Nephrotic Syndrome: Julio's Story

Close to home: after transplant, Julio finds convenient care

Living with illness is all that 10-year-old Julio Garcia has known, according to his mother, Nicole Garcia. Until Julio was two years old, Nicole thought her child was healthy and growing normally. Soon thereafter, he became ill, pale, and developed swelling of his face. Nicole knew something was wrong and she took her son to the hospital where tests determined that Julio had nephrotic syndrome.

A tough diagnosis

Nephrotic syndrome, a collection of signs and symptoms of a kidney disorder characterized by the loss of protein from the body into the urine, resulted in Julio’s symptoms. In April 2007, he underwent a kidney biopsy which revealed the diagnosis of focal segmental glomerulosclerosis (FSGS) as the specific cause of the nephrotic syndrome in his case. This disorder does not respond well to medications and frequently results in the ultimate development of kidney failure. Julio’s doctor, Bradley A. Warady, MD, Director, Division of Nephrology and Director of Dialysis and Transplantation, describes the disorder as one of the most severe pediatric kidney disorders.

In January 2010, at age six and unresponsive to all medications designed to treat FSGS, both of Julio’s kidneys were removed to prevent the ongoing loss of protein in his urine and his worsening symptoms. However, he immediately needed to begin dialysis therapy. He stayed on dialysis until September 2013 when he received a kidney transplant. Unfortunately, Julio’s disease was aggressive and reoccurred in his transplanted kidney just days after the operation.

Care close to home

Now, Julio travels to the Adele Hall Campus once a month for appointments with Dr. Warady and attends the Nephrology Clinic at Children’s Mercy Wichita once a week. There, Pediatric Nephrology Nurse Practitioner Catherine Powell, APRN-C, helps Dr. Warady manage Julio’s care which includes weekly plasmapheresis treatments. The plasmapheresis process filters Julio’s blood and helps decrease the loss of protein from his transplanted kidney. 

“He’s still getting Children’s Mercy’s level of care, but the clinic is closer for his family and they don’t have to travel to Kansas City so often,” Powell said.

Dr. Warady’s ultimate goal is to be able to remove plasmapheresis from Julio’s schedule completely and manage the disorder with medication and regular monitoring of his physical well-being and laboratory status. He explained that because of the kidney transplant, Julio’s quality of life is continuing to improve.

“Things are under much better control than they were in the past. I know he feels good. He used to have very high blood pressure and that is now completely resolved” Dr. Warady said. “He is also attending school. While he still has to deal with some medical challenges, many things are much better in his life compared to when he was on dialysis.”

From his kidneys to his asthma, Nicole said hospital visits and sickness is something they are both used to handling.

“Even though he’s missed a lot of school, he’s a very smart kid. He takes his medication and does what he needs to do to keep his kidney as healthy as possible. Everything looks really good for him now,” Nicole said.

Get up and go

Thanks to the care Julio has received, he can enjoy his favorite hobbies like going to the park, riding his bike and playing soccer.

“Before his transplant, he didn’t want to do anything and now, since the transplant, he always wants to get up and go,” Nicole said.

Nicole said her family appreciates the experiences they have had with Children’s Mercy Hospital and Children’s Mercy Wichita. 

“They work with us so that we don’t have to stay in Kansas City for long periods of time. The transplant team and I constantly stay in contact and we regularly review the results of Julio’s blood work,” Nicole said. “It’s been one of the best experiences I’ve ever had with a hospital.”