This section provides information about ADPKD (Autosomal Dominant Polycycstic Kidney Disease) including what it is and how it is diagnosed.

To find out more about the many ways we offer support for those affected by PKD, please see our Get Help page.

This section explains the common symptoms and complications associated with ADPKD, and how they may affect your health over time. You’ll find clear, practical information to help you recognise changes and understand when to seek further advice.

To find out more about the many ways we offer support for those affected by PKD, please see our Get Help page.

This section provides information about how ADPKD affects children, including early signs, diagnosis, and emotional support. You’ll find practical resources to help parents and carers understand the condition and support their child with confidence.

To find out more about the many ways we offer support for those affected by PKD, please see our Get Help page.

This section outlines the main treatment options for ADPKD, including medications, monitoring, and supportive therapies. It also covers how care may change over time, helping you understand the options available to manage your condition and maintain quality of life.

To find out more about the many ways we offer support for those affected by PKD, please see our Get Help page.

These tips are for parents and guardians of children with autosomal recessive polycystic kidney disease (ARPKD). They’re to help you and your child get the most out of appointments with their GP, kidney doctor and other healthcare professionals.

We have a separate guide for adults. See appointment tips for adults with polycystic kidney disease (PKD).

Doctor’s appointments can be stressful and worrying at times for both you and your child. You might sometimes come away confused or realize that you didn’t ask the questions you planned to.

Our tips below can help you to feel confident and get the most out of your appointments. This will help you to get your child the care, support and information they need to live well with ARPKD.

• Giving your child control and support
• Top tips for successful appointments
• Questions for children to ask at kidney check-ups

It’s good to help children play an active role in their health appointments, even when they’re young. This can help them feel in control of their health. It will also help them build the skills they’ll need to manage their ARPKD as they grow up.

How much your child can take part in, or lead, chats and decisions about their health will depend on their age and skills. You’ll need to judge what’s right for them. It might also help to chat to other parents and guardians of children with ARPKD in our ARPKD Facebook group.

By age 6, most children can answer questions about how they feel. Most teenagers can make choices about their care themselves, although they may want your support and advice.

You may be surprised by how much your child can manage on their own when given the chance. Equally, if your child doesn’t want to lead the chat, or begins to struggle, be ready to offer help. Encourage them over time to get more involved.

In the tips below, we give some ideas on how you can help your child feel confident and involved in appointments.

Prepare together

❑ Explain to your child what will happen.

• If they’re young, you could use a teddy or toy to act out a medical appointment or use colouring pages. Your hospital might have a video to explain things to children (see the links at the end of this page for examples).
• Give an honest answer if your child asks whether a procedure might hurt.

❑ Check whether your child has any new symptoms.

• Write them down together. How long have they had them and how often? How bad are they? How are they affecting your child’s life? Does anything make them better or worse?

❑ Check who your child would like to go to the appointment with (if there’s a choice).

• They might find that a particular relative is most reassuring for medical visits. Equally, older children may want to go on their own.

❑ Together, prepare a list of questions for the doctor.

• Choose the most important questions together, and who will ask them. If you have a lot to discuss, ask for a longer appointment. There’s a list of example questions to ask at kidney check-ups later on this page.
• For older children, respect their choice if they want to prepare this list alone.

❑ Are you happy with the appointment details? If not, request changes.

• If you want to change arrangements for the appointment, call to ask. The clinic will help if they can.
• Changes could include the doctor you see, whether the appointment is face-to-face, telephone or video, and the day and time.
• If you or your child need an interpreter, ask early for this to be arranged.

❑ Plan the trip so you don’t end up rushing.

• How will you get to the surgery or hospital? Is parking available and what is the cost? Plan your route with extra time for possible delays. If you have access needs, ask early for support to be arranged.
• Ask your child which snacks, drinks and activities they’d like to take for the journey and waiting room (for example: a game, book, video or colouring book). Younger children may like to take a favourite toy for comfort. Ask your child to help you pack these to help them feel involved and ready.

❑ For video and phone appointments, plan to be somewhere quiet, private and with a good signal.

• Think through the logistics of how you and your child will both be involved in video and telephone calls. Request a video call, if possible — this is an easier way for everyone to be involved. If a phone call is the only option, use a speaker phone if you can.
• Make sure your phone and computer have enough battery. For video calls, check you have the invite link and do a test run if possible. Is there a number you can call for technical support?

❑ If your child is going to have a test or procedure, make sure you prepare correctly.

• Read the letter carefully and follow any instructions given (such as your child not eating or drinking beforehand).
• The surgery or clinic might ask for a urine (wee) sample. Ask the receptionist if one is needed when you arrive. If so, you can plan the best time for your child to go to the toilet and drink more liquid if needed.
• If your child is worried by blood tests, chat to the surgery or clinic about what can help. For example, the clinic may have a play specialist who can help your child have a better experience. Or the clinic might be able to give you a numbing cream to put on your child’s arm before the appointment starts. This means less time waiting for the cream to work during the appointment.
• Contact the clinic beforehand if you’re unsure of anything.

❑ Collect any information the doctor has requested.

• When your child sees a specialist for the first time, they may want your child’s and family’s medical history.
• Make a list of the names and doses of any medicines, supplements and vitamins your child takes. If easier, you could take photos or take the packets with you.
• If you have extra information to share, get this ready. For example, you might have measurements of your child’s blood pressure or weight.

❑ Explain that you have some notes you’ll be using together.

• This can help you both to focus. Start with the most important points and tick things off as you go.

❑ Let your child answer and ask questions themselves if possible.

• This will help them to feel in control and build their confidence in managing their health. It’s okay to prompt your child or to ask if you can add extra details if things get forgotten. But try not to take over.

❑ Help your child to be open and honest about their symptoms and concerns.

• This might mean discussing things you or your child find embarrassing. For older children, respect their privacy and offer to leave the room if there are things they don’t want to discuss in front of you.

❑ Write down key details.

• It’s easy to forget details after an appointment, so write things down. If you prefer, ask if you can record the discussion on your phone. Some video call systems allow you to record the discussion (remember to ask first). You can also ask your doctor to print out useful information or provide a copy of your child’s notes, reports and letters.

❑ Check your child understands.

• Ask the doctor to repeat or explain things differently if either of you don’t understand.
• Encourage your child to ask questions when they need.
• Ask for a child-friendly leaflet or a website where your child can learn more.

❑ Ask about the benefits and risks of any treatments the doctor recommends.

• For example, how might a procedure or treatment help your child? How serious and common are the risks? Are there other options?

❑ Check when and how you’ll get your child’s test results.

• Who can you or your child contact if you don’t receive a letter or phone call when expected?

❑ Who can you or your child contact with questions?

• Is there a doctor or nurse who you or your child can contact by phone or email? Alternatively, how can you book a follow-up appointment?

❑ If you need a moment to chat to your child, say so.

• You might want to pause to get your child’s preferences and think things through together. For video calls, you could ask for a break (and press ‘mute’) to give you and your child a moment to talk.

❑ Check your notes.

• Have you covered everything? If you’re out of time but have more questions, ask for a follow-up appointment.

❑ Repeat key information back to the doctor to check you and your child understand correctly.

❑ Check how your child is feeling.

• Was there anything that worried them?
• Give them reassurance, support and love after the appointment.
• Check how they’re feeling a while later, when they’ve had time to think.

❑ Write down any new questions you and your child have.

• Help your child to write down new questions they (or you) have after the appointment. You may be able to ask them by telephone, video call or email. Or you could ask for a follow-up appointment.

❑ If your child’s symptoms worsen or they have side effects, tell the doctor.

• Contact the team to let them know. Contact details are normally on letters from the clinic.
• Don’t wait for your child’s next check-up if it’s not soon. Use NHS 111 for advice if your child has new symptoms and you’re unsure what to do.

❑ If you don’t receive test results or a referral when expected, call the surgery or hospital.

• Sometimes, results or referrals are delayed or overlooked. A gentle reminder can help. Remember to encourage older children to do this themselves — it may be daunting for them at first but it’s a useful skill to learn.

❑ If you or your child are unhappy about their care, give feedback or make a complaint.

• It’s your choice whether you do this, but it can help services improve. For GP surgeries, you could contact the practice manager or ask the receptionist how you can give feedback or complain. For hospitals, you could contact their Patient Advice and Liaison Service (PALS) to get started.

Here are some of the common questions people ask at kidney check-ups. We have written these for your child to ask, but you may need to ask some of these questions on their behalf, depending on their age.

About my test results

• How well are my kidneys working?
• How might my kidney health change in the next few years?
• Is my blood pressure okay?
• Do my test results show any changes?
• What does this word/result mean?
• Do we need to change my treatment?
• When is my next check-up?

• Do I need any treatments? What are the good and bad things about each one?
• Could I get unwell if I don’t have treatment?
• Could the treatment make me unwell by causing side effects?
• What side effects should I look out for? What should I do if I get them?
• What can help with any symptoms or side effects I get?
• How often should I take my medicine and what is the right dose?
• What should I do if I forget to take my medicine?

• How might ARPKD affect me at school and at home?
• How can I manage my ARPKD well so that it doesn’t affect my life as much?
• What foods and drinks are good for me?
• Are there any sports or hobbies that I need to be careful about doing?
• Are there more people who can help me manage my ARPKD? (You could ask to see a doctor who is an expert in what to eat, how to cope with your feelings, or how to manage pain, for example.)

• What is ARPKD?
• Genetic counselling and testing

For parents and guardians

• The NHS has advice on online GP consultations, how to have a video call, and feedback and complaints.
• Alder Hey Hospital has a leaflet giving hints and tips for parents on their child going into hospital.
• At Coloring Nation, you can download colouring pages for your child on many themes, including doctors and hospitals.
• Teens in Hospital is a guide for doctors about talking to teens, but parents may find it helpful too.
• InfoKID has information for parents and families of children with kidney diseases.
• The National Kidney Foundation has a list of common terms used by kidney doctors.
• Kidney Care UK has a good explanation of blood and urine test results.

For children

• Edge Hill University has a video for children about visiting hospital.
• The Teapot Trust has produced a video for children on having a blood test.
• What? Why? Children in Hospital has videos for children on blood tests, CT scans, MRI scans, X-rays and more.
• The NHS has information for children younger than 16 years on the rules about parents and guardians seeing their medical records.

All of our publications are based on references but these are removed for ease of reading on our webpages. A version of this webpage with references included is available upon request by emailing [email protected]

Written by Hannah Bridges, PhD, independent medical writer, HB Health Comms Limited. Expert review by Charlotte Futcher, Hypertension Clinical Nurse Specialist, Guy’s and St Thomas’ NHS Foundation Trust.

With thanks to all those affected by PKD who contributed to this publication.

Ref No: ARPKD.AT.V2.0
© PKD Charity January 2026
Latest updated: January 2026
Due for medical review: January 2029

Disclaimer: This information is primarily for people in the UK. We have made every effort to ensure that the information we provide is correct and up to date. However, it is not a substitute for professional medical advice or a medical examination. We do not promote or recommend any treatment. We do not accept liability for any errors or omissions. Medical information, the law and government regulations change rapidly, so always consult your GP, pharmacist or other medical professional if you have any concerns or before starting any new treatment.

If you don’t have access to a printer and would like a printed version of this information sheet, or any other PKD Charity information, call the PKD Charity Helpline on 0300 111 1234 (weekdays, 9am–5pm) or email [email protected].

The PKD Charity Helpline offers confidential support and information to anyone affected by PKD, including family, friends, carers, newly diagnosed or those who have lived with the condition for many years.

This information is for people with autosomal dominant polycystic kidney disease (ADPKD) who have symptoms caused by liver changes. It’s also for their families, friends and carers. Most people with ADPKD never need a liver transplant but a few do.

Find out here which people are offered a liver transplant, the risks and benefits, and other options.

• 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.

• Polycystic liver disease
• Kidney transplants and ADPKD
• Progression of ADPKD

• The British Liver Trust has information on liver transplants, life after liver transplant and a list of support groups. They also have a helpline run by specialist nurses: call 0800 652 7330 or email [email protected].
• NHS Blood and Transplant has online information on liver transplants and becoming an organ donor.
• The British Liver Trust has partnered with Health Unlocked to provide an online forum for people with liver disease. Keep in mind that very few people having a liver transplant have ADPKD.
• Carers UK (0808 808 7777) and the Carer Support Centre (0117 965 2200) provide information and support for people caring for others.
• The British Transplant Games is open to people who have had an organ transplant and take immunosuppressants. Ask your transplant clinic if you’re interested in joining or supporting their team.

All of our publications are based on references but these are removed for ease of reading on our webpages. A version of this webpage with references included is available upon request by emailing [email protected]

Written by Hannah Bridges, PhD, Independent Medical Writer, HB Health Comms Limited. Expert review by Dr Ahmed Elsharkawy, Consultant Hepatologist, University Hospitals Birmingham NHS Foundation Trust.

With thanks to all those affected by ADPKD who contributed to this publication.

Ref No: ADPKD.LT.V1.0
First published: © January 2026

Due to be medically reviewed: January 2029

Disclaimer: This information is primarily for people in the UK. We have made every effort to ensure that the information we provide is correct and up to date. However, it is not a substitute for professional medical advice or a medical examination. We do not promote or recommend any treatment. We do not accept liability for any errors or omissions. Medical information, the law and government regulations change rapidly, so always consult your GP, pharmacist or other medical professional if you have any concerns or before starting any new treatment.

If you don’t have access to a printer and would like a printed version of this information sheet, or any other PKD Charity information, call the PKD Charity Helpline on 0300 111 1234 (weekdays, 9am–5pm) or email [email protected]

The PKD Charity Helpline offers confidential support and information to anyone affected by PKD, including family, friends, carers, newly diagnosed or those who have lived with the condition for many years.