Ohio State has revolutionized care for polycystic kidney disease patients, providing the latest medications and treatment strategies to prevent cyst formation and slow disease progression.

What is polycystic kidney disease?

Polycystic kidney disease (PKD) is a genetic disorder causing cysts to form and replace healthy kidney tissue. Kidney cysts occur when fluid-filled sacs form within kidney tissue.

The cysts enlarge the kidneys and prevent them from working properly, which can lead to kidney failure. Cysts can also occur in other organs and parts of the body.

In the United States, about 600,000 people have polycystic kidney disease. There’s currently no cure for PKD, but treatment is available to help manage symptoms and slow disease progression.

The goal of Ohio State’s Polycystic Kidney Disease Clinic in Columbus, Ohio, is to slow progression of the disease and keep your kidneys as healthy as possible. You’ll be seen in the clinic every three, six or 12 months, depending on your needs.

Polycystic kidney disease symptoms

People who have polycystic kidney disease are born with a gene that causes the disorder. However, PKD symptoms typically don’t develop until the person is 30 to 40 years old. Symptoms of PKD include:

  • High blood pressure, sometimes presenting as headache
  • Enlarged abdomen
  • Back or side pain
  • Regular bladder or kidney infections
  • Blood in urine
  • Fluttering or pounding in the chest

Diagnosing polycystic kidney disease

The Polycystic Kidney Disease Clinic at Ohio State offers the latest diagnostic methods to determine the degree of kidney involvement. There are five stages of kidney disease, and the following techniques are used to determine which stage each patient is in:

  • Ultrasound – The most reliable way to diagnose PKD is through an ultrasound imaging test.
  • Computerized tomography (CT) – CT is ideal for detecting smaller cysts that ultrasound could miss.
  • Magnetic resonance imaging (MRI) – MRI is also good for detecting smaller cysts.
  • Genetic testing – Genetic testing is performed by drawing blood and having a lab test the blood for genetic markers. Genetic testing isn’t recommended for everyone, but it can be useful if you have an inconclusive diagnosis based on imaging tests. It’s also used if you have a family history of PKD and wish to start a family or donate a kidney.

Polycystic kidney disease treatment

There’s currently no cure for PKD, but experts at The Ohio State University Wexner Medical Center are able to recommend the best options to manage your individual symptoms and slow the rate of kidney disease. Treatment is determined by the stage of kidney disease and size of kidneys. Possible treatments include:

  • Innovative medications – Your doctor may prescribe a drug called tolvaptan — the leading treatment for polycystic kidney disease. Tolvaptan suppresses a hormone associated with cyst growth, preventing cysts from growing. Ohio State also participates in clinical trials, offering you the most advanced medications and latest treatments.
  • Water intake – Your doctor may advise increasing your water intake. Drinking water throughout the day and avoiding caffeine can slow the growth of cysts.
  • Controlling blood pressure – Your doctor may recommend lifestyle changes like limiting sodium in your diet, or they might prescribe medication to help manage your blood pressure.
  • Healthy lifestyle choices – Your doctor will recommend regular exercise, a healthy diet and refraining from unhealthy habits (such as smoking) to help keep your kidneys functioning at their best.
  • Dialysis or kidney transplant – If kidney failure does happen, Ohio State offers both hemodialysis and peritoneal dialysis at clinics and in the home. If a kidney transplant is needed, Ohio State performs more than 265 kidney transplants a year, making us one of the most experienced programs in the country.

You’ll have bloodwork, urinalysis and other tests done at clinic appointments to monitor disease progression and modify treatments as needed.

Additional resources

The PKD Foundation website offers a host of resources for patients and caregivers including educational resources, support programs, research trials, nutrition information, recipes and more.

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