Many people with ADPKD develop cysts in other organs, as well as in their kidneys. The liver is also often affected by ADPKD.
Cysts that develop in the liver do not usually disrupt normal liver function, but they can sometimes become infected or cause symptoms such as:
- tummy (abdominal) pain
- abdominal swelling and bloating
- in rare cases, yellowing of the skin and whites of the eyes from liver damage (jaundice)
In most cases these symptoms will pass without the need for treatment.
In rare cases where a larger cyst causes severe or persistent pain, surgery may be required to drain the cyst.
Very rarely, the liver can become so massively swollen that it stops working properly.
In such cases it may be necessary to surgically remove some of the liver or carry out a complete liver transplant.
CVD is a general term that refers to conditions that affect the heart and blood vessels, and includes:
- coronary heart disease, where the blood supply to the heart becomes restricted
- stroke, when the blood supply to part of the brain is blocked, causing irreversible brain damage
- heart attack, when the blood supply to the heart is suddenly blocked, causing irreversible damage to the heart muscle
An aneurysm is a bulge in a blood vessel caused by a weakness in the blood vessel wall.
As 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 because the high blood pressure affects the weakened blood vessel walls.
A brain aneurysm does not usually cause any noticeable symptoms unless it bursts (ruptures).
A ruptured aneurysm 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, often described as being like being suddenly hit on the head, resulting in an intense pain unlike anything experienced before
- a stiff neck
- feeling and being sick
- sensitivity to light (photophobia)
- blurred or double vision
- stroke-like symptoms, such as slurred speech and weakness on 1 side of the body
- loss of consciousness or uncontrollable shaking (convulsions)
A subarachnoid haemorrhage is a medical emergency that requires immediate treatment to prevent serious complications, brain damage and death.
Dial 999 immediately and ask for an ambulance if you think that you or someone you know is having a subarachnoid haemorrhage.
It's estimated around 10% of people with ADPKD will develop a brain aneurysm, but most will not have any symptoms and it'll never cause a problem.
People with ADKPD who also have a family history of subarachnoid haemorrhages are at greater risk.
If you have ADPKD and a family history of subarachnoid haemorrhages, you'll usually be offered an MRA scan to check for aneurysms in your brain.
An MRA scan uses a magnetic field and radio waves to produce images of your arteries and the blood flow within them.
If no or only small aneurysms are found, you'll be offered further scans at intervals of 1 to 5 years to check for new haemorrhages or an increase in the size of an existing one.
If an aneurysm of a particular size is detected and your doctor thinks there's a risk it could rupture in the future, they may recommend that you have an operation or procedure to prevent this.