How does a person find out the degree of severity of their liver disease/cirrhosis?

Asking a professional does not give an answer. Perhaps they do not know. The common answer appears to be - you must stop drinking alcohol immediately.

Well my daughter at last has but it took a rehab centre where at least she received appropriate 'head work' which convinced her she should and could take this essential advice. She has not had alcohol this year - although as a parent I can never be 100% certain and have been totally fooled for years, she certainly would become very ill very quickly if she did start again.

We hear of stages/ categories of disease but none are applied in my daughter's case - only "The liver will heal if she does not drink alcohol". Perhaps it is too early for a reliable prognosis, perhaps they really cannot say and so cannot commit themselves.

Guess my need to know the enemy we face is natural but maybe I am asking too much too soon.

Any comments would be very welcome.

I have learned so much from the very brave people who use this site. I did not realise until recently what a devastating condition liver disease is. It must be comforting to know you are not alone and there are so many concerned people out there who respond so frequently with advice and narratives of their own experiences which can be informative, comforting and reassuring. I have learned so much and felt very reassured at times. Thank you all.

An appreciative Mum.

10 Replies

  • Sorry to hear this. But its a normal issue. Bit like the weather forecast i am afraid. They look out of window and give the standard answer. I have diagnosed from 3 consulrants i dont have cirrohisis ( but had decompstated ALD with Ascities= cirrosis) to 2 years expectance to or 15 years. Of course no alcohol or restrict stuff food, drugs that can put tge liver under stress. We in UK again are years behind this disease and is a tickibg time bomb for the NHS. Our consultants click into standard advice, of you drink your an alcoholic stop thats whats has caused theLD. Of course high % is and stopping is of course the best advice. The stages snd terminology can and is confusing.

    Did your daughter has decompenstaed LD and Ascities or Varices. What meds...all these are indicators..

    Again wish all well please both join FB Living with cirrohis group its a very good forum like this.

    Wish u well...

  • Thank you for your reply. The word ' decompensated' has never been used re. my daughter but worth mentioning for sure at next appt. she had severe ascites initially - they took off 6+ litres but minimal now. Her meds are antacids, diuretics, all the usual B vits and Thiamine, Lactulose, all of which she takes as prescribed.

    Sadly, she has realised she will never have children and has lost hope of ever having a partner so very low at times.

    Last Mon. I came across her in the local shop buying 3 bottles of vodka. To be brutally honest, I wanted to tear her limbs off! Of course I didn't do anything close to that!!! But I was so sad, angry, hopeless, frustrated............

    Calmly asked her why, how long this has been going on and how we could salvage something from here. Two bottles were poured down the Loo - by her, not me. The third she has kept in case she has withdrawals!!!! I know, am not fooled by that. It remains unopened but is a ticking time bomb as far as I can see.

    Love her so much but know I cannot do it for her. Was poor support for her Mon as anger was the predominant emotion. Now calmer and hope I am being helpful but sometimes I am at a complete loss. Encouraged her to be honest with the alcohol counsellor and at her group today. Deep inside I fear the lure of the alcohol will overcome her and I will lose her. Yes Bigplanet, this is a ticking time bomb for the NHS and there are many, particularly women in their 30's like she, who are dying as as a result of drinking heavily and total unawareness of the silent but deadly damage to the liver.

    Thank you, talking honestly has helped me feel a bit stronger today.

  • Hi, you can generally complete a child pugh score which will tell you how much decompensation there is and (although you may not wish to know this) life expectancy. Other than this there is a special kind of ultra sound they have started doing, which I myself am due to have soon, and this will tell liver specialists how solid the liver is. The more solid it is, the more scarring there is and hence the more damage caused by cirrhosis.

    I hope this helps, best wishes!

  • Thanks Jessica, that does help. Good luck with your ultra sound, hope you have some good news.

  • A combination of Blood Tests, Ultrasound, Fibroscan, MRI, Biopsy. The best way is biopsy but that can be a little risky if the liver won't stop bleeding. Blood tests + Ultrasound or Fibroscan can usually give a good indication. However some people with a lot of damage can last a long time and other people can experience an event (drinking, wrong medication,an infection etc) which pushes them into crisis quite quickly. Key is that,by the time you are diagnosed as having liver disease, you HAVE to follow Drs orders re everything otherwise you are just playing roulette with your life.

    Other issue as a family member have to look after YOU. You need all the physical and psychological strength you can muster to help support your loved one.

  • Thanks Sheana. As you can see from my reply to Bigplanet, my lovely daughter is playing roulette again. I hope we have turned it around but I know the power of alcohol and how vulnerable people can be.

    Am not feeling like looking after me much at the mo but your advice is sound. I know I have to, to be strong enough for her and whatever outcome presents.

    Must return to Al Anon, people there have been so supportive over the years. I am a tough old bird but sometimes this all knocks me off my perch!

    Am going into my lovely garden now which always works for me, that's looking after me, yes?

    Appreciate your kind words.

  • there is a new train of thought that a liver can recover even when crrhisis is set in the best way is to stop drinkng and follow docs orders boring i no bu iam still here 5 years after being given 2 years to live ever body is different best wishes

  • Steve, your words bring hope, thank you. We just need to get over current crisis.

    Hopefully my daughter is able to turn this round.

    Feel quite overwhelmed that so many of you chose to reply. You have given me a little light at the end of a very dark tunnel. I do wish you continued improvement, well done and thank you.

  • Hello, and welcome to the group. It must be so hard for you as a parent to be looking for ways to help your daughter. You don't say how far your daughter's disease has developed. Has she been told she has cirrhosis? Has she had bleeding from her gut? Even so, the medical view, I understand, is that she has to stop all alcohol ASAP. It's good that she got good support in rehab. Her way forward is a to remain off the booze, and even if she isn't 'cured' of all liver damage, stopping will probably halt progress, improve her health in general, help her live longer, etc. I know it's very hard to turn an addiction around. Though my illness is due to wonky antibodies, not alcohol, I have had depressive tendencies for years, so the 'head' support is so vital. From the small amount you have said, it sounds like you won't get a prognosis, but I don't really know. But I hope for all of you it's all quite reversible/controllable.

    By the way, I don't think I am 'very brave'. All I've done is joined a club I don't want to be part of, cos I've got a disease nobody understands or has even heard of, bladdy bladdy bal. I feel I should be waving liver-coloured ribbon in the air!! Just saying .... but I agree am glad this group is here and so supportive.

  • You need to get your daughter to stop drinking immediately - the liver can function again - To get a proper prognosis she needs to go through the tests and have a full evaluation. Whilst the Pugh score can be scary is valuable and can with the right treatment be reduced

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