This workbook has been produced by the Substance Misuse Specialists in Liver Transplant (SMSLT), a group of Clinical Nurse Specialists representing liver transplant units across the UK.

• Charlie Parker, Addiction Psychiatry Clinical Nurse Specialist, Queen Elizabeth Hospital Birmingham and Birmingham and Solihull Mental Health Foundation Trust
• Kathryn Rothwell, Substance Misuse Clinical Nurse Specialist, St James’s University Hospital, Leeds
• Liz Shepherd, Lead Specialist Substance Misuse Nurse and SMSLT Chair, Royal Free Hospital, London
• Kerry Webb, Nurse Consultant, Birmingham and Solihull Mental Health Foundation Trust, Queen Elizabeth Hospital Birmingham
• Ian Webzell, Alcohol and Substance Misuse Clinical Nurse Specialist, King’s College Hospital, London
• Andy Mowatt, Substance Misuse Clinical Nurse Specialist, Royal Free Hospital, London
• Jon McGowan, Substance Misuse Clinical Nurse Specialist, St James’ Hospital, Leeds
• Ed Day, Clinical Reader in Addiction Psychiatry, Institute of Mental Health, University of Birmingham

Section One

What is alcohol-related liver damage, and what are the risks for developing it?

Alcohol is the most common cause of liver damage in the developed world. It is toxic to liver cells, and drinking more than the recommended guidelines can lead to a number of liver problems.

The more alcohol you drink, and the longer the time you have drunk alcohol for, the more the risk of liver disease increases. Alcohol is directly responsible for about 5000 death per year in the UK, and is implicated in a further 40,000.

What are the recommended guidelines for alcohol consumption for the general population

UK Chief Medical Officer’s Low Risk Drinking Guidelines 2016

The Chief Medical Officer’s guideline for both men and women is that:

• To keep health risks from alcohol to a low level, it is safest not to drink more than 14 units a week on a regular basis.
• If you regularly drink as much as 14 units per week, it is best to spread your drinking evenly over three or more days. If you have one or two heavy drinking episodes a week, you increase your risks of death from long term illness and from accidents and injuries.
• The risk of developing a range of health problems (including cancers of the mouth, throat and breast), increases the more you drink on a regular basis.
• If you wish to cut down the amount you drink, a good way to help achieve this is to have several drink-free days each week.

Current UK guidelines state that you are at increasing risk of developing problems with your health if you regularly drink more than 14 units of alcohol per week. They also advise that if you drink as much as 14 units, it should be spread across the week rather than being consumed all at once. Drinking at above these levels puts you at increasing risk of a range of health conditions, including liver disease and several types of cancer.

These guidelines assume that you are healthy and do not have any pre-existing liver conditions.

Pattern of drinking

There is a lot of evidence to indicate that the risk of developing ArLD is increased in people who drink every day rather than on just one or two days a week, and in people who drink away from mealtimes rather than with food.

There is, however, also emerging evidence that ‘binge drinking’, drinking more than six units on any occasion, also puts you at increased risk of developing problems with your liver.

How does alcohol affect other liver diseases?

Those who have been diagnosed with liver diseases with causes other than alcohol should exercise caution in their use of alcohol, and should not exceed the guidelines. Advice should be sought from your GP or your liver team. People with cirrhosis, whatever the cause, should aim to be completely abstinent. People who have hepatitis C are also advised to avoid all alcohol as there is considerable evidence that drinking can accelerate the disease process, as well as potentially making treatment less effective.

How does body weight affect the development of
alcohol-related liver damage?

There is evidence that having an elevated body mass index (the body mass index (BMI) is a measure that uses your height and weight to calculate if your weight is healthy), significantly increases the risk of developing problems with your liver if you drink at above recommended levels. This may be because being overweight increases the likelihood that you will already have fat in your liver, which can then lead to more rapid development of more advanced liver disease.

Nutrition

People who drink heavily often have a poor dietary intake. Alcohol contains a lot of calories, but none of the essential elements of a healthy diet, so you may feel full despite being malnourished. Alcohol can also reduce the body’s ability to absorb essential vitamins from food. All of this means that heavy drinkers are at high risk of nutritional deficiencies. We know that people who have liver disease who are malnourished do less well than those who have adequate nutrition. It is therefore particularly important that you have a good and varied diet. You may be prescribed B vitamins such as thiamine, as it is very likely that you will be deficient in these, and you may be referred to a dietician.

What will be expected of me if I am to be considered for a transplant?

You will not be considered for a liver transplant unless your medical team are sure that you are no longer drinking any alcohol. This is referred to as being abstinent.

There are several reasons for this:

• To make sure that your damaged liver has time to heal itself in the absence of alcohol, and perhaps avoid the need for a transplant.
• To make sure that you are prepared for life after transplant, when you will need to remain abstinent from alcohol to avoid damaging your transplanted liver and putting yourself at increased risk of developing an alcohol-related cancer when you are immunosuppressed.
• To show the team caring for you that you are able to adhere to medical advice and treatment. This will be important after your transplant when you will need to closely follow medical advice and will need to take complex medication regimes.

During the time you are waiting for your transplant, you may be randomly tested for the presence of alcohol, by blood, urine or breath tests. This is to ensure that you have not returned to drinking. The team will provide you with details about how this operates at your particular centre.

Pubs

Pubs are primarily places where people meet socially and drink alcohol. A pub environment can raise lots of unconscious cues which may potentially lead to the
re-surfacing of cravings for alcohol. There may also be a risk of accidentally consuming alcohol, or of having alcohol put into your drink without your knowledge. This is why we strongly encourage you to look for other ways to pass your time and to find places to socialise where alcohol is not the main focus. If you are finding this difficult, please speak to the alcohol team who will be able to arrange for you to have some additional support to develop new interests and meet new people.

What about shandy or low/no alcohol beers and wines?

You will be informed during your assessment period that you should not drink low alcohol or ‘alcohol free’ wines and beers either before or after your transplant. They are usually made by brewing in the same way as normal beers and wines, and the alcohol is then removed. This means that there is likely to be a trace of alcohol still present. Some of the methods used to test for alcohol are very sensitive, and can detect very low levels, which could result in removal from the list.

It is also possible that drinking ‘alcohol free’ beers and wines can make it more likely that you will return to drinking normal strength products in the future. This is because, if you continue to choose a drink because it looks or tastes like an alcoholic drink, you are not giving yourself a chance to completely break the link with drinking alcohol. It may also make it much more likely that you find yourself accidentally drinking alcohol, as other people may mistakenly buy you a ‘full strength’ product, or you may risk picking up the wrong drink.

What about alcohol in food?

It is important that you avoid alcohol in all forms, including food. This covers foods such as sherry trifles, chocolate liqueurs and Christmas cakes, which contain raw alcohol, and also foods which are cooked with alcohol, such as steak and ale pie or chicken in wine sauce. It is your responsibility to read the labels of any pre-prepared meals you buy to ensure that there is no alcohol in the ingredients, as the product name may not make it clear that it contains alcohol. Alcohol may sometimes also be labelled as ‘ethanol’. If you eat in restaurants, or at someone’s house, be prepared to confirm that an item has not been cooked with alcohol before you eat it. This is because, although some alcohol may be evaporated during the cooking process, there may well be traces left.

Medications and pharmacy products

It is also important that you check with a doctor or pharmacist before using any ‘over the counter’ products such as cough mixtures and cold and flu remedies, as some of these products can contain a considerable amount of alcohol. You should ensure that you use an ‘alcohol free’ mouthwash, as normal mouthwashes can contain very high levels of alcohol, and it is easily absorbed via tiny blood vessels just under the surface in your mouth, even though it is not swallowed.

Why is it so important to avoid even tiny amounts of alcohol?

Due to the fragile state of your liver, even a very small amount of alcohol can potentially cause serious complications. This could include having a variceal bleed (bleeding from the veins in your gut), or an episode of decompensation, when you may need to be admitted to hospital.

If you have even one drink, you may find that it knocks your confidence in your ability to remain abstinent from alcohol. At a time when you may be feel uncertain about the future, it is best to try and keep control of the elements of your life that you can manage yourself.

It is possible that having even one drink may trigger very strong cravings for alcohol, or lead you to return to drinking alcohol in the way that originally led to your liver being irreparably damaged.

Perhaps most importantly, if you drink alcohol whilst you are being assessed by the liver transplant team, they are very likely to decide not to continue with the assessment. If you are found to have been drinking any alcohol at all whilst you are listed for a liver transplant, you will be removed from the waiting list. Remember, some of the tests are extremely sensitive, and may pick up very small amounts several days later.

Donated livers are in very short supply, and the transplant team need to be sure that those who receive them are fully committed to adhering to the advice they have been given so that they have the best chance of a good outcome. Drinking when you have been clearly advised not to will mean that the team cannot be sure of this.

All of the above advice is part of a set of nationally agreed guidelines that have been agreed to ensure that all patients who are being considered for liver transplantation with ArLD are treated equitably throughout the UK.

I am very confident that I will never drink again, so I don’t feel I need any support from the alcohol team

At the moment, you may not feel like drinking alcohol. This may be partly because you are very aware that you need to be abstinent from alcohol to qualify for a life-saving transplant. It is also relatively easy not drink when you are feeling unwell as a result of your liver disease. You may not fully realise just how unwell you are at the moment until you look back after your transplant. This is because the symptoms of liver disease, such as lethargy and poor concentration can develop gradually. It is not unusual for people to find that after transplant, when their lives start to return to normal, they start to think about having a drink. This is why the specialist alcohol team will continue to maintain contact with you after you have your transplant, even if you feel at the moment that there is little risk of you drinking.

What are the outcomes for people with ArLD who undergo transplantation?

This section provides information on the aspects of liver transplantation which relate specifically to ArLD.

Your transplant co-ordinators will be able to provide you with more general information about the overall risks and benefits of liver transplant.

Most people who are listed for a liver transplant will have advanced liver disease, and will be at high risk of dying from the complications of their illness if they do not receive a transplant. In the UK in 2017, 6414 people were listed for organ transplants, and 457 (7.1%) died before a suitable organ was found for them.

Recent research indicates that people with ArLD have similar mortality rates to people with other types of liver disease, both on the waiting list and after transplantation.

Outcomes for people with ArLD are similar to other indications in terms of life expectancy and quality of life. The majority of liver transplant recipients are able to return to active and productive lives after their surgery. People with ArLD actually have fewer complications overall after surgery, and a lower level of disease recurrence than those transplanted for other reasons. In American studies, liver graft failures within one year of transplant caused by rejection occurred less often in recipients with ArLD than with other liver diseases.

Overall, when factors such as graft survival, rejection and infection are considered, ArLD is a very good indication for liver transplantation. Remaining abstinent from alcohol is the cornerstone of therapy for people transplanted for ArLD.

You may feel that you could return to having just the occasional drink, but if you have drunk in the past at levels that have caused irreparable liver damage, there is a high risk that you may reach these levels again, thus compromising the gift of life that you have been given. There is also growing evidence that returning to drinking after a transplant significantly increases your risk of developing cancers, particularly of the head and neck.

This is because you will be immunosuppressed to stop your body rejecting your new liver, and alcohol is a carcinogenic (cancer causing) substance.

For these reasons, all people transplanted for ArLD are explicitly advised never to drink any alcohol again, and may be asked to sign a written agreement to this effect.

If you have been transplanted as a result of ArLD, and you return to drinking alcohol at any level after your transplant, you are very unlikely to be considered for a second transplant, even if the reason you need one is not related to alcohol. This is because if you have broken the treatment agreement that you made before your first transplant, your team cannot be confident that you will not do so again.

Complications

The side effects and complications that may occur as a consequence of liver transplantation are broadly similar regardless of the reasons for transplant. They are outlined in the pre-transplant handbook, and your transplant co-ordinators will make sure that you are aware of them before you give your consent for the surgery.

There is an increased risk of acute confusional states after surgery in people who are transplanted for alcohol related liver disease. This is usually temporary, but may last a few days or weeks. It can be difficult for family and friends to deal with if they have not been made aware that it is a possibility, so it is important that they know in advance that it may happen, so that they are prepared.

Personal stories

Patient 1

I have always been a heavy drinker, but three or four years ago, I started drinking secretly and slowly slipped into the world of an alcoholic. Nobody knew, and I was doing no harm…actually, people did know, and I was unconsciously killing my liver. I had chronic liver failure before I admitted I was an alcoholic. I came out of The Priory in September having not had a drink for five weeks. Early signs of liver failure were evident particularly with ascites and massive weight loss. Most of December was spent at Kings College Hospital undergoing extensive tests to see if there would be any signs of recovery. In fact, the opposite was happening. By February I was having 15-20 litres of fluid regularly drained from my abdomen. I had lost 2 stones, was hardly eating, passing out, throwing up black blood, incontinent, too weak to walk, sit or lie down without help. Basically, nothing worked. The effect this had on my family was devastating. My daughter was 10, my son was 12, and my husband worked long hours and travelled every week. I needed to be dry for six months before I would be considered for a transplant and another six months of tests. I could not have a drink if I wanted to survive and I would die without a transplant.

I had a transplant in May and my recovery has been long and slow, but my life has improved beyond belief. I could say it was nearly normal. Simple things give me enormous pleasure. I can say that I look and feel great and my family have a mother and wife back…everything is working again. Of course I miss a drink, but it will never be ‘a drink’, and I know what terrible damage it has done to me. My family and friends have stuck by me and I cannot let them down. I am getting more involved with AA, and the more I learn, the more I understand what happened.

Patient 2

The Turning Point award winner is Mr P.T, sponsored by A4E. This prize recognises someone who has overcome major obstacles in his life to carry out volunteer work.Three years ago, 53 year old Mr P from Southway was alcohol dependant and so sick he was barely able to walk and in need of constant support. Today he helps run a food bank for the Oasis Project in Stonehouse and devotes much of his time to organising others to run this important service.

‘I lost all of my dignity and couldn’t even feed or dress myself. I owe everything to my wife who stuck by me through thick and thin to get where I am tonight. I’m really pleased and very surprised to win this’, P said. P was fortunate enough to have a liver transplant last March, allowing him to turn his life around, and it was at this point that he started running Oasis.

‘The people I want to thank most are my consultants and those who I’ll never know – the family of the donor. Their generosity meant I would live. It was then that I started to volunteer at the centre. I was very nervous at first, but everyone there has been wonderful to me. I want to thank them all; they’ve built me up again and changed my life.’ The judges said that they felt that P. is a truly inspiring volunteer who managed to bring himself back from the brink to help others in crisis.

Extract from the Plymouth Herald

Patient 3

I was a bit shocked when I was told that I had alcohol-related liver disease. Although I had drunk alcohol on most days since I was about eighteen, I had never thought of myself as an alcoholic, and had usually drunk less than most people I knew. I have always worked and had never thought that drinking was a problem. I just went to the pub after work to unwind a bit before I went home. I have never been caught drink driving, and my family had never seen me drunk, so they were as surprised as I was. I didn’t even drink every day, and I never had the ‘shakes’ or anything like that.

I was first told that I had liver disease in September, when I had gone to my GP with what I later found out was ascites. He had sent me for further tests, and the consultant told me that I should never drink alcohol again if I wanted to live. I knew then that this was serious, and I decided to stop then. It was difficult at first, especially socially, and I felt embarrassed about saying that I didn’t drink, but I’ve got used to it now, and I avoid anyone who tries to push me into drinking. I know that people like that aren’t really my friends, and I don’t need them around. All of my family and my real friends have been totally supportive. My wife has even stopped drinking as well to support me. I haven’t felt that I needed to go to see a counsellor or to go to AA, but I have their numbers in my phone if I feel that I am struggling.

My consultant had told me originally that he hoped that if I stopped drinking, my liver might recover. I was abstinent for nearly two years, but unfortunately, my liver did not recover enough, and so I had a liver transplant in November. I am so grateful for the chance that I have been given, and I know how important it is now for me to never drink alcohol again.

Patient 4

Whilst living away from the Welsh village following my head to the bright lights and what was deemed to be following dreams working for a world leading media broadcaster, I had managed to convince myself and those around me (friends, family, colleagues) that I was the happy-go-lucky Welsh lad with the world at my feet.
From a social drinker, I became hooked on alcohol beyond my greatest fears – from self-medicating to avoid unhappy relationships and suppressed feelings of home sickness, I sadly hit rock bottom. Before I knew it I was on at least 2 litres of spirits a day plus going to any means to get more when needed.

Drinking for breakfast, lunch, dinner, bedtime and anytime in between, passing out by canals, under bridges, in high streets, everywhere. Hand-in-hand with this became isolation, hospitalisation, close suicide attempts before the inevitable occurred – I was gently released from my media career and found myself broken in the back of a family car, head on pillow, heading back to the Welsh Valleys.

But the heartache didn’t end there – I was sectioned on several occasions, underwent failed detox programmes, ended up virtually homeless and ignored medical advice to reach the frightening heights of advanced liver disease, cirrhosis and ascites. Lifesaving hospital visits, intensive care, resuscitation and months spent on specialist wards ensued. Family stood by as they were advised by medical professionals to ‘expect the worse’. The outlook was now beyond grim.

Challenged in every way – personally, physically, mentally, medically and emotionally, I somehow found the strength to fight this cruel disease. In the face of adversity, “as if by magic”, I made the wrench from near death and embarked on the road to recovery!
Thanks to my willingness to work hard, careful medical plans were put in place and followed and along with dietary advice physical and mental rehabilitation came about; the most unlikely of survivors was back on board. I was referred by my local medical team to the specialist liver team in Birmingham where I now regularly attend clinics with a view to a liver transplant when the knock-on medical complications are overcome.
I still describe myself as a shadow of my former self, often receiving gruelling procedures to keep symptoms of the disease at bay. However, now a year sober, I have clearance and clarity once more.

Thankfully wallowing is no longer an option. Using my motto “Turning Guilt Into Gratitude” which continues to help me focus less on the negatives and more on a future, I remain keen to express my thanks to the medical professionals, those family members and loyal friends old and new who have shown belief, support and pride in my uphill journey towards recovery but I preserve my biggest proportion of gratitude for a potential donor and their family.

Attending meetings, keeping a regular blog, involving myself in self-help courses in meditation, mindfulness and well-being, as well as re-engaging with my community, I see this very much as a second chance and urge others to find their own motto to help on their own journeys. The future is now very much key with career plans and fundraising/awareness projects on the cards.

What do I need to do from here?

1. Asking questions and educating yourself about your illness
   It is important that you feel able to ask questions and find out more about anything that may be worrying you about your illness. It is a good idea to keep a small notebook and jot down any questions when they occur to you so that you will be well prepared when you attend your appointments. Sometimes there is so much going on and so many tests to undergo that it is easy to forget what you wanted to ask until you are on your way home. You will be provided with a lot of written information and it is important that you keep all of this safely together in one place as you may need to refer to it in the future. You may also want to do some more research and find out more about what your liver does and how it is affected by alcohol and your team will be able to give you advice on sources of further information.
2. Maintaining your health
   It is important that you look after yourself as well as possible while you are waiting for your transplant. You will need to stay in close contact with your transplant centre and to heed any advice they give you in order to stay as well as possible. You may need to see other professionals such as dieticians or occupational therapists, and you will be regularly medically reviewed to monitor your condition.
3. Maintaining abstinence from alcohol
   It is vital that you continue to be abstinent from alcohol, and the specialist alcohol nurse will maintain regular contact with you while you are waiting for your transplant and afterwards, to support you in achieving this. You may manage to do this without difficulty, but if you do experience cravings or thoughts about alcohol, it is not an admission of failure to let someone know that you are struggling. It is important that you feel able to seek help at an early stage rather than trying to hide how you feel until it is too late.
4. Smoking
   If you are a smoker, you may be required to stop smoking before you are listed for transplant. Even if you have not been required to do so, you should very seriously consider stopping, as it can make a real difference to the anaesthetic risks of the surgery, the speed of the healing process and reduce the risk of smoking related cancers post-transplant. It may be a good time to stop while you are waiting for your transplant, and it is something that you can do for yourself to take control over an aspect of your own health. Your hospital team will be able to provide you with details of a wide range of support services available to help you to stop. If you have internet access, the NHS smoke free website.

Treatment agreement

You will be asked to sign an ‘alcohol agreement’ with your liver team as a condition of acceptance onto the transplant waiting list. These agreements will vary slightly depending on which centre you attend, but will require that you make a commitment to avoid alcohol completely, both before and after your transplant. You will also be required to agree to being randomly tested for alcohol, although how this is carried out may vary between centres. This will be explained to you before you are put on the waiting list.

Section Two

Contact us

Useful resources

• If you do have any difficulties with alcohol post transplant please see your GP and ask for a referral to your local alcohol service, you may also be able to self-refer.