I’ve been thinking about writing about this for some time, so here goes.
As anyone who has been there before will tell you, the liver transplant assessment can be not only a life changing/saving opportunity, but also very anxious time for not only the hopeful recipient but also for the carer too. This is doubly so for those people like myself who’s liver damage has been caused by alcohol abuse. There is very often a feeling of unworthiness at this time as some blame themselves for causing this situation in the first place.
So, with that in mind I thought I’d share a little advice to hopefully relieve some of that pressure.
The decision as to whether a candidate is considered suitable or not is decided by a team of experts with specialist knowledge of not only the physical aspects but also the mental approach too. The mental aspect is as you’ll agree a vital part of the process. As these people need to know that you’ll be a worthy recipient, and that their work, time and effort won’t have been in vain, and that this precious gift hasn’t been wasted.
Part of the assessment process involves a psychiatric evaluation. This is the ensure that firstly you’re not harbouring any suicidal thoughts or tendencies, and that you have resigned to a life of sobriety.
Everyone needs to know that you are genuinely serious about total abstinence of alcohol.
There is a questionnaire that candidates are asked to complete. How this is completed is of great importance. The more information submitted during this questionnaire the better as it will show a healthy approach to a past problem in your life and hopefully convince others of your sincerity. I have to confess that I went a little overboard and challenged some of the questions. But this only proved my commitment towards the problem. So don't be afraid to speak out. And above all be honest.
The Queen Elizabeth Hospital, Birmingham, and The St James Hospital at Leeds, use the same questionnaire. I have found a copy of this here online for those who are interested. This will hopefully be able to give you advance notice or what to expect and so hopefully take some of the pressure off as you’ll be a lot more prepared as to what is to come.
I should point out that there are no right or wrong answers, or any trick questions. The assessment team just need to know more about your approach to alcohol abuse and what impact it had on your life.
Hi Richard - thanks for the post, but worth pointing out that not all units use the questionnaire approach. Edinburgh for one cover this in a quite extensive psychiatric review and a length discussion with the Alcohol Liaison Nurse. The cover the same sort of stuff, but just a different way of doing things. Edinburgh did my sessions in a a very informal setting to allow me to feel at ease, and my husband was allowed to sit with me for part of the session (they obviously do need to speak to patient alone, as the do the primary 'carer', he had his own session - wonder what they talked about)
PLEASE anyone who is in the situation Richard or myself were in DON'T panic, they are not out to trick you. Be honest with yourself and them, and I do mean yourself, as that is where most of problem can lie (I ended up admitting to drink around 15 bottles of wine a week before I gave up. They gave me a chance to talk about it, add it up over the week and I had never thought of it in those terms until then, and it made me even more determined never to return to that place again).
Alcohol reliance is serious, but by the time you get through to the stage of an assessment, you have already done the hard work, you have been sober for months, and the team know that. All they want to check is that you are mentally stable enough to stay away demon in the future, if not they will offer you the help and support you need to get you there.
Thanks for your most welcome comments George, I really wasn't sure what the other transplant centre used to assess a transplant candidate so that is why I only mentioned the QE and Leeds. I do consider all the National Liver Transplant centres as being centre's of excellence.
Thank you, that was really interesting. Thankfully I am not there needing a transplant but I am also not in a dream bubble either, I was told I needed to be put on the register at the very beginning but by following all advice things have improved with the odd complication thrown in every here and there.
One thing that really stood out to me was the point that was kind of saying ‘ok you have stopped drinking because you had to but when you get a new liver will you go back, what will be stopping you reaching for a drink’ that is something I have never thought about. I can’t imagine having a drink now (18 months) as I feel different but better and now understand when people say get up, out of bed, make the most of your day.
I remember my consultant saying ‘the aftermath from George Best was huge and major changes were made in light of what happened’.
This is what some of us were trying to say, but others disagreed. This is why l'm also against suggesting some people should drink alcohol-free drinks. I think there is a question there about what are you going to drink in place of alcohol. If the reply was alcohol-free, then there is a good chance that the application would fail.
Yes, I have my personal feelings about the psychological triggers (no matter how much non alco beer my husband drank he would never, ever drink alcohol again, and I'm sure I'm not being naive), but rules are rules & for someone to be rejected from the transplant list for doing something that's not allowed (even using mouthwash with alcohol) does not bare thinking about (we're in Leeds).
Hi
Your advice to all on here has been invaluable.
I've just sent you a pm, just something I was unsure of. Take care Lynne
Wow ! I would find it really hard to answer those questions even now!
10 years of no alcohol and never totally dependant, although I did drink a lot.
They are all very good questions, by the time I was ill and being asked to complete this it would have been impossible for me because of HE and the ability to write had left for a long holiday!
But thanks for publishing it, I was not asked to complete this and I am a QEH transplant patient. I had to sign a contact to never drink again, which I will keep to.
When I had my op I was in Paris and it was a matter of urgency. I’m not sure if a questionnaire is normal over here but I was too ill I think to have one. I remember however, just before the HE coma , that a group of 6 psychologists arrived at my bedside. 3 or so were students. I knew that they were the people I had to impress. I remember thinking that if I had to plead my case it was now or never. I can’t remember the questions but I replied totally truthfully laying out everything and that it was totally exhausting. They gave the ok and 36 hrs later my life was saved.
As for the AF booze and the mouthwash it’s interesting it was in your booklet. I had the same advice. People don’t realise quite how desperate some addicts can be, hence the rules. I suppose it is only us, the survivors who know exactly what is taught to us pre and post transplant.
Please continue with your very educative posts. They are always full of well-sourced info and worth a read.
Thank Isabelle, your quite right about us survivors knowing, but in a way, we are all here to either learn and be educated, or help and advice others. The only sad thing is when people have a different outlook and choose to ignore the advice.
Someone happened to mention the alcohol hand cleansers the other day. These had to be removed from all prisons in the UK. I fear it's not about people with alcohol-related issues, but more about today's drug crazed culture. The last job I had before I took retirement was that down at Cardiff Prison. Cardiff prison is one of the old Victorian style prisons, a bit like wormwood scrubs. Here the prisons make their own alcohol by using fresh fruit and sugar, this is then left outside on the window sills to ferment. This has been go on for years. Anything for a quick fix.
Or chewing gum, this is strictly not allowed. But if you need some cocaine then the guy in cell 32 is the man to see.
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Pruno, or prison wine, is an alcoholic beverage variously made from apples, oranges, fruit cocktail, fruit juices, hard candy, sugar, high fructose syrup, and possibly other ingredients, including crumbled bread. Bread supposedly provides the yeast for the pruno to ferment.
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