Polycystic Kidney Disease

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What is polycystic kidney disease?

Polycystic kidney disease (PKD) is an inherited disease that affects the kidneys. Sacs of fluid (called cysts) grow in the kidneys. If too many cysts grow or if they get too big, the kidneys become damaged. The cysts may also cause pain or may get infected.

PKD is the most common inherited disease in the United States. Children of parents who have PKD have a 50% chance of getting the disease.

How will PKD affect me?

For many people, PKD is mild and causes only minor problems. PKD is more severe for some people and can cause kidney failure. About 60% of people who have PKD also have high blood pressure, which can be treated with medicine.

About 50% of patients who have PKD have kidney failure by age 60. Dialysis (blood filtering) and kidney transplants are both effective treatments for kidney failure.


What are the symptoms of PKD?

The most common symptom of PKD is high blood pressure. Other symptoms are:

  • Pain in the back and side
  • Blood in the urine
  • Frequent kidney infections

PKD is often diagnosed when a person begins to have symptoms, but not all patients will have all of these symptoms.


Who is at risk for PKD?

PKD is generally worse in men, African Americans and people who have sickle cell disease. There is also a childhood form of PKD, which is usually more severe than the type that occurs in adults.


How is PKD diagnosed?

PKD is often diagnosed when a person begins to have the symptoms of PKD, but not all people who have PKD will have all of these symptoms.

If you have symptoms of PKD or if you are at risk for the disease, your doctor may want you to have an ultrasound exam. An ultrasound exam uses sound waves to create a picture of your organs and can detect cysts on the kidneys. Your doctor may also order a CT (computerized tomography) scan to look for cysts in the kidney.

Can PKD be diagnosed in unborn babies?

Yes. PKD can be diagnosed in unborn babies using a test called amniocentesis. During this test, a very small amount of the amniotic fluid is taken out of the womb. The fluid is then tested. Another test, called chorionic villus sampling, involves testing a very small piece of the placenta. If you have PKD and you’re pregnant or planning on becoming pregnant, talk with your doctor about these procedures.

Who should be checked for PKD?

If one of your parents has PKD, you should consider having an ultrasound exam of your kidneys. If you have PKD and you also have a relative who has had a brain aneurysm, your doctor may suggest that you have a CT or MRI (magnetic resonance imaging) of your brain to check for an aneurysm. (MRI uses a magnetic field and radio waves to produce a picture of your brain.) If you are at high risk of an aneurysm, your doctor may suggest that you have CT or MRI of the brain every 5 years to detect an aneurysm before it causes problems.


Is there treatment for PKD?

No treatment is available for the cysts caused by PKD. If the cysts are causing symptoms, these symptoms can be treated so you will be more comfortable.


Can other organs be hurt by PKD?

People who have PKD may also have cysts in the liver, but these cysts seldom cause problems. Other organs that may be affected include the brain, intestines, pancreas, ovaries and spleen. PKD can cause problems with heart valves in some people. When PKD affects the brain, it can cause an aneurysm (a bulging blood vessel that can rupture).


Questions to Ask Your Doctor

  • What treatment is best for my symptoms?
  • How can I know if my baby has PKD?
  • I have PKD. Is it certain that my children will have it?
  • If my symptoms get worse, when should I call my doctor?
  • What kinds of tests do I need to diagnose PKD?
  • Will my PKD affect any of my other organs.
  • Are there any medications that I should take?
  • What is the best way to treat my high blood pressure?
  • What side effects will I experience from my medications?
  • What kinds of complications can I expect?

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