cirrhosis rather than from it. Good luck with your appointment - do come back and tell us how you got on.

A relative of mine died from cirrhosis of the liver, from obesity rather than drinking, he was nearly 70 though and it had been going on a long time. As I'm sure you know it's a very horrible decline. You deserve so much better than that OP, and it sounds like you have the self awareness and strength to tackle it.

I don't think you're to blame or you deserve it at all - but what's at the root of it all? Have you had any help to deal with that? The things you're doing to yourself are not things that happy well functioning people do. You deserve better than this. I would also try to remember that nobody knows how long they have left, they could be hit by a bus tomorrow - but there are things we can do to try and make it as long as possible.

My STBXH is 72 and has had chirrosis for 40 years.

From Hep C.
He is fighting fit.

At 31? 5 years abuse only? IMO you will be fine.
I was told I had chronic pancreatitis. I did not! (STBXH I think mislead doctors, but even so)

Hi OP, yellow surviving person here! Even my eyeballs were bright yellow. A scan revealed I may need a partial liver transplant as my liver had shrunk from all the scarring. Somehow this wasn't necessary and I'm Ok - the liver does get a little irritated from time to time if I eat too much fatty food.

Glad you're getting sober OP alcohol was the most miserable of my addictions (even heroin) and did the most physical damage. Life really is better on the other side.

This post has really helped me.
I just had an ultrasound today and have been told I have an extensive fatty liver and will need further tests. I'll hopefully see my gp next week. I have been waiting since before Xmas for the ultrasound, but in the end I went private. Glad I did.

@DaftFlerken fingers crossed that you'll get some reassurance. You're right that you can put livers through a lot and they heal pretty amazingly - the existence of liver transplants which allow the donor to survive and just regenerate their own liver is pretty incredible. Re the googling, because it had been explained to me that some degree of scarring was irreversible but your liver could still function for your natural lifespan at about 80-90% of its full capacity (and my natural lifespan if I take off a decade for self-destructive behaviour and base it on my grandparents is at least another fifty years), so it was a shock to read "life expectancy for compensated cirrhosis" i.e. when your liver is still working mostly normally "is 2-12 years" as if there was no way to stop or mitigate this.

@ShyMaryEllen re the function/scarring - I keep trying to calm myself down by looking at my skin, which is extensively and quite severely scarred, and telling myself it probably won't look very good when I'm 60 or 70 and won't work quite as well as it should, but it will still work. Not sure if that is a good analogy but seems to shut my brain up a bit.

@takemeawayagain unfortunately I do know the root of it, or rather roots - the alcohol was the final coping mechanism in a string of self-destructive ones, including decades of eating disorders, even longer history of self-harm, I think six current and valid MH issues (those aren't coping mechanisms but causes of them) and most of this is due to abuse history, trauma etc. It's particularly frustrating because now and probably for the next few years I am being completely ignored for other treatment which might actually help, while everyone focuses on the fact that I've got sober and that's the only thing that matters. This is to the extent that the Acute Eating Disorders Service gave me a priority assessment because my body was so badly impacted by my eating disorder. I was then admitted as an emergency inpatient with consequences of malnutrition and while I was in hospital, my assessment was cancelled the day before because I have alcohol on my record. I've been discharged and told to come back when I've been sober for a year solidly. Given how ill I am already and my living circumstances it's quite unlikely I'll still be around without the help, but that's how it works.

@Hagbard and @AdriftAbroad1 great survival stories there! I'm glad :)

Thanks again all.

Remember that a lot of people never get diagnosed with cirrhosis. They die, whether of the liver disease or of something entirely different, and it is found at a post mortem. If no post-mortem is needed the cirrhosis will never be found. The people on whom the 'years from diagnosis to death' figures are based are those who have sought treatment, maybe because their symptoms are relatively serious, so they are not necessarily representative of the cirrhosis population as a whole, IYSWIM. It is therefore to be expected that the figures will be on the gloomy side.

In any case, you are where you are, and the absolutely best thing you can do is not to drink again. Whatever happens to your liver, not drinking will make you happier, healthier and probably richer, so it's worth it for that alone. What I always say to people who are worried about liver damage is that they will give up drinking one day. If they are lucky, they will do so when it is still a choice, and go on to live the rest of their lives without the shadow of alcohol over them. If they don't make that choice they will still give it up, but the circumstances will be very different.

Good luck, and don't berate yourself, it's pointless. I do it all the time, and it changes absolutely nothing. Try to big yourself up a bit - you are making very positive changes that will improve your life (and possibly the lives of those around you, too) immeasurably. x

I've read this thread as I saw a liver consultant yesterday and have a Fibroscan next week. Well done on stopping the drinking and I wish you all the best. I'm sorry to read that all else is now being ignored by the medics in favour of the liver/alcohol issues. In my opinion, excessive alcohol intake is only ever a symptom of something else. Personally I have a trauma history and have drunk heavily for nearly 40 years. So I am not expecting the scan to give my liver a clean bill of health.

Standing with you.