It was a birthday gift unlike any other Linda Small had ever received. She was wheeled out of the operating room the day before her birthday on Feb. 23 with a donated kidney from her sister, Annette LaRoche, and a new lease on life.
At age 27, Small was diagnosed with autosomal dominant polycystic kidney disease (ADPKD) — a type of chronic kidney disease that causes fluid-filled cysts to grow in the kidneys, enlarging and damaging them over time.
UC San Diego Health has been named a Center of Excellence for polycystic kidney disease (PKD). Nephrology experts, from left to right: Noureddin Nourbakhsh, DO; Natalie Sweiss, MD; Pranav Garimella, MD; Adnan Khan, MD.
ADPKD is the most common type of cystic kidney disease, accounting for more than 90% of cases. ADPKD can also affect other organs and cause serious health issues, such as cysts in the liver, blood vessel problems, hypertension, and brain aneurysms. If the disease is left untreated, patients may need dialysis or a kidney transplant to survive.
Small sought treatment options from nephrologists (kidney specialists) over the years but could never get a clear roadmap of what her future treatment would entail.
“I had no idea what polycystic kidney disease was — nobody in my family knew either,” said Small. “I knew I may eventually need a transplant, but it was hard to find any specific information about it.”
Five years ago, she contacted the national Polycystic Kidney Disease Foundation searching for a local PKD expert who could help clearly define her treatment plan. It led her to UC San Diego Health’s PKD program, led by
Pranav Garimella, MD, MPH, nephrologist.
As part of the only academic medical center in San Diego County, UC San Diego Health’s nephrologists provide state-of-the-art clinical care while collaborating with researchers to develop new therapies for kidney disease.
“I sought to find someone who, from beginning to end, could really tell me what I was in for — all the steps, including a kidney transplant,” said Small, adding that for decades her PKD-specific questions went largely unanswered.
“The whole UC San Diego Health kidney team went above and beyond, addressing all my questions and concerns. They had everything lined up and went over every detail with me. Having that reassurance and support means everything as a patient.”
A multidisciplinary approach to ADPKD care has earned UC San Diego Health’s PKD program a Center of Excellence designation by the National PKD Foundation — the leading advocacy group dedicated to finding treatments and a cure for PKD.
UC San Diego Health is one of just 28 institutions nationwide to receive the designation.
“It is an honor to be recognized as a specialty center for ADPKD,” said Garimella, who leads the PKD program at UC San Diego Health. “We are the only designated PKD Center of Excellence in San Diego County featuring multidisciplinary care under one umbrella. The care provided to Ms. Small is an example of the remarkable approach used by a dedicated team.”
The Center of Excellence designation is a new PKD Foundation program created to recognize organizations that exemplify patient-focused, comprehensive care with the coordination and support of a patient navigation team.
“The center Dr. Garimella leads is an exciting collaboration that pulls together specialists from across the UC San Diego Health system and provides evidence-based care for this patient population,” said
Joachim H. Ix, MD, chief of the division of nephrology-hypertension at UC San Diego Health.
“The designation as a PKD Center of Excellence is important for patients and their loved ones when they are looking to receive leading-edge care to manage their disease. This recognition puts our center’s PKD expertise in the national spotlight.”
The PKD team, comprised of experts in adult and pediatric nephrology, kidney transplantation, radiology, hepatology, genetics, pain management and patient coordination, work in tandem to ensure the highest quality of care and improved patient outcomes.
“The ability for a patient to have a dedicated group of physicians who are continually evolving and advancing care benefits them, and being at an institution like UC San Diego Health allows us to provide seamless care for the most complicated cases,” Garimella said.
When Linda Small, left, needed a kidney transplant due to autosomal dominant polycystic kidney disease (ADPKD), her sister Annette LaRoche, right, didn’t hesitate to offer one of hers. The transplant took place at UC San Diego Health in February. Photo courtesy of Linda Small.
“Moving forward, we hope to build a comprehensive registry of all our patients and liaise with the PKD Foundation’s registry. As a Center of Excellence, one of our commitments is to provide the ability for patients both locally and nationally to see what resources are available and what’s happening at the foundation level. We’d like to build the registry of patients across the spectrum of severity of disease and further understand their needs.”
Now nine months on the other side of her kidney transplant surgery, Small and LaRoche, who lovingly call themselves “the kidney sisters,” are dedicated to helping others with PKD navigate their disease. Small fondly remembers her exit from the transplant floor at Jacobs Medical Center at UC San Diego Health as staff members sang and cheered and she got to ring a celebratory bell as she left the hospital.
“I was shocked when they wheeled me around the corner and the UC San Diego Health staff were there to celebrate with me,” Small said. “I was absolutely blown away by the amount of love and the amazing treatment I got at UC San Diego Health through the whole transplant process. I will always appreciate their compassion.”