Hi all. i need some advice; someone i know has cirrhosis; went to specialist; was off alcohol for about 2 yrs; had a brief relapse; legs went large/feet/; no acites.......may still be compensated; not sure, waiting for blood results/ specialist says if an alcoholic has even one relapse/ thats it; a liver transplant would never be offered now if needed; i thought that if someone proved they were off the drink for 3 or 6 months.....this would then change...they could have tests to check if they had been drinking........someone else has done research for me.....and it doesnt say anything about having one chance only.........specialist was talking nice......but due to my own mental health problems and vulnerability/ weakness.....i believed him.......can someone please shed any more light on this......as i dont now believe the specialist.
Are we being mislead or discriminated ... - British Liver Trust
Are we being mislead or discriminated against?
I've not heard of this to be honest but I can see where your doc coming from maybe he thinks you've fell once so it will happen again , just keep tellin the doc that this isn't so , n he's committed to being sober, it's a precious gift the chance of a good liver so they may be saying it for you to prove them wrong if you understand what I'm trying to say , good luck with the future x
During a transplant assessment there is generally an indepth psychological study done of the patient especially where drugs or alcohol have been the cause of their liver ill health. This isn't discriminatory it is just that there are so few donor organs available transplant teams want to give them to patients whom they are fairly certain will not go on to abuse the new liver. If it is felt (perhaps) in this study that a person might not be able to comply with the demanded life long abstinence pledge that they are required to sign pre-transplant then it might be that they are ruled out for transplant even after one relapse .
A person will generally require to be able to prove at least a 6 month period of abstention before they'll even be considered for an assessment & if successfully listed they will indeed be subject to regular tests to ensure they are still sober whilst waiting (and will be removed from the list if found to be drinking).
So, the specialist wasn't necessarily wrong or descriminating but was pointing out the potential consequences. It might not be too late already but your friend really does need to abstain completely or a transplant may be removed from treatment options available.
On an aside you mentioned he/she had enlarged feet and ankles - was this checked out as this could well be oedema which is another way that fluid retention presents rather than the ascites in the tummy.
Katie
Thanks for your responses; there was no in depth psychological assessment. He has been removed from any future transplant based on the fact of this one blip; he has been over 2 years sober....we thought if he came clean, considering length of time off it; the specialist would say, ok, thats not good, but we will now monitor you, test for alcohol, have to stay off for 6 months etc; i didnt expect him to dismiss him totally! Yes, its oedema. There was no signing of any documentation at all. This person has worked for over 40 yrs, paid taxes, nat insurance, paid fortunes in tax on booze; even a live donor will not be considered according to the specialist!! ; then there was the first so called specialist who told my friend he didnt even have cirrhosis, when he did! I diagnosed it myself 6 months before anyone else bothered to!! treated him like crap; yet this was the bloke who treated George best calling him 'his friend' People do not want to be alcoholics/ go through all this suffering who in their right mind would want to....many many people in the NHS do treat alcoholics/ drug addicts like shit....these are still illnesses, addictions, diseases..... the specialist was adamant....he is never gonna get a transplant if needed through one blip.....thats not right in my view...i shall be taking this matter higher, much higher; thanks for your advice; but something isnt right here im sure. I will not rest and put up with such treatment. Or should i say, no treatment.
The psychological assessement takes place at transplant assessment and signing of paperwork (abstinence pledge) also takes place then. From your description of seeing a specialist this wasn't a transplant assessment - that is normally a few days process with all sorts of tests and chats with doctors, psychologists, social workers, transplant co-ordinators etc.
A consultant can't put someone forward for transplant assessment if they are still drinking, even if it was just a 'blip' there is strict criteria for alcoholic liver disease and progress to transplant. The patient has to show commitment and absolute compliance to medical regime & abstinence.
I don't really accept that alcoholics and drug addicts get treated like sh*t as you say.
At the liver transplant unit in Scotland which we attend - of all the causes of liver disease those with alcoholic cirrhosis get the highest number of transplants per year. Because their health often deteriorates quicker than those with other causes many folks with auto-immune (and totally unavoidable) illnesses wait years for their chance at a 'new life' often living a far reduced & miserable quality of life because they are seen as lower priority than those with alcoholic liver disease.
Whilst I acknowledge that alcohism is an addiction and very hard to break and I am generally not judgemental as to how a person got poorly in the first place but I have to ask why should your friend (who has self-inflicted their own condition) take a higher priority over other patients (who have perhaps done nothing to bring about their own illness)? You may call this relapse a 'blip' but medical professionals will see it as non-compliance with abstinence and if they went ahead and gave a transplant what's to say further down the line another 'blip' won't happen or indeed a full on relapse to alcoholism and a wasted donor liver.
Your friend should now receive treatment for his oedema and continue to receive monitoring (6 monthly ultrasounds, blood tests etc.) and if he can resume his abstinence and commit to it then who's to say what will happen in the future - there are many, many abstinent alcoholics on this page who have gone through very rigorous testing etc. etc. before going on to transplant. Your friend knows what he has to do.
Thank you! There are so many on here that ended up with liver failure with no fault of their own. Also there are so many here who have gotten here through alcoholism but have changed their lives around and they are the ones who have worked towards earning the gift of life!
You are of of no help to me; i do not accept that alcoholics get priority treatment over those with non alcoholic liver disease; if this is the case, please show me the figures please and the proof. I accept that it is partly self inflicted; but as you are obviously not an alcoholic and you do understand the disease at all/ the reasons the full issues around alcoholism. And its fairly obvious to me that you are being judgmental . Though in part, i do acknowledge some of what you say, at the end of the day, alcoholism is a disease and i know for a fact that many alcoholics get treated like rubbish at Hospitals and by the NHS as i have seen it with my own eyes. I have seen the way they look at them and judge them on many an occasion; on most occasions; those who go into a caring profession are supposed to be non judgmental; anyway, i shall say no more in conversation with you as it is pointless. I never once said he should take higher priority over other patients either.
Susieanna I can understand your fear and anxiety for your friend turning to anger. However please don't direct that at very knowledgeable people on this forum who have been to transplant assessments, whereas you have not.
I stand with Ayreshire on this, regardless of whether that will direct further anger from you toward me. It's not just pre transplant that the doctors have to be sure about the patients commitment to abstinence, they have to be convinced by the psychological assessment etc that the person will not abuse their gift of life post transplant as well. It's an incredibly difficult decision to make but then so is each families decision to donate a precious organ.
Well put Bolly I don't believe they look at drinkers different for one moment I'm an ex drug user as you know n I was treated with utter respect from the moment I was seen all the way through it bothers me when people think they get treated different , when all in all its there own inner fears that cause this , to get such a gift you have to give a lot back in my view , being sober or abstinent should come easy for the gift of life X sorry if I've gone on 😀 Take care
Fair enough on not continuing any discussion with me but attached is a link to the Scottish Liver Transplant Unit page (proof) upon which it shows a graph demonstrating numbers of transplants and the diagnosis of those requiring transplant nhslothian.scot.nhs.uk/Serv... - Alcoholic Liver Disease (shown in Pink and marked ALD) has consistantly been the group receiving the most transplants & I would imagine that all transplant centres have a similar ratio. All of these patients will have had to undergo stringent tests and proved that they can remain abstinent.
I know you have not said he should take priority over other patients but you are pushing for him to have a procedure for which he is currently not eligible because of on going alcohol usage (a blip is sadly a relapse in medical eyes). The medical profession have a tough job to do in deciding who gets any available donor liver and it's a fine balancing act, there are not a lot to go around and they can not give it to people who are at risk of relapsing and going on to damage the 'new' liver, hence the required proof period.
Anyway enough said, I've been posting on here for 4 years now as i've been supporting my husband through this hideous disease. I have communicated widely with many patients & carers who've been unfortunate enough to sustain liver damage through many different causes (including those with alcohol and drug backgrounds) and i've always strived to help all where I can. My guidance above was gained through sitting through a transplant assessment and attending transplant clinics for over 2 years.
Im not pushing for him to be assessed for a procedure/ assessment at the moment ; im pushing for him not to be discounted from any future one ; I may not have been on this forum for years but i am very, very knowledgeable on on alcohol and addictions; and have had this knowledge for many many years/ done research/ many personal experiences etc etc; im talking about since birth basically; what it does to families all the effects/ everything almost/ i know most things about it; i dont claim to be knowledgeable on a liver transplantation assessment as this has not and apparently will not, ever be done; though if that stage happens/ well, long before then, i shall fight for it for reasons stated previously. My fight actually starts this week. Re your graph; thats fair enough then; if the experts were convinced they were worthy at that final stage re transplant then i think its fair.
susianna the doctors and other health professionals on MDT teams and liver transplant assessment teams already know about everything you have said you know about alcohol - they will have assessed thousands of alcoholics for transplant. If they consider your friend appropriate and suitable for a transplant, then he may well get on the list. If they dont, he wont - it will be up to how he presents to them, not up to you.
Sweetie, you wanna help your friend? Get him to an AA meeting, and it sounds like you need allanon yourself. I'm in recovery, and AM a recipient of a transplant..most of us DO get livers over others, especially in areas where the population dictates what type of diseases are most prevalent.
Pls don't disregard what you hear on this board. You may not accept or may not acknowledge all the way to your friends grave. Right now he needs to focus on staying sober. Period.
Worry about a transplant assesment when they offer one, which they won't until he's had some time sober, once he's sick enough.
You getting mad at people who actually know what their talking about certainly does not help your friend, now does it?
If it were me, I'd be grateful people with knowledge were willing to offer me help.
But that's me. and of course other people get mad at the idea that we can get livers. They did not destroy their own livers only to be rewarded with new organ s.
But doctors should not be like that. Get a new consultant.
But as far as people go? I've had people stop being friend over it. That's their choice.
Hi I would just like you to see it from an ex drug users view , there not judgemental there looking out for the best option I used drugs for a long period but I had enough n slowly beat my addiction I've been clean for over 10 years , you have to put the work in to reap the rewards a blip in my experience could be a day , a week or years , it's how the addict see,s it .ypu have to face yourself n be honest , if you stopped smoking got say 2 years then had just one cigarette is that a blip or have you not beat your addiction ? Having a transplant is a massive massive gift which I have been blessed with ,everyday is beautiful to me , you reap what you sow , the doctors have to know n see that there's no malice involved ,it's got to be the right decision by a team not just one person n that's it , alcoholics are no different, there human like the rest of us. ,we all have choices in life it's who makes the right ones that go forward for an assessment,n leave there addiction behind good luck with the future , all the people on here are very knowledgeable more than I , n have helped me unconditionally ,take strength from them not pain xx
Ok. My understanding is that sobriety is necessary for six months. I understand that the reasons for this aren't only because its a line in the sand time line but also because alcoholics livers can start recovery after 6 months.
I don't believe that one consultant can make the decision that you are not legible for transplant assessment. I think this needs to be addressed, perhaps ask to see another consultant to explain this. After all assessment is a panel of experts who make an informed decision considering health both physical and mental.
As a health professional and someone with cirrhosis who has not taken any alcohol for over 6 years I can perfectly understand your doctor's feelings. It may be that he thinks that this person will again slip into drinking quantities of alcohol and if a liver transplant is possible all that time, work and not to mention expense will come to nothing.
So the best thing is to resist at all costs any form of alcohol.
I don't understand why people are agreeing that a single consultant can make this decision. Surely if you have been sober for six months you should at least be refered to assessment where a team of experts make an informed decision?
Re expense; what about the fact that my partner has worked for 40 years, paid his taxes, nat insurance/ paid tax on all that booze; of course you are correct re avoiding alcohol at all costs; thanks rodeojoe; im feeling pretty much on my own on this site; i was hoping for more support, so am rather disappointed to say the least.
I am feeling that my partner is being judged , even by alcoholics; maybe/ well obviously/ some people have more empathy than others; i have great empathy, always have had for many people; but by in large i find so many people judgmental and without empathy, especially when it come to alcohol/ drugs; though there are some things i understand; 2 yrs sober is pretty bloody good. Bolly, i know it is not up to me; many thanks for the advice rodeojoe.
From what was written in the first post, it's not been 2 years sober, there was a relapse. So I guess the medics would start again from the date of the relapse, if we are talking about how long a person has been tee total. But my guess is the assessment of their ability to remain abstinent is not solely based on how long they can stay off the booze, but an assessment of all the psychological reasons they were have been addicted to it and whether they can resolve those issues well enough to convince the transplant team.
It's great that you are so supportive of this friend, but to be assessed for transplant they need to have enough family/friends to provide at home care during recovery time. Who does he have to nurse him?
Doctors don't look at a balance sheet of someone's National Insurance contributions versus the £50k+ cost of a transplant. They look at which of the patients on the waiting list will benefit most long term post transplant, they look at which surgery is most likely to be successful.
Right Bolly, that two years now no longer counts. It's out the door and negated by a relapse. His sober date started the day he got sober again. The other does not count, nor does being a tax payer etc. she's saying things that medical people don't use in assessing transplant Needs. No doctor ever asked me about my work history and if I paid taxes.
And for those of you who don't know this, they assess your emotional and mental state through appointments.
A recovering alcoholic is happy of it, they talk about how long they are sober, if they attend AA or therapy. Doctors can tell a lot just by listening. They ask about if you need help at home and you cannot believe how many questions and concerns are answered that way. Also, most people in recovery are happy, or at least grateful. Even if they are very sick, not talking a lot, you can tell.
If sober, we are so excited we are..because we know how hard it is to get there. Most of us die. Period.
Of the 50 or so girls I was in treatment with for 90 days in the US only one person stayed sober. Me. Some of them are dead.
I don't say this out of pride, to be honest, I cannot believe that I got to get sober..me! I'm so grateful everyday. And for my new liver? I can't even talk about that.
Sorry to rant.
But this post has upset me.
Going to wait for Tony now to come and visit me. Hey Bolly? Did I tell you I got my own room? I'm like a rockstar or something..giggles
Xxxxxx
Kimberly
Agree with you Kimberley, quoting myself here: 😉 "I guess the medics would start again from the date of the relapse".
Kimberley you rock even if not a rockstar! 🎸🎹
Yay! Lol..I knew you would understand!
Nobodys making judgements here they are offering considered opinions through experience
I remember when I first saw my consultant, I found it very difficult to take in the information he gave me, and to remember exactly what he said. Luckily, my wife was there with me.
From the way she explains it, it doesn't seem that Susieanna was with her friend at the consultation and she may be relying on his interpretation of events, as we are relying on her interpretation of what he said.
Hi there. I'm a recovering alcoholic myself. I got my transplant last year.
Since then even before, people had little sympathy for me, and even got mad at the idea that I could get an organ, after destroying my own. They did not care that I had a serious disease and that no one ever asks to be an alcoholic, OR the fact I had a bit over 7 years when I got my new organ. Alas, there still is a terrible stigma attached to alcoholism and addiction. It's ridiculous, really, after all these years. Some doctors still don't get it, and patients die under there care.
That being said. Two years is a long time to be sober. Were they dry or actually sober? Sobriety is most commonly referred to when a person is in a twelve step program and actively working the steps. They also have weekly support from their meetings? To be sober and drink after two years can be off putting to doctors, because why does a person drink after going so long? Does it happen? Sure, all the time..but someone who already has liver disease should be taking double precautions against the next drink.
A girl I grew up, in the US..I found out she was sick, just like me..but she was at the end of her disease. She was only 41. She had been on the transplant list twice. And had relapsed. Twice. They refused to put her back on, and with good reason. She did not want to actually be sober, at least that is what her actions said. I spoke to her once on the phone. She was living in hospice. Her mom and dad went to see her everyday. She had HE so she was confused. She died three months later. It terrified me and my family.
I don't know about your person. You say drinking once in two years, but I'm guessing that's their concern. 2 years is a long time. Why drink again? You know?
I think it's six months sober before you can get back on the list, if at all.
Too many people who did nothing to deserve being sick are literally dying because they cannot get an organ. There is very little sympathy for those of us who did this to ourselves. Why should their be?
I still have guilt that I took someone else liver..someone who deserved it.
But that's my own personal journey. I'm working on it.
From what you said, your friend has not even been placed on the list.
And they check through blood work, which only shows a certain amount of days, for alcohol abuse, it sounds like your specialist was trying to scare him. If he's not yet de ompensated, he has time. But he needs to be sober, completely.
Cheering you on
Good luck
thanks dkimberley; i was there; dry; not on 12 step; there are other places of support; i think we are both in shock after what the specialist said; he is not yet at a stage where he needs a transplant as far as im aware as yet..... abstinence is essential of course....im hoping the liver is still compensated but i dont know as yet....i do understand what some of you say......but when you love someone you would do anything or try anything to help them.....im doing my best......of course its down to the individual....but all i ask is for one more chance.....as i too think 2 yrs is quite long to be off booze...yes, there is much stigma and it is a disease......it is part self induced.....but not fully in my view.....there is alot involved re addictions/ addictive behaviour etc; yes i know the NHS dont care about how much money people have paid in. I dont think he was trying to scare him; i think he was fully serious; which i find very unfair. There has not been a psychological assessment. Thanks pple.
Before I say anything else, let me say this..all of this may be because you saw a doctor who has no business being a doctor. Maybe that's why your so upset.
PleSe arrange to see someone else. Also, when the time comes, there will be a large team that decides,,not this one guy.
But they won't give a flip about the two years. When he drank, that was gone. They will go from the new sober date.
Many thanks; much appreciated dckimberly; will look into it. x
The MDT in each transplant centre don't list a patient on a whim based on personal opinion. They are following strict guidelines from the dept of health. The section on people with ALD is very rigid and unbending. The guidelines are freely available iin the public domain for anybody to see. As an aside, during all of my contact with NHS liver services and then the transplant centre, never once was I made to feel it was my own fault my liver had failed. Although I had to prove through therapy I would maintain an alcohol free life following transplant. Once listed I had a two week wait for my new liver. So that is clear evidence there is no discrimination regarding the cause of an individuals liver failure. Jim
I am new to this forum and may not be the best person to make an observation. My liver is diseased due to Sarcoidosis and I am at the beginning of this journey. Despite never being someone who did any type of drinking or drugs I remember thinking a few years ago that liver disease would not be something I will have to worry about. I guess life has a way of slapping you in the face even when you feel like you should be immune.
I fully understand your feelings of disappointment over the treatment you felt was directed at your loved one. Everybody is here for the same reason and that is liver disease. The only thing that can save your life is a liver transplant. The problem comes in when you have an alcoholic or drug addict that even after being diagnosed and warned that there liver will continue to fail that they keep doing drugs or drinking alcohol. So it makes others feel like they chose this where others like me wish there was something we could do to stop the destruction on our livers. So now they are placed on the transplant list maybe even before others who to no fault of there own need the transplant.
I am glad that your friend has you to stick up for him and keep everyone honest. In no way should you ever be made to feel like you are unworthy of medical care. I guess that right now at this time I can be unbiased towards a transplant. I truly see why others get very passionate about there viewpoint. There lives depend on it.
I would definitely read on you can on how to qualify to be on the transplant list. Sometimes a decision comes down to what you may think are crazy reasons. Once you study what the procedures are and know what they are looking for at each stage can you be prepared for success. So take this time and read everything you can get your hands on and when you see the transplant team again you will be fully prepared. Please take care of yourself so you can continue to encourage your loved one.
Many thanks for your response and advise.
Just as an example from here susieanna, there is a recent thread about a liver transplant undergone by a lady who, quote: "drank about a 1/4 bottle of vodka a day for about 18 months" - she has been at the top of the list long enough to have been offered not one, not two, but 3 livers before they found one that was adequate to be transplanted. Not discrimination, more care and consideration.
Unfortunately it has not yet worked well enough to say that the transplant has been successful, but at least the transplant team have given her the chance.
can you tell me where in the country this was? According to our specialist who works in one of the top liver transplant hospitals......the law is 'one more drink' and you will never be offered a transplant. Did this woman stop drinking completely after she had been drinking ? and seen her specialist? and have no relapses?
Hi sorry to sound nasty but my wife has just had a transplant and same as above she drank about a 1/4 bottle of vodka a day for about 18 months she had to have two livers as the first one failed she was alcohol dry for 2 1/2 years, it sounds harsh but the doctors here are not the problem your friend is the problem they knew they had to stay alcohol free to get a new liver, they decided whether they had a problem or not to drink no one made them it was there decision, so please do not blame the doctors, the first thing to do to try and fix this is for your friend to admit and except that they have caused this and they cannot drink again, and they and all of there friends need to find out why this blip happened and make sure it does not happen again.
As above why would they give a good liver to someone who is going to trash it when there are lots of people out there waiting on one who will treat it good.
I do not believe that your friend should be struck off but the bigger problem here as I see it is the blip came after 2 years if they had gone this long there would have been no alcohol dependence they decided they wanted a drink, I think it the blip had come sooner after a month or two it might have been more understandable, now the doctors might be thinking we have now got to leave this person waiting 3 years before a transplant as they had a blip after two.
But I do hope everything does work out well for both of you
When I was first diagnosed with liver disease, the specialist said if I didn't stop drinking I would die. Freaked me right out. I stopped drinking apart from a glass or two of red wine on a sunday. When I went back feeling very guilty about the wine, I saw a different specialist. I admitted that I'd drank wine once a week. He laughed and said 'We don't mind you having a couple of drinks a week'.
So that was that back to drinking every day. I did try not to but the little gremlin on my shoulder insisted that it was fine.
What sort of specialist would say that if you have liver disease? Are you still drinking then?
1yr 3 months Sober but still Scared
I've found out my itching and fat tummy are probably from my liver not being normal , thanks and hello
Some advice please
Update on hubby 31/7/2021
Putting your sleep worries to sleep! 🙌.
