Complications of autosomal dominant polycystic kidney disease 

Autosomal dominant polycystic kidney disease (ADPKD) can sometimes lead to potentially serious complications in other parts of the body besides the kidneys.

Some of the main complications associated with ADPKD are described below.

Liver cysts

Many people with ADPKD develop cysts in other organs, in addition to their kidneys. One of the most common organs also affected by ADPKD is the liver.

These cysts do not usually disrupt normal liver functions, but they can sometimes become infected and/or cause symptoms such as:

  • abdominal pain
  • swelling and bloating of your tummy (abdomen)
  • in rare cases, jaundice (yellowing of the eyes and skin from liver damage)

In most cases, the symptoms will pass without the need for treatment. In rare cases, when a larger cyst causes severe and/or persistent pain, surgery may be required to drain the cyst.

In very rare cases, the liver becomes so massively swollen that it stops working properly. It may be necessary to surgically remove some of the liver or perform a complete liver transplant.

Cardiovascular disease

As a result of high blood pressure, people with ADPKD also have an increased risk of developing cardiovascular disease (CVD).

CVD is a general term to refer to conditions that affect the heart and blood vessels, and includes:

  • coronary heart disease  where the supply of blood to the heart becomes restricted
  • stroke  when the blood supply to part of the brain is blocked, damaging it irreversibly
  • heart attack  when the supply of blood to the heart is suddenly blocked, causing irreversible damage to the heart muscle

If you are at risk of CVD, you may be prescribed low-dose aspirin to help stop your blood clotting, and a medication called a statin to reduce your cholesterol levels.

Making healthy lifestyle changes can also help reduce your risk of CVD, such as stopping smoking, reducing your alcohol intake, exercising regularly and eating a healthy diet.

Read more about preventing CVD.

Brain aneurysms

An aneurysm is a bulge in a blood vessel caused by a weakness in the blood vessel wall. As the blood passes through the weakened part of the vessel, the blood pressure causes it to bulge outwards like a balloon.

Brain aneurysms are more common in people with ADPKD than those in the general population, probably due to the high blood pressure affecting the weakened blood vessel walls.

A brain aneurysm does not usually cause any noticeable symptoms unless it bursts (ruptures). The ruptured aneurysm then causes bleeding over the surface of the brain. This is known as a subarachnoid haemorrhage.

Symptoms of a subarachnoid haemorrhage can include:

  • a sudden agonising headache – which is often described as being similar to a sudden hit on the head, resulting in a blinding pain unlike anything experienced before
  • stiff neck
  • feeling and being sick
  • sensitivity to light (photophobia)
  • blurred or double vision
  • confusion
  • stroke-like symptoms – such as slurred speech and weakness on one side of the body
  • loss of consciousness or convulsions (uncontrollable shaking)

A subarachnoid haemorrhage is a medical emergency that requires immediate treatment to prevent serious complications, brain damage and death. Call 999 immediately and ask for an ambulance if you think that you or someone you know is having a subarachnoid haemorrhage.

Screening

It is estimated that around 10% of people with ADPKD will develop a brain aneurysm, but most won’t have any symptoms and will never cause a problem. Those people who also have a family history of subarachnoid haemorrhages are at greater risk.

If you have ADPKD and have a family history of subarachnoid haemorrhages, you will usually be offered a magnetic resonance imaging (MRI) scan to check for aneurysms in your brain. If no aneurysm, or only small ones, are found you will be offered further scans at intervals of one to five years to check for the development of new ones or an increase in the size of an existing one. 

If an aneurysm of a particular size is detected and your doctor thinks there is a risk it could rupture in the future, they may recommend having an operation or procedure to prevent this.

Read more about treating brain aneurysms.

Page last reviewed: 09/06/2014

Next review due: 09/06/2016