It was a birthday present unlike any Linda Small had ever received. She was brought out of the operating room the day before her birthday on February 23 with a kidney donated by 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 problems, such as liver cysts, blood vessel problems, hypertension and brain aneurysms. If the disease is not treated, patients may need dialysis or a kidney transplant to survive.
Little 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 — no one in my family knew either,” Small said. “I knew I might 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 looking for a local PKD expert who could help clearly define her treatment plan. That led him to UC San Diego Health’s PKD program, led by
Pranav Garimella, MD, MPHnephrologist.
As part of San Diego County’s only academic medical center, UC San Diego Health nephrologists provide high-level clinical care while collaborating with researchers to develop new therapies for kidney disease.
“I looked for someone who, from start to finish, could really show me what I was in for — all the steps, including the kidney transplant,” Small said, adding that for decades her specific questions about PKD remained mostly unanswered.
“The entire kidney team at UC San Diego Health went above and beyond, addressing all of my questions and concerns. They had everything lined up and met every detail for 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 from the National PKD Foundation—the leading advocacy group dedicated to finding treatments and a cure for PKD.
UC San Diego Health is one of only 28 institutions nationwide to receive the designation.
“It’s an honor to be recognized as a specialty center for ADPKD,” said Garimella, who directs the PKD program at UC San Diego Health. “We are the only designated PKD Center of Excellence in San Diego County that features multidisciplinary care under one umbrella. The care provided to Mrs. Small is an example of the exceptional approach used by a dedicated team.”
The Center of Excellence designation is a new PKD Foundation program designed to recognize organizations that exemplify comprehensive patient-centered care with the coordination and support of a patient navigation team.
“The center that Dr. Garimella leads is an exciting collaboration that brings together specialists from across the UC San Diego health system and provides evidence-based care for this patient population,” said.
Joachim H. Ix, MDchief of the division of nephrology-hypertension at UC San Diego Health.
“The designation as a PKD Center of Excellence is important to patients and their loved ones as they seek to receive advanced care to manage their disease. This recognition puts the expertise of our PKD center 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 together to ensure the highest quality of care and improved outcomes. of the patient.
“The ability for a patient to have a group of dedicated physicians who are constantly evolving and advancing care benefits them, and being at an institution like UC San Diego Health allows us to provide uninterrupted 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 her own. 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 link to the PKD Foundation registry. As a Center of Excellence, one of our commitments is to provide patients both locally and nationally with the opportunity to see what resources are available and what is happening at the foundation level. We want to build the registry of patients across the spectrum of disease severity and further understand their needs.”
Now nine months on the other side of her kidney transplant surgery, Small and LaRoche, who affectionately call themselves the “kidney sisters,” are dedicated to helping others with PKD navigate their disease. Small fondly remembers walking off the transplant floor at Jacobs Medical Center at UC San Diego Health as staff members sang and cheered, and she managed to ring a celebratory bell as she left the hospital.
“I was shocked when they rolled me by and the UC San Diego Health staff was there to celebrate with me,” Small said. “I was absolutely blown away by the amount of love and amazing treatment I received at UC San Diego Health throughout the transplant process. I will always appreciate their compassion.”
