So Close To Drying Out!: After six... - British Liver Trust

British Liver Trust

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So Close To Drying Out!

25 Replies

After six months of battling the bottle after falling off the wagon through stress (I really don't cope very well with stress due to anxiety issues) I'm almost dry - or at least getting there. Being wpileptic, I was advised that it's potentially fatal for me to just stop - which is what I initially wanted to do - but I'm now down to a bottle or less an evening, and have rediscovered my love for elderflower cordial and Chinese loose leaf tea.

I'm not going to allow myself to be taken over by cirrhosis again, especially not now that life is on the upturn for both my husband and myself. I'm going to keep fighting, and have decided to take future blood test results telling me my liver is healthy with a pinch of salt: it almost killed me once and it easily could kill me in the future if blood results make me lax about taking care of my health.

To those of you still struggling, keep fighting!

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25 Replies
susieanna profile image
susieanna

Hi Tarantula girl, i was reading back at some of your posts which i found interesting but unusual re whether you have or have not, got, cirrhosis; it seemed clear that you do have it however; but then i didnt understamd how it could all be back to complete normal again? I don't actuallly think this is possible. However, i was also interested to read from someone that a decompensated liver can actually return to being compensated; anyone out there...is this really true? Re alcohol damaged livers. When you say a bottle or less an evening; do you mean wine? Re a previous comment you have made IDS is enough to drive anyone to drink....but on a serious note....what is your current status according to your specialist. Your posts have had me confused. Have you ever thought about a Rehab? 6 months/ even 9 months away; perhaps this would be good for you? If you are drinking large amounts daily it is not advisable for any alcoholic to just stop...you would usually need to be detoxed in a Hospital or a Unit. But at least you are drinking some healthy drinks. However, if it really is cirrhosis, then stopping is essential really. Has a transplant option ever been discussed with you? I ask this as i do not know how damaged your liver is/ was/ though it seems as though it was very damaged/ I also ask as i know someone whom had one relapse after 2 yrs sober and was told they would never be offered a transplant, should the need arise (something i am looking into as these are NHS guidlines ; not set rules).

in reply tosusieanna

When it comes to whether I had cirrhosis or not, I'm as confused as anyone. To be told I had cirrhosis and that I was dying and then to be told two years later that everything is normal... your guess is as good as mine. As far as I know the liver can recompensate, but it can't fully recover - and yet mine apparently has, so I'm thinking it wasn't cirrhosis at all.

I have never been on the transplant list; apparently I recovered to such a degree that it was never deemed necessary. As I've said in previous posts, I was informed - in hospital - that my consultant always gives the worst case scenario, and as far as I'm aware "cirrhosis" isn't on my medical records, whereas "liver damage" is. I really need to ask, once I get to know and trust my new GP (mine retired a few months ago, unfortunately).

I honestly don't care that my liver is now apparently showing as normal and healthy though: I want to quit drinking again (and you're right: IDS would drive anyone to drink if his policies were affecting them as they affected me). I've reignited my love affair with my favourite non-alcoholic beverages and already feel better for it. I've been following advice concerning stopping again from my liver consultant, and my husband is very supportive too.

I'm the first to admit to a drink problem. However, I had the strength to stop before and - now that my husband and I are no longer at the mercy of this government (he found a job and so I was able to come off ESA) I am in an emotional position to do it again. And you are not the only one who would like to know just how much a liver with cirrhosis can recover - because I don't believe that it can recover 100% as mine apparently has. When I see my consultant again he is in for serious questioning because I've been confused for the last 12 months concerning his diagnosis and the way my recovery just doesn *not* seem to correlate with actual cirrhosis!

earthpixie profile image
earthpixie in reply to

hi, in 2012 my liver was decompensated, cirrhosis was diagnosed by a liver biopsy, ultrasounds and ct scan. I have remained teetotal since and blood results for a long while now come back as normal, except for low platelets and slightly elevated bilirubin. So my liver has gone from decompensated to compensated, but I still have cirrhosis and if I drank again I assume before long my liver would become decompensated again. As far as I know once your liver is cirrhotic, it stays that way despite improved blood results, though I could be wrong.... :S

in reply toearthpixie

I didn't even have a biopsy - just an ultrasound scan. And that's where the confusion is - how can they decide it's cirrhosis without a biopsy? I saw the damage on the ultrasound with my own eyes and have also seen that it is now gone. This is a question I'll be asking when I see my consultant again, as blood tests and ultrasounds just aren't correlating with cirrhosis, in spite of my having had many of the physical symptoms!

in reply to

I think you should be asking for a fibre scan,have had many ultrasound s and as far as I know ultrasounds' won't give an accurate description of how scarred your liver is.mine is 75 ,that is a score of how firm the scarring is,it sends a wave against your liver,a normal liver will bounce back ,but with mine and a cirrhosis liver the wave is less,hope you get a more precise answer,it sounds as though he might be giving you a warning,but should be giving you the correct results,you don't need a biopsy to determine yes or no,you usually get a. Child Pugh score A -C,c been the more severe,all the best

in reply to

That sounds like a plan. I have blood tests every six months too, and know that I shouldn't expect them to be normal if I have cirrhosis - and yet suddenly they are. Instead of feeling relief it's left me with questions that need addressing: I'm aware that the liver can heal from cirrhosis up to a point, but completely? I'm fairly certain that I don't have the same regenerative powers as Wolverine, even though my consultant has said that I defy logic and must therefore be immortal... (I'm not even joking).

Paulineunderstand profile image
Paulineunderstand in reply to

My understanding is that my boyfriends tests are near normal, despite him having cirrhosis because if, and this is a figure plucked from nowhere, you have half a functioning liver you should double those scores because only half the liver is producing them. A fibroscan is nice and easy.

dckimberly profile image
dckimberly

I don't know what to say. If you have epilepsy..you should NOT be trying to detox on your own. How has ANY doctor missed this? Drying out on your own can kill any alcoholic..but especially one who already gets seizures.

I am utterly confused that ANY doctor who is aware of your drinking and knows how bad you want to quit has not had you hospitalized.

Sorry..but that makes NO sense.

And I see others talking about being decompensated and then going back to compensated. I was told that once your liver was decompensated (which shows from having one of the four main diseases caused by cirrhosis, varacies, ascites, etc) that was it.

I know prior to transplant my liver functions were actually normal. (maybe that is what you mean?) but I had massive ascites so they knew the tests weren't telling the whole story. Once they got in there for transplant, THEN they saw all the cirrhotic tissue in my liver.

It sounds like you need to go into detox first. If your serious. And they will not only help you stop drinking, but they will also give you tools to keep you stopped, and introduce you to a 12 step program which has proven to be the most successful way to get and stay sober.

Of course you drink when your anxious. All of us do. It's not how much we drink but why we drink.

I can tell you this..every day your 'drinking a bottle' at night you ARE damaging your liver. I guess weather it can heal on it's own depends on what your consultants say.

good luck

in reply todckimberly

I'm cutting down under the advisement and guidance of my medical team, so no worries there. I'm just really pleased that I'm almost there :)

earthpixie profile image
earthpixie in reply to

Its hard-but if you even have a fatty liver, its the only sensible thing to do....but you're getting there😁

in reply toearthpixie

I'm not letting this stupid government kill me, even though they've tried. I'm definitely getting there, largely thanks to the love and support of my husband :)

earthpixie profile image
earthpixie in reply todckimberly

when my liver was decompensated I was extremely ill, ascites, varices, massive fluid retention in my legs, one kidney failed, bone marrow stopped producing red blood cells. It took a long time to get from that to where I am now. I have no ascites, one grade 1 varix and blood tests are relatively normal. My last u/s last month showed a normal sized liver which is scarred and an enlarged spleen which I gather is normal. Fatigue is still a big factor but staying teetotal I am sure is the only reason my liver is 'coping'-as in not healed...

dckimberly profile image
dckimberly in reply toearthpixie

Wow, well can lol me wrong..but I'm glad I got to guess that's pretty rare? To have all that? And then be ok? And yes, an enlarged spleen does seem to be the norm, I have that too.

Well, color me wrong, in a good way!

Cheering you on!

earthpixie profile image
earthpixie in reply todckimberly

It would seem to be very rare to recover from that without a transplant-which was mentioned often at the time. I have been extremely lucky-which I am fully aware of....but I was in hospital for over 4 months.....

Being teetotal is a small price to pay for being here- I nearly wasn't.....

in reply toearthpixie

I only started drinking again through stress (I just can't cope well and that was the only crutch I'd ever known. Thanks IDS, you idiot). I was dry for well over a year and am glad to be seeing that light at the end of the tunnel again.

And here's another thing that just doesn't say "cirrhosis" to me: everyone I know was in hospital for months on end and I was only in for nine days... so while the damage was serious (which I saw with my own eyes on the ultrasound screen) where's the scarring I should still have? There isn't any, and that's not possible. Plus the story changed almost daily in hospital: one day I had cirrhosis and another day I had severe liver damage... which was it? I'm definitely going to put my consultant on the spot next time I see him because it seems that even he couldn't make up his mind and went with cirrhosis to scare me - and now things are healing that shouldn't heal if it was genuinely cirrhosis, so I have to wonder what he was trying to do.

Paulineunderstand profile image
Paulineunderstand in reply to

My boyfriend was only in hospital for about 10 days for cirrhosis to be diagnoised, and most of that time on the heart ward, but he's been recovering at home for two months very, very slowly.

White-feather profile image
White-feather

Good point, Kimberley x

susieanna profile image
susieanna

Yes, its very odd; i was convinced that once decompensated; there is no going back; other than eventual transplant; well done though; and yes, you must get the correct answers from the specialist; its one thing scaring you; but another if he is not telling the truth; so this has made things very confusing for you im sure and i dont understand this at all. Just to say, if you need a detox then do it; re a 12 step programme ; eg AA this is for each individual to decide;

im sure there must be services where you live and due to whatever stresses and strains you have had i do recommend you get some help from somewhere/ local Drug & Alcohol centre etc in order to help you give it up as it does sound to me like you do actually have cirrhosis. A consultant cannot actually lie and tell you, you have it, if you do not; he could say you are at risk of it; but if this was a lie, then thats all wrong. Good luck xx

in reply tosusieanna

That's something that's coming out more and more as I read threads and receive comments to my own: I never had a biopsy, and I'm not sure that symptoms alone are enough to make that judgement call. I most certainly had a severely damaged liver - even I could see that on the ultrasound - but if I had actual cirrhosis, where was the scarring I should still have had once it recovered? Why did I never need a transplant? And why is the worst thing that happens to me if I drink a little too much water retention (which I've suffered throughout my teens anyway)? When I thought the varices had reopened, it turned out that it came down to an irritated throat lining through coughing due to a mixture of asthma and hayfever, and nothing more. I have a lot of questions for my consultant...

dckimberly profile image
dckimberly in reply to

I thought you said you were never on the transplant list? Sorry, I'm confused.

Which, to be fair, in nothing new for me!

Xxxxx

Paulineunderstand profile image
Paulineunderstand in reply tosusieanna

The GP, admittedly being reassuring, told me about shrivelled, cirrhotic livers and said I've seen three people who were much worse than him pull through.

No, I was never on the transplant list. I waited and waited for a letter from Alderhey, inviting me for a liver profile and matching, but it never came. When I asked my consultant what had happened, that's when he decided to tell me that I'd never needed a transplant anyway! Which is when doubts about whether I'd actually had cirrhosis or not started creeping in.

susieanna profile image
susieanna

Its crazy; i am actually intrigued to find out the real truth! and lets hope it isn't cirrhosis !

in reply tosusieanna

I've been assuming it is for the past two years, but questions really started popping up when I posted on here that I'd not even been left with any scarring - and was informed that that's impossible. I'm still striving to knock the booze back on the head again, regardless, but if I was told it was cirrhosis as a scaremongering tactic then that's really not on! I'll be really pressing him to know how he can make a diagnosis without a biopsy too, because from what people are saying I'd have to have been dead and had a post mortem performed for him to be 100% certain, if a biopsy wasn't taken at the time.

Brummi profile image
Brummi

Hi, I love stories like this, it goes to show we can all conquer our demons. Well done and keep it up.

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