Facts about liver transplantation
By the time you discover you need a transplant your liver might begin to fail and your quality of life may be very poor. You may have experienced the following symptoms:
● loss of appetite
● generally feeling unwell and being tired all the time
● feeling sick and being sick
● very itchy skin
● loss of weight and muscle wasting
● enlarged and tender liver (you may feel very tender below your right ribs)
● increased sensitivity to alcohol and drugs (medical and recreational)
● yellowing of the skin and whites of the eyes (jaundice)
● swelling of the lower abdomen, or tummy (ascites), or the legs (peripheral oedema)
● fever with high temperatures and shivers, often caused by an infection
● vomiting blood
● dark black tarry stools (faeces) or pale stools, associated with cholestatic disease
● periods of mental confusion.
If your transplant is successful, not only should these problems clear up but you will have a longer life expectancy.
When a suitable donor is found the hospital will contact you. This can happen at any time, day or night. You will either be offered
transport to the hospital or you can choose to make your own way there.
You must stop eating and drinking immediately as soon as you receive the phone call. If you have diabetes, tell your transplant coordinator.
When you arrive at the hospital you will be taken to a ward where your doctor will go through your medical history and you will have a chest X-ray and an ECG. You will be required to wash with an antiseptic soap in readiness for the operation. An anaesthetist will give you an injection, called a pre-med, to help you relax. A small needle, called a canula, will be put into the back of your hand or your wrist. This will help the anaesthetist give you the drugs for the operation. You will then be taken to the operating theatre where any friends or relatives will have to leave you. At this point, you will be connected to several machines to measure your heart rhythm and blood pressure and the anaesthetist will put you to sleep.
Liver Transplantation Frequently Asked Questions (FAQs)
As now, your family doctor or referring consultant will decide if a transplant will be of benefit to you. Priority is always given to those patients on the ‘super urgent’ list (this list is for very sick patients expected to die within days without a liver transplant).
Most people who undergo liver transplant have a chronic liver disease which is limiting their life expectancy. Without a transplant they may only have a few years to live. Other patients have a very poor quality of life due to the symptoms of liver disease. For them the aim of the transplant is to restore their health and improve their quality of life. In this situation, liver transplant is offered only if all other forms of treatment have failed.
Before the new scheme was introduced, patients with a liver disease were assessed on their need for a liver transplant based on their UKELD score (United Kingdom Model for End Stage Liver Disease). Clinicians calculated this score by looking at 4 different patient characteristics from the liver patient.
The new scheme is designed to be more in-depth and takes into account 7 characteristics from the donor; these donor characteristics are then ‘matched’ with 21 patient characteristics. The patient with the best match will be shown at the top of the list and will have the highest transplant benefit score.
The TBS predicts which patient will benefit the most from the transplanted liver – who will live the longest with the transplant, but also who can survive the longest on the list without receiving a transplant and is, therefore, able to safely wait a while longer before being offered a liver transplant.
Yes – those livers from brain stem dead donors have less damage than a liver from a donor following circulatory death and this is due to how the liver is retrieved; and obviously a liver from a young and previously fit donor with an isolated head injury will be a better liver than one retrieved from an elderly donor who smokes and who has diabetes.
It’s not possible to predict accurately how long you will need to wait for a transplant. Each case is different and the new scheme is designed to ensure that any liver that becomes available is matched to the best recipient depending on the Transplant Benefit Score. As stated above, priority is always given to those patients on the ‘super urgent’ list (this list is for very sick patients expected to die within days without a liver transplant).
Yes, waiting time accrued on the current list will be carried over into the new scheme.
Do I have a better chance of a liver transplant if I Iive in a particular area or am being seen at a particular hospital?
No, the new scheme is a national offer scheme. All patient data is held centrally and each time a liver becomes available the system generates a ‘matching run’. The patient with the best match for the available liver will be offered the organ – regardless of location.
The change to the new scheme will be seamless for all patients; your transplant centre has already supplied the information needed to work out your TBS for any liver being offered for transplantation. Your centre will update your information any time there is a change in your circumstances, but must also do so every three months. Therefore, it is very important that you attend your clinics on a regular basis, so that your data is current and accurately reflects your condition.
The computer will produce a matching run for variant syndrome patients with a frequency based on the statistical incidence of patients registered as variant syndrome patients. This currently stands at 10% of patients on the transplant waiting list. Therefore, on average, around 10 in every 100 matching runs will be for variant syndrome patients. These recipients will be ranked in the offering sequence according to how long they have been registered on the waiting list.
The way the system works is not centre driven. The Transplant Benefit Score uses 7 characteristics from the donor; these donor characteristics are then ‘matched’ with 21 patient characteristics. The patient with the best match will be shown at the top of the list and will have the highest transplant benefit score, regardless of geographical location.
Organ donation is confidential, so while you may be given some details about the person donating their organs you will not be given any identifiable information and you will not be told who they are. You may have different feelings about your transplant, from relief to fear. You may well feel sad for the person who has died and for their grieving family. It is important to remember that organ donation is something positive that can come out of what is otherwise a tragic event: this can bring a lot of comfort to the bereaved family.
Whatever your thoughts are now, you may feel differently after your transplant. After your transplant you may wish to write to the donor’s family. There is no rush to do this; in many ways it is better to wait until you are out of hospital and well on the road to recovery before you write. This also allows the family to come to terms with their loss and to grieve.
For more information please see:
- UKELD a scoring system used to predict prognosis for patients with a liver disease, it takes into account INR, (international normalised ratio), Serum Creatinine, Serum Bilirubin and Serum Sodium.
- Donor characteristics include age, cause of death, BMI, diabetes, donor type, blood group and split liver criteria.
- Patient characteristics include age, gender, Hepatitis C, disease group, creatinine, bilirubin, INR, Sodium, Potassium, Albumin, renal support, inpatient status, previous abdominal surgery, encephalopathy, ascites, time on waiting list, diabetes, maximum AFP level, maximum tumour size, two tumours, three or more tumours those patients with variant syndrome disease – this group of patients will now have a better prospect of receiving a transplant match.
Liver transplant tests
Before having a liver transplant you will need to have a number of tests to help the doctors decide whether this operation is the best treatment for you. You may already be familiar with some of these tests from your diagnosis phase. You may also have to repeat a number of tests during your assessment for a transplant.
This period of assessment, which lasts around five days, can be a difficult time but it is important that the doctors see that you are fit enough to have the operation. It is also important for the doctors to be sure that you are fully aware of the commitment that you need to make to your own healthcare after the operation.
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 commiting to giving up alcohol for the rest of your life.
Sometimes the tests will show that you may have other medical conditions which will need to be treated before a transplant can take place.
You may find it helpful to view the following workbook developed by Leeds Transplant team: Alcohol and the liver workbook
During the assessment period you will probably be feeling very unwell. Being poked and prodded is probably the last thing you want. The doctors are aware of this and understand that you will have some bad days when you are not feeling your best. It is important to talk honestly about your feelings and concerns with the medical staff.
After all the tests have been done, the transplant team will discuss whether a transplant is the most suitable course of treatment for you. If the transplant team do not think that a transplant is the best option at this stage, you will be given another course of treatment.
During your assessment many different healthcare professionals may ask very similar questions. While this may seem repetitive and boring, you must remember that it is very important that you answer all the questions as truthfully and fully as possible. These interviews will help the transplant team decide whether you are a suitable candidate for a transplant.
Your doctors need to consider both your physical and your mental health because a liver transplant is major surgery that you need to be able to cope both physically and mentally.
Blood tests are used to understand your general health and find out if there are any factors which can cause problems in people with transplants. People with cirrhosis have a much higher chance of getting liver cancer (hepatocellular carcinoma, or HCC), therefore your test will also check for cancers.
A chest X-ray uses radiation to form a picture of your heart and lungs so that your doctors can tell whether these organs are working well.
Lung function tests are used to check how much air is moving in and out of your lungs.
Blood oxygen test
In order to measure the amount of oxygen in your blood, doctors will take a small amount of blood from a vein in your wrist.
An electrocardiogram, commonly called an ECG, is used to find out how your heart is working. Leads are attached by pads to your chest, arms and legs and linked to a machine which measures the electrical activity in the heart.
Echocardiogram and stress echo
An echocardiogram is another heart test and is used to assess the size of your heart and its ability to pump blood properly. The procedure is similar to ultrasound where a probe, like a microphone, is moved by hand over your heart area to send sound waves through your skin. It will record any reflected sound waves and send them to a computer which is able to process the waves as pictures. In addition to this procedure you will be required to perform a physical exercise, such as running or walking on a treadmill, so that doctors can compare your heart action following activity.
During a coronary angiography a dye will be injected into your arteries and an X-ray will be taken. This helps doctors understand how healthy your arteries are and whether there are any problems that could make the transplant too risky to carry out. This test is only required in selected cases where there are risk factors such as coronary disease, age (over 60), smoking and hypertension (high blood pressure).
Kidney function tests
Problems with the kidneys are a common side effect of liver failure. Tests for kidney function include blood and urine tests.
Ultrasound is the same technology used to confirm all is well in pregnancy. Gel will be applied to your skin, which may feel slightly cold. A probe will be moved across your skin to send sound waves into the liver area. The reflected sound waves, or echoes, are picked up through the probe and used to build a screen image of the liver’s condition. This painless test is often used to check the condition of the bile ducts.
CT scan (computerised tomography)
A CT scan uses special X-ray equipment to give doctors a detailed picture of your internal organs and body tissue, particularly the chest and abdomen. To help with this you will be given a dye which you might either swallow or have injected into your veins. You will then lie on a bed which will be passed through a scanner.
MRI (magnetic resonance imaging)
An MRI scan uses magnetic fields to create a computerised image of the body that is even more detailed than a CT scan. As with a CT scan, you will be asked to lie on a bed which will be passed through a scanner.
A liver biopsy is a process where a tiny piece of the liver is taken for study. A fine hollow needle is passed through the skin into the liver and a small sample is withdrawn. The test is usually done under local anaesthetic and may mean an overnight stay in hospital, although some people may be allowed home later the same day. As the test can be uncomfortable with a small risk of internal bleeding or bile leakage, a stay in bed of at least six to eight hours is required.
During an endoscopy a very thin tube with a tiny camera is lowered down your throat and into your stomach. This is usually done under local anaesthetic. Endoscopy is used to find out whether the tiny veins (varices) in your stomach and gut are damaged or bleeding.
Liver transplant webinar
Watch the British Liver Trust webinar on liver transplantation, featuring advice and guidance from a transplant surgeon, co-ordinator and hepatologist along with a patient case study.
National liver offering scheme
The National Liver Offering Scheme was introduced by NHS Blood and Transplant (NHSBT) in March 2018. It is a way of matching donor livers to patients on the liver transplant waiting list on a national basis rather by region. The scheme also introduces a new scoring system called the Transplant Benefit Score (TBS). Find out more here: https://britishlivertrust.org.uk/new-system-liver-transplant/
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