Liver failure

[Fauncey]

My partner has had cirrhosis of the liver for quite some time he has been admitted to hospital with bleeding varises these don't seem to bother him now. This year he has been admitted 3 times on the last discharge letter it stated decompensated liver disease so he stopped alcohol all together and has been off it from August this year. He was admitted 5 weeks ago with bleeding gums and nose which they treated and acsites which he is on tablets for to get rid of the fluid. But yesterday the consultant asked to speak with me and they are discharging him today and she said there is nothing more they can do the liver is not improving it should of started improving with being off it from August so I have to prepare for the worst as you imagine I'm beside myself with worry at the thought of going loose him. I asked about transplant and they said its usually 6 month before being accepted on list and in the past he has came off it and went back on it so they don't think he will be given a chance but he is 3 months off it and has said he won't ever go back on it. Anyway the reason I'm writing this is has anyone else been at this stage and came back from it or is this the end.

[AyrshireK]

If you are in the UK then the criteria for assessment for transplant in someone who has alcohol induced liver disease has changed.

It used to be the case that yes they had to be 6 months sober with proven abstinence and participation in some sort of alcohol support BUT this has changed.

The patient now has to be sober and commited to abstinence at time of referral and assessment but the 6 month thing is no longer stipulated as it was reviewed by the UK Liver Advisory Group in 2021.

I don't know what age your partner is and/or whether the age related issue is at play BUT I absolutely WOULD be pushing for him to be referred to one of the main liver transplant hospitals to be assessed. The consultant you have spoken to is working to old guidelines and if it is helpful here is the new criterion:-

basl.org.uk/uploads/LAG%20A...

Panel 1: What is new in the UK Liver Advisory Group

recommendations

• The requirement for a patient to solely complete a defined

period of alcohol abstinence before referral for liver

transplantation has been superseded by multidisciplinary

specialist evaluation of a patient’s suitability for

transplantation

• Clinicians should refer patients with alcohol-related liver

disease to specialist addiction clinics in liver transplant

centres or satellite units

• Patients who do not recover from alcohol-related liver

disease despite 3 months of validated alcohol abstinence

and optimal clinical management should be referred for

transplant assessment, including patients who have been

treated for alcohol-related hepatitis

• Multidisciplinary assessment of patients with alcoholrelated liver disease should comprise an evaluation by

experts in addiction psychiatry, nutritional therapy, and

liver transplantation

• All patients should undergo detailed nutritional

assessment before they are sent for transplant work up,

but this process should not be allowed to delay referral.

Panel 2: Assessing patients for a liver transplant

• Alcohol assessment should include biochemical testing

and an assessment of the use of other drugs of addiction

• Patients with alcohol-related liver disease should be

offered access to specialists in the treatment of alcohol use

disorders and encouraged to engage with peer-support

and mutual aid groups, such as Alcoholics Anonymous and

Self-Management and Recovery Training; access to

specialists in nutritional therapy is also important

• Refer patients with decompensated alcohol-related liver

disease for consideration of liver transplantation if they

still have decompensated liver disease after optimal

management and 3 months’ validated abstinence from

alcohol, with evidence of engagement with local specialist

addiction treatment services if appropriate, and they are

otherwise suitable candidates for liver transplantation; or

if a patient requests a second opinion they should be

referred to a specialist addiction clinic in another

transplant centre, where a multidisciplinary assessment of

the individual’s suitability for transplantation can be made.

All the best, Katie

[Fauncey in reply to AyrshireK]

Thank you yes I'm in UK, scotland we live. He is only 39,I will be bringing this up to them im confused as to why they havnt referred him to be honest. We have a meeting with them in 2 months the consultant that is and hopefully the liver nurse between 7- 10 days as he has just been discharged today. Thank you so much for information I am hopeful now something can be done before its too late.

[AyrshireK in reply to Fauncey]

Scottish Liver Transplant Unit in Edinburgh say they prefer to see people too early rather than too late so don't hang about. If he has decompensated symptoms he should not be being discharged from hospital care, even with cirrhosis you should remain under hospital consultants and seen 6 monthly for bloods, ultrasounds scan and regular endoscopies as required.

My hubby is seen locally (Ayrshire & Arran) and also attends Edinburgh having previously been on the transplant list there.

Your consultant who has discharged him has followed old guidance if he hasn't referred him to SLTU.

All the best,

Katie

[Fauncey in reply to AyrshireK]

They discharged him to come home to his family and spend as much time we can together. There was nothing they where doing or giving him in hospital that he can't take at home. On his discharge letter they have put he is medically improved although the liver function tests remain deranged. I will contact the liver nurse tomorrow about these guidelines. Thanks again.

[AyrshireK in reply to Fauncey]

Discharged from hospital is ok, he'll sleep better at home and get better food BUT don't let them fob you off with no further treatment - my hubby was decompensated after a massive variceal bleed in April 2012 - still going strong all these years later though has never had ascites and his issue wasn't alcohol related.

If he's done the sober thing since August the new guidelines clearly state he should be seen in a t/p centre. Print them off if you need to push for referral.

Katie

[BritishLiverTrust3 Administrator British Liver Trust]

Dear Fauncey,

If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

[Fauncey in reply to BritishLiverTrust3]

Thank you, yes it would be helpful

[Rshc]

he will need to demonstrate he is committed to a life without alcohol and he could be doing things now that will very much help support that should he go for transplant assessment. They look very favourably upon people who engage with external support for their alcohol dependency or issues, it doesn’t have to be AA there are many other organisations but if he seeks some external support it would demonstrate his seriousness to do everything he can. Statistically he does have more chance of succeeding to stay away from drink with external support. I would urge you to get into this today

[Fauncey in reply to Rshc]

He has already got that support he has been in contact with our local addictions and has an appointment although addictions is for help to get off it he already is so they have forwarded him to pheonix they help keep you off it. Thank you.

[Rshc in reply to Fauncey]

that’s brilliant, it will demonstrate commitment. My partner is listed for transplant due to ARLD, as part of his assessment he spoke to alcohol nurses and psychologists specifically about how likely he was to remain off alcohol and how seriously he takes it. He has been instructed to not drink alcohol free drinks or even mouth wash with alcohol in it

[Fauncey in reply to Rshc]

If you don't mind me asking how long has he been off alcohol and how long was he off it before he got listed.

[Rshc]

so he first became ill and was hospitalised last Dec, he stopped drinking the day he went into hospital, 23.12.21. Diagnosed with decompensated cirrhosis. Over the next few months bloods improved a bit but not enough for the Drs liking, he was rehospitalised in May (5 months after last drink) and at that point they started talking transplant. He went for assessment in Aug listed in Sept. So he is coming up to one year not drinking. I will say that even though he was told in May that they didn’t expect him to improve further he has continued to improve even since listing and his last lot of bloods were the best they have been since diagnosis.

[Fauncey in reply to Rshc]

Thank you its given me a wee bit of hope that things can change around reading this. I just hope this happens with him but I got told from the consultant to sort out paperwork ie insurances im taking it. We have a child at 12 and I asked should I tell her and she said you can leave it till we see yous in 2 months see if things have improved then tell her then. She also said he has been off alcohol from August and we should of seen some improvement from the liver but there's none. So all I can hope for is plenty protein and no salt diet and a bit of improvement and push for a transplant.

[Rshc in reply to Fauncey]

are you sure there has been no improvement? Have you access to his blood tests?

[Fauncey in reply to Rshc]

No how would I get access to the bloods

[Rshc in reply to Fauncey]

you could ask his consultant or we get them from our GP who prints them out for us. I have been tracking my partners bloods (a bit obsessively) since December.

[Rshc]

They did mention at his assessment that it worked in his favour that he gave up alcohol at the first presentation of cirrhosis but I didn't get the impression that it was a deal breaker. For example your partner might say that he struggled to give up previously but now he is getting professional support. Do not give up, keep pushing and fighting for at least the chance to be assessed. Anything else you want to know please ask, its a scary place, I have been there. Last Christmas my partner was in hospital for 3 weeks and I was told that nothing could be done and they were going to send him home and make him comfortable - I didnt accept that and we will keep fighting whilst there is breath in our body