All About Transplants
What is Liver Transplantation?
A liver transplant, sometimes referred to as orthotopic liver transplantation (OLT), is a procedure whereby a diseased liver is removed and replaced with a healthy donor human liver. This operation becomes necessary if the liver is damaged to the point where it is unable to work properly, can no longer repair itself and is likely to fail completely.
A liver transplant can involve a whole liver, a reduced liver or a split liver. The term ‘reduced’ is used when only a part of the liver is used, while a split liver is when either a right or left lobe is used. Transplants may be either ‘elective’ or ‘super-urgent’ depending on how quickly liver failure develops. ‘Super-urgent’ refers to emergency procedures; ‘elective’ to a routine procedure following selection criteria for transplant.
Most livers used in liver transplant operations come from living donors in India, whenever possible a portion of a liver may be taken from a deceased donor (cadavers).
Livers that come from deceased donors are categorized in two different ways:
As either donation after brain death (DBD) or donation after circulatory, or cardiac, death (DCD). It used to be assumed that DBD livers resulted in better outcomes, as the liver continued to receive blood, oxygen and essential nutrients before being taken for transplant. Livers retrieved from donors after circulatory death have not had the same continuous blood supply because the heart of the donor has stopped beating. However, with careful patient and donor selection, the outcome of a liver transplant using a DCD liver can be successful, and give very sick patients a chance to live longer with fewer symptoms.
The main causes of severe liver damage resulting in the need for transplant are:
• Cirrhosis (chronic liver disease)
• Acute (sudden) liver failure, most commonly caused by paracetamol poisoning.
Cirrhosis is the main cause of such severe damage to the liver that a transplant is required. The condition is the result of long-term continuous damage to the liver, and can cause complete liver failure.
Cirrhosis is most commonly caused by:
• Hepatitis B
• Hepatitis C
• Drinking too much alcohol
• Advanced fatty liver disease (steatohepatitis)
• Autoimmune hepatitis
• Primary biliary cholangitis (PBC) and long-term disease of the bile ducts, including primary sclerosing cholangitis (PSC)
• Genetic conditions such as haemochromatosis or Wilson’s disease
• Disease of the blood vessels such as Budd-Chiari syndrome.
Over a thousand liver transplants are carried out each year in India. Transplantation is a major operation, and as with any major surgery, there are risks involved, both during and after the operation. Most patients do very well after a liver transplant, living for more than 10 years post-operation. Many people live for 20 years or more.
successful liver transplant, you should not only expect to feel fitter and
healthier in general, but you can also expect to significantly increase your
Tests and Waiting Lists
What tests are done to determine whether you should go on the transplant list?
When you and your doctor begin to consider liver transplantation as a possible treatment option, you’ll need to undergo a number of tests to determine if a transplant is possible and if it’s the best option for you. Many of these tests will be familiar from when you were first diagnosed with a liver condition and some of the tests will need to be repeated throughout the assessment period.
Assessment for liver transplantation lasts around three to five days. However, every transplant unit runs a slightly different assessment process based on their institutional protocol, depending on whether you are an inpatient (will stay in hospital for one night or more for tests) or outpatient (have come into hospital specially to attend appointments or tests). This can be a difficult time, especially if sometimes you’re being asked to repeat tests you’ve already had. However, it’s crucial these are carried out to ensure you’re fit enough to have the operation and can fully recover from it. The testing period is also a time that can be used to fully understand the commitment to your own healthcare you’ll need to make after the operation, such as committing to giving up alcohol for the rest of your life.
If, during the assessment period, it is discovered you have other underlying medical conditions, you may need to receive treatment for these before you can have a liver transplant.
Due to your liver condition, you may feel unwell during the assessment period. While this is not uncommon, it’s very important that you’re honest with your medical team about your health and any concerns or questions you may have.
Transplant Recipient Assessment
Some of the basic tests you are likely to have are:
These are used to check for any factors that might cause problems after the transplant. From your blood test results, a MELD score will be calculated. MELD stands for Model for End-Stage Liver Disease, and is a medical scoring system used to predict the prognosis (most likely outcome) of patients with chronic (long-term) liver disease.
Doctors use this score to calculate if and where a potential recipient would be placed on the waiting list for a liver transplant. A score of ³ 15 or higher confirms a patient is eligible to be placed on the list. Higher the score, means sicker the patient and need for urgent transplantation before he/she becomes too sick for transplant.
This will allow your doctor to check the appearance of your heart and lungs.
Lung Function Test
This test is used to check the volume of air moving in and out of your lungs.
Blood Oxygen Level Test
A small amount of blood is removed from an artery in your wrist, from which the amount of oxygen in your blood will be measured, although this is not always done.
Commonly known as an ECG, this test checks the electrical activity of your heart to give an accurate measurement of how well it is functioning. There are other tests that you may need to have, depending on your doctor’s assessment
Cardiopulmonary Exercise Test (CPEX)
This test, which is the ‘gold standard’ in measuring how well the heart and lungs work during exercise, is now used in most liver transplant centers and helps doctors assess how well a potential liver transplant patient will cope with surgery and recover afterwards. Your heart rate and rhythm, and oxygen uptake and carbon dioxide output, are measured while you exercise on either a treadmill or stationary exercise bike. The fitter you are, the more successful the operation and your recovery are likely to be.
Echocardiogram and Stress Echo
This is a test that uses ultrasound (sound waves) to produce real-time images of your heart as it beats. It helps to assess the size and structure of your heart, and its ability to pump blood efficiently. The procedure is similar to an ultrasound – a probe is moved over your heart, which sends sound waves through your skin. The probe will then record the reflected sound waves that bounce off your heart, creating a moving image. You may be asked to do some exercise, which makes your heart work harder, so that your medical team can assess how your heart acts under ‘stress’. This can also be done with medication.
During a coronary angiography, a dye will be injected into the arteries of your heart, after which you will have an X-ray. This will provide images of how well your arteries are working and help your medical team spot any problems that could cause problems during and after your liver transplant. This test is generally carried out for people who have existing coronary disease (heart disease), are over 60 years old, have type 2 diabetes, smoke or have high blood pressure (hypertension) or as decided by cardiologist doing the assessment.
Kidney Function Tests
This set of tests includes blood and urine tests. There is a strong link between issues with kidney function and liver failure, so these tests are carried out to ensure problems with the kidneys won’t have a negative impact on transplant surgery.
The same test that is used routinely during pregnancy to assess the growth and health of the baby can give a picture of your liver too. It’s non-invasive and painless, and can help your medical team assess the condition of your bile ducts, which helps to ensure a safe and successful surgery.
Computerized Tomography (CT) Scan
This test will give your medical team a detailed picture of your internal organs and body tissue, helping to pinpoint any areas of concern that may not be picked up on a normal X-ray.
Magnetic Resonance Imaging (MRI)
An MRI scan is similar to a CT scan but uses magnetic fields instead of X-ray technology to give a detailed view of your internal organs.
An endoscopy is used to identify whether any veins (varices) in your stomach and gut are damaged or bleeding. It is a procedure normally carried out under local anesthetic and involves a very thin tube with a camera being passed down your throat and into your stomach. This is not repeated during the assessment if the patient had undergone the endoscopy in the recent 3 months and no pressing indication at present to repeat again.
The mouth is the most common site for infection for post-transplant patients. Good oral hygiene will be assessed prior to placing you on the list and steps will be taken to ensure that you are fully aware and committed to preventing oral infections after the operation.
During your assessment period, you will be asked lots of questions. Some of these will be repeated by different health professionals. While this may be frustrating, it is vitally important that you answer all questions as honestly and fully as possible. These questions, along with the tests outlined above, help the transplant team assess whether you’re a suitable candidate for a liver transplant. Your doctors need to consider both your physical and mental health because a liver transplant is a major surgery that you need to be able to cope both physically and psychologically.
The assessment process can be distressing for both the patient and their families. It’s really important that you feel able to ask any questions you might have, or that you can talk your worries through with a professional. Do ask your transplant team for advice on where you can find this help and they’ll be happy to assist
What happens when you are put on waiting list?
If the transplant team confirms that you’re a suitable candidate following the assessment period, they’ll discuss with you whether you would like to be placed on the waiting list.
If you confirm that you’d like this to happen, you’ll be placed on a list according to your blood type.
How long will I have to be on the list?
How long you’ll spend on the waiting list before a suitable liver becomes available varies, depending on blood group. The scheme matches livers on a national, rather than regional, basis, with the aim of increasing the numbers of life-years gained by the transplanted livers and decreasing the number of people who die on the waiting list.
Priority will always be given to those on the ‘super-urgent’ list (patients of acute liver failure only). If there is no patient on the super-urgent list for that particular blood group, then the organ is allocated to the patient on top of the waiting list in the same blood group. No one can predict the availability of organ on cadaveric waiting list.
Since organ donation in India is in infant stages with only some donation in southern states such as Tamil Nadu, majority of patients in India receive living donor liver transplantation.
What should you do while on the waiting list?
Most people are well enough to wait at home until a donor liver is found. You should carry on leading as normal a life as your health will allow you, although there are a number of things you must bear in mind.
- The hospital must be able to contact you at short notice. You must tell hospital staff if there are any changes to your:
- Phone number
- Circumstances that may affect your ability to undergo major surgery
- Health, i.e. if you develop an infection, temperature or your treatment changes.
Failure to keep the hospital properly informed about any of these changes can reduce your chances of having a transplant if a donor is found.
- You must continue to abstain from alcohol while you are on the list.
- You should take care of yourself to ensure you are in the best health possible should a donor be found. The best ways to do this are by:
- Eating a healthy, well-balanced diet (follow advice given by the hospital).
A hospital dietitian specializing in liver disease may create a personalized plan for you, which you should stick to
- Taking regular physical activity
- Not smoking.
- 4. You must prepare an overnight bag and ensure that arrangements are made with family, friends and employers so that if a donor liver is found you will be able to go to hospital immediately. Your overnight bag should contain comfortable bedclothes (pack a size bigger than usual to accommodate swelling / stiches), socks, essential toiletries, a water bottle and essential information about any medication you’re on. Don’t forget to pack a charger if you are taking your phone
When you’re on the waiting list, your health will be monitored closely. You’ll need to have a regular ultrasound scan (usually every three to six months), have your blood tested regularly and your MELD score calculated every month. This will give the most accurate picture of how your condition is developing and allow doctors to react quickly to any changes in your health.
Being on the waiting list can be difficult. The thought of having to ‘drop everything’ at what may be very short notice (in some cases, less than 30 minutes) should a suitable liver be found can make life feel very uncertain.
You may have financial worries, be concerned about the effect of your illness on your family or worried about life after the operation – do ask your medical team to help you find counselling and / or financial advice if you feel you would benefit from it. And remember – you’re able to suspend yourself from the list if you feel this is necessary. Make sure you discuss the temporary removal of your name from the list with your medical team so you can be sure you’re doing the right thing.
Exercise is important
Being physically fit can improve the chances of a successful liver transplant operation and help you recover more quickly afterwards. It can also help to combat the increased frailty seen in some people with liver disease – what’s known as skeletal muscle atrophy, or sarcopenia. Simple forms of exercise, such as walking (use a simple fitness tracker to monitor the number of steps taken and aim to increase these weekly) and what fitness experts call ‘functional exercise’ (activities in which you engage all the major muscle groups in the body) help to strengthen your heart and lungs, increase bone density and improve muscle strength. Of course, it’s hard to commit to regular exercise if you’re feeling very unwell but anything you can do safely will be worth the effort. Your doctor will be able to advice on how to get started.
What happens when a potential cadaveric donor is found?
When a suitable donor is found the hospital will contact you. This can happen at any time, day or night. How you get to the hospital will have been determined beforehand, whether you make your own way there or hospital transport will be available.
Your transplant coordinator will normally tell you if it’s OK to eat or drink, and when to stop. If you have diabetes you must make sure you tell your transplant doctor. When you arrive at the hospital you’ll be seen by your doctor, who will go through your medical history. You will have an ECG and may also need a chest X-ray. Your blood sodium levels will need to be checked before the surgery can begin and will need to be higher than 125umol/L. Before the operation you may be required to wash with antiseptic soap in preparation for surgery.
An anesthetist will give you an injection, called a pre-med, to help you relax. A cannula (a small needle put into your hand that will allow for easy administration of drugs during the operation) will be inserted and you will be taken to the operating theatre. Your family will be shown to a room in which they can wait for you. When the operation is ready to start you will be attached to machines that will monitor your heart rate and blood pressure and the anesthetist will put you to sleep, either via an injection or with gas through a mask. Being under anesthetic is what doctors call a state of ‘controlled unconsciousness’ and the anesthetist will monitor you throughout the operation.
The donor liver will have undergone a very thorough screening process to ensure it is from a healthy donor. It is possible to contract a disease from an infected liver, but this is extremely rare as the screening process is very rigorous.
During the surgery an incision is made into your upper abdomen, through which your liver will be removed. There are two types of incisions that can be made: one is a T cut, and the other is a reverse L cut.
Once the cuts have been made and the liver has been removed the donor liver will be attached to your blood vessels and bile ducts. If your bile ducts and the donor’s bile ducts are different sizes, a tube can be used to connect them. This tube will poke out of your skin for approximately three months after surgery before being removed by your transplant surgeon when you return to the clinic.
After your liver has been attached and the surgeon is happy, the incision will be closed up using dissolvable stitches or staples. Two drainage tubes are placed just below the wound to drain blood and fluid from around the liver. These drains are removed in the first few days after the operation. When this has been completed you will be moved to intensive care to recover.
After the surgery
When the surgery is over, the anesthetist will stop the anesthetic and you’ll regain consciousness soon after. You’ll have also been given painkilling medication so that you’re comfortable when you wake up. When you first wake up, you will notice that you:
- have a tube in your throat and are attached to a ventilator to help you breathe
- are attached to machines that will help doctors monitor your condition
- have a tube in your nose.
When you start regaining normal breathing function the tube in your nose and throat will be removed and you will be given oxygen through a face mask. A sore throat is not uncommon due to the breathing aid that was in your throat. You will be taken through some breathing exercises by the nursing staff to help you breathe normally again and reduce the pain. You will be administered several pain relief injections to help manage the pain
You will continue to receive pain relief, which can sometimes be self-managed through a PCA (pain-controlled analgesia or PICA) device. In the first few days following surgery you will have routine blood tests to make sure the liver is working and there are no side effects from the medication. You’ll have chest X-rays to check your heart function, and may be given antibiotics to reduce the risk of infection
If your recovery is progressing well, you will probably be moved out of intensive care and onto a ward after one or two days. You might find that you are able to move around more at this point, and you’ll be encouraged to do so. It is very important that you do your best to move as much as you are able to with the help of the nurses and physiotherapists as this helps prevent chest and mobility problems.
It’s normal to start eating between one and five days after the operation. It’s important to follow advice from a dietitian, who will advise you on the best post-operation diet for you.
The drugs you’ll be on have many side effects, and you may experience vivid dreams and nightmares. Some people experience hypnagogic hallucinations, or ‘waking hallucinations’, which are very powerful sensations that occur in the groggy period between sleep and wakefulness. They can seem very real, and be very frightening. Remember too that low mood following your liver transplant is common. You’ve undergone major surgery and change is always difficult, even when it’s positive.
After your operation, you’ll need to take medication to prevent your immune system from attacking and rejecting your new liver. The fact that the liver is such a complex organ means that liver transplantation – from assessment right through to recovery – is a unique procedure that requires a wide range of specialist health professionals to help you regain a normal life. These include specialist nurses, transplant coordinators, dietitians, physiotherapists, pharmacists and substance misuse specialists.
Despite the complexity of the operation, the survival rates for liver transplantation are good and getting better. Over 90% of recipients survive the first year and more than three quarters (76%) of liver transplant patients now survive five years or more. Overall, doctors expect donor recipients to live longer and to enjoy a good quality of life. Although you will be required to attend follow-up clinics for the rest of your life, appointments become less frequent as your condition improves. These will be at your transplant center for the first year and after this it may be possible for your care to be transferred and shared with your local physician. If you do encounter complications or problems during your recovery, it’s vital that you stay in close contact with your transplant team and alert them when something is not right.
As well as medical support, your transplant center will have support services to help you with everyday life. These could include liaison staff to provide advice and support if you’re feeling low or depressed, or financial advice. If your transplant was as a result of alcohol or drug issues, you’ll be able to get support from substance misuse specialists.
Your immune system is designed to protect your body from viruses, harmful bacteria and other foreign organisms from outside of your body. As the donor liver is from a foreign organism which your body will not recognize, your immune system will try to attack it. This is called ‘rejection’. Some level of rejection is quite common and occurs in around a third of liver transplants.
Rejection within the first year is most common. Rejection following soon after surgery (within five to 10 days) is called ‘acute rejection’. Acute rejection does not pose any great risk to your new liver but it is very important that your medical team stop it as early as possible.
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 will prevent the cells from dividing and multiplying.
With fewer white blood cells, the immune system is weaker and less able to reject the transplanted liver.
What are the side effects of immunosuppression?
Immunosuppression cannot just be targeted at the body’s response to the liver and will affect your whole immune system. This means you will have a weakened immune system and be more susceptible to other infections.
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 anemia and slowdown in the production of platelets can cause problems with blood clotting. For this reason, doctors will do blood tests regularly.
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.
Your transplant team are aware of these complications and will monitor the concentration of your medications to help avoid or manage any that do arise.
Rejection that occurs sometime after transplantation is called ‘chronic rejection’. It is noticed via the gradual loss of liver function over time, which can sometimes be many years.
Rejection is preventable through immunosuppression medication, which will make your immune system less aggressive and stop it from attacking your new liver. Immunosuppressant medication will normally be taken for the rest of your life. Research is being conducted into the possibility of removing transplantation patients from their medication but as yet doctors are unsure if this is possible.
What are the warning signs of rejection?
- Fever (38ºC 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. However, most patients are asymptomatic (have no symptoms) so it’s essential for you to attend your clinic as often as you are asked, so staff can monitor you for signs of rejection.
The vast majority of cases of rejection are very treatable, although you may need to be admitted to hospital for a liver biopsy to make the diagnosis. Chronic liver rejection takes some time to develop and is more difficult to treat. Fortunately, it affects very few people and there is medication available to control chronic rejection. In the very unlikely situation that the medication doesn’t work, another transplant may be required.
The drugs most commonly given to prevent organ rejection are cyclosporine, tacrolimus, sirolimus, azathioprine, mycophenolate and prednisolone. You may also take additional medication to manage some of the effects of these and to help protect your body from other infections.
Cylcosporin and tacrolimus are known as calcineurin inhibitors (CNIs). These are the medications most commonly used and work by blocking caclineurin (a protein) that sets off the sequence of cell activity which will activate the immune system. CNIs are very effective and have helped increase the success rate of transplants.
Different patients will respond differently to CNIs and the doctors might lower the doses or switch to other immunosuppressants. One of these is sirolimus, which works by blocking the rapid multiplication of T-cells that the body produces when it ‘senses’ an invader. It is this rapid multiplication that causes rejection. This is not normally given immediately after a transplant.
Azathioprine and mycophenolate are anti-proliferative immunosuppressants. These work through blocking the action of a compound which is required for making certain blood cells that regulate and trigger immune responses against infection and foreign cells.
Prednisolone is a type of steroid known as a corticosteroid, which also weakens the immune system. Use of corticosteroids is gradually reduced and may be stopped after six months.
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. Often transplant units use a triple regimen based on a CNI, antiprofilerative immunosuppressants and a corticosteroid.
Most immunosuppressant drugs can be taken in a capsule or tablet form but some will need to be given via intravenous (IV) injection. Certain drugs cannot be given together, and your doctors will advise you on this.
Your hospital should provide you with a medication card to record information about your medication, dosages and the times drugs were administered – it’s very important to keep this with you should you need to be admitted to hospital again. When you are discharged from hospital, the exact information about your medication should be passed from the transplant unit to your GP.
It is important that your GP continues to prescribe your medications at the same dose and formulation as advised by the transplant team. Modified slow release (MR) versions and non-MR versions (which are usually taken more frequently) should never be confused. To prevent this, you can check your prescription and tablets dispensed by your pharmacist against the dose and formulation advised by your transplant center.
It is important that your pharmacist is dispensing exactly what your medical team is prescribing. Although there are generic formulations of specifically branded drugs the composition of these could be slightly different to the formulation you have been prescribed. This can affect the way that they work or interact with other medications.
It is vitally important that you do not accept any medication other than what you have been prescribed, and you must always consult with your medical team before changing or altering your medication. Always check at the pharmacy that the prescription has been correctly dispensed – name of drug, dosage amounts and timings, and drug strength.
Side effects are most common in the first months following your transplant due to the highest doses being administered. Your doctors will carefully consider the most suitable regimen and correct dosage for you to best manage, or avoid any side effects.
Once discharged from hospital it is your responsibility to take your medications. It is essential that you continue taking them as directed and do not deviate from this unless you consult your transplant team.
Medication dispensers are available to help you remember to take your medications on time. Talk to your hospital or GP if you are interested in one of these. Something as simple as setting regular alarms on your mobile phone if you have one can also be helpful.
Top 10 tips for taking your medication:
- Always take your medication at the time directed 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 hepatologist
- Keep your medication in a dry place, out of direct sunlight and out of children’s reach. Also keep it away from pets
- Keep your medications in their original bottles or packaging
- If you miss a dose, do not double the next dose. Tell your transplant hepatologist
- 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 how to reduce them. They should also be aware of any underlying conditions you may have and will monitor the effects of any medication given to you.
It is important to report side effects when they occur. Do ask for advice on how best to manage them if you are unclear. The progress of your new liver function will be monitored mainly through liver blood tests (formerly known as liver function tests) and follow-up clinical appointments. It is vitally important that every effort is made to attend all follow-up clinic appointments. Any problems that occur in-between appointments can often be answered by telephone conversation with transplant coordinators.
Despite the disadvantages and side-effects of immunosuppressants, they are essential for helping your new liver to function well. The benefits of a transplant outweigh longer term problems that may occur due to necessary medication.
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 your dose of immunosuppressants is at its highest, but it’s essential that you remain aware of these risks in the long term too.
Cytomegalovirus: CMV is a very common infection. It’s similar to the herpes virus that causes chicken pox and cold sores, and more commonly occurs during the first months following transplantation. Symptoms include headaches, nausea, sore throat, aching joints, fever and fatigue although it is also possible not to have these symptoms.
Herpes simplex virus: There are two types of HSV. Type 1 causes cold sores and blisters around the mouth while type 2 causes genital herpes. HSV is extremely contagious and steps should be taken to prevent transmission to others around you. Acyclovir cream can be used to treat cold sores, and there is no need for consultation with your doctor prior to use. However, if you have sores in your mouth or on your genitals, you need to contact your medical team as you may need acyclovir in tablet form or via intravenous drip (IV).
Varicella-zoster virus: VZV causes chickenpox and shingles. Chickenpox is a contagious disease more commonly seen in children. It usually appears as a rash or in small blisters. If you have been in contact with someone who has chickenpox it is essential you contact your transplant team immediately. Every patient is tested for previous exposure to VZV. If you haven’t been exposed, you’ll be informed and may need immunoglobulin after exposure.
Shingles is caused by a much later reactivation of VZV in your body following a history of 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 that you have this kind of rash, contact your transplant team.
Candida (yeast) infection: This is the most common fungal infection to occur after liver transplantation. Oral candida infection appears as a patchy white coating on your tongue and tenderness or difficulty swallowing in as it spreads to your throat. Vaginal candida appears as white discharge. You will be given medication in the first week after transplant to help prevent it. If you suspect that you have an infection you must alert your transplantation team immediately.
How do I know if I have an infection?
- Raised body temperature or fever
- Tiredness or fatigue
- Diarrhea or vomiting
- Redness or discharge around your operation scar, bile duct or tube site
- Cough or sore throat
- Pain, burning or difficulty passing urine.
To determine the nature of the infection, doctors may take blood, urine and mucus samples as well as samples from areas outside the body, such as the operation scar and drainage site.
There are a number of easy steps that you can take to stay healthy. It is advisable to:
- Avoid close contact with adults and children carrying infections
- Have a flu vaccination each year
- Have a pneumococcal vaccination for lifelong protection against the pneumococcus bacterium (causes pneumonia, meningitis and other infections)
- Maintain good standards of hygiene
- Visit the dentist every six months, but not within the first six months following transplant without medical advice
- Thoroughly clean all cuts and grazes
- Do not clean out animal cages or animal excrement without gloves and get any pets routinely wormed
- Keep up-to-date with your vaccinations
- Ensure you have a thermometer or similar device to ensure you can take your temperature at home.
Routine vaccinations, such as the flu and pneumococcal jabs, are important. However, due to the immunosuppressants, live vaccines should be avoided as they contain a tiny amount of ‘live’ disease.
Live vaccines administered in India include measles, mumps and rubella (MMR), TB (BCG vaccination), yellow fever and the oral typhoid vaccine. Your household members should also avoid live polio vaccines in order to protect you. Your doctor will advise you on how to protect yourself against these conditions and order the necessary vaccines for you.
Due to your suppressed immune system you will become more susceptible to infections such as food poisoning. It is very important you wash your hands before preparing food and follow general food safety guidelines. It is important that you are very careful not to put yourself at risk and to avoid foods that may contain bacteria such as listeria, salmonella or E. coli. You will be most susceptible during the first three months post-transplant due to the high immunosuppressant dose
Simple tips to stay healthy
Cooking and storing food at the right temperature and for the correct length of time helps to ensure all harmful bacteria are killed. Always follow the instructions on the packaging.
- Ensure white meat (such as chicken) and mince is cooked all the way through. Whole cuts of meat, such as steak, only have bacteria on the outer surfaces, whereas bacteria are spread throughout foods like burgers due to the mincing process.
- Store foods that need to be chilled in a fridge that is 5°C or cooler, and don’t overfill the fridge to allow air to circulate. Remove from the fridge for the shortest time possible before preparing.
- Freezing food ‘pauses’ the growth of bacteria rather than killing it. Defrost food in the fridge so that it never gets warmer than above 8°C, as it would at room temperature – the ‘danger zone’ for microbial growth is above 8°C and below 60°C
- Always cook food so that it reaches and stays at 70°C unless you’re cooking something for longer periods (60°C for 45 minutes, for instance).
Use-by and best before dates. Don’t use, or freeze, foods after the use-by date as they could contain harmful bacteria
Use-by dates are found on foods that go off quickly, such as meat or bagged salads (always wash any salad vegetables thoroughly, even if they state they’re already washed). The use-by date is about safety. The best before date is about quality, and applies to a wide range of foods, including tinned and frozen goods. The food will be safe to eat after this date but may not taste as nice.
Can I take antibiotics for an infection?
Most antibiotics are safe for you to take although some common antibiotics, such as clarithromycin and erythromycin, can interfere with cyclosporine and tacrolimus. Always speak to your GP or medical staff about whether the antibiotic you have been prescribed is safe to take with your immunosuppressant medication before starting your course.
Renal impairment means that your kidneys are not functioning normally. One of the major complications that can follow a liver transplant is gradual loss of kidney function. Renal impairment means that your doctors might need to take more blood tests or to change the doses of your immunosuppressants more frequently. It may be reversible if doctors can diagnose it early enough, so it is important that problems are identified quickly and treated properly.
What causes renal impairment?
The general effects of calcineurin inhibitors (CNIs) cyclosporine and tacrolimus can weaken your kidneys, through reducing blood flow and causing a type of fibrosis to occur. To treat this and prevent the kidney function getting worse, doctors will reduce the dosage of your immunosuppressant and prescribe other effective but less toxic drug combinations. Immunosuppressants such as sirolimus and mycophenolate work differently to calcineurin inhibitors and do not affect kidneys to the same degree. These may be used instead of or in combination with a lower dosage of CNIs.
Immunosuppressant drugs reduce the body’s ability to find and destroy abnormal cells that can lead to the development of malignancies, or cancers. People are now surviving much longer after transplantation and therefore malignancies are becoming a more common and increasingly significant complication. This is partly due to the increasing age of the transplant population. For this reason, it is important that you take precaution to reduce the chances of developing cancers or to enable early detection of malignant changes.
The most common malignancies are:
These are disorders such as lymphomas and leukemia 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.
Exposure to the sun can damage your skin and increase the chances of developing skin cancer. It is important to cover up when out in the heat of the day (typically between 11am and 3pm, when UV rays are strongest), and to wear 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 though screening programs can prevent the development of cervical cancer. 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 colonoscopy examination every year.
Commonly known as 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 liver conditions
Hepatocellular carcinoma (HCC)
HCC is a primary liver cancer that is becoming common in people with hepatitis C infections. People with a background of chronic hepatitis B, haemochromatosis, autoimmune liver disorders or alcohol-related 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 the best treatment to stop tumors returning. This is, provided that tumors are small (no larger than 5 cm in diameter) and you have no more than three (no larger than 3 cm) before your transplant. If you have a transplant for HCC, your medical team will discuss with you the risks of HCC returning after a transplant.
People who have undergone liver transplantation 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.
Good cardiovascular health is essential to allow for the most effective use of the immunosuppression. Both you and your doctors must monitor the following risk factors and work to improve your cardiovascular health as much as possible.
The factors are:
- Your age, sex, height and weight
- Whether you smoke
- Hypertension (high blood pressure)
- Having diabetes before your transplant
- Family history of cardiovascular disease
- Any medication you are 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 of hypertension and hyperlipidemia (excessive blood fats), weight gain and type 2 diabetes.
After your transplant 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 will be encouraged to increase your activity level and do some gentle exercise. Physical activity post-transplant helps improve cardiovascular fitness, strengthens your body and, just as importantly, boosts your mood.
The results of transplants are improving due to advances in antiviral drugs that keep the infection under control, and stop reinfection of the new liver. It is essential that you get vaccinated against hepatitis A and B as this will offer you lifelong protection from these forms of the virus. Most patients with hepatitis C are now treated and cured while on the waiting list, and all available therapies can be given after transplant.
Life after Transplantation
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 rejection, infections, recurrent disease such as primary biliary cholangitis (PBC) or cancer and problems in other parts of the body that can take several years or decades to unfold.
Your transplant team will take you through what you can expect when you get home. Once you are at home you should be contacted by your transplant coordinator who will see how you are coping. You may need to return to the transplant clinic every week or fortnight for the first couple of months, and then once a month for many months.
When you first get home, it is normal to feel anxious and disorientated. You may also feel very tired. This is normal. If you have any worries contact the transplant team or your transplant coordinator.
Medical ID bracelets/cards: It is advisable to get yourself a medical ID bracelet or card after your transplant to carry with you at all times. This will ensure that medical professionals or members of the public are aware of your transplant, and any action that needs to be taken, should there be an emergency. As transplantation is a complex procedure with complex aftercare, a card, which can hold more information and be kept in your wallet or purse, is a good alternative.
Work and education: How much time you need to recover varies from person to person, and can range from six weeks to six months. If you can, talk to support personnel at your place of work or study to see if you can reduce your hours so that you are better able to pace yourself, and regain your strength. Of course, this may not always be practical. If you’re unable to work, or are facing financial difficulties because of time off to recover, seek help from your transplant team, who can put you in touch with social workers and other professionals who can help.
Driving: Being able to drive again depends on your individual recovery, and could take from six weeks to several months. If you had hepatic encephalopathy (confusion and memory problems) before your transplant and were not able to drive, you need to complete a short assessment in order to be passed fit to drive again.
Exercise and diet: While you’re still in hospital, the physiotherapists will give you a gentle exercise plan. This will help you with your recovery and should be built upon slowly. Your abdominal muscles will be weak after transplant, and for the first three months you must avoid heavy lifting, strenuous abdominal exercise, heavy housework, gardening and contact sports.
You can swim only once the wound has fully healed. Walking is often the best form of exercise for patients to build up their fitness gently after transplant. It’s great motivation to regain your fitness and get back on your feet. Most people find that their appetite returns after a liver transplant and may begin to put on weight. Some of this is due to the immunosuppressant medication, particularly prednisolone. In around a third of people this post-transplant weight gain is significant.
To stay at a healthy weight, it is important to reduce your consumption of simple carbohydrates, such as food and drink that is high in sugar. Eating complex carbohydrates, such as cereals, vegetables, wholegrain pasta, bread, rice and potatoes is a healthier choice. It is also helpful to restrict how much fat you eat, not just to limit the weight gain but also to help control your cholesterol levels.
It is essential to eat enough protein to enable your wounds to heal and build muscle; you may be advised to eat roughly 80g a day of protein, divided over several meals.
Many people who have general health problems before a transplant, including memory impairment, slow reactions, anxiety and depression, find that the transplant often help these considerably. It is important to have good support from family or friends around you after a liver transplant as it’s very common to experience a whole range of emotions following the procedure, although studies show that quality of life is greatly improved.
Women will find that post-transplant, their periods are disrupted but will return to normal within two to eight months. Some medications stop periods occurring altogether, but this doesn’t mean you can’t get pregnant, so do use appropriate contraception. You can resume a normal sex life as soon as you feel ready post-transplantation, although bear in mind the trauma to the body after transplantation can affect sexual function. If you have any problems or concerns you should talk about these with your transplant team when you attend the 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. This is because pregnancies must be carefully planned if you have had a transplant.
Some medications (particularly mycophenolate mofetil) can harm the unborn baby, so the doctors might want to alter your medication regime before you become pregnant. In general, it is suggested that you wait at least 12 months post-transplant before attempting to conceive.
Both men and women have a higher risk of contracting sexually transmitted infections if on immunosuppressants, so take extra care to practice safe sex.
Smoking and Alcohol
Alcohol is processed by your liver and, as a result, it can be dangerous for anyone who has had a liver transplant to consume any alcohol. Your new liver might not be able to break down alcohol as effectively as your own liver because of the immunosuppressant drugs you are taking. This means that even very small amounts of alcohol can damage your transplanted liver in quite a short period of time. This will be reinforced by your transplant team and it is likely that you will have to sign an agreement to abstain from alcohol for the rest of your life before being placed on the transplant list.
Smoking is dangerous to everyone’s health. Smoking can increase the severity of liver damage and increases your risk of developing a cancer after transplant. People with liver disease are more vulnerable to infection and to poor health overall, so smoking or exposure to passive smoking is not advisable. If you smoke, speak to your doctor about what help is available with cutting down and giving up.
Many complementary and alternative medicines available suggest they can ease the symptoms of liver disease. Before taking any medicine, you should check with your doctor that it is safe to do so as most of these are processed by the liver, so they can be toxic to people with liver problems. Some can damage the liver and make you more severely ill. At present, healthcare professionals are not clear on the role and place of some complementary medicines in managing liver disease; research is needed on their use.
Licensing has been introduced for some traditional herbal medicines however; many herbal products are not classified as a medicine so there is no regulation of the product. This means you cannot be sure how much of the active ingredient you are getting or how pure it is. Unregulated products are not monitored or assessed for how effective or safe they are. Some remedies can damage the liver and make you more severely ill.
It is wise to be cautious about the claims made for herbal remedies, particularly those advertised on the internet, as they can offer false hope. It is important to discuss the use of these remedies with your doctor before taking them.
Some people choose to use complementary therapies alongside their conventional medical treatment, both to ease symptoms and emotional wellbeing. Such therapies may include massage, aromatherapy, meditation or acupuncture.
To ensure your chosen therapy does not adversely affect your health or medical treatment, you should discuss it with your doctor. Make sure your practitioner is registered with an accredited body; your doctor may be able to refer you to a locally recommended practitioner. Always tell your practitioner about your medical condition/s as some types of therapy may not be suitable for you, so do check first.
It may take a while to get used to your ‘new’ life, and this is completely normal. Remember there is plenty of help available, whether you need general lifestyle advice or support in the ongoing management of substance abuse.
AFP – alpha-fetoprotein, a protein produced by liver cells normally found only in tiny traces in your body. The AFP blood test is a common test for liver cancer.
Antigen – a foreign, invading protein. When recognized by the body as foreign, the body’s immune defense will react to the antigen by producing antibodies.
Antibody – a specific immunoglobulin (protein) produced by your body as part of a defense reaction against an invading substance (antigen).
Autoantibodies – abnormal antibodies that attack your own body tissues because it has mistaken them as foreign.
Blood markers – substances measured in blood which may increase if infection or disease is present or suspected.
Blood serum – the clear, liquid part of your blood. Serum will separate from blood during clotting.
Cholestasis – a condition where the flow of bile from the liver is reduced.
DNA – deoxyribonucleic acid, the genetic material of cells carrying the instructions for making up our bodies.
ELISA – enzyme linked immunosorbent assay, a biochemical test used to detect the presence of an antibody or an antigen in a sample.
Enzyme – a substance, usually a protein, produced by the body to help speed up a chemical reaction (which can be measured with liver blood tests).
GGT – y-Glutamyltransferase, a liver enzyme in your blood that is measured to check for liver damage.
Hepatic – anything relating to the liver.
Hepatitis – any inflammation of the liver is known as hepatitis, whether it is caused by a virus or not. A sudden inflammation of the liver is known as acute hepatitis. Where inflammation of the liver lasts longer than six months the condition is known as chronic hepatitis.
Hepatocyte – a liver cell.
Hepatologist – a doctor who specializes in liver disease.
Immunoglobulins – also known as Ig, these are large proteins that act as antibodies found in body fluids and cell tissues. They will bind to invading organisms, such as bacteria or viruses, to destroy them.
Inflammation – the first response of your immune system to infection or injury, usually noticeable by pain, swelling or tenderness.
Metabolic – relating to the break down and processing of substances in your body for growth and vitality.
Pathogenesis – the development of a disease or illness.
Pathological – relating to or caused by a disease.
Protein – a large molecule made from amino acids (peptides) required for the structure and working of your body’s cells, tissues, and organs. Most proteins are made in the liver.
RNA – Ribonucleic acid plays an important role in translating the genetic information (DNA) into protein production (synthesis).
Seroconversion – a change in your blood test so that something related to the virus appears. This may be an antigen, an antibody or the virus itself.
Stent – a small, thin wire-mesh or plastic tube used when treating obstructions in the bile ducts. Where there is a narrowing (stricture) in the bile duct the doctor will insert a stent to open up the duct to keep it from collapsing.
Tumour markers – substances found in blood, urine or body tissues which may increase if cancer is present or suspected. Alpha-fetoprotein (AFP), for example, is a protein that is a tumor marker for liver cancer.
Virus – a microscopic particle that infects living cells by getting inside them and reproducing (replicating). Viruses cannot reproduce by themselves and can only multiply from within the cells of their living host.