Introduction to dialysis

If you have ADPKD, your kidneys’ ability to filter your blood (known as kidney function) will reduce over the years. Your kidneys may eventually stop working. This is known as kidney failure or end-stage kidney disease.

If you have kidney failure, your treatment options may include:

• a kidney transplant
• dialysis (haemodialysis or peritoneal dialysis)
• supportive medicines and care only

Your kidney specialist will explain which options are suitable for you.

In the UK, about a quarter of people with polycystic kidney disease (PKD) and kidney failure are on long-term dialysis.

There are two main types of dialysis which work differently:

• For haemodialysis, a machine filters your blood to remove waste and fluid.
• For peritoneal dialysis, you add fluid into a space in your abdomen (tummy) where it can absorb waste and fluid. You can drain off the fluid and replace it with fresh fluid yourself, with help, or using a machine.

Of the people with PKD having dialysis in the UK:

• About 83 out of 100 have haemodialysis
• About 17 out of 100 have peritoneal dialysis

Haemodialysis and peritoneal dialysis work equally well for most people and are equally safe.

Neither type of dialysis can filter blood as well as real kidneys. Dialysis does about 10% of the filtering that a healthy kidney can do. This removes enough waste and fluid from your blood to reduce your symptoms and extend your life.

The function of your own kidneys will continue to worsen over time.

Your kidneys have a few different jobs and dialysis can’t do them all. So, if you’re on dialysis, you’ll probably need to take some medicines and supplements to help you stay well.

These may include:

• medicines to reduce your blood pressure
• vitamins and iron supplements
• phosphate binders (which reduce the amount of phosphate that your gut absorbs)
• a hormone called erythropoietin (EPO), which tells your body to make more red blood cells

Most people need to follow a special diet and limit how much fluid they drink.

Having dialysis will have a big impact on your life, but you can still have a good life. It might take some time to get used to planning your life around your dialysis sessions.

Some symptoms caused by low kidney function are likely to improve once you start dialysis.

For example:

• You may feel less sick, tired and weak.
• Puffy ankles may improve.
• You may feel less short of breath. 

Most people on dialysis can still work or study, exercise, drive and have holidays and trips away.

You may need some help from your family, friends or a carer. You’ll have support from your dialysis team. This team includes a doctor specializing in treating kidney conditions (a nephrologist) and a nurse. Other people such as a dietitian, social worker and clinical psychologist will be involved.

Dialysis can be frustrating and might get you down. Your kidney team might be able to suggest changes to your dialysis routine to reduce its impact on your life. Most kidney centres have a psychologist who you could chat to.

Talking to other people on dialysis, friends and family can help too. You can find others with ADPKD to chat to through our PKD support groups and ADPKD Facebook group.

You might be entitled to government benefits and other financial or practical help — the National Kidney Federation has information on this.

Most people on dialysis need to follow a special diet and watch how much fluid they drink, especially those having haemodialysis.

You might be able to see a dietitian for people with kidney disease before starting dialysis.

They could help you plan your diet to:

• avoid eating too much sodium (salt), potassium and phosphate
• get enough vitamins and minerals
• eat the right amount of protein
• have the right number of calories
• maintain a healthy weight

You can also ask to see a dietitian later for advice and support.

Keeping physically active helps to maintain and improve your fitness and strength. It can also reduce your risk of high blood pressure and cardiovascular problems.

You might find some types of exercise harder than you used to due to your kidney health. Your cardiovascular fitness may be lower than before and your muscles might be weaker. This will improve the more you do (as long as the exercises are right for you).

If you’d like advice on exercise, ask your kidney team or GP to refer you to a physiotherapist or other exercise specialist.

Some dialysis centres have spaces where you can exercise during your haemodialysis sessions. If you have a catheter in your abdomen for peritoneal dialysis you can still go swimming.

Dialysis will improve your life expectancy. How long you’re expected to live will depend on a few factors including your age, sex and health.

People with ADPKD tend to live longer on dialysis than people on dialysis for other reasons. One of the main reasons for this is that people with ADPKD on dialysis tend to be younger than other dialysis patients. Keep this in mind if you’re reading general information on dialysis.

If you’d like to know more, ask your treatment team.

Experts think haemodialysis and peritoneal dialysis are equally safe for people with ADPKD. Unless there is a reason one type of dialysis is not suitable for you, you can choose which type to have.

Your kidney doctor and other specialists will talk you through the pros and cons of each option. They can also help you decide whether to have dialysis at home, in a hospital or in a dialysis unit.

Factors to think about include:

• what dialysis services are available in your local area
• whether you prefer to do dialysis yourself or have expert help
• who could help you do dialysis sessions at home if needed
• what type of dialysis fits best into your life
• any health problems that make one type of dialysis more suitable for you (for example, peritoneal dialysis may be less suitable for you if you have very large kidneys)

See our web pages on haemodialysis and peritoneal dialysis for information on each type of dialysis.

Kidney Research UK have a booklet to help people decide which type of dialysis to have: the Dialysis Decision Aid booklet. We recommend you read it. You may also find it helpful to talk to other people on dialysis, your healthcare team, friends, family or caregiver to help you decide.

Your decision does not need to be final. You’ll be able to chat to your dialysis team about how your dialysis is going and make changes to suit your lifestyle and needs. You might be able to change from one type of dialysis to another if your preferences change. You’ll need to have an assessment and surgical procedure to prepare first.