My mum was admitted into hospital with alcoholic hepatitis last week. We knew she drunk but not too this extreme it is a huge shock and because of covid we hadn’t been able to properly see her, she’s 56.
She is extremely unwell AKI 3 on admission now reduced to 2. Decompensated cirrhosis, lower GI bleeding, extremely jaundice, over the weekend she was very encephalic trying to pull her catheter and cannulas out etc. She is slightly improved today, more alert ate breakfast. She hasn’t tolerated NG tube but they will keep trying. They have said it is a case of watch and wait.. does anyone know how long it takes to know where it will go..
She is Also complaining of diarrhoea and vomiting is this normal?
Also what is the stance in the uk for a liver transplant atm for alcohol hepatitis? Is it ever an option?
The hospital haven’t been able to give me much and my mind is running wild
Any comments would be welcome 🙏
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DreamRn
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My mum, the same age, was also in a very similar condition with a couple of added complications (heart attack, kidney injury). She was in hospital for 7 weeks over the summer and we were told she had a 50/50 chance of survival. She has since come out of hospital and lives fairly independently albeit not as she did prior to be admitted. We were told my mum was not a candidate for liver transplant due to alcohol dependency in addition to other factors although I believe that it a person can demonstrate abstinence and have no other underlying medical conditions they may be considered for a transplant. I’m sure there Will be members of this forum who know more in this area than I do. The Liver Nurses from the Liver Trust are a great resource of knowledge and support - you may want to get in touch with them.
The feeling of uncertainty and dread was all too familiar. I expected all the answers (and still do sometimes) however this kind of a diagnosis is so variable in terms of prognosis that at this stage, it is likely to be a period of monitoring and see how your mum responds. Whilst I know that does not answer or give you what you need right now, take comfort in the fact that she is here and being cared for by our wonderful NHS. Try to take things one day at a time and remember to look after yourself.
Sending you lots of love. Know you’re not alone & keep us updated x
Almost 2 years ago I was in a very similar position to your mum. You must be so worried!
You will find great support here from the nurses and do call them as they are amazing and supportive👍 I can only really share my experience which will hopefully help! I too was 56 when I was admitted to hospital, though without Covid looming!
I had terrible ascites (swollen and uncomfortable) everywhere! They drained that and I was much more comfortable! They then tried me on diuretics which caused me to have an AKI, so they stopped them!
I had vitamin K given to me by IV to help me and Ct’s and X-ray’s to find out exactly how bad things were! All this time I was angry, with myself, as this wasn’t just going to go away and why were the staff doing all this to me as I really didn’t have a problem with alcohol!Things got better once I admitted I had a problem and needed help to stop killing myself with alcohol!
I couldn’t eat and was prescribed high protein drinks and threatened that if I didn’t start eating an NG would be put in! You really need the calories into start to try and get better! I struggled to eat as the hospital food was enormous portions! You really need a lot of protein and you need to be able to show weight gain. An NG tube though scary can be a good way to get the calories in!
Diarrhoea can be caused by lactulose, you need to get rid of the ammonia? Otherwise that causes/makes Hepatic Encephalopathy worse! I also had Rifaximin tablets to help with that! I didn’t suffer too badly with that! It does sound like that might be causing your mum to pull tubes etc out and also if she is withdrawing from alcohol that may also be contributing to her behaviour!
I got better and was discharged from hospital and had regular follow up appointments, I got well enough physically and mentally that I was assessed for a liver transplant last August and was given my gift in December last year! It is a long and scary road and many challenges along the way.
I’m sorry if this sounds like an essay, other people will have different experiences I am sure!
I’m not sure if your mum has admitted she has a problem? It is the way to start to move forward! Not one of the medical staff were judgemental, I think I was harder on myself! I had amazing support to help me through, one friend was good cop and another was bad cop!
I really hope your mum gets well, please feel free to ask me anything if you think it will help🙏
I can tell you the stance on transplant. Candidate must demonstrate abstinence for minimum of six months. There will be random ethanol tests to back this up. This is even before you are referred.
The transplant centres will not accept anything less. They will want to check out the candidate also with a psychiatrist and after that it will be down to their review protocol.
The sooner drinking ceases and if there is opportunity to liaise with an Alcohol Centre the better.
You must understand that choice of abstinence is life long even after a transplant.
My husband was diagnosed May 2019 and I know you are in a scary place right now. You will get all the help and support right here no matter how many questions or worries you come up with someone on here will have been there and done it.
To be considered for a transplant your Mum must remain sober for at least six months before they will start to look at suitability for a transplant. First they will do all they can to get your Mum and her liver optimised some people rally enough to live right enough lives maybe different ones and they will continue to monitor her probably by her GP. If things do not improve the way they would like then they start to look at transplants and assessments which is what my husband is going through right now.
The one thing everyone told me was to take one at a time and I have struggled with that but have finally accepted the change in our circumstances and to deal with each day as it comes.
Everything is new and strange for you at the moment but we will all help and support you and don’t forget you can call up the help line as well.
Take care x
Hello,
This is such a dificult time for you all. You will great support on this forum. There is also a anurse led free Helpline if you would like to talk to one of our liver specialist nurses:
My mum has just had the diagnosis of ARLD. She was sedated while in hospital and it was not nice to see as she was extremely incontinent too. She was also Hallucinating and seeing spiders. She has been home now around a month. The 1st few weeks was tough, I moved in with my parents for a bit to help out as she was so weak and incontinent due to the Lactulose. But she has since improved slightly as they have taken her off the Lactulose. She is very tired and still a weak but she is not as bad as she was. It isn't a nice time for you and once this part is out of the way it will get a bit better. I go and see my mum daily, she is laid up and still has the Ascites but better then she was. The GP calls and checks up on her, we've got a phone meeting with a consultant soon. This site has help me as I was the same as you, felt like I was being kept in the dark and didn't understand what was going off. You end up googling and googling to find out things and you end up going out of your mind trying to understand. People of here have gone through it so this is the best place to ask anything you don't understand. Thinking of you xxxx
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