Polycystic Kidney Disease
Polycystic kidney disease (PKD) affects hundreds of thousands in the United States. PKD is a genetic disease that causes fluid-filled cysts to grow in the kidneys. Over time, as the cysts continue to develop, the kidneys enlarge and compress other organs in the body, often causing pain and fatigue.
PKD affects people differently, and it can be serious. More than 50% of those who have PKD will develop kidney failure by age 50. Until recently, dialysis or a kidney transplant were the only treatment options for PKD. Today, we're excited to offer the first FDA-approved medication, tolvaptan, to help slow the progression of PKD. It is the first and only FDA-approved drug available in PKD care. Lifestyle management and management of associated conditions – like hypertension and urinary tract infection – along with dialysis or kidney transplant are the only other PKD treatment options.
If you believe you are at risk for PKD, or have been diagnosed with PKD and would like a second opinion, call 913-588-6048. You can also request your consultation online. The University of Kansas Health System provides care to those with polycystic kidney disease in Kansas City and surrounding areas.
Types of PKD
A rare form of PKD, autosomal recessive polycystic kidney disease (ARPKD) affects approximately 1 in 20,000 children. Complications related to ARPKD may cause death in the first month of life. One-third of children who survive the newborn period will need dialysis or a kidney transplant by age 10.
Is it PKD?
Many people who have PKD go undiagnosed. At the early stages of the disease, there are often no symptoms. Signs or symptoms of PKD include:
- High blood pressure
- Blood in the urine
- Pain in the back or abdomen
- Urinary tract infections
- Kidney stones
Imaging tests such as an ultrasound, computed tomography and magnetic resonance imaging can be used to diagnose PKD.
Your partner in PKD care
If you or your loved one has PKD, trust the experts at The University of Kansas Health System in Kansas City to partner in your PKD care. Our multidisciplinary team can give you information about polycystic kidney disease and offer more treatment options to help you live life more fully.
At The University of Kansas Health System, we provide:
- A nationally recognized, complete continuum of kidney care, including dialysis and transplant, as well as use of tolvaptan, the first and only FDA-approved medication to treat PKD, slowing the disease's progression
- Board-certified specialists with PKD experience to predict the onset of end-stage kidney failure
- A multidisciplinary approach, including shared care with referring physicians
- One of the nation's top kidney research facilities, offering research initiatives and clinical trials that bring the latest discoveries to patient care
Jennifer Branch: My name is Jennifer Branch and I am a PKD survivor, polycystic kidney disease, and I'm also a transplant recipient, kidney transplant. I would want to tell other people who have been diagnosed with polycystic kidney disease that it's definitely not a death sentence, so there's a lot of options, a lot of education available, a lot of good doctors and nurses who definitely know a lot about polycystic kidney disease. The University of Kansas Hospital has helped me through my healthcare journey with having polycystic kidney disease immensely. First of all, I got established with nephrologists there. I have been enrolled in some polycystic kidney disease studies and the research studies have felt so empowered by being able to participate in those studies.
Dr. Franz Winklhofer: My name is Franz Winklhofer. I'm a nephrologist with an interest in polycystic kidney disease. I'll see a lot of patients with very early stage kidney disease, especially polycystic kidney disease, but I take care of patients on dialysis as well. Polycystic kidney disease or PKD is a genetic disorder. It's the most common, potentially fatal genetic disorder. Affected patients will over time develop cysts in the kidneys and they can develop so many cysts that the good kidney tissue is essentially replaced or destroyed and then that leads to the chronic kidney disease and kidney failure. At this time, the treatment or potential treatments for PKD are very limited. The treatment at this point is really focused on trying to limit other risk factors that we know can lead to progression of kidney disease or kidney injury. We started the PKD clinic here a number of years ago because of the just broad range of expertise that we had both in the clinicians as well as the basic scientists who have a strong research interest in PKD.
We see, again, patients in all stages of the disease. The PKD clinic here offers the ability to, first of all, diagnose the disease. We can also give information about prognosis and then obviously we're focused on trying to treat the disease as best we can. We can offer further consultation with other specialists to help interpret some of the results. There's also access to clinical trials. Our program is unique in this area because there, to my knowledge, isn't another clinic that's solely dedicated to PKD patients only. The other thing is that we have not just clinicians but we have researchers that have PKD as their sole focus. We have a wide range of diagnostic imaging that we can use to to help clarify the diagnosis. Sometimes we are referred patients who've been diagnosed with PKD and we find out that it's something completely different as well. So I think the just the close focus on polycystic kidney disease and the progression of the disease and the complications are something that we're, I think particularly well equipped to deal with.
Jennifer Branch: I feel like I'm at the best place that I possibly can be with polycystic kidney disease. I like to share my journey with other people. People can live a very long, healthy life with kidney disease. It is definitely something that you can work with people who are very caring, very knowledgeable and very invested in kidney disease and helping people like myself. They're so close to identifying all the genes responsible and coming up with medications and treatments that can help people with polycystic kidney disease.
Dr. Franz Winklhofer: The future for PKD treatment is still bright. There are numerous other targets that potential therapies may become available for. The amount of research that's being brought to bear to try and find a cure is more now than ever.
Comprehensive diagnosis and treatment
The specialists on our polycystic kidney disease (PKD) team at The University of Kansas Health System in Kansas City are caring and knowledgeable experts invested in the proper diagnosis and continued care of people living with PKD. Our clinicians work closely with patients to accurately diagnose, correctly stage and actively monitor the progression of PKD. Our team provides a full spectrum of excellent care that includes the latest options, further consultation and the opportunity to participate in clinical trials as they become available.
Tolvaptan: An exciting treatment breakthrough
Until now, there was no direct treatment beyond managing symptoms and associated conditions, such as hypertension and urinary tract infection. With the approval of tolvaptan for PKD treatment, we can now do more, working with patients earlier in their disease progression in the hope of slowing kidney function decline.
Our physicians and researchers have been studying this newly approved drug for more than a decade. We offer years of experiences with tolvaptan, its side effects and dosing process.
Our PKD clinic has regular openings. Physicians may refer patients, and patients may self-refer, by calling 913-588-6048.
The Kidney Institute: A world-class research facility
A specialty clinic
We offer a comprehensive clinic dedicated to the care of patients with PKD. As 1 of only 4 National Institutes of Health-designated PKD research and translation core centers, we provide access to the latest clinical trials and treatments to improve the lives of individuals with PKD. Our board-certified nephrologists have extensive experience with PKD and tolvaptan treatment. In this weekly specialty clinic, we work closely with patients to accurately diagnose, correctly stage and actively monitor the progression of PKD.
We offer PKD clinic on Thursdays from 1-5 p.m. Services include:
- Clinical trials
- Complete continuum of kidney care
- Diagnostic imaging
- JYNARQUE™ (tolvaptan) treatment
- Transplant listing, surgery and continuum of care
Dialysis: Maximize your quality of life
Dialysis is offered at 2 convenient locations:
RAI Dialysis Care Center
6401 Parallel Parkway
Kansas City, KS 66102
RAI Dialysis Care Center
4720 Rainbow Blvd., Suite 200
Westwood, KS 66205
To schedule an appointment, call 913-588-1227 or toll free 844-323-1227.
Choosing a transplant center
The Center for Transplantation at The University of Kansas Health System offers a nationally recognized kidney program.
- Ranked among the top 50 kidney programs in the U.S.
- Significantly shorter organ wait list times (26.2 months average median wait time vs. 29 months in the region and 57 months in the nation)
- Highest 3-year success rate for kidney transplant survival among transplant centers in Kansas, Missouri, Nebraska and Iowa
- Largest organ transplant program in the region
- More than 1,800 kidney transplants performed
Our kidney transplant team is committed to providing outstanding, personalized care from your initial evaluation to your transplant procedure and for the rest of your life. Our expert transplant surgeons and transplant medicine specialists offer innovative surgical care for highly complex procedures using state-of-the-art techniques and technology.
The future of PKD treatment and research
Working within 1 of only 4 National Institutes of Health-designated research and translation core centers, our PKD physicians have access to the most advanced diagnosis and treatment options in the world. We provide a complete continuum of kidney care, including dialysis and transplant.
Learn more about the latest PKD clinical trials available through our partnership with the University of Kansas Medical Center.
Living well with kidney disease
Diagnosed with polycystic kidney disease, Jennifer Branch sought the region’s best resources for lifesaving care. She found The University of Kansas Health System, where dedicated caregivers and researchers focus on PKD diagnosis, education and treatment. “People can live a long, healthy life with kidney disease,” Jennifer said. “My team is caring, knowledgeable and invested. I feel wonderful.”
Learn more about The University of Kansas Health System's leaders in polycystic kidney disease diagnosis and treatment.
As PKD patients progress toward transplant, we partner with the leading specialists of our Center for Transplantation to provide advanced, multidisciplinary care that yields the best patient outcomes.