Overview

Assessment

If your doctor thinks you might need a liver transplant, you'll need to have an assessment before you can be put on the waiting list.

This strict assessment is needed to check that a liver transplant is suitable for you and to determine how urgently you need one.

Where it's done

The assessment will be carried out at a liver transplant unit.

How long it takes

The assessment process usually takes about 5 days.

You may need to stay in hospital during this time, or you may be able to go home at the end of each day.

What happens

The assessment involves talking to liver transplant specialists and having tests to check your liver and general health.

You may be asked about:

• your symptoms and how they affect your daily life
• your medical history – including any other physical or mental health conditions you have
• if you have a history of drinking or drug problems

It's important to answer these questions as best you can.

Tests you might have include:

• blood tests
• X-rays and scans
• heart tests – such as an electrocardiogram (ECG)
• breathing tests – such as spirometry
• an endoscopy – a thin tube with a light and camera on the end is passed down your throat

At the end of the assessment, the liver transplant team will decide if a transplant is suitable.

If you're suitable for a transplant

If the transplant team decide you are suitable for a liver transplant, they'll ask if you want to be placed on the waiting list.

This is a list of everyone in the UK who needs a liver transplant.

It's up to you to decide if you want to go on the list. If you don't need a transplant urgently, you can take time to think it over before making a decision.

Sometimes you may be suitable to have a transplant but too well to go straight on the waiting list at the time you were assessed. If this happens, you'll be monitored to check if your situation changes.

If you're not suitable for a transplant

Sometimes the transplant team may decide a liver transplant isn't suitable – for example, they may think that it has a low chance of being successful.

If this happens, you may be asked:

• to have regular check-ups to monitor your condition – the assessment can be repeated if your condition changes
• if you want a second opinion – another transplant team can do an assessment to see if they agree with the original decision

Waiting list

Most people who need a liver transplant are placed on a waiting list until a suitable liver becomes available.

This is because there are more people who need a transplant than there are donor livers.

If you're well enough, you stay at home while you're on the waiting list. Be prepared to get a call at any time saying that a liver is available and asking you to come into the liver transplant unit.

Waiting times

How long you'll wait for a liver can vary quite a lot. If you need an emergency transplant, you may only have to wait a few days.

The average waiting time for a liver transplant in the UK is:

• 65 days for adults
• 77 days for children

It may be possible to have a transplant sooner if a relative or friend is willing and able to do a living donation (where part of their liver is removed and given to you).

What to do while on the list

While you're on the waiting list, it's important to:

• eat healthily
• exercise regularly, if you can
• avoid smoking
• make sure all your vaccinations are up to date
• have regular dentist check-ups
• use contraception to avoid becoming pregnant
• prepare an overnight bag to take to hospital at short notice
• make arrangements with your friends, family and employer so you can go to the transplant unit as soon as you get the call

Your transplant team will advise you about whether you can drink any alcohol while on the waiting list. Ask your doctor if you can drive, as some liver problems can affect your ability to drive.

Tell the transplant unit if:

• your address or contact details change
• you're planning to go away for a few days
• your health changes – for example, you get an infection

Coping with being on the list

Living with a serious liver condition can be strenuous enough, and the added anxiety of waiting for a liver to become available can make the situation even more difficult.

This can have an effect on both your physical and mental health.

Contact a GP or the transplant unit for advice if you're struggling to cope emotionally with the demands of waiting for a liver transplant.

You may also find it useful to talk to people in the same situation. The British Liver Trust website has a list of support groups. You can also join the HealthUnlocked liver disease community.

What to do when you get the call

When you're contacted:

• make your way to the transplant unit as quickly as you can
• do not eat or drink anything

Sometimes the call may be a false alarm, as tests may later find the liver isn't suitable for transplant. You'll be told as early as possible if this is the case.

If the liver is suitable, you'll have some tests at the transplant unit to check you're well enough for surgery. You'll then be given general anaesthetic and taken into the operating room.

The operation

A liver transplant will be carried out as soon as a suitable donor liver becomes available for you.

Before surgery

When you arrive at the transplant unit, you'll have some tests to check you're well enough to have surgery.

You'll then be given general anaesthetic (which puts you to sleep) and then taken for the operation.

The procedure

During the operation, the surgeon will:

1. make a large cut (incision) that goes across your tummy and up towards your chest
2. remove your damaged liver and replace it with the new one
3. connect the new liver to your blood vessels and bile ducts
4. close the incision with clips or stitches

The procedure usually takes up to 8 hours, but can take longer.

After surgery

After surgery, you'll wake up in an intensive care unit (ICU).

While in the ICU, you may have tubes in your:

• mouth (to help with breathing)
• nose (to provide fluids and nutrients)
• wound (to drain excess fluid)

These will be removed after a few days and you'll be moved to a regular hospital ward.

You'll usually be able to go home within 2 weeks.

Living with

Recovering from a liver transplant can be a long process, but most people will eventually be able to return to most of their normal activities and have a good quality of life.

It can take up to a year to fully recover, although you'll normally be able to start gradually building up your activities after a few weeks.

Check-ups

You'll have regular follow-up appointments to see how you're doing and check how well your liver is working.

These may be once a week to begin with, but eventually they may only be needed every few months or once a year.

Medicines (immunosuppressants)

To stop your body attacking and damaging your new liver, you'll need to take medicines called immunosuppressants for the rest of your life.

There are several different types of immunosuppressant medicine. They can all cause some unpleasant side effects, but never stop taking them without speaking to a doctor first.

Risks of immunosuppressants include:

• increased risk of infections
• kidney problems
• increased risk of some types of cancer, such as skin cancer

Food and diet

Most people won't need a special diet after a liver transplant.

A normal, balanced diet will help you recover and stay healthy.

Sometimes you might need extra help from a dietitian.

Alcohol

Whether you can drink alcohol after a liver transplant depends on the reason you needed a transplant.

If the previous problem with your liver was caused by alcohol misuse, you'll be advised not to drink alcohol again.

It may also be a good idea not to drink alcohol even if your liver problem wasn't alcohol-related, although in some cases it may be fine to do so in moderation.

Speak to your care team for advice.

Exercise

It's a good idea to get plenty of rest when you first get home from hospital.

When you feel able to, start off with gentle activities, such as walking, and gradually increase how much you do over time.

You may see a physiotherapist, who can advise you about exercises.

Avoid contact sports and swimming for several months until you have fully recovered, as there's a risk of picking up an injury or infection.

Sex and pregnancy

You can start having sex again as soon as you feel physically and emotionally ready.

Most women are still able to get pregnant after a liver transplant, but you should:

• avoid becoming pregnant for at least a year
• talk to your transplant team if it's been more than a year and you want to plan a pregnancy
• tell your GP or transplant team if you get pregnant at any point

Your medicine may need to be changed and you may need extra monitoring if you become pregnant after having a liver transplant.

Driving

You'll probably need to avoid driving for up to 2 months.

This is because the transplant procedure and immunosuppressant medication can affect your vision, reaction times and ability to perform emergency stops.

Speak to your GP or transplant team first if you feel ready to drive again. It's also often a good idea to inform your insurance company of your situation.

Going back to work

How long you need to be off work will depend on your job and how quickly you recover.

Some people will be able to return to work after 3 months, although others may need more time off.

Your transplant team can advise you about this.

When to get medical help

Contact your GP or transplant team if you get:

• flu-like symptoms, like a high temperature (fever) or chills
• sickness and/or being sick (vomiting)
• diarrhoea
• yellow skin or eyes (jaundice)
• pale poo or dark pee
• very itchy skin
• a swollen tummy or ankles
• redness, swelling, warmth or pus around your wound

These symptoms could be caused by an infection or a problem with your liver that needs to be treated quickly.