Emma’s Story: Preventing Kidney Stone Recurrence
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You’ll never find Emma without a water bottle — or three — by her side. Since having surgery last year to remove kidney stones, the high school senior drinks 100 fluid ounces of water a day to help prevent new stones from forming.
Emma was just 6 years old when she was diagnosed with her first kidney stone, a small, solid collection of mineral crystals that form in the kidney. Kidney stones can become painful if they enter the ureter, the tube that empties urine from the kidney into the bladder.
A decade later, surgeons at the Pediatric Kidney Stone Center at Children’s Hospital of Philadelphia (CHOP) discovered and removed more stones. Since then, they’ve been working with Emma on prevention measures to help keep more stones from developing.
Kidney stones are becoming more common in both adults and children. Emma’s family’s introduction to the condition came when Emma was just 6 years old and in first grade. One day they found blood in her urine. Her mother, PJ, brought her straight to CHOP, an hour from their home in Limerick, PA. After extensive testing in the ER, she was referred to a nephrologist, or kidney specialist. Her family got an immediate diagnosis when, during the appointment, Emma passed a kidney stone.
A comprehensive evaluation showed that Emma had too much calcium and not enough citrate in the urine, which both raise the likelihood of producing kidney stones. The family also learned some of their relatives had kidney stones. The condition tends to run in families.
After the kidney stone passed, Emma was symptom-free for a decade. Then, after Thanksgiving of 2016, she began complaining of stomachaches and back pain. When the pain didn’t go away, her parents brought her to CHOP Urgent Care in King of Prussia. After looking at Emma’s history with kidney stones, doctors referred her to the multidisciplinary Pediatric Kidney Stone Center at CHOP’s Main Campus. In the years since Emma had her first stone, the center had been established to meet the increasing need for specialized care for children with stone disease.
An ultrasound showed Emma had many stones in both kidneys. She met with urologist Gregory E. Tasian, MD, MSc, MSCE, and nephrologist Lawrence Copelovitch, MD, who determined that Emma would need surgery to remove the stones.
During surgery, Dr. Tasian inserted a long, thin fiberoptic telescope called a ureteroscope into her ureters and vaporized some of the stones in the kidneys and captured others for analysis.
The plaque inside Emma’s kidneys doesn’t cause her pain, but it’s not reversible or treatable, and makes more kidney stones likely. So now, it’s all about prevention. In addition to drinking water throughout the day, Emma takes a potassium citrate pill twice a day. She also watches her sodium intake, which helps decrease calcium excretion in the kidney.
“It seems easy, but it’s hard to maintain,” says PJ of her daughter’s diet. “Everything has sodium in it.”
Emma’s care team at the Pediatric Kidney Stone Center continues to monitor her kidney health. Every six months, she has a 24-hour urine analysis to measure urine volume and levels of acidity, calcium, sodium, uric acid, oxalate and citrate.
To Emma, now 17, managing her kidney health is just part of life. She doesn’t let it interfere with sports (she competes in high school track, both pole vaulting and shot put), or with her summer plans to lifeguard at a summer camp in the Poconos. In the fall she will attend Bloomsburg University in Pennsylvania, where she will double major in special education and elementary education.
Dr. Tasian has already told Emma to skip campus health services if she has abdominal pain, and go directly to the local hospital instead. Her team at CHOP is prepared to consult with local physicians to make sure Emma receives coordinated care.
“Our philosophy is to provide a stable care ‘home’ for patients and their families as they grow up,” says Dr. Tasian. “We will continue to care for them during college and work with them to find an appropriate adult care team wherever they end up after they graduate.”
"Kidney stones seemed like something that happened to older people, so I never imagined that I'd be diagnosed with a kidney disease as a teenager,” says Emma. “But now it's just a part of who I am."