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What Is Polycystic Kidney Disease?

Polycystic kidney disease (PKD) causes round, fluid-filled sacs called cysts to grow in your kidneys. These cysts can cause your kidneys to enlarge and function poorly. People with PKD can also develop cysts in other parts of their body. The disease can cause serious complications, such as high blood pressure and kidney failure (end-stage kidney disease).

Polycystic Kidney Disease Symptoms

You may experience a variety of PKD symptoms:

  • Back or side pain

  • Blood in urine

  • Enlarged belly due to large kidney size

  • Headaches

  • High blood pressure

  • Kidney stones

  • Loss of kidney function

  • Sense of fullness in the belly shortly after you start eating

  • Frequent urinary tract infections

No two people with PKD experience symptoms the same. Some people have mild and manageable symptoms, while others develop more severe disease and kidney failure. You’ll need to work closely with your care team to understand how PKD affects your health. They can also teach you how to manage your symptoms.

Why Choose University of Utah Health?

Our nephrologists specialize in kidney disease and understand the challenges of PKD. We provide you with a personalized treatment plan and close follow-up to keep you as healthy as possible. Our providers stay current on PKD research and clinical care.They will ensure you have access to the latest techniques and treatments in the field.

U of U Health care team members come from many specialties:

People with severe PKD need a kidney transplant to prolong their lives. The kidney transplant program at U of U Health has been caring for patients since 1965. We perform many kidney transplants with survival rates higher than the national average.

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What Causes Polycystic Kidney Disease?

Abnormal genes passed from a parent to their child most often cause PKD. It is possible to have PKD for years and not know it. PKD rarely occurs without inheriting it from your parent.

Polycystic Kidney Disease Risk Factors

There are several factors that may increase your risk for more severe PKD symptoms:

  • You have specific genetic mutations (changes).

  • You have a large kidney.

  • You’ve had three or more pregnancies.

  • You are a man.

  • You are Black.

  • You had symptoms that started before you were 35, such as frequent urinary tract infections, high blood pressure, or blood in your urine.

Polycystic Kidney Disease Genetics

People with a genetic form of PKD have a mutation (change) in one of two genes: PKD1 or PKD2. There are two genetic forms of PKD:

  • Autosomal Dominant Polycystic Kidney Disease (ADPKD)–ADPKD is the most common form of polycystic kidney disease. The mutation comes from only one parent. Signs and symptoms of ADPKD typically develop when a person is in their 30s or 40s.

  • Autosomal Recessive Polycystic Kidney Disease (ARPKD)–This form of PKD happens when both parents have an abnormal gene associated with PKD. Signs and symptoms of ADPKD often appear soon after birth. However, some signs don’t appear until later in childhood or adolescence. ARPKD leads to more severe symptoms than ADPKD.

Talk to your provider about getting screened for PKD if you have a parent, sibling, or child with PKD. U of U Health offers genetic testing and a health evaluation to help you learn more about PKD:

  • Your risk of developing PKD

  • Whether you already have PKD

  • How to protect your health and manage your symptoms

Polycystic Kidney Disease Diagnosis

Our nephrologists offer a complete evaluation, accurate diagnosis, and personalized treatment plan for people with PKD:

PKD Genetic Testing

Your nephrologist may also order genetic testing. You and a genetic counselor will discuss your results when they’re ready. They will let you know if other family members need to be tested for PKD or are at risk for developing the condition.

Polycystic Kidney Disease Treatment

PKD treatment focuses on slowing down the disease and preventing complications. Your nephrologist will personalize your care plan based on your needs. Follow the care plan closely and attend all your follow-up appointments. We will monitor you to keep you as healthy as possible.

Polycystic Kidney Disease Medication

Medication can help people with PKD manage their symptoms:

  • Tolvaptan–This twice-daily pill helps control the concentration of urine in adults with ADPKD. Research shows the pill can slow down the growth of kidney cysts, protect kidney function, and delay the onset of kidney failure. It’s the most commonly used medicine for PKD.

  • Blood pressure medication–Angiotensin-converting enzyme (ACE) inhibitors or angiotensin II receptor blockers (ARBs) control high blood pressure, which is vital for people with PKD.

Polycystic Kidney Disease Diet

People with PKD should maintain a healthy weight and follow a balanced, low-sodium diet:

  • Fruits and vegetables

  • Foods with a low salt content

  • Whole grains

Other habits can help people with PKD be as healthy as possible:

  • Exercise at least 30 minutes a day

  • Limit alcohol use

  • No smoking

Polycystic Kidney Disease Surgery

If you develop kidney failure, you will need dialysis to remove waste and extra fluid from your blood. You will also need a kidney transplant to prolong your life.

Some people have transplant surgery before they need dialysis. This procedure is called a preemptive transplant. They will receive their kidney while their health is still good. Preemptive transplants keep them healthier and help them live longer.

People with PKD who have a kidney transplant tend to do well. However, they still need lifelong care to monitor their new kidney and overall health.

Polycystic Kidney Disease Complications

Kidney failure is the most severe complication of PKD. However, PKD can also cause the following conditions and complications:

  • High blood pressure

  • Loss of kidney function

  • Chronic pain in the side or back

  • Cysts in the liver

  • Pregnancy complications related to high blood pressure

  • Problems with the heart valves or colon

  • Brain aneurysms

PKD prevents your kidneys from removing waste from your body. This waste can build to toxic levels and cause a condition called uremia. You may develop kidney failure and need a transplant if uremia progresses. Our nephrologists will work closely with our kidney transplant surgeons to give you high-quality, seamless care.

Schedule an Appointment

We are here to help you take control of your health and support you through whatever challenges you face. Call 801-581-2772 if you have or think you may have PKD. You do not need a referral to see a U of U Health nephrologist.

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