New here, bit scared.

[Yellow77]

Hi everyone. I have been wanting to join this forum for a while now, but never quite plucked up the courage, but today seemed a good day so here I am.

I am 41 and have been drinking on and off for 20 years, sometimes heavily, sometimes not, and for a good few years not at all.

To cut a long story short, I am a mother of 4, children not in my care at the moment, about to get divorced, homeless for 18 months, while I was homeless, drank daily to forget about everything, and then one day I woke up yellow and fat and vomiting blood.

The very same day, I was admitted to ITU, where I stayed for 10 days and a further 4 weeks on medical ward, have since had 2 further admissions for Ascites and now am under the care of a liver consultant.

And all this has happened in the last 4 months. My diagnosis on my medical report says: alcohol related cirrhosis, hepatitis, coagulopathy and grade 1 encephalopathy. I had a fibroscan with a reading of 47.5kPa and a score of 47 on the chronic liver failure score.

I have copied this straight from my notes, because I don’t really understand it all. From all these problems and scores, I feel like there is nothing wrong with me. I don’t feel ill, no more Ascites, am not jaundiced, it’s all a mystery.

I know I am very ill, but haven’t formally been told by my doctors how ill, but why don’t I feel ill?

I read on here before I joined that a decompensated liver can recover. Is this wishful thinking in my behalf?

I am so sorry to come on here and splat my recent medical history on here, but I didn’t know how else to be.

My family think that because I am not in hospital now and that I don’t look physically ill that I am on the mend and recovering. But, realistically, I don’t think I am. I don’t have anyone to talk to because my friends all drink and don’t think that I have a serious health problem. Am I correct in thinking I have serious liver failure and that this is not reversible, because if so, I’ll need to get some support.

Sorry if this was inappropriate, I know I am not meant to ask medical advice, just maybe some of your experiences and advice.

Thank you for reading and you all take care.

[Brett11]

Hi Yellow,

Welcome to the forum. You can’t reverse liver cirrhosis without a liver transplant. Cirrhosis can be managed though and you can have a normal life expectancy. Other people on here can go into a lot more detail about things. Just remember to stay off the booze for ever now. Your liver has told you it can’t cope with alcohol anymore..

Cheers,

Brett

[Yellow77 in reply to Brett11]

Hi. Thank you for your reply. No booze now for 4 months. I really do feel almost ok. I’m quite tired, but forgetful, but apart from that I don’t feel like I have cirrhosis at all. I’m seeing my consultant this Friday so hopefully he can set me straight on things.

Thanks again and well wishes.

[Hidden]

Hi

Sadly I agree with what Brett is saying. Cirrhosis can't really be reversed and at some point you may need a transplant. All you can do is lead a healthy lifestyle and try to manage the condition as best you can.

I also didn't feel ill when diagnosed. Can't remember the exact fibroscan score but I think it was in the 70s. When my consultant mentioned the possibility is a transplant, I was thinking: What is he talking about!? Genuinely thought my liver had at least another 10-15 years in it. Fast forward 9 months, I was in an operating theatre...

Sorry this is probably not what you wanted to hear but I think it's important you get the right information and have realistic expectations.

Good luck

K

[Yellow77 in reply to Hidden]

Hi. No, it is what I want to hear. Honestly. Because as I said in my post, none of my friends or family know that I’m still ill. So after my appointment on Friday, I think it’s about time we all faced reality, as I feel like I now need support.

Wow, that was a quick wait for you. Probably for the best. I sincerely hope you are doing well and thank you for your honesty.

[Hidden]

Hi and a big welcome to this forum 😁. Sounds like you’ve been and are still going through bad times.

As you already know we aren’t meant to comment on specific test results because we are, in the most part, people who have got liver problems, those who are managing them and those that are struggling a bit/lot, and those who are recovering after transplant, i,e we aren’t consultants with years and years of training and expertise. But you will get, hopefully, responses from people with experiences to recount and others way more knowledgeable than me - not difficult.

Please don’t be sorry about splatting 😁 your medical issues here! We all do it, and this forum would not exist if we didn’t 😁😁.

I didn’t feel ill for years and years but I was. Yes and others don’t know you are ill unless you go yellow, or if you get worse like me, you can hardly walk and everything swells up like a balloon. The latter was when I really started to get medical help. I had buried my head in the sand for years. The pain in my right side disappeared if I drank enough! Bad move lol. I think you know that already though.

Make sure you are totally, and I mean totally, honest with your doctor and he/she will do everything (or should) to make sure you see the right “people” to give you all the right tests and other support. Unless you are very lucky it will take time, but we all have had (all, I think nearly all) to be patient and it can get mighty frustrating at times.

Please please go and see your doctor (again?) to get things sorted!

Good luck yellow (lets hope you don’t get yellow any more!)

Miles

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[Hidden]

I have responded to you privately

[Yellow77]

Thank you everyone for your replies. I already feel a great sense of relief that I am openly talking (well writing) about this. I have an appointment at Kings on Friday and so hopefully will be able to get some answers and get everything straight in my head.

Has anyone got anything they think I should ask? I forget everything, so I’m going to write it all down before I go. So anything that is a good simple question would be much appreciated!

Actually the forgetting everything should be a good start, I’m guessing that’s the encephalopathy. Didn’t know I still had it, but don’t seem to know too much!

Thanks again for your replies.

[Hidden in reply to Yellow77]

Hi again yellow.

Great idea to write questions down. Just as importabnt or more so, is to go with a friend to help you understand/remember what was said. Maybe even ask questions you hadn’t thought of! Try and write important things down and do not be afraid to ask what he/she means if you don’t understand.

As an aside my MiL is in hospital at the moment and we always go early to try and catch the doctor on the ward rounds because MiL is almost totally deaf. Today we were late and missed the doctor. Asked MiL what they said - “I don’t know”: “Well did you ask if they could repeat it?” “No I don’t like being a nuisance!!” OMG. That is a true story - don’t do that yellow ask away - they won’t mind 😁

Miles

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[Yellow77 in reply to Hidden]

😂😂 sounds like me in a way, except my answer to “what did they say?” would be “oh shit, I can’t remember!” 😂

[Hidden in reply to Yellow77]

Hahaha - me too. By the time I walk out of hospital 50% is gone! Thank goodness for wife. You see now though, since I’ve had the tp I’m on so many tablets I can blame it on brain fog 😁. Before I came on here I had never heard of brain fog. It just conjures up pictures of..you know...ythat big smoky place ddeirn souf what gets all that whatsits, you know you know in front of your face and yer cant see where youve been never mind where you’re going...

Miles

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[Yellow77]

I just had to google what tp meant..... see I’m new. It says it stands for toilet paper!!!! I’m taking it that google isn’t quite up on the liver abbreviations..........

[Hidden]

Sorry yellow, my fault or my bad as they say! Tp = transplant.

Miles

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[Hidden]

Hi there yellow, I am nowhere near as knowledgeable as some of these amazing people on this site. What I can tell you, is like you I was new, a little while ago and my word what a difference it has made to me.

I am still scared, most of the time, but I know beyond anything else that I am not alone anymore.

The people who are on this site are truly awesome.

Each and everyone of them are so patient.

You will love this site.

[Hidden in reply to Hidden]

PearlI feel just the same. Some eople have such experiences it makes my issues seem trivial!

Miles

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[Yellow77 in reply to Hidden]

Thank you Blackpearl. I can tell already that this site and all you lovely people are going to really help me. My journey has just started, albeit very quickly and dramatically, so finding you all has come at a very good time x

[X19Dave]

Hi do not worry if you piss people off they are the ones who should not be here we are all here to give support

As above you are stuck with the cirrhosis and a liver transplant would be the next thing when it gets very bad

on the up side my wife had her transplant 2 years ago and now you would not know she has had one she is back to how she used to be before everything went sideways

Not sure where you will go but she was at Addenbrooks and they were fantastic

BUT STAY AWAY FROM ALCOHOL we are all different my wife had her transplant after drinking about a 1/4 bottle of vodka a day for about a year but i did drink about 60 pints a week for about the last 5 years plus and have no problems but i have read somewhere vodka is the worst thing you can drink

You will feel better

Dave

[Yellow77 in reply to X19Dave]

Thank you Dave. That’s so good to hear about your wife.

I was not a heavy drinker all the time, like I said I had years on and off sober. It just seems to me to be how we are individually made up. My father has drunk all his life, at least 2 bottles of wine a night, and he has no problems. Guess I was just extremely unlucky.

I have been completely off the sauce since this all started and without getting ahead of myself, has been very very easy.

I know it probably won’t remain this way, as I am an addict. Addicted to anything that takes my fancy, but I also have been stunned into shock that I have progressed this much so quickly.

Take care and thanks again.

[Radnor]

Ask to be copied in to any letters to your GP. That way you have it in writing. You can then ask what does this mean on here. No of us are qualified on results and what they mean, we are all different.You have been on a journey from hell, it sounds very much like you ,along with thousands of people , were not given help with your mental health? In a lot of cases drinking is a form of self medicating, along with those who are addicted to drugs.i worked with adults in this position. Yes some of them were anti social however their back stories were, in 80% of cases, heartbreaking. You may be in a very worrying place right now but God willing you get a chance to re start your life in a much happier situation. Sadly the people who are friends are also drinkers. To start anew you will have to make new friends, but it will be worth it. Hazelx

[Yellow77 in reply to Radnor]

Hi Hazel. I just wanted to acknowledge your message. I will reply as soon as I get home. Thank you so much x

[Yellow77 in reply to Yellow77]

Hi again. Yes my life turned completely upside down just over 2 years ago when I had to flee my husband. Fast forward to now, and I am sitting on a liver forum, with not a great deal to look forward to, to say the least.

And you are right, the mental health devices around here are dreadful. I have been referred to them a god few times, had an assessment and referred straight back to GP. I also believe that I was ignored in the social service system regarding my children, as I was labelled an alcoholic and once a stigma is attached, it’s difficult to remove. I have read on numerous reports about me, that I am still actively drinking and not engaging with local services. Are these people able to see through walls????? How do they know? In fact a lot of what they have written is utter bullshit.

I now have an excellent solicitor on board, but all this has come at a bad bad time.

Anyway, hoping you are well and hopefully will hear from you soon, x

[Yellow77 in reply to Yellow77]

Mental health service..... not mental health device 😂