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UW Health named center of excellence for polycystic kidney disease
Madison, Wis. – Five years ago, Steph Moran went to an emergency department in Madison with stomach pain, and left with something she never expected.
Doctors diagnosed her with stage 3 chronic kidney disease and autosomal dominant polycystic kidney disease or ADPKD.
Moran, a Waunakee native, wife and mother with four grown daughters, had a family history of this particular kidney disease, but still described the news as shocking.
“I was taken aback,” she said. “I grew up watching my grandma struggle with this disease, but I couldn’t believe it was happening to me.”
Moran was told it was stage 3 out of 5 and she would need to seek treatment right away.
“As stressful as that experience was, I was grateful to learn the expert care I needed was right in my own backyard,” Moran said.
Polycystic kidney disease, or PKD, is a condition where fluid-filled cysts develop and enlarge in the kidneys, eventually leading to kidney failure; it is one of the most common, life-threatening genetic diseases. There are two main types of PKD: ADPKD, which is usually diagnosed in adulthood, and autosomal recessive PKD, which can be diagnosed prior to or shortly after birth. PKD affects half a million people in the United States and it is the fourth-leading cause of kidney failure in the U.S.
Moran was sent to the UW Health Polycystic Kidney Disease Clinic, where she met the director of the clinic, Dr. Gauri Bhutani, a nephrologist, or kidney doctor, at UW Health. Bhutani, who is also an associate clinical professor of medicine at the University of Wisconsin School of Medicine and Public Health, was able to put Moran on specific medication to keep her kidney disease in check.
Moran takes two pills a day, gets blood draws monthly and has approximately four checkups a year with the clinic. Five years later she is still in stage 3.
“When I first met the team at UW Health, I was told my kidney function was at 50 percent and when I was at 20 percent, I would need a transplant,” Moran said. “The doctors got me on the right medication, and I can’t believe it, but five years later I am still at 50 percent function.”
While Moran might eventually need a kidney transplant, she has been able to resume her normal activities while managing the disease.
“I was so scared that my life was going to change instantly with this diagnosis, but the health care team has been with me every step of the way and they’ve been able to keep this disease at bay,” Moran said. “I am going to be able to go to my daughter’s wedding next year. I am going to be able to be a grandma. I can see a future now thanks to the team at UW Health.”
The UW Health Polycystic Kidney Disease Clinic sees more than 200 patients a year and has a comprehensive, multidisciplinary care team of experts in nephrology, urology, radiology, hepatology, genetics and pain management collaborating to meet the needs of the patients, according to Dr. Suzanne Norby, nephrologist, UW Health, professor of medicine, UW School of Medicine and Public Health.
“This is often called a silent disease, because people with PKD might not know they have it until they seek medical care for other reasons and it shows up on a scan,” she said. “Our clinic has state-of-the-art imaging, access to clinical trials looking at new medications that may help slow the disease, as well as educational resources for patients and families.”
Recently, UW Health’s Polycystic Kidney Disease Clinic was named a national center of excellence by the PKD Foundation. UW Health is just one of 28 sites in the country to receive this honor and the only one in Wisconsin. It will be a three-year designation.
UW Health will now be a part of a national network of experts working to ensure better patient outcomes and ultimately find a cure for PKD through research. The foundation will also provide resources for patients and families including grant support for a patient navigator, according to Norby.
“We hope this recognition allows us to reach more patients in the state of Wisconsin and in the region,” she said. “We want to provide patient-centered therapy to slow the progression of kidney disease and also offer screening for family members to allow earlier diagnosis.”
The center’s goal is to slow the progression of kidney disease, so patients don’t reach end-stage kidney failure, or if that occurs, to have every patient receive a kidney transplant before they need dialysis, which is a treatment for kidney failure, she said.
As for Moran, she hopes her story inspires others.
“By sharing my story, I want to raise awareness for kidney disease because there are probably people out there who don’t even know they have it, just like me,” she said. “I want to help people and encourage those with a family history to go get checked out.”