• Key facts
• How does ADPKD affect the liver?
• Will I need a liver transplant?
• The benefits of a liver transplant
• The risks of a liver transplant
• Thinking through the benefits and risks
• Being assessed for a liver transplant
• Finding a donor
• Having a liver transplant
• Do I have other treatment options?
• More information from the PKD Charity
• Information and support from others

• Most people with ADPKD have liver cysts by their mid-thirties. These liver changes are called polycystic liver disease (PLD).
• Most people don’t get symptoms from PLD and very few need a liver transplant.
• People with PLD only have a liver transplant if their PLD is causing big problems that can’t be treated in a different way.
• Most people who need a liver transplant have a much better quality of life after the operation. A few don’t.
• The operation has some risks, and sometimes the donated liver doesn’t work well.
• People who have had a transplant need to take medicines called immunosuppressants for life. These can cause side effects and new health problems.
• If your liver doctor (hepatologist) thinks a liver transplant might help you they’ll explain why.
• If you want to go ahead, they’ll refer you to a transplant centre. A transplant team will give you more information and do tests to check whether a transplant could help you.
• People with PLD tend to wait about 1 to 3 years for a liver transplant.
• You’ll need to stay in hospital for 1 to 2 weeks (possibly longer) after the operation.
• It takes a few months to recover at home.

Most people with ADPKD have liver cysts by their mid-thirties. These liver changes are called polycystic liver disease (PLD).

Your liver is likely to still work well if you get these cysts. You probably won’t get symptoms or need treatment.

A few people with PLD get liver problems such as:

• a large liver which can cause pain, feeling breathless, and problems eating
• an infected cyst
• a bleeding cyst
• a squashed vein in the liver

We explain PLD symptoms on our web page on polycystic liver disease.

Most people with ADPKD and PLD never need a liver transplant. A few people need a liver transplant because their PLD is causing severe problems that can’t be treated in a different way.

Most people with ADPKD and PLD who have a liver transplant are women. PLD tends to affect women more greatly and at a younger age than men. This is because the female hormone oestrogen increases the growth of liver cysts.

A liver doctor (hepatologist) and transplant surgeon will usually only recommend a liver transplant if:

• You have a very large liver causing symptoms that are badly affecting the quality of your life.
• Or, you have ongoing liver complications (see below).
• And treatments so far have not worked.
• And you have no other treatment options.
• And there are no reasons a liver transplant wouldn’t be right for you.

Liver complications that a liver transplant can help include:

• cyst infections that keep coming back
• blocked blood flow in large liver veins
• fluid collecting in your abdomen (tummy)
• bleeding from swollen blood vessels
• not getting enough nutrients from food, making your body weak

If you also need a kidney transplant, you might have this at the same time.

A liver transplant cures PLD. Most people feel much better once they’ve recovered from the surgery.

Most people get fully back to ‘normal life’ after getting a liver transplant. They have a similar quality of life to people without PLD.

In one study, 9 out of 10 people with PLD reported benefits such as:

• big improvements in symptoms such as being sick, feeling tired, difficulty sleeping, not feeling hungry and depression
• feeling more attractive and more interested in sex

However, 1 in 10 people said the quality of their life got worse after a liver transplant. So, although a liver transplant is likely to improve your quality of life, your transplant surgeon can’t promise this.

Most liver transplants are very successful. But they come with some risks. These include risks from the operation, from the donated liver not working, and from medicines called immunosuppressants. We explain these below.

These problems usually get better with treatment. Less often, they can become severe or life-threatening.

We understand that it’s scary to read about the risks of having a transplant. We want to be honest with you though. It’s a good idea to ask your liver specialist and transplant surgeon to explain each risk to you. They can talk you through which risks might be smaller or greater for you.

Your transplant team will monitor you closely during and after your surgery. In this way, they can spot and treat problems quickly.

It’s common to have a complication during or after transplant surgery.

These problems can include:

• more bleeding than expected
• leaks of bile (a fluid made by the liver that helps you digest food)
• a blockage in the tube that carries bile to your gut
• a blood clot in the liver
• an infection

Your surgeon can explain whether your surgery is lower or higher risk than average. For example, if you’ve had liver surgery before, the operation can be trickier. This is because you may have scar tissue binding your liver to nearby tissues. The medical term for this is ‘adhesions’.

Sometimes, problems after surgery stop the donated liver from working. The liver can also stop working if your body fights it. This is called ‘rejection’.

To reduce the chance of rejection, you’ll need to take medicines called immunosuppressants for life. These dampen your immune system.

If your body starts to reject your liver, this can usually be stopped with higher doses of immunosuppressants. It’s unusual for the liver to stop working altogether. But if this happens, you’ll need another transplant urgently.

Immunosuppressants can have side effects.

They can also increase your risk of some other health problems:

• infections
• some cancers
• high blood pressure
• diabetes
• unhealthy levels of lipids (fats) in the blood
• weak bones (osteoporosis)

Your treatment team will explain ways to reduce these risks. Treatments are available for these problems.

It can be hard to weigh up the benefits and risks of having a liver transplant. It’s an important decision, so give yourself plenty of time to think it through.

Ask your transplant team to explain all the benefits and risks carefully.

To help you decide whether to go ahead, you may want to:

• ask your liver doctor how your PLD is likely to affect you if you don’t have a liver transplant
• check if you have any other treatment options
• speak to your family and friends
• talk to other people with ADPKD who have had a liver transplant
• ask for a follow-up appointment to discuss things again after you’ve had time to think

You can connect with people with ADPKD through our support groups and Facebook groups.

Our helpline is open 9:30am to 5:00pm, Monday to Friday, except bank holidays, on 0300 111 1234. You can also contact us on Facebook messenger or email [email protected].

Your liver doctor will start an assessment if a liver transplant might help you.

This will include:

• a review of your liver symptoms over recent years
• scans to measure your liver’s size
• questions about the quality of your life and symptoms
• blood tests and a scan of your muscles to see if your body is getting enough nutrients

If you both agree that a liver transplant might be right for you, your liver doctor will refer you to a transplant centre.

A team at the transplant centre will explain the process and do further checks.

They will:

• assess your liver symptoms
• check you for other health and mental conditions (including heart and lung problems)
• test you for some infections, such as hepatitis
• ask about alcohol and illicit drug use

They’ll also check your blood type. This is to match you with a donor.

You can learn more about these checks on the British Liver Trust and NHS Blood and Transplant websites.

To decide whether you can have a liver transplant, the transplant team will consider:

• the results of all your tests
• what problems PLD is causing you
• whether your PLD can be treated any other way

To help, it’s important that you and your liver doctor explain clearly how PLD is affecting you.

If the transplant team says you can have a liver transplant, the next step is finding a donor.

If the transplant team says you can’t have a liver transplant, they’ll explain why. Sometimes, people need other treatments first.

Most people have a liver transplant from someone who has died. However, if a friend or relative is willing and a good match, they might be able to donate part of their liver to you.

People with PLD tend to wait about 1 to 3 years for a liver transplant. This is longer than the wait for people needing a liver transplant for other reasons.

This is because the service puts first those people who need a liver transplant most urgently. To be fair, the service also factors in how long people have waited.

The British Liver Trust has more information on waiting for a transplant.

Having a liver transplant is major surgery that takes a few hours. You’ll need to stay in hospital for 1 or 2 weeks afterwards if things go well. You might need to stay in hospital longer if you get any complications.

It takes a few months to recover at home.

You can find out more about the surgery, risks and benefits, and recovery on:

• The British Liver Trust web page ‘The transplant operation’
• NHS Blood and Transplant web sections ‘At the transplant centre’ and ‘Living with a liver transplant’

Your liver doctor and transplant surgeon can give advice specific to you.

Most people with ADPKD and PLD never need a liver transplant.

If your liver doctor and transplant surgeon recommend a liver transplant for you, this usually means you don’t have other treatment options. Maybe you’ve tried other treatments already and they failed. Or maybe other options are not right for you.

This doesn’t mean you must go ahead with the surgery. You might be able to manage your symptoms with medicines and other treatments. This will depend on the problems PLD is causing you.

Ask your liver doctor questions such as:

• How is PLD affecting my health now?
• How might my health and life change if I do versus don’t have a liver transplant?
• Do I have any other treatment options?
• What outcome might I have with each treatment option?

You can read about other treatments for PLD on our page on Polycystic liver disease.