Polycystic Kidney Disease: What Do You Need to Know?

This article is for people living with polycystic kidney disease (PKD) and their care partners, or anyone who wants to learn more about PKD. The goal of this patient education activity is increase understanding of PKD.

You will learn about:

• What PKD is and what causes it

• PKD symptoms

• Complications, or additional problems, that may happen with PKD

• Ways to help manage PKD and making a treatment plan

• Questions to ask your doctor

Polycystic kidney disease, or PKD, is a chronic (long term) health condition where groups of cysts grow inside your kidneys. Cysts are round, non-cancerous sacs filled with fluid that can be different sizes and may grow very large over time in PKD.

Having several cysts and/or large cysts can lead to kidney damage and may even cause kidney failure where your kidneys stop working.

With PKD, cysts can sometimes also develop in other parts of your body, such as your liver, pancreas, spleen, large intestine, and the blood vessels in your brain or heart.

PKD is caused by a change (mutation) in your genes. Genes are the components inside your cells that carry the information that determines your traits (your features or characteristics).

The gene mutation that causes PKD can be passed on from a parent (inherited) or happen on its own when neither parent has a copy of the mutated gene to pass on (spontaneous).

In most cases, PKD is inherited, or runs in families. Talk to your family about PKD. If you have a biologic (blood relative) parent, brother, sister, or child living with PKD, ask your doctor if screening may be recommended for you or someone in your family.

Many people living with PKD may not even know they have it because they don't have any symptoms.

PKD can be different in different people -- it can even appear differently among members of the same family.

Not everyone living with PKD will have symptoms, and those who do may not notice them for several years. But over time, PKD can damage your kidneys, even if your symptoms aren't severe or noticeable.

Symptoms can include:

• High blood pressure

• Headaches

• Pain in your side or back

• Feeling full or having a large abdomen (belly)

• Bladder or kidney infections

• Kidney stones

• Blood in your urine

Even if PKD is mild, it can affect how well your kidneys work and may cause serious complications (additional problems), such as:

• High blood pressure that can further damage your kidneys and increase your chances for heart disease and stroke if not treated properly

• Aneurysm, a bulge in a blood vessel (artery) in your brain that can burst and bleed

• Chronic pain

• Heart valve problems

• Uremia where toxic amounts of waste build up in your blood

• Kidney failure

• Colon (large intestine) problems

• Problems during pregnancy for some women

While there's no cure for PKD, there are treatments that can help control symptoms, slow the growth of cysts, and stop or slow down kidney damage and the loss of kidney function.

Many people may first see their primary care doctor, but you may also be referred to a nephrologist, a doctor who specializes in treating kidney conditions. Seeing a doctor or nephrologist as soon as possible and getting early treatment gives you the best chance of slowing down PKD. Some complications may even be preventable.

Together, you and your doctor will make a PKD treatment plan that best fits your individual needs. Treatment may include medicines, lifestyle changes, and joining a clinical trial. 

You can help manage PKD and work to reduce damage to your kidneys by maintaining a healthy lifestyle, including:

• Avoid caffeine and drink plenty of water, especially if you see blood in your urine

• Keep good control of your blood pressure

• Get quick treatment for bladder or kidney infections. If your doctor prescribes antibiotics, be sure to take them as directed

• Quit smoking

• Stay physically active, maintain a healthy weight, and eat a well-balanced diet that's low in salt

• Find ways to help cope with stress

• Take all medicines as directed

Don't be afraid to ask your doctor plenty of questions so that you can understand what PKD is, what it may look like for you, and about a treatment plan that fits your individual needs.

Be sure to stick to your treatment plan, even if you're feeling ok and don't have any symptoms. Your plan may need to change over time, so having open communication with your doctor about your PKD symptoms is key.

Also be sure to tell them about what you eat and drink, any herbals and supplements you take, and all medicines -- including those you can get without a prescription -- so you can discuss how they may affect your kidneys.

Questions you can ask your doctor about living with PKD can include:

• What can I do to help manage my symptoms and improve my quality of life?

• Are there any lifestyle changes I should make?

• What treatments are available, and what are their side effects?

• Is there a clinical trial I might be eligible for?

• What should I do if I start to feel stressed or depressed?

• Is there a support group I can join?

• Where can I find more information and resources?

Congratulations!

You have successfully completed the program Polycystic Kidney Disease: What Do You Need to Know?.

View Additional Materials on this topic that you may find useful:

Polycystic Kidney Disease (PKD)

What Is Polycystic Kidney Disease?

Eating Right for Chronic Kidney Disease

Eating, Diet, and Nutrition for Polycystic Kidney Disease