Life After Liver Transplant
Today, the number of people surviving liver transplantation is higher than ever before and the vast majority now go on to lead an active life. This information is written for people and their families who have received a liver transplant, or who may be receiving a new liver in the future. It is a reference point for information you might need in the months and years to come, to help you live life after a liver transplant.
Transplantation is still very complex and remains a treatment rather than a cure for your condition. Because of this it is not unusual for some people to find themselves readmitted to hospital during the first year. Complications following transplantation can be caused by infections, recurrent disease such as primary biliary cirrhosis (PBC) or cancer and problems in other parts of the body that can take several years or decades to unfold.
The powerful drugs that play such a big part in helping people
survive and recover from transplantation can pose their own
problems. Many of these can have side effects that affect some
people more than others.
For some people, staying away from alcohol remains a major physical, social and/or psychological challenge for them to overcome.
These factors, combined with the fact the liver is such a complex and vital organ, mean that liver transplantation – from assessment to the transplant itself and your recovery period – is a unique procedure that requires a wide range of specialist health professionals to help you back to as normal a life as possible.
Although you will be required to attend follow-up clinics for the rest
of your life, for most people these visits will become less regular as
they get better. Follow up is normally at your transplant centre in the first year and after this, all going well, it is possible for your care to be shared with your local GP. However, you can choose to be seen at your transplant centre indefinitely.
How does immunosuppression work?
To function effectively your immune system relies on certain types of white blood cells that are produced in your bone marrow and lymph glands. Known as T and B lymphocytes, these cells make antibodies that protect the body from invading infections. Immunosuppressant drugs reduce the production of T and B lymphocytes by interfering with the production of genetic material within the cells, known as DNA. This prevents the cells from dividing and multiplying. With fewer white blood cells the immune system is weaker and less able to reject the transplanted organ.
What are the side effects of immunosuppression?
Having a weakened immune system also means that you pick up infections more easily. Immunosuppressants can also interfere with the production of other types of blood cells in the bone marrow.
Having fewer red blood cells can lead to anaemia and a slow down in the production of platelets can cause problems with blood clotting. For this reason, doctors will check levels of all your blood cells during treatment.
Other possible side effects of immunosuppressants are:
- kidney damage (nephrotoxicity)
- high blood pressure (hypertension)
- an increase of blood fats (hyperlipidemia)
- insulin resistance (diabetes)
- bone thinning (osteoporosis), if long-term use of steroids is part of your treatment
Again, your transplant team will monitor the concentration of medications in your blood to help avoid or manage any complications.
Your immune system has the job of keeping viruses, harmful bacteria and other organisms out of your body. Without medicines, your immune system can see your new liver as something to be attacked.
This is called ‘rejection’. Some level of immune response is quite common and occurs in more than half of liver transplants, usually within five to ten days but possibly at any time.
Rejection following soon after surgery is called ‘acute rejection’. It does not mean that you will lose your new liver but it is very important that doctors stop rejection as early as possible.
Rejection that occurs some time after transplantation is called chronic rejection. It is noticeable by a gradual loss of liver function over time, sometimes years.
To prevent rejection of the new liver, doctors will give you medication to make the immune system less aggressive. This is immunosuppression. You will need to take one or more of these anti-rejection drugs – called immunosuppressants – for the rest of your life.
The main signs of rejection to look out for are:
- fever (38°C or over)
- flu-like symptoms such as chills, aches, fatigue and headaches
- pain or swelling in the abdomen
- nausea and vomiting
If you experience any of these signs, contact your transplant team immediately. It is possible that you won’t have clear symptoms, so it is essential for you to attend clinic as often as you are asked to allow staff to keep an eye on you for other signs of rejection.
Chronic liver rejection takes some time to happen and is more difficult to treat. Fortunately it affects very few people. There is medication to control chronic rejection, but if this does not work another transplant will be needed.
Infections usually result from viruses that come to life after lying inactive (dormant) in your body or your new liver. Most of these infections would not harm anyone in good health but they can cause problems for people who are immunosuppressed.
Infections can be viral, bacterial or fungal. You are most likely to pick up an infection in the first few months after your transplant when doses of immunosuppressants are higher, but it is sensible for you to remain aware of infection risks in the long term.
Cytomegalovirus (CMV) is a type of herpes and a very common infection – more than 60% of all people are exposed to it at some point in their lives. CMV usually occurs during the first months after transplantation. Symptoms include headaches, nausea, sore throat, high temperature, fatigue and aching joints, although it is also possible not to have these signs. Doctors can diagnose the virus using a sensitive laboratory test such as the polymerase chain reaction test (PCR).
To treat the virus you will be given antiviral medication (ganciclovir) in either oral or intravenous form for several weeks. To protect against CMV occurring (prophylactic treatment or ‘prophylaxis’), doctors may prescribe antiviral drugs immediately after transplantation.
Herpes Simplex viruses (HSV) are two types of cold sore virus affecting the skin. Type 1 causes cold sores and blisters around the mouth, while type 2 causes genital herpes. After the first infection HSV lays dormant in the body until reactivated. Infection with HSV was more common after transplantation until prophylactic treatment with acyclovir (Zovirax) became routine.
HSV viruses are highly contagious and easily passed from close contact. If you have sore areas, keep them as clean and dry as possible; wash your hands with soap and water after touching them. Avoid kissing or having oral sex with someone who has a cold sore. If you are prone to cold sores, keep acyclovir cream handy and use as soon as you think a sore is developing. There is no need to check with medical staff before using acyclovir.
Varicella–zoster virus (VZV) belongs to the same herpesvirus group as HSV and causes two fairly well-known diseases, chickenpox (varicella) and shingles (herpes zoster).
Chickenpox is a contagious disease more often seen in children. It usually appears as a rash or in small blisters. If you have been in contact with someone who has chickenpox, contact your transplantteam immediately.
Shingles is caused by a much later reactivation of VZV in your body following chickenpox. There is a vaccine for shingles but it is unsuitable for immunosuppressed people as it contains live particles of the virus. Shingles appears as a rash or small water blisters, usually on the chest, back or hips. If you think you have this kind of rash, contact your transplant team.
Candida (yeast) is the most common fungal infection after liver transplantation. It usually starts in the mouth or throat but may also occur in the oesophagus (gullet), genital and urinary organs. An infectionin the mouth, throat or vagina is called thrush. It appears as a patchy white coating on the tongue causing it to feel painful and tender. This can lead to difficulty in swallowing if it spreads to the throat. Vaginal infections usually cause a whitish discharge.
Fungal infections are treated with the drugs amphoteracin or fluconazole (Fungilin), given either intravenously or as oral medication.
A quick checklist of common signs to look for are:
- raised body temperature or fever (pyrexia)
- tiredness or fatigue
- diarrhoea or vomiting
- redness or discharge around your operation scar, bile or tube site
- a cough or sore throat.
To determine the nature of the infection doctors may take blood, urine and mucus samples, as well as samples from areas outside of the body such as the operation scar and drainage site.
There are a number of fairly simple precautions you can take to stayhealthy. In short, it is advisable for you to:
- avoid close contact with adults and children carrying infections –
- from the common cold to chicken pox
- have a flu vaccination each year
- have a pneumococcal vaccination for lifelong protection against the
- pneumococcus bacterium (it causes pneumonia, meningitis and other infections)
- avoid inhaling dust, particles or smoke
- keep good standards of hygiene – for example, washing your hands after going to the toilet or changing a baby’s nappy
- brush your teeth after every meal and floss daily
- visit the dentist every 6 months and do not have dental work for the first six months after transplant (without seeking further advice from your transplant team)
- keep toenails and fingernails clean and trimmed
- thoroughly clean all cuts and grazes before applying a clean, dry dressing or plaster and keep an eye on them
- do not clean out the cat litter or bird cages, or go near animal excrement, without gloves
- for women, use only small tampons, change frequently and do not use overnight
- keep up-to-date with vaccines (see below).
Routine vaccines such as those against flu and pneumococcal infection are important. However, you will be advised to avoid ‘live’ vaccines that contain tiny amounts of a particular disease. Live vaccines given in the UK include measles, mumps and rubella (MMR), TB (BCG vaccine), yellow fever, and the oral typhoid vaccine.
It is also important that no-one in your household receives live vaccines either. Your doctor can advise on how you can protect yourself and order the necessary non-live vaccines for you and your household.
Particularly during the first three months after your transplant, it is important that you avoid eating foods that may contain bacteria such as listeria, salmonella or E.coli. You might be more vulnerable to food poisoning and there can be problems whilst you are on high doses of anti-rejection drugs.
Foods that could contain listeria and other bacteria include:
- unpasturised milk
- unpasturised cheese and soft cheese such as feta, Brie, Camembert and blue vein cheese
- live yoghurt
- food that contains raw egg, such as home made mayonnaise
- soft serve ice creams
- refrigerated smoked seafood and fish
- unwashed salads
- Deli meats
Most antibiotics are safe for you to take although some common antibiotics, such as clarithromycin and erythromycin, can interfere with cyclosporin and tacrolimus. Always ask your GP or medical staffwhether the antibiotics you have been prescribed are safe to take with your immunosuppressant medication before starting your course.
The drugs most commonly given to prevent organ rejection are cyclosporin, tacrolimus, sirolimus, azathioprine, mycophenolate and prednisolone. You may also take additional medication to managesome of the effects of these and to keep out infections.
Each of the drugs used will have its benefits and drawbacks. To make them most effective doctors will prescribe them in certain combinations, known as regimens. Most transplant units use a triple regimen, based on a CNI (cyclosporin or tacrolimus), antiproliferative immunosuppressants (mycophenolate or azathioprine), and a corticosteroid (prednisolone).
Most immunosuppression drugs can be taken in capsule or tablet form while others must be given by injection into the blood stream (IV). Certain drugs, such as cyclosporin and tacrolimus, are never given together.
Cyclosporin and tacrolimus are known as calcineurin inhibitors (CNIs). They are most commonly used and work by blocking calcineurin (a protein) that sets off the sequence of cell activity that gets the immune system into action. CNIs work very well and have greatly helped to improve the success rates for transplantation.
Because some people cope less well with the side effects of these drugs, doctors may lower the dose or switch to the other antirejection drugs, each of which works slightly differently.
Another medicine used is called sirolimus. This is an effective immunosuppressant as it prevents the rapid multiplication of T-cells that the body produces when it senses an ‘invader’, and it is this reaction that causes rejection.
Azathioprine and mycophenolate are anti-proliferative immunosuppresants. These work through blocking the action of a compound which is required for making certain blood cells that regulate and trigger immune responses by the body against infection and foreign cells.
Prednisolone is a type of steroid known as corticosteroid, which also weakens the immune system. Use of corticosteroids is gradually reduced and may be stopped after six months.
- Always take your medications at the time ordered and the exact dose prescribed
- Learn the names of your medications and their side effects
- Report all side effects to your transplant team
- Do not change dosage without consulting your transplant doctor
- Keep your medications in a dry place, out of sunlight and out of children’s reach
- Keep your medications in their original bottles or packaging
- If you miss a dose, do not double the next dose – tell your transplant team
- Use a high factor sunscreen while in sunlight when taking antirejection medication
- Carry a card or list with your medication details on it, particularly when travelling
- Consult your transplant doctor or pharmacist before taking any over the counter medications.
- Medical staff should be aware of side effects and what steps to take to reduce them. They should be aware of any underlying conditions you have and will closely monitor the effects of any medication given to you.
- You should still report side effects when they occur and ask for advice about managing them if you are unclear about the right steps to take.
- During your follow-up visits, doctors will focus on liver function tests to check how well your new liver is working. For your part, it will not always be possible to control how things turn out but it is essential that you keep your clinic appointments. If you can’t make an appointment, you may find that many problems can be sorted out by telephone.
Immunosuppressant drugs reduce the body’s ability to find and destroy abnormal cells that can lead to the development of malignancies, or cancers. With people now surviving much longer after transplantation and because the transplant population is getting older, malignancies are becoming an increasingly significant complication. For this reason it is important that you take precautions to reduce the chances of developing cancers or to help early detection of malignant changes.
The most common malignancies are:
These are disorders such as such as lymphomas and leukaemia in which too many lymphocytes are produced or act abnormally. Lymphoproliferative disease is the most common malignancy arising from liver transplantation and may develop at any time.
Doctors will be on the lookout in all patients for signs of post-transplant lymphoproliferative disease (PTLD), such as swollen lymph glands and unexplained fevers.
Exposure to the sun can damage your skin and increase the chances of developing skin cancer. This means avoiding the midday sun (10am to 3pm) when the ultraviolet rays are the strongest and applying a sunscreen lotion on uncovered skin (especially your face, neck and hands) when outdoors. Wear a hat, long sleeves and trousers if you are not using a sunscreen. If you notice any changing spots, blemishes or moles on your skin, report this to medical staff immediately.
The detection and treatment of cervical abnormalities through screening programmes can prevent the development of cervical cancer. All women aged between 20 and 64 years should be offered a cervical smear test every 3 years at their GP clinic. Women on immunosuppressant drugs are advised to visit their GP or local clinic for a smear once a year.
Ulcerative colitis is an inflammation of the colon that produces ulcers in its lining. If your liver disease is associated with this condition it is advisable that you are screened for colon cancer by colonoscopyexamination every year. There are studies that suggest people who undergo transplantation for primary sclerosing cholangitis (PSC) should also be screened annually for this cancer.
Sometimes called throat cancer, this malignancy develops in the part of the throat just behind the mouth, called the oropharynx.
Immunosuppression is considered to increase the risk of oropharyngeal carcinoma and is more commonly seen in people who have transplants for alcohol related reasons.
Hepatocellular carcinoma (HCC) is a primary liver cancer that is becoming more common in the UK due to increased incidence of chronic hepatitis C infection. People with a background of chronic hepatitis B, haemochromatosis, autoimmune liver disorders or alcoholic cirrhosis also have an increased risk of developing this malignancy.
As with many liver diseases HCC has the potential to return after treatment. However, liver transplantation is increasingly regarded as an effective treatment to stop tumours returning. This is provided that tumours are small (no larger than 5cm in diameter) and you have no more than three (no larger than 3cm) before your transplant.
People who have had a liver transplant are more likely to be at risk of cardiovascular disease than the general population, and have a higher predicted risk of developing coronary heart disease (CHD).
Not only will doctors have to manage these risks but they – and you – must make sure that your cardiovascular health is as good as it possibly can be to help your body cope with the stress of immunosuppression.
The factors that doctors will consider are:
- your age, sex, height and weight
- whether you smoke
- having diabetes before your transplant
- a family history of cardiovascular disease
- any medication you may be taking
CNI and steroid-based immunosuppression regimens used after transplantation can cause an increase in fluid retention and increased appetite. For this reason they are linked with the development ofhypertension and hyperlipidemia (excessive blood fats), weight gain and type 2 diabetes.
In the first months after your transplant you will be on a noadded salt diet to prevent or manage any hypertension. You will be screened yearly to make sure levels of fats known as lipids (cholesterol and triglycerides) in the blood are within the guidelines and target levels set for you.
To avoid putting on extra weight and to exercise weakened muscles following your transplant, you are encouraged to increase your activity level and do some gentle exercise, where this is possible.
Although there are no long-term dietary restrictions following liver transplant, simple rules apply: cut down on fatty foods, sugar and salt, and eat more fresh fruit and vegetables.
People with Hepatitis B and – far more commonly – Hepatitis C make up a large number of transplant recipients. The results of liver transplantation for people with Hepatitis B virus with acute or chronic liver failure and/or primary liver cancer have improved greatly, due to advances in antiviral drugs. Following transplantation for Hepatitis B, people are routinely given Hepatitis B immunoglobulin (HBIG) and lamivudine together with other medications, to prevent the virus from re-infecting the new liver.
Hepatitis C (HCV)
In Hepatitis C the new liver is very likely to become re-infected following liver transplantation. Levels of the virus are at their lowest immediately after transplantation but are likely to reach pre-transplant levels (and can be up to twenty times higher) within a few days of the transplant. It is now known that this happens more quickly than in pre-transplant people. This is due to their weakened immune system caused by high doses of immunosuppressant drugs.
Treatment for recurring Hepatitis C is still developing, and doctors have to take great care in prescribing both Hepatitis C and immunosuppressive drugs. Using antiviral drugs following transplant is aimed at stopping rapid viral replication and to limit damage to the liver. This is usually most effective for mild recurrence of infection but the number of people who report side effects is still high. The best timing for giving antiviral medication after transplantation and the most suitable dosages are still being studied bymedical scientists.
As with normal Hepatitis C infection, post-transplant recovery differs between one person and the next. After a few years some people may have persistent viraemia (detectable virus in their blood) with no significant liver damage, while others may have gone on to develop severe fibrosis and cirrhosis.
No single risk factor can be relied on to predict who will go on to develop cirrhosis after transplantation but medical investigation has focused on the following:
- a high viral load at the time of transplantation
- infection with genotype 1 (especially 1b) or 4
- the time between removal of the donor organ and its implantation in the recipient, known as ischemic time
- the age and sex of the donor – studies suggest progression increases with age and is common in women.
Unfortunately one in five people develop cirrhosis within a year of transplant and a small proportion die of Hepatitis C-related liver disease within five years. However, the overwhelming majority of people who survive the transplant will live without serious damage from Hepatitis C virus infection for the first five years.
Having a liver transplant is a major life event and research shows that such a substantial physical and emotional change can put you under considerable stress. It is therefore common to experience a whole range of emotions and some people will experience psychological problems following their transplant. This is particularly likely for people without good support from family and friends, those who have had problems like depression before transplant and those with substance use disorders.
However, there are studies that show that people who receive a liver transplant also receive psychological benefits. Many people who have problems before transplant, including memory impairment, slow reactions, anxiety and depression that are common in end-stage liver disease, find that the transplant helps these considerably.
It is important to be realistic about life with your new liver and be patient with yourself. Years of living with a serious liver problem, the uncertainty about receiving a transplant and the major physical and emotional toll of the operation itself can take a toll on liver patients and their families. The transplant will not be able to address all these problems and we recommend setting achievable goals and having reasonable expectations of how the transplant can help you live life to the full.
There are many factors you can manage with the support of your family and transplant team. Staying healthy, eating well, attending clinic, taking exercise, getting enough sleep, taking your medicines and raising concerns promptly with the medical team are all important.
Managing your stress levels and keeping a positive attitude are key to maintaining your emotional as well as physical health.
One of the reasons you will have had a liver transplant is to improve your health and quality of life. However, because alcohol is very much part of our culture and way of life, you will need to make decisions about how you approach alcohol in the future.
Alcohol use was not the cause of my liver disease – can I still drink?
In general, drinking alcohol after transplant is not recommended, even for people who have not had alcohol-related liver disease. Alcohol is broken down by the liver and so drinking alcohol places the liverunder extra strain. In the first few months of transplant, it is especially important to protect your liver from extra strain so that it can recover from the transplant and enable the body to heal and liver function to return to normal.
For people who have had their transplants as a result of diseases such as Wilson’s Disease or alpha-1 antitrypsin deficiency, the liver transplant may offer a complete cure. If there are no problems with the medications you are taking, it may be possible to return safely to moderate alcohol consumption. It is best to seek advice from your transplant centre about if and when it is safe to start drinking alcohol.
For most people, however, the transplant will be a treatment rather than a cure for their liver condition. There is a risk that autoimmune conditions, Hepatitis B and C, and NASH can recur in transplanted livers. Consuming alcohol places the liver under further strain and can accelerate the damage that is caused by these conditions. There is further advice in the section below about living without alcohol.
I have had alcohol related liver disease – can I still drink?
If you have had a liver transplant because of alcohol related liver disease you will have been asked to remain alcohol free for the rest of your life. There are several reasons for this.
- Your transplanted liver may not be able to break down alcohol as effectively as your own liver because of the immunosuppressant drugs you are taking. This could mean that relatively small amounts of alcohol could damage your transplanted liver in quite a short period of time
- it is possible that if you started drinking alcohol again you might find it hard to stick to just one drink. When this happens a person can find that they start drinking much more than they intended and quickly go back to drinking at levels that caused their original liver disease
- some people may have undesirable consequences of starting to drink alcohol again. This might include such things as forgetting to take your medication, missing appointments or effects on other aspects of your care. This could affect your transplanted liver and in some cases lead to rejection.
When you were being considered for a liver transplant it is likely that you have signed an agreement to remain alcohol free after your transplant. This is done to help remind you about the importance of not drinking and the reasons why you agreed to be abstinent. It is also part of your acceptance of all the treatment and care offered to you and a demonstration of your commitment to the transplant programme.
The agreement is also likely to highlight the need to maintain contact with the alcohol liaison specialist within the transplant team as well as having routine blood tests to check for alcohol. It is worth remembering that this contact enables the transplant team to spot any potential problems earlier and so offer support and treatment sooner, reducing the likelihood of harm to the new liver.
The most important thing is that you understand the cause of your liver disease and take a decision not to drink alcohol again.
What about shandy or alcohol free drinks – surely they can’t hurt?
People who have had a history of alcohol related liver disease should not drink low alcohol or alcohol free drinks. You might think this seems a bit harsh but,
- Sometimes drinking alcohol free drinks such as Kaliber or Becks LA can trick your brain into thinking that you are really drinking alcohol. When this happens it can cause a desire or craving to drink alcohol again.
- When you are in a social situation or at the pub it is possible to get drinks mixed up and find you have mistakenly drunk some alcohol without meaning to. This risk is reduced if you stick to soft drinks.
- Shandy does contain alcohol. Some people have found that they started drinking a shandy that was mostly lemonade and a tiny bit of lager. Over the course of time the lager can become the bigger part of the drink and you can end up drinking far more than you originally intended. This may cause a return to your original liver disease.
- There are many more types of soft drinks available than in the past.Take your time to experiment with these to find one that you enjoy and feel comfortable with.
- If this is bothering you or you have further questions, talk to the substance misuse nurse at your transplant centre or your liver transplant coordinators.
How can I manage without drinking alcohol?
Before you had your transplant it may have been relatively easy not to drink alcohol. You were probably feeling unwell, had less of a social life and were very aware of the need for abstinence as part of being on the liver transplant waiting list. As you return to a more normal life you may find it harder than you expected not to drink. Below are a few ideas that you might find helpful.
- Reduce the temptation to drink. Don’t keep any alcohol at home, particularly in the fridge
- identify your triggers. These can be certain people or places. Often triggers can be the way we feel, such as when we are stressed, angry, anxious or down. Try to avoid your triggers if you can, or develop a plan so that you are prepared and able to deal with a situation without alcohol
- if your triggers for drinking are difficult feelings such as anger, anxiety or depression, it may help to talk to someone about managing these without drinking. Most of the organisations that work with people to stop them drinking have skills and practical advice to help you with this
- look back at your list of reasons for stopping drinking and remind yourself regularly about why you are giving up alcohol. Remember it is not just about the transplant – you may have noticed other unexpected benefits such as having more money, developing new interests and having better relationships with those you love for example
- keep busy! Boredom is often a reason for drinking or returning to drinking – think about hobbies you have neglected or you want to take up
- change your habits. If having a drink straight after work was something you always did, you will need to alter your routine. Do something else or find another way to relax
- take it one day at a time. It can be very daunting to think about not drinking forever. When it gets difficult try saying to yourself, ‘I’ll just not drink for today.’ If that feels too much, break it down to ‘Just for this morning’ or ‘Just for the next couple of hours’.
- Cravings or urges to drink will pass. You might find it helpful to remember the ‘four Ds’:
1. Delay for at least five minutes so that the urge to drink will pass
2. Drink some water or soft drink you like, and sip it slowly
3. Deep breathe – slow, full deep breaths will control your nerves
4. Distract yourself, do something else to keep your hands and mind busy.
Do also talk to friends, family or alcohol support such as alcohol counsellors, alcoholics anonymous or contact telephone helplines such as Drinkline.
- Don’t try to test yourself. It might seem a useful challenge to deliberately go somewhere you know you might be tempted to drink to see if you can manage to stay off it, but this can be quitedangerous and can lead to a slip back into old drinking habits
- tell close friends and people who you see often about not drinking alcohol and why this is important to protect your health. If you do this, they are likely to be more understanding, put less pressure on you and will make sure that they have a suitable soft drink available for you when you see them
- be convincing! When you are in a social situation be clear about which soft drink you are having, ask confidently and don’t hesitate.
If you seem unsure people are more likely to try and persuade you to drink alcohol instead. It is worth preparing ahead and thinking through scenarios and how you will respond.
Being alcohol free is part of a whole range of things that you need to do in order to keep yourself healthy after your transplant. It is important to take regular exercise and eat a balanced diet especially as some of the side effects of the immunosuppressants make weight gain easier.
Remember alcohol contains lots of calories – even a pint of very weak beer (3.5% abv) can contain up to 180 calories. Exercise is also a useful way of managing stress as well as controlling your weight.
Can I use illicit drugs after transplant?
Many of the reasons for not using recreational drugs are similar to the reasons for not using alcohol post transplant. There may be a tendency to use more of a substance than intended, and under the effects of the drug you might forget to take your immunosuppression medication or keep your hospital appointments (or perhaps simply misjudge them as not very important).
All drugs have an effect on the liver, but in particular, street drugs are notoriously impure, often of unknown strength and frequently containing one or more other drugs as well as contaminants. Whatever the route of administration, these drugs will impact on your judgement, behaviour and affect the liver.
Surely cannabis is OK?
Cannabis is a psychoactive drug. It can aid relaxation (though may also induce anxiety and paranoia). It is linked to untoward effects on motivation and judgement. It is also linked to the “gateway theory”,where people who start using this drug may move onto other harmful drugs. There are some clinical reports of direct effects on the liver. As such, the use of cannabis is actively discouraged.
I am on a methadone programme. Should I stop it?
Some patients who have used opiates in the past (such as heroin) are treated with a substitute medication such as methadone or buprenorphine (Subutex).
Substitute medication is aimed at helping a person to manage cravings for opiates and provide a safer alternative to illicit or unmanaged use. If you are on a methadone or Subutex programme it is likely that you will be under a treatment team for this, either within a drugs clinic or your own GP surgery. It is very important that you do not stop your medication unless you do so as part of a planned detoxification with your drug treatment team, or because your medical team need to stop it for medical reasons. In the case of the latter, your medical team should discuss this with you and your drug treatment team and be aware of the possible complications of this, which could include opiate withdrawal symptoms, reduced tolerance to opiates and craving to use drugs again.
There is also good evidence that people who stop using opiate drugs such as heroin and methadone may sometimes substitute for this by increasing their alcohol use, and so you, your family and your treatment team should be mindful of this.
Alcohol and drug misuse
There are about 500 local advice and counselling centres in the UK. Most of these are funded by the NHS and are free to access. You can look them up in the telephone book or use the directory on the Alcohol Concern website. Alternatively your GP or practice nurse should be able to provide you with details of your local service and arrange to refer you, though in the majority of instancesself referral is preferred and more straightforward.
Diet after liver transplant
You will probably find that you have a better appetite after transplantation than you did before the surgery. Some of the weight gain is also due to the immunosuppressive medications – particularly prednisone. However, for around a third of people after transplant, this is significant (over 10kg or 1.5 stone).
To stay at a healthy weight, it is sensible to reduce your consumption of simple carbohydrates such as food and drink high in sugar. Eating complex carbohydrates such as cereals, vegetables, whole grain pasta, bread, rice and potatoes is a healthier choice. It is also helpful to restrict how much fat you eat, not just to limit weight gain but also to help control your cholesterol which can be a particular challenge when taking some anti-rejection medications.
It is also important to eat sufficient protein to enable your wounds to heal and to build muscle. You may be advised to eat roughly 80g a day of protein, spread over several meals if possible. Protein is found in meat, poultry, fish, eggs, nuts and beans.
Your transplant centre can give you specific dietary advice and refer you to a dietician for any specific problems you have.
When can I go back to my usual routine?
Having a liver transplant is a major operation and people need time to recover. How much time depends on the individual and it can vary from six weeks to six months before people are ready to take up normal activities again. It is a good idea to reduce the length of time you do various activities, such as work, school or exercise, so you can build up your strength. You will probably find that you get tired more easily and it is important to be able to rest whenever you need to.
When can I take up exercise?
Taking up a healthy lifestyle with exercise built-in is an important part of your recovery from a transplant. However, it is important to build up your levels of activity gradually and it will take time to build your strength and endurance. You should avoid strenuous exercise for the first couple of months and check with the transplant centre that this will not cause problems. It is important not to lift heavy items until your wound has healed and for at least the first two months after transplant. Contact sports, such as boxing, should generally be avoided.
What about travel?
You will be advised not to travel long distances away from your transplant centre in the early weeks. After this, it depends on your health and where you are travelling to. Some destinations may put you at increased risk of infection, from anything such as food poisoning bacteria to malaria and you may not be able to receive some of the necessary prevention mechanisms such as live vaccines. It is best to seek medical advice about whether travel to these destinations is advisable at all.
When you travel, always take contact details for your transplant centre with you so you can contact them for advice when you are away.
Sensible precautions such as not travelling if you feel ill, seeking prompt medical advice if you are unwell when away (and telling them you have had a liver transplant), and taking a written list of all your medications and doses are very important.
It is important to remember that your travel insurance will not cover you (or anyone travelling in your party) for health problems that arise, cancellation, or the need to return home early, unless you havespecifically briefed them about your medical history and they have agreed to cover. If you do not have health insurance, it is a good idea to check the cover that might be provided to you in an emergency and whether they have any reciprocal agreements for healthcare, such as participation in the European Health Insurance Card scheme.
Will I be able to have a normal sex life after liver transplantation?
As soon as you feel ready! Transplantation can affect sexual function – men can find that it can take a couple of months for everything to work normally again. Certain medications, too, can have an effect. If you have any problems or concerns you should talk about these with your transplant team when you come to clinic.
Women are not recommended to use oral birth control pills immediately after transplant, and for both men and women, it is important to use contraception because conceptions must be carefully planned if you have had a transplant (see below).
Both women and men have a higher risk of contracting sexually transmitted diseases (STDs) if on immunosuppresants, so take extra care and practice safe sex.
Can I have a baby following liver transplantation?
If you are considering trying for a baby, speak to your transplant team for advice. Some medications (particularly mycophenolate mofetil (CellCept)) can harm the unborn child, so it is important that they review and possibly adjust your medication regime before you get pregnant. It is vital that you do not stop taking your immunosuppressants when you become pregnant without speaking to your transplant team. In general it is thought that you should wait at least 12 months following your transplant before attempting to conceive.
The good news is that many women have become pregnant and have had healthy children after transplant. Perhaps unsurprisingly, complications are more common in liver transplant recipients than in the general population. As a result, such pregnancies should be followed by a multidisciplinary team involving both obstetric and transplant specialists.