Stanford Medicine Children’s Health Doctors Help Teen Live Well with Kidney Disease

Reagan Sterling’s journey with chronic kidney disease began when she was just 7 years old. Since then, she has braved dialysis, surgery, and even a kidney transplant to battle a disease called focal segmental glomerulosclerosis (FSGS). Now, at 19, Reagan is a happy college student. With the support of her family and the doctors at Stanford Medicine Children’s Health, she proves that it is possible to truly live well with kidney disease.

FSGS is a serious kidney disease that has no cure. According to one of her doctors, Elizabeth Talley, MD, a pediatric nephrologist with Stanford Medicine Children’s Health, “This is a progressive disease in the vast majority of cases; half of all patients will be in renal failure within three to five years after their diagnosis.”

Reagan’s diagnosis was discovered when she was admitted for an unrelated hernia operation. “When she came out of surgery, her blood pressure was sky-high. So the doctors ran some tests, and then that’s when we found out that she was diagnosed with nephrotic syndrome,” said Reagan’s mother, Andrea Sterling.

Getting such a difficult diagnosis was hard for young Reagan. “I was in second, third grade when it all started, so I felt confused, just trying to figure out the whole ‘Why me? Why can’t I do things other kids can do?’ and feeling like I am a little left out and a little behind on getting a normal childhood,” she recalled.

While FSGS can be treated with diet changes, corticosteroids, and drugs that suppress the immune system, the scarring in the kidneys is permanent. Eventually, this can lead to kidney failure. This is what happened to Reagan when she was about 13 years old. Her condition worsened to the point that Dr. Talley felt they needed to do a nephrectomy, which is a surgery to remove the kidneys.

“Her disease causes her to lose so much protein in her urine, which makes it difficult to manage her disease and can affect her nutrition. When kids have a lot of protein losses, it means they aren’t making all the protein they need to really grow and be healthy,” Dr. Talley said.

Losing her kidneys meant that Reagan would need to undergo dialysis, where a machine cleans the blood, until she could receive donor kidneys for a transplant. Fortunately, Reagan was able to have her dialysis done at home instead of needing to go to a clinic several times a week.

“She would connect herself to the machine every night and the machine was programmed with her prescription, and she could sleep through her dialysis treatment, get up the next day, and go to school,” Dr. Talley explained. “It’s great for families who are able to do it at home and feel comfortable doing that because then the kids don’t miss any school as opposed to coming into a center to get dialysis.”

After being on the transplant list for about a year, Reagan was able to get a kidney transplant at Lucile Packard Children’s Hospital Stanford. Getting the transplant meant that Reagan got a fresh start with healthy kidneys and could get back to a more normal life.

“The transplant process was pretty smooth. The doctors at Stanford made everything seem pretty relaxed, easy, and simple,” Reagan said. “After I got the transplant, everything felt good, and I finally felt more at ease with my situation and everything.”

For patients, an organ transplant is a monumental event. However, it’s all part of a standard day for the pediatric transplant surgeons at Packard Children’s Hospital, one of the biggest pediatric kidney transplant centers in the country. Amy Gallo, MD, was the doctor who performed Reagan’s transplant.

“The exciting part of my job is having the means to get her back to her usual life. The fact that she is doing so well is a great testament to her and the gift from the donor, both of which are inspiring,” Dr. Gallo said.

The years of managing Reagan’s kidney disease created a strong bond between the Sterling family and the doctors at Packard Children’s Hospital. “Dr. Talley is like part of the family to me now. She kept me very calm throughout the whole process. I mean, we’re going on like 11 years now,” Andrea Sterling said.

“I can’t say enough about how great Stanford has been throughout this entire process,” she added. Everyone is just so helpful and so nice and supportive in making sure that we had what we needed as a family to deal with what was happening with Reagan.”

Reagan is now a freshman studying communications at Arizona State University. “I love being in college, and I love being able to navigate things for myself. I’m making friends out here, which is really good. I’m getting a taste of college life, given everything that’s happening, which I’m really happy about.”