HealthInfo West Coast-Te Tai Poutini
Adult polycystic kidney disease
Polycystic kidney disease (PCKD) is passed down in families – you inherit it from one or both of your parents. It is the most common form of inherited kidney disease.
If you have PCKD, a lot of cysts – or sacs filled with fluid – form on your kidneys. These can slowly cause your kidneys to stop working properly. It might also make cysts grow in other parts of your body, such as your liver, brain or heart.
How do I know if I have PCKD?
You might not know you have PCKD – it's common not to have any problems. However, symptoms you might notice include:
- pain in your back or side – this is caused by the cysts
- headaches – caused by high blood pressure
- swollen tummy (abdomen) – caused by the cysts getting bigger
- blood in your urine – caused by the cysts bleeding
- needing to pass urine a lot
- a lot of urinary tract infections.
When you visit your doctor, they might find you have high blood pressure or kidney stones. As well, your doctor might order the following tests:
- urine tests to check for protein and blood in your urine
- blood tests, to check how well your kidneys are working
- ultrasound, to look for cysts (although the cyst might be too small to show on ultrasound).
If you have PCKD, your doctor might talk to you about screening your children to find out if any of them have inherited it.
How is PCKD treated?
There is no treatment that can stop or slow down the development of PCKD. But it is important to make sure you keep your blood pressure under control, and have a healthy lifestyle.
About half of people with PCKD will develop a mild form of chronic kidney disease (CKD), which doesn't develop further or only does so in old age. However, the other half develop severe CKD and will need a kidney transplant or dialysis.
HealthInfo recommends the following pages
- Patient.info – Polycystic kidney disease
Detailed information about PCKD, including the different types, possible complications, and also the pros and cons of screening other family members.
- UpToDate – Patient information: polycystic kidney disease
Detailed discussion of PCKD, including genetics, and its effects on the rest of your body.
Written by HealthInfo clinical advisers. Endorsed by clinical director, Nephrology Department, Canterbury DHB. Page created August 2016.
SourcesReview key: HICKD-117713
