Prejudice within this community

I know iits relevant to state the cause of the liver problem you may suffer from. But why is it always"relevant " to state what was NOT the cause. I'm talking about the number of times contributors who immediately say after describing the nature of their illness "But I don't / never did drink"

The implication being unlike those with alcohol related liver disease I / we are not responsible for our illness.

We already feel the burden of how alcohol ruined our lives and can do without the prejudice we feel coming from this community which we hope to be non-judgmental. Addiction to alcohol is a disease and don't forget the extra hurdles we have to overcome before we are even considered for a transplant.

Jim

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  • the reason I put mum has never been a drinker was because a some of the people who have liver desease through drinking may be able to help themselves by not drinking I know how hard it is for someone who is dependant on drink my husband is a recovering alchoholic it certainly wasn't meant as prejudice I was mearly trying to say there is nothing she can do to help herself with medication or anything else im assuming im one of the people you were on about if I am im sorry if I caused any offence none was intended and I wish you well for your future health

  • Thank you,

    my post certainly created a lot of interest. As I've said, it wasn't meant to be a criticism of yourself or anybody else.

    I've been very fortunate iin that after becoming iil in early 2015 I was able to stop drinking very easily and went on to have a transplant one year later. I'm now fit and healthy. I really do hope that your mum is doing well any gets the help and support she needs.

    Jim

  • Yes I would agree with you. However I think the reason people make the distinction is due to the prejudices of the wider society. I know on this forum nobody cares or judges how anyone got this terrible disease, but new posters may be unaware.

    Unfortunately in work etc if people ask about my transplant, or I decide to tell someone I do the same. It's not because of my prejudice it's because people will tend to always imagine that liver disease was caused by alcohol.

  • I am now saying my husband has liver disease as when I have said cirrohosis I feel that people are thinking oh ok so he caused this himself -hate the stigma of people thinking all liver problems are self inflicted by drinking

  • I am perhaps one of those who does point out that my husbands cirrhosis is not due to alcohol, but I can assure you this is not due to any prejudice towards those who do have alcohol related liver disease and I do try in all my posts to be supportive and non-judgmental no matter the reason for someone falling ill with this terrible illness.

    It is important to get the message out to the wider community that liver disease does not only come about due to alcohol/drug use or slightly dodgy lifestyle activiites because there is a widespread misbelief that it does. Partly due to the media, tv misrepresentation and even public health campaigns which generally only focus on this causal factor.

    Even within the medical profession we have met doctors and nurses who have come out with the phrases "Let this be a warning to you, you need to modify your lifestyle!", "Can you manage to stay off alcohol for 24 hours (instructions post endoscopy)" and even our GP "Are you managing to stay off booze?". To which our only reply can ever be that hubby is lifelong tee-total so alcohol has played absolutely no part in his ill health.

    I certainly mean no offence when I point out that hubby doesn't drink or hasn't ever drank and yet still has cirrhosis because there will be new members who come on here completely bewildered that they've got liver disease and they've never drunk and it's sadly because society has become somewhat brain washed that liver disease = alcohol and if you don't drink it comes as a huge shock to learn that you've got it.

    Anyway, in future I probably will continue to say that hubby doesn't/hasn't ever drunk. We say it in public too when we explain that hubby has liver disease and it's partly educational to try and sweep away this belief that only drinkers get liver disease.

    Katie

  • Well said usual Katie. You have always been very supportive to me & Terry. xx

  • Did you know, Jim, that Autoimmune hepatitis, Budd Chiari, Gilbert's Syndrome, Haemochromatosis, Hepatitis A, Hepatitis B, Hepatitis D, Hepatitis E, NAFLD, Cholestasis, Primary Biliary Cholangitis, Primary Sclerosing Cholangitis and Wilson's disease are all liver diseases that can potentially cause the same scarring and liver failure that alcohol and Hepatitis C do.

    No? Not many of 'Joe Public' and not many doctors, nurses, dentists etc do either. I leave out alcohol and Hepatitis C as most doctors, nurses, dentists and Joe Public DO assume that people with cirrhosis have one of these conditions.

    As Katie says, they are more high profile, more in the public eye, more common statistically, and due to the higher impact it has on the NHS budget (compared to the more rare conditions in the list) alcohol has been prioritised by the NHS in its 5-year plan.

    Maybe the rest of us are trying to get our voices heard by repeatedly mentioning what we have if we dont have ALD, so that more budget and more research into treatment and cures can come our way. We cant help ourselves get better by improving our lifestyle, as it's either genes or some as yet not understood trigger that caused us to get ill.

  • Hello,

    I can understand - especially here as people are very aware of what is causing the disease - you would be feeling this way... However, this made me feel like telling you all about a very awkward situation we have faced recently. My husband was told his prescriptions would be free for 1 year post transplant. We received a fine for over 3 grand as he apparently hasn't applied for the right thing... Well when we tried to apply and asked a call centre person to help us - she said that if his liver disease was caused by alcohol then he would have to foot the bill - if it was anything else then again apart from HCC - the lady didn't know of any other disease qualifying!

    The point I am trying to make is that people from all walks do assume that liver disease is alcohol related... I always think it's important to say what has caused it so that people can support/advise accordingly - not judge or criticise each other... Luckily for me this site has been a true lifeline - I have had many dark moments and again and again the good folk here have reached out and pulled me back into the light...

    Lots of love and hope you feel reassured by the replies here😊

    Pear

  • I find it incredible what you just said. In the disabilities act it clearly states that alcoholism is not a disease within the meaning of the act. HOWEVER end stage liver disease is REGARDLESS OF THE CAUSE.

  • I would definitely agree that there are some in the medical profession who automatically assume that liver/bile duct problems are due to alcohol abuse. They really should know better than to judge without proof.

    My husband was taken ill with liver problems in Dec and hospitalised over Christmas/New year 2014/15 - 21 months ago. I shall never forget the gastroenterologist he first saw who seemed only interested In how much he drank [1 glass wine at lunch and possibly another 2 with dinner in the evening] "So - half a bottle a day then?" as though that was the reason he was ill and the illness was self inflicted. "Serves you right" I felt was the unspoken message. That cow did admit him into hospital that same day and thankfully we never saw her again.

    It transpired after an MRI scan that there was a blockage in the common bile duct and after a failed ERCP the most probable cause of his faulty liver function was due to bile duct cancer [cholangiocarcinoma]. No biopsy or brushings were taken but that was the assumption. A stent to by pass the blockage was inserted which we were told would block up in a matter of months, there was no treatment other than palliative care and the outlook was bleak and the end likely to be swift.

    Here we are 21 months later, no treatment and no problems that can't be due to other factors - he is in his 80's - but the GP thought we should see what was going on so she sent him for a CT scan. That showed the stent exactly where it should be and no furring up and no cancer. A blood test did show fairly high non specific tumour markers though. That was the bad news and she said the only way to prove or otherwise whether the initial diagnosis was correct was to have another ERCP done. He refused and she agreed that was the best way.

    So much for that original gastroenterologist's presumption that the problem was all due to alcohol. He still enjoys his daily half bottle of wine!

  • Its horrid to hear you refer to the woman as a cow.

  • Hello,

    My husband would say that the worse culprits are the trainees or researchers - the first thing they ask is questioning your lifestyle and he says the prodding questions followed by prodding you all over your belly - just makes you feel a lot worse for wear.

    Back to the prescription dilemma: I asked - what if the liver cancer was caused by alcohol abuse? How would you know (to make that judgement) - she replied 'what? Can alcohol cause that?'

    Pear

  • Amen to that jim.it's true we don't need reminding or singled out or what's caused cirrhosis because were all in the same boat.and alcoholism is a disease .I myself have been drink free and it was the hardest thing I have ever been trough.unfortunately I gave up to late and ended up with cirrhosis .like jim said its a disease xXx

  • I agree, it is a challenge. My liver cancer was caused by genetic haemochromatosis but no doubt exacerbated by alcohol use over a number of years. At one point during one of my dry periods, I suffered a GI bleed and spent 5 days on a liver ward in the local hospital. Many of my fellow patients were alcohol (ab)users - the man in the next bed to me was drinking a litre of vodka a day brought in by his wife in a lemonade bottle. By the time my condition had stabilised, I was feeling much better and I asked one of the trainees if it was likely that I would be discharged that day as I had a lot of work to do - I am a freelance and only get paid if things are done. She told me that I only wanted to be discharged so I could drink. I was angry at the time and still am, to a certain extent. However, her reaction was naive but understandable in a way. She was surrounded by many people who had abused alcohol and her youth and inexperience must have led to her frustration.

    Yes, alcoholism is a disease and we have to feel sorry for people who suffer it. And yes, many people on this site suffer from liver disease not primarily caused by alcohol. It is understandable they they want to distance themselves from what seems to be a self-induced injury. The fact is that our society has a dysfunctional relationship with alcohol. We are told that we need to be careful of its use but it is everywhere in our culture. Watch any episode of a tv soap and every event (from major achievement to personal crisis) is rewarded/celebrated by a visit to the pub or an opening of a bottle; major sporting events are sponsored by brewers; our pension funds are dependent on high sales volume=share values; exports depend on it etc etc.

    No easy answers, I think, but an interesting discussion ...

    Mike

  • I remember a nurse on the acute medical ward accusing me of drinking alcohol after I collapsed trying to get to the bathroom. I felt angry as it was stopping me from getting the right treatment, if they hadn't of assumed that and knew I had HHT they'd have realised I was anemic and probably needed a blood transfusion.

  • Groups such as AA define alcoholism as a physical compulsion coupled with a mental obsession. Obsessive disorders encompass a wide range, think OCD, anorexia, mania.

    "Disorder" refers to an unwanted condition, "Disease" is more like cancer where you have clinically verifiable pathology.

    I would have thought alcoholism is an an example of a disorder because, for whatever reason, the patient doesn't have control and becomes addicted. It may cause the liver to become 'diseased' but the condition itself, IMHO, is a disorder.

  • Interesting thought, Bolly, but not sure it is helpful to downgrade it. I came across this, however, in response to your comment:

    The National Council on Alcoholism and Drug Dependence likens alcohol dependence – alcoholism – to a medical illness through the disease model. The disease model of alcoholism depends on it being a physical addiction that cannot be controlled, distinguishable by specific symptoms and requiring specialized medical treatment. Cycles of physical cravings and withdrawal symptoms, including shaking, sweating, nausea and dizziness, are part of the reason alcoholism has been classified as a physical disease. As alcoholism is an addiction, it is considered a disease of the brain. The brain has been physically altered by extended exposure to alcohol, causing it to function differently and therefore creating addictive behaviour. [http://www.dualdiagnosis.org/alcohol-addiction/disease-theory-alcoholism/]

    The articles goes on to say that seeing alcoholism as a disease makes it more susceptible to treatment options. I appreciate that it is not always a good idea to medicalise issues but I think there is some merit if it can lead to it being treated (in both senses of the word) more sympathetically.

    Mike

  • Interesting. Is there a perception that a disorder is the lesser of diseases and disorders? I didn't say that. I said they had different definitions.

    A disease is a pathological condition of a body part or an organ, resulting from various causes, such as infection or genetic defect. A pathologist can diagnose the disease based on the laboratory analysis of bodily fluids such as blood and urine, as well as tissues.

    Disorders tend to be mainly behavioural such as mental disorders, phobias, addictive behaviours, compulsive behaviours, anxiety conditions. I'm not sure, I may be wrong, that a pathologist could diagnose a disorder via laboratory analysis.

    Jim has summed up my thinking in his sentence "liver disease as a result of alcohol dependency". The addiction or dependency comes first (disorder?). If the liver becomes diseased, then it's a disease.

  • Bolly,

    When the Big Book was written, originally in the 1930's it was the miraculous intervention of Dr. Silkwood that allowed for the start or research into the disease. He, having assessed many of us saw everything that seems to go hand in hand with alcoholism. He would have called it a disorder then, since it had not been studied enough yet to call it a disease. Even today, people are misdiagnosed with various mental illnesses and emotional problems when what they have is just good old fashioned alcoholism.

    I myself am an example of that. I had been diagnosed with everything under the sun and had tried many medications. When I truly got sober, I was offered medication for depression and traumatic stress disorder. Instead I decided to try the newest thing..wait one year and then go and be re evaluated. Thank goodness I did. I worked on myself, did the steps. Made amends, had new and good solid relationships with family and new friends. When I went back to the doctors, everything else was gone. All that was left was the alcoholism, which was in remission. In MOST cases, they are discovering, this is the norm. Now some people DO suffer from serious issues outside of alcoholism, and AA encourages them to seek help outside of the rooms for that, while continuing to go to AA.

    Dr. Silkwood KNEW there was indeed a physical component. He saw it daily. He knew it was deadly, because when it comes to any type of chemical addiction, only alcohol and benzodiazepines can kill you, literally. You might want to die in withdrawal from other things, bot only those two can kill you. Interestingly, benzodiazepines are used to detox folks in alcohol withdrael, along with Librium. Bentos are referred to as dry alcohol.

    So, I hope all this makes sense, lol. At the time, what was written was what they knew.

    AA does not like to change anything in their ordinal texts. They will add various pamphlets, but the Big Book and the 12/12 are true to the original writing. What's interesting, even more, lol, such old fashioned books even today make complete sense, and they consider them to be the foundation of the writings. Bill Wilson was a great writer! Anyway,nit takes 2/3 of the body to chane anything. That's why it remains the same today! But in AA it is commonly known that we have a disease. The AMA in America in 1956 twenty years after the Big Book was written and went into publication. It is often compared to diabetes, and is progressive and fatal. Sorry for the long reply, but I hope it explains why alcoholism was called a disorder by Dr. Silkwood.

    Indeed there are many folks out there that say it's not a disease. Yet in the last 30 years I have lost count of how many people I know that have died from it, or become wet brains, never to function again. They are institutionalized for life.

    Xxxxx

    Kimberly

  • Well said Kimberly, just one small clarification that supports what you have written, Librium is the trade-name for chlordiazepoxide - A benzodiazepine!

  • Correct! I had forgotten about that!

    In my quest to not not convert, but explain, I'm afraid I may have missed a couple of things.

    Thanks for spotting that!

    Cheering you on a,

    Kimberly

  • I have Alcoholic Liver Disease. I know the reason why I have it and therefore I also know why doctors do have to ask what a lot of people consider to be 'prodding' questions. It's very difficult to get an honest answer from an alcoholic regarding their alcohol intake when they are under the influence. No one wants to be labelled an alcoholic, let alone be one. So many of us believe that it's just one drink in the afternoon and a couple at night so I can't be doing any kind of damage and I'm definately not an alcoholic. How dare you! I did.

    Well, it's tough to read but anything over 14 units per week is considered to be damaging to your Liver. Taking the example of 3 glasses of wine per day... That's 48 units per week and over three times the recommended weekly intake of alcohol. Coupled with the fact that the Liver doesn't get a break from the alcohol and so can't regenerate properly means that you are at high risk and possibly dependant on alcohol but don't realise.

    I've had to come to terms with a lot over the past few years. From the reasons why I started to drink to rebuilding everything I'd lost in the process, dealing with the fact that I'm Stage 4 and have a limited amount of time but more importantly accepting that I was dependent on alcohol, I did have people that cared for me and what others thought of my alcoholism didn't and doesn't matter in the slightest.

    To the uneducated it's an automatic assumption that liver disease equals alcoholic. Theres no point questioning the doctors bedside manner as they just need the right information to diagnose. They are human and may not get it right the first time. Also, if you are so bothered about not being branded an alcoholic then you may have your own stereotypical perceptions of an alcoholic and know what society thinks of them too.

    Either way, we are all affected by liver disease. We have to educate those with misconceptions ourselves. People assume a lot of things, as we all do, so perhaps learning to expect it and being prepared to educated them is all we can do. We all have prejudices too but the trick is to not let those prejudices show and to just keep them to ourselves.

  • I'm glad I raised this issue. In no way was it a criticism of those who qualify their liver disease with NOT caused by alcohol. As somebody commented, this is a knee jerk response within the wider community. As long as we all understand that it is not required in our inclusive BLT community then my raising the issue has worked.

  • This may help Pear:

    Equality Act 2010

    Guidance on matters to be taken into account in determining questions

    relating to the definition of disability

    A7. It is not necessary to consider how an impairment is caused, even

    if the cause is a consequence of a condition which is excluded. For

    example, liver disease as a result of alcohol dependency would count

    as an impairment, although an addiction to alcohol itself is expressly

    excluded from the scope of the definition of disability in the Act. What

    it is important to consider is the effect of an impairment, not its cause

    – provided that it is not an excluded condition. (See also paragraph

    A12 (exclusions from the definition).

    Exclusions from the definition

    A12. Certain conditions are not to be regarded as impairments for the

    purposes of the Act3. These are:

    • addiction to, or dependency on, alcohol, nicotine, or any other

    substance (other than in consequence of the substance being

    medically prescribed);

    • the condition known as seasonal allergic rhinitis (e.g. hayfever),

    except where it aggravates the effect of another condition;

    • tendency to set fires;

    • tendency to steal;

    • tendency to physical or sexual abuse of other persons;

    • exhibitionism;

    • voyeurism.

  • Dear Jim,

    Thank you for this very useful information - I am sure this will help many of us here... Unfortunately the form we had to fill in the other day doesn't have any tick boxes for liver or even any organ transplant! But the cause of it - it was a form we had to fill in the GP surgery - I think it's called a medical exemption certificate. So we had ticked the box for cancer as it was the diagnosis before transplant and the ultimate reason for it. The receptionist was saying how she's noticed many of these forms giving limited choices so therefore limiting the amount of people qualifying...

    I will keep this for reference though - as I think I will need it... We don't think they will be too keen to exempt him but more likely to fine...

    Thank you again,

    Pear

  • Not sure if this helpful to anyone.. But if you have an underactive thyroid you can get all your medication for free with an exemption certificate. That's how I get mine and my mum uses it to get her asthma medication. Xx

  • Dear Alicja,

    Thank you for this, we haven't heard back yet from the application for the certificate - we do have until the 2nd week of September to try and sort it out.

    Thank you again,

    Pear

  • Pear if you applied for a Medical Exemption Certificate on the grounds of his HCC I would be optimistic he will get it. If you remember from my history, I was diagnosed with HCC liver cancer nearly 6 years ago, and although i needed no prescription medicine for the cancer treatment, I was put on a lifelong anti viral treatment to control the HBV virus which causes the cancer. I got a Medical Exemption Certificate for that, and can therefore use it to get my AIH medication free also. The certificate expired after 4 years (i think) but was renewed, I assume on the grounds that to try to prevent a cancer recurrence I need the anti viral meds. I'm now considered cured of that original cancer, but my GP has never refused to apply for renewals of the Medical Exemption. Good luck, and I hope it comes through for your hubby.

  • Dear Bolly,

    The doctor said that the effects of the cancer and for it not to comeback is what qualifies you... So it is very similar to what you have applied - which is reassuring in itself...

    I will give the prescription people a ring tomorrow and see if any decision has been made.

    Pear

  • I always found that an oddity in the prescription system. I'd understand it a bit more if it were only thyroid treatment that was free, but as you say anyone with thyroid issues get all of their medication free regardless of what the treatments for.

    And why is thyroid singled out to be free?

  • It's daft as it seems like such a minor medical issue in the scheme of things. Not sure if it's true but I heard years ago the thyroid is linked to how all your organs work so if it's underactive everything slows down? However if I don't take my anti rejection meds or my mum doesn't take her asthma meds it can cause major problems, if I miss a dose of thyroxine my body wouldn't miss it much. I agree I probably should only be the thyroxine for free, the whole thing seems outdated and should probably be reviewed (so all long-term life saving meds are free) but that's the NHS for you. Xx

  • Hey, if it's free then great :)

  • maybe we should all live in Scotland and be grateful we don't live in the USA

  • one bonus of being over 60 - free prescriptions

  • Self inflicted Liver damage through Alcohol is always less thought of than someone with an auto immune issue, its true to say.

    As someone who kicked booze into the long grass myself (luckily before any damage occurred) I actually understand the view, I knew I was drinking too much, really I did. I didnt know about the serious organ damage it can do though.

    Personally, I dont think alcoholism is a disease, it just seems that some get addicted to it more than others. Its an addictive substance, a drug. Getting totally addicted is an unwanted side affect of the drug for some.

  • I am free of my addiction, it ruled my life. It bothers me not one bit that it was part of the reason I have end stage liver disease and cancer. I am free of it at last. That was then, this is now. The other part of my liver failure is Hep C related. I was quite young, it was 1970 in the united states and I was one of the victims of heroin use for 9 months of my life. I got off it and lead a normal life but I was addicted to booze. I consider none of it my fault nor anyone's. So anyone here is free to say whatever, thats their voice not mine. I just take whats helpful here and there is lots of kind help here, lots of experience. Plus its anonymous.

  • A very healthy attitude - did you see the article in the most recent Sunday Times ? He also wrote in the Guardian:

    theguardian.com/culture/201...

  • Hi, I have put up a post in the past about alcoholism being a illness and not a lifestyle choice, if anyone is interested in looking at the responses to that.

    When I had my first biopsy the HCA that was walking me down to the US unit asked me if my liver damage was due to " the drink", I looked at him horrified and told him it wasn't, but even if it was it was no business of his!! I later wrote to the hospital CEO, about several things including that, she said he had been moved to a different role??

    Anyway, my situation is unusual in that I have an autoimmune cause for liver disease and my sister died due to alcoholism. As such I am always pointing out that had my sister survived and needed a transplant I would have felt her need was as valid as mine. She didn't intentionally make herself ill , she didn't become dependant on alcohol out of choice.

    I don't think people on this forum show prejudice, but there is within the public, and as many have said we have to educate them. However I feel we should educate them that alcoholism is an illness as well and therefore they don't need to make a judgement. So many people regularly drink over the recommended limits, they are just lucky if they don't get ill.

    Regardless of the cause we are all suffering with similar problems, that is why this forum works, we can often empathise with each other without judgement.

    Best wishes to all

    E

  • Hello,

    I think that many have already pointed out that alcoholism is an illness - but when does an individual acknowledge it is? When you are sick/ill from it?

    A few years ago there was a local project set up to do tests on young people to see how their liver is working - as a high number were drinking far too much - these were secondary school kids - they had shown the results to them and immediately it changed the drinking culture in that community... Famously funding was cut and so was the project...

    We are a special bunch on here - full of empathy and sharing stories of hope and solace...

    Lots of love to you all,

    Pear

  • Good post! Lots of replays and thoughts!

    I've been told that most transplants that occur every year are from alcohol being involved. That might be why so much money is put towards research.

    BUT, I do agree that more monies should be going towards other illnesses that hurt the liver.

    I struggle with shame and guilt over getting a new liver. Now I've been told this new one will not be up to the task, and will need another one, if that is an option for me. So my guilt is doubled. If that makes any sense.

    I was in the hospital the second time, after Christmas this year on the transplant ward. I made friends with the woman across from me. She and her husband were friendly and he was very outspoken. Talked a lot about politics, immigration, etc. she was recovering from a liver transplant. One evening he went on a rampage about how alcoholics did not deserve a new liver. Because they did that to themselves. Of course, he had no idea about me. It had never occurred to them to ask why I had had a transplant.

    I quietly told them I was a recovering alcoholic. And I said I understood their feelings. I burst into tears and said how bad I felt, here I had ruined my life and someone had given theirs so I could have another chance..and to add jam to the butter, I was also an American who was getting a British liver. I had been to sick to fly home. I still am not allowed to fly. Because of the ascites and portal hypertension. They were just sitting there looking at me..trying to think of something to say. But I said, no worries. Your allowed to have your feelings, and trust me, you could not possibly compare your anger to my guilt.

    What really bugs me is people who get new livers and then drink again. On another post someone said that her husband was still drinking half a bottle of wine a day, while he's sick. Like she was proud of it. I don't understand that. Alcohol, weather your a drunk or not is soooooo bad for the liver.

    I'm so grateful no one has been unkind to me about my drinking and my liver. On this forum I mean. But your feelings certainly make sense.

    But this is where my sponsor came in and said, Stop Kimberly, right now. You never asked to be an alcoholic. You have a disease. Your father was an addict, so it's most likely in your genetic make up. You quit three years before you got sick. That means you weren't forced to quit to get a liver. As far as you knew, you were well (not that she was criticizing those who go to the doctor, are forced to quit right then and get on a transplant list..that may be your bottom)

    I do try to remember that little lecture I got from her. Because there were days I did not want to get my transplant. I wanted to kill myself instead, or just wait it out. Why? Because I did not think I deserved a new liver.

    I'm so grateful for my new liver. Even if it won't work out.

    And yes, maybe people should not have to say that they weren't drinkers. But everyone has a right to introduce themselves however they like.

    Actually, I sometimes just assume folks are drunks when they are not, because I think , think, my transplant coordinator said 80% of transplants are for primarily alcoholism? Some one correct my if I'm wrong please!

    But the number is very high. I need to do better with that. And learn more about the other types of liver disease! Some of you have issues I don't understand at all, but I feel just horrible when you mention how bad some of the symptoms are!

    Sorry for long reply. Just my 2 cents. Or pence! Lol

    Hugs to all and cheering ALL of you on!

    xxxxxxxxxxx

    Kimberly

    .

  • The guy in the ward sounds like my Dad! He's quick to make opinionated claims but if challenged and made to think about these, he'd not put up much of an argument. He's a great person, and on a personal level would do anything for anyone. But quick to form an opinion of a person, or group of people he's never met. there's plenty of people like this, I mean there's a whole newspaper dedicated to these people (The Mail ;) )

  • lol! Right!

    This guy is the same..a heart as big as the ocean..but so angry.

    sighs..

    :)

    XXX

  • Dear Kimberley,

    We met a fellow patient - last year - on the wars who had his transplant in 2013. He was absolutely vile! He was constantly swearing at the nurses and demanded endlessly that he should be allowed to have a drink. He often swore at fellow patients on the bay. This triggered many visitors and staff to say how they felt about 'organs being wasted on the likes of this man'.

    My husband feels overwhelmed by his transplants plus all subsequent ops that followed - physical, mental and emotional - all is tested to the max.

    He has changed his attitude to life and prays everyday for his donors and feels ashamed when we talk about it.

    No one has ever judged or made me feel ashamed of what has happened.

    The hospital liver team and HPB surgeons team have been hugely supportive - the nurses know my husband's history and treat him as an individual - a person. The world out there is full of judgmental attitudes...

    I thank God everyday for this site... And pray for all here 😊

    Pear

  • Lol - wards not wars!

    Felt like a war though!

    Pear

  • Hugs you Pear!

    And like you, everyone here and in hospitals have made me feel just fine..it was only this one patient and her husband. But, I survived it! lol!

    I still speak to them!

    XXXX

  • It would be interesting if there are any statistics on alcohol related liver disease transplanted people who return to drinking.

  • agreed! When Im in hospital next week, Ill ask some of my consultants and my drain specialists!

    XXX

  • Further food for thought.

    theguardian.com/culture/201...

  • interesting..but, he wanders too much, like he's unsure of his own ideas. Which of course he is. There are more than several books out and new therepys out there that ex addicts and alcoholics come up with once clean. I personally believe it's them working through their own process.

    But for me, I think the biggest issue I had with the article was his response about how having a disease does disservice to the one with it. Personally, I thought there was something terribly wrong with me. That I was less than. That I would NEVER fit into society. It was my personal belief that when other people were born, they were given a handbook on life..on how to be a human, if you will. Somehow I got skipped..no handbook for me! :)

    Once I fully understood that I had a disease. One I did not ask for, and became well educated about my illness is when I became empowered. It's when I finally was able to quit. He is saying this does not happen. It instead makes us patients. Everyone I know today who is sober for numerous years feels the same way I do. That it being a disease helped cleared all the fog of guilt and shame. It also allowed me to CHANGE my behavior. Because, as I have said before, The Big Book says the same man will drink again..or if nothing changes, nothing changes. So one MUST change in order to stay sober. I also made amends with everyone I needed too. Again, because I truly wanted to stay sober.

    Sadly, it's not for those who need it..sobriety is for those who want it.

    But, if everyone tells you it's some disorder, or your just not right in the head..that you have no willpower..why even TRY to get well? If you know it's a disease..then you know you can get help for it. Medically. That it's NOTHING to do with willpower. Our brains are different. period.

    Or course t relates to behavior, and changing it. we understand that. But once the brain's pathology changes, and it does, the cravings are so strong it literally feels like you will die with out your drug of choice. And in some cases, you do. (How is THAT not a disease, or a physical problem?)

    Finally, my children's godfather, and one of my oldest and dearest friends is a child psychologist. He is a professor at a top university in the US. He has worked with many many addicts. He would disagree with this one hundred percent.

    As I do.

    I know you did not post that to say anything bad, and I know we are in an open forum here. But, many people are struggling with this disease. I'd hate for anyone them to get the wrong idea from 1 or even 5 people who wrote books or developed some new thing.

    It's like those Chinese Herbs, or St. Johns Wort, or holistic medications, etc.

    Both the UK & the USA, along with many other nations have studied this for decades. They, along with all the doctors and researchers around the world believe we have a disease.

    In my own personal opinion, so do I. Again, I'm no doctor..lol. But I am someone who has this disease. And I am blessed to be in remission for nearly 8 years.

    Cheering you on! As Ever!

    XXXXX

    kimberly

    (aka the girl who does NOT have all the answers..not even many of them! )

  • Hello Hun,

    There used to be a local girl who was addicted to drugs and everytime she would see me struggling with my kiddies and shopping etc she would come and give me a hand - she didn't want anything - but always helped me - even though sometimes her habit was clearly getting to her.

    My mum always said that its your heart and morals is what makes you - I know someone else who has been addicted for many years and they are a whole lot more selfish and self centred - the 'it's everybody else's fault' syndrome.

    The point I'm trying to make is that you have not allowed this disease to take you - and are a standing example of what we can achieve. Your feelings are all part of your makeup and it's what makes us all so fond of you... Your spirit is hard to ignore and your constant sharing and caring is an example to us all - even faced with the prognosis of having another transplant - you still find the time to reach out and touch others - giving them nothing but hope.

    I pray that the stent works Kimberley and they find you your next transplant donor liver soon Xxx

    Pear

  • Thanks bunny!

    I hope it does also!

    And yes, actually selfcenterdness tends to be key with us! I mean, we're not all bad, lol, but we are selfish, for sure.

    And the whole blaming everyone and everything for our problems is normal also. We can't seem to be responsible or take responsibility for our actions. I can also tell if someone is drinking, or on their way to their next one. The blame game starts again or continues, and we also get extremely resentful. In the twelve steps that say that resentments are the number one offender for relapse!

    Thank you for always saying such kinds things!

    But I gotta tell you, if it was not for AA I would not be like this. I did a lot of work to become the person I am today, and I'm still working on me, everyday! I'm not where I want to be today, but I'm a whole lot better than yesterday! ;)

    I'll let you know how it went as soon as I'm able. But they did say it will take a few weeks at least to see if it's going to clear the ascites. I sure hope so. My feet are so cracked and chapped from swelling today..I actually am, having to remove a toe ring I have worn for over twenty years. I never even had to remove it before when I was so full of fluid. Ugh! Lol

    That's ok, I'll survive! Just wanted to pout!

    Poor pitiful meeeeeeee!

    Hugs and love!

    xxxx

    Kimberly

  • I totally agree.I have no problem admitting that i was a heavy duty drinker and that is how i got my disease because ibelieve that the more I share my story,the more it will scare people who have a really bad drinking habit into not drinking at all.I am very lucky that I got another chance at life and that I was able to stop drinking with no AA and no withdrawels(well being at deaths door kinda took care of that.)for now nine years and I don't miss that poison.

  • And just think, Virginia! Your story can help other people!

    How great is that!

    Oxoxox

  • That's my mission in life helping others

  • I only attended an alcohol services centre because it was a condition set by my transplant centre. No attendance - no transplant. Couldn't say no could I ?

    All I had to do was attend and provide evidence of cooperation and that was enough to satisfy the condition.

    Five months post transplant and I still attend. One of many reasons was to be an example for those still drinking of where they might end up or worse if they continued to drink. ( thats when I got to show my scar ! - what's the point if you don't get to show it now and then ?)

    Wish I had five years ago and all the trauma of HE and everything else that goes with liver failure followed by the not very easy route of a transplant, could have been avoided.

    Pass me the hindsight pills !

    Jim

  • I think we are talking about the stigmas of modern societies. If your over weight and in hospital its because you ate too much, liver trouble because you drank too much, etc etc.

    There are always going to be these views unfortunately in my opinion, because until you have been on the sharp end of a medical condition you will truly never understand.

    The way I see it on forums etc, is that everyone is under immense mental and physical pressure, and from time to time this will overspill, at which point we should all be here to provide support and share our experiences, that is the point isn't it?

  • That's an interesting point. I thinks it's the modern world. Although civilisation has leapt forward in the last 2000 years from hunter gatherer communities into modern society and all that that brings with it. Food, alcohol, drugs, jobs, mortgages are things we are not designed to deal with.

    As a species we've been around for 200,000 years and in the last 100 years we've seen more change to how we live than the rest of it added up. I genuinely believe that we're all holding it together on a knife edge, I don't think we've evolved to cope with our new way of living, and that's why particularly in the western world there's so much depression and anxiety.

    I for one know I can't deal with food. I'll eat whatever you put in front of me. But that's 200,000 years of evolution because food has been scarce for all but a fraction of that time. We have a sweet tooth because sugar is energy as is fat. All very good for you in small amounts as it would be if you were out hunter gathering, and if you weren't sat at a desk all day.

    When we can't cope there's drink and drugs (both legal and illegal) .

  • I have found that I only worry about the important things now days, the recognition of mortality focuses the mind some what!

  • I find it really stressful and upsetting when people assume because I have a liver disease (AIH) I am a drinker. It is up to me if I say what did or didn't cause this your comments are not helpful in a forum where we should all support each other regardless of the cause.

  • Amen 👍🏽👍🏽

  • I did the course on future learn about liver everyone needs to educate themselves . Many causes. This forum I feel is prejudice free.