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Polycystic Kidney Disease (PKD) is a condition where fluid-filled cysts grow in the kidneys. They form in the nephrons, or tiny tubes, within the kidney. The nephrons are tiny tubes that produce urine in the process of removing waste from the blood. There are about 1,000,000 nephrons in each human kidney. When the cysts grow in number and size, they can be painful and make the kidneys less able to or unable to function.

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Click LEARN MORE on the boxes below for more information on PKD.

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About PKD

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Signs and Symptoms

Taking Care of Your Kidneys with PKD

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Resources and Support

About Polycystic Kidney Disease

  • As of 2018, about 600,000 people in the United States had PKD.
  • PKD is a genetic condition, meaning that having 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.
Types 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. Children who have it may be identified while they are still very young. Some cases are detected by ultrasound before birth.

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:

  • 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

In the early stages of PKD: 
  • Drink 8 to 10 cups of water a day. Ask your doctor if staying hydrated with water may help slow cyst growth. Doctors recommend that If you are not on dialysis, keep a pitcher with 8 to10 cups of water in the fridge, and drink all the water in the pitcher throughout each day.
  • 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 that your kidneys need to work to eliminate..
  • Some doctors recommend limiting alcohol use to no more than 1 drink a day. Excessive alcohol may increase blood pressure.
In the later stages of PKD:
  • If your PKD has progressed to Stage 4, or End Stage Renal Disease (ESRD), you will need to plan to start dialysis (at home or in a dialysis center) and/or find out the requirements for being put on a kidney transplant list.
  • A nephrologist (doctor who specializes in kidney care) and a renal dietitian (person who counsels on nutrition for people with kidney disease) 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 the earlier stages of PKD. Ask your renal team lots of questions – they are the most knowledgeable about your kidneys.
Taking general care of your kidneys with PKD by lowering blood pressure

If you have high blood pressure, lower it by:

  • Moderate physical activity like walking
  • Eating a low-salt diet. Most frozen or prepared foods have large amounts of salt that can increase your blood pressure. If you eat these foods, look for ones marked “low sodium”. Try to incorporate more fresh foods, and cook at home instead of eating in restaurants.
  • Finding ways to cope with stress.
  • Asking your doctor if there is a drug to help you reduce your blood pressure

Some doctors recommend that people with PKD avoid common drugs 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 drugs and other therapies available that can help. Quitting smoking is important to keeping blood pressure low.

 

For Polycystic Kidney Disease questions or support, please contact the National Kidney Foundation of Michigan’s Patient Services department.

patientservices@nkfm.org |1-800-482-1555 ext 2570

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