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

Good luck Cranarc, from what the others have said it is possible to sustain a significant damage and still have quality of life for a while or even reverse some of the damage. Hugs to you.

Hi again everyone,

I'm back and absolutely shitting myself.

Ultrasound coming up in May and I have symptoms which could either be related to my liver or eating disorder (oedema in my feet, fatigue etc). No jaundice and on palpation you can't feel my liver, also no ascites, no pain in my liver. However my blood tests are consistently pretty dodgy, I don't know the numbers but doctors consistently mention them.

But I have significant (mental) trauma and am living in the environment that caused the trauma so I'm ashamed to say I've had multiple relapses - I keep trying to stop but I have had significant amounts since my last scan. I'm going to need a lot of help which is simply not available and I'm really scared the next scan will indicate a death sentence. I live with heavy drinkers who are also abusive so there's constant alcohol lying around and also constant really strong triggers.

I don't suppose there's anyone else with positive stories? I've read and heard plenty about people dying my age or younger.

I don't know what my relatives' livers look like but my aunt has lived to age sixty as an incredibly heavy and consistent drinker, although she hasn't had the same degree of eating disorders. My grandad has also lived into his mid-eighties so far on a very high intake of alcohol - never seen him drunk but think starting at ten in the morning for decades. I have no idea how their livers have survived.

I also had a consultant say on my last hospital stay that if I keep drinking like this I'll die. I really want to stop and for that I'm going to need to get out of this house and get some help and it all feels impossible.

So grateful to all those who have replied already but just any extra stories, please. I know I did it to myself but I'm actually crying with fear. I know it's my fault and I understand about the difference between compensated and decompensated cirrhosis but if I don't get out of here I am not going to be able to stop, I know how weak that is, and I don't know if I'm already on the rollercoaster to decompensated cirrhosis and death.

Is there any way at all you can get out of the environment you're living in? It is clearly taking a heavy toll on your mental health.

You're not going to go from fatty liver to a death sentence in a couple of months.

If (and it's a big if) you have cirrhosis you will have to stop drinking. No messing about with moderation, as any alcohol will accelerate it, so from what you are saying you will need help. Maybe a diagnosis will help you to get it, though.

If you stop drinking you can live for a long time with cirrhosis, and it is apparently possible to reverse it. I said upthread that I was told I had it, but I found out last week that it is actually fibrosis (measured on a fibroscan rather than an ultrasound). That means that either the original diagnosis was incorrect or I have turned things round by not drinking for 7 years or so. I don't know which, but I thought I was living with a death sentence, and now I'm not. Don't panic, but either way, you have to stop drinking.

What do you know for sure? I can't tell from your posts whether you have fatty liver, cirrhosis or health anxiety. Bloods need to be read with other results, as they can be normal in people with serious disease, and deranged in people who are not yet irreversibly damaged. A fibroscan is more accurate than an ultrasound. Not all consultants offer them routinely (not sure why - probably expense) but it's worth asking for one if you are in hospital as you will get a numerical score which indicates where you are on a scale of well to cirrhotic, and you can then monitor your progress. An US will show damage, but not the extent of it.

Try not to worry (not easy, I know) until you know something for definite, and if you do have anything definite to work with, post it and I'll try to make sense of it. I'm not a medic of any description, but I do have experience of ALD and have googled the bejaysus out of it for years.

I had mild to moderate fibrosis on a Fibroscan I had I think two to three years ago? Maybe 2.5? And I know ultrasounds can overdiagnose it. Last time I got severe fibrosis to mild cirrhosis, and that was a few months ago (ultrasound, not Fibroscan). I'm 90% sure it's just an ultrasound this time but I'll see in a few weeks. I definitely don't have health anxiety lol, rather the opposite. I'd actually probably be relatively reassured with just mild cirrhosis and that would help me stop, because I know you can live a normal life with that.

OP are you getting any help at all from substance misuse services? There are medications that can help with cravings and also make drinking a seriously unpleasant experience- has anyone discussed this, or psychological support with you?
it sounds like getting out of your current environment is the priority in many ways- again what help are you receiving to look at housing options?
can you say roughly whereabouts in the country you are? People may has info and ideas about services you may be able to access.

2.5 is in the normal range I’m sure. Cirrhosis starts at (from memory) about 19 and the maximum score is 75, so it’s virtually impossible that you’d have gone from normal to dying so quickly.

I appreciate that getting help is difficult, but could you ask your GP for a tranquiliser to lessen the effects of withdrawal? They might be able to help in other ways too.

I’m not being harsh, but there’s no point in pretending that carrying on drinking will be ok, as it won’t. I know it’s hard, but you need to stop.

Are you living with drinkers? That makes things even harder. Can you stay with anyone between now and the hospital appointment? Sorry if that’s an obvious but impossible suggestion, but it would probably help if you could.

Obviously I can’t be sure, but I really doubt that you’ve done irreversible damage in a couple of months. Good luck. x

Just on the ‘yellow people’ there was a woman in Take a Break Magazine a few years back who was completely yellow, even her eyes, and she was given a few weeks to live, critical in hospital, swollen to huge proportions and she made a recovery. I thought there was no way, it was impossible, but she did. She quit and she recovered.

The body is absolutely amazing what it can do.

One other thing, and apologies If my post rubs you up the wrong way with another ‘have you tried….’ suggestions but Alan Carr has a really good book about cutting down Alcohol (it’s about quitting completely) you could get it free from the library. It’s worth a shot.

All the very best to you x

Woke up today with a really horribly swollen left hand... apparently this can also be a sign of liver disease :(

I’ve never come across that as a symptom - I think it’s far more likely that you have slept on your left arm, really.

I know you laughed when I asked about health anxiety, but if you had a fibroscan score of 2.5 a couple of months ago you are highly unlikely to have irreversible damage now. Yes, you may well have increased that score and could be in the ‘mild fibrosis’ area now, but it won’t have increased to decompensated cirrhosis.

Were you drinking last night?

I wasn't drinking last night, no.

Also, my fibroscan score wasn't 2.5, someone else cited that number - I was just told I had steatosis, but the fibroscan was over two years ago. The ultrasound about a year ago showed some fibrosis and then all of a sudden five months ago we were apparently in mild cirrhosis territory. It's possibly progressing more quickly with me because I tend to drink without eating and I used to drink heavily (to unconsciousness for days at a time, I no longer drink like that and have long sober periods with minor relapses not involving spirits) but I agree that's a super fast progression. I've reassured myself slightly with some research showing that ultrasounds tend to overestimate the degree of damage so hopefully in May it'll be a Fibroscan not just an ultrasound, but during my last admission last week I was told I would have another ultrasound but released after a couple of IVs and no further investigation (admitted for really nasty GI reasons I won't go into).

Re the health anxiety, I've seen the doctor as my hand continued swelling for two days and got worse despite elevation and keeping it cool. It turns out that (unsurprisingly, as I did tell them it was incredibly painful) it's damage from a potassium drip that was administered too quickly into my hand. The GP said it shouldn't have been in my hand at all, let alone in those quantities, for potassium. So it wasn't health anxiety but thank goodness it wasn't liver, heart or kidneys. By the way, I do have documented and verified problems with all of those AND my pancreas because heavy drinking on top of 15 years of a severe eating disorder, self-harm, overwork, sleep deprivation and stress (plus multiple suicide attempts) really isn't good for you. I didn't miss a day of school or work and barely saw a doctor until about three years ago when my body just gave up the ghost. I know it sounds like health anxiety when you start freaking out about one swollen hand, but when I spoke to the GP he said he was worried about infection. Had it been infected I wouldn't have been worried at all, I commonly self-harm by cutting or burning myself and deliberately infecting it, and know how to deal with them so I wouldn't have bothered the doctor.