Polycystic Kidney Disease

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About Polycystic Kidney Disease:

Polycystic Kidney Disease (PKD) is a condition where cysts grow in the kidneys. The cysts are filled with liquid. They form in the nephrons, or tiny tubes, within the kidney. When the cysts grow in number and size, they can be painful and make the kidneys less able or unable to function.

There are two main kinds of polycystic kidney disease:

  • Autosomal Dominant Polycystic Kidney Disease (ADPKD) is sometimes called “adult onset PKD” because many people don’t find out about it until they are adults.
  • Autosomal Recessive Polycystic Kidney Disease (ARPKD) is sometimes called “infantile PKD”. This is because ARPKD requires medical attention early in life, so children who have it may be identified while they are still very young.

Some cases may even be detected by ultrasound before birth.
 

Facts about PKD:

  • About 600,000 people have PKD in the United States.
  • PKD is a genetic condition, which means that whether or not someone has it is determined by their genes. Some adults do get PKD without a family history, or “spontaneously,” but usually genes inherited from parents play a role.
  • Even though PKD is a genetic condition, people who have PKD can take charge of their health by managing blood pressure and taking care of their kidneys.
     

Polycystic Kidney Disease Signs and Symptoms:

Some people with PKD do not know they have it because they do not have any symptoms. However, some signs of PKD are:

  • Testing positive for protein in the urine
  • Blood in the urine
  • Pain in the lower back or sides
  • Headaches
  • High blood pressure

If these signs appear, your doctor may do tests to see if you may have PKD.
PKD is often diagnosed by an ultrasound test that looks for cysts in the kidneys. The ultrasound uses sound waves to create images of the body – it is safe for everyone, even pregnant women.
 

Taking care of your kidneys with PKD:

  • If you have high blood pressure, you can work to lower it with moderate exercise like walking, eating a low-salt diet, and finding ways to cope with stress. Medicine may also be prescribed to reduce blood pressure.
  • Most frozen or prepared foods have large amounts of salt that can increase your blood pressure. If you eat frozen or prepared foods, look for ones marked “low sodium”. Try to incorporate more fresh foods, and cooking at home instead of eating in restaurants.
  • Some doctors recommend that people with PKD avoid medicines like ibuprofen (Advil) or naproxen (Aleve). Ask your doctor if avoiding them would be gentler on your kidneys.
  • If you smoke, ask your doctor about the different ways to quit. There are medicines and other therapies available that can help. Quitting smoking is important to keeping blood pressure low.
     

Taking Care of your Kidneys with PKD – Early Stages:

  • Some doctors recommend that people with PKD who are not on dialysis drink plenty of water. Some people keep a pitcher with 8-10 cups of water in the fridge, and aim to drink all of the water in the pitcher throughout each day. Ask your doctor if staying hydrated with water may help slow cyst growth.
  • Eating a plant-based diet may help slow the growth of cysts by reducing inflammation in the body and reducing the amount of animal protein your kidneys need to process.
  • Some doctors recommend limiting alcohol use to no more than 1 drink a day. Excessive drinking of alcohol may increase blood pressure.
     

Taking Care of your Kidneys with PKD – Later Stage:

  • If your PKD has progressed to Stage 4, or End Stage Renal Disease, you will need to plan for dialysis or a transplant.
  • A nephrologist and renal dietician will work with you to plan a personalized diet based on your special needs and biological makeup. You may need to monitor nutrients like phosphorus, potassium, or calcium.
  • The recommendations you receive about food and lifestyle changes may be different from earlier stages in PKD. Feel free to ask the renal team lots of questions about how to take care of your kidneys.
     

Resources:

National Kidney and Urologic Diseases Information Clearinghouse: Polycystic Kidney Disease
http://kidney.niddk.nih.gov/kudiseases/pubs/polycystic/

PKD Foundation
www.pkdcure.org

Your Guide to Lowering Your Blood Pressure with DASH (PDF File) – A Low-Sodium Diet
www.nhlbi.nih.gov/health/public/heart/hbp/dash/new_dash.pdf

Smokefree.gov – Tools for Quitting Smoking
http://smokefree.gov/