A Kidney Transplant Program Gives a Puerto Rico Teen “Life in Abundance”

Cris Santos was a typical teenager living an active life in Puerto Rico.

But one day, as he swam in the ocean, he noticed his body beginning to swell. His kidneys weren't working properly, and it was causing his lower half to retain fluid.

"That's when we went to all the labs, all the hospitals," Cris told Direct Relief through a translator. It soon became clear that Cris was suffering from chronic renal failure. Out of nowhere, he would need a kidney transplant.

The Pediatric Renal Center at Dr. Antonio Ortiz University Pediatric Hospital is the only place on the island to offer dialysis, a treatment that filters waste and excess fluid from the body, and kidney transplants to children.

In Puerto Rico, the process of undergoing and supporting a kidney transplant is especially challenging. Imaging, referrals, and special medications take up time and money that many families don't have to spare.

To ensure patients have the money to follow post-operative care - because compromising on care can damage the odds of the transplant working - their families are expected to produce $3,000 before getting onto the transplant waitlist, to hold in an account for treatment.

But the median household income in Puerto Rico is $26,297. Many families can't quickly come up with $3,000, which puts a kidney transplant firmly out of reach.

To eliminate the barriers between kidney patients and transplants, Direct Relief created the Care Coordination Program in 2020.

Working with Extra Bases, a Puerto Rico-based nonprofit led by former Major League baseball player Carlos Delgado, Direct Relief awarded $75,000 to support pediatric patients who needed a spot on the transplant list, and to cover their expenses before and after the surgery.

Since 2020, Direct Relief has also provided grant funding to the Fundación Hospital Pediátrico to finance the salary of a Patient Care Coordinator who supports patients and their families through the complex transplant process.

"Navigating Our Healthcare System"

Since stepping into the role of Patient Care Coordinator, Josué Leduc has been a lifeline to his pediatric patients, guiding them through Puerto Rico's fragmented healthcare system.

Between the transplant center and renal dialysis center, Leduc serves 77 registered patients across all stages of kidney disease.

Before the Care Coordination Program, the University Pediatric Hospital managed one or two transplants per year. But since partnering with Direct Relief in 2020, the center has completed 17 successful transplants.

Leduc attributes this growth to a combination of Direct Relief's financial support and his own efforts to help families overcome obstacles that keep lifesaving transplants from going through. Coordinating appointments, arranging transportation, and carefully documenting an individual's care plan are just a few of Leduc's responsibilities.

"Navigating our healthcare system and accompanying [families] so that they can complete the required evaluations helps expedite the process," Leduc said through a translator.

Keeping to a strict dialysis schedule is a difficult process, especially for the teenage pediatric patients, who are often studying or working immediately before treatment. Leduc's presence and dedication to emotional well-being are designed to bring patients and families small moments of relief in such a demanding part of their lives.

One of the most rewarding parts of Leduc's job is to see his pediatric patients transform after receiving a kidney and leaving dialysis, he told Direct Relief.

"I've seen that physically, their face, their skin, and their mood changed," he explained. "Patients who didn't talk, or were introverted, now they talk and talk."

"Life in Abundance"

Cris, as the Care Coordination Program's thirteenth patient, significantly benefited from Leduc's support.

"It all happened in less than a year," he said of the preparation work, surgery, and recovery. "The process itself was extremely manageable, and everything went super well."

This is where the program delivers its greatest impact: Leduc accompanies families along the way, ensuring these children successfully undergo transplants and experience significantly improved quality of life.

Cris underwent peritoneal dialysis for just seven months - a short wait for transplant patients, who sometimes spend years waiting for a donor - before receiving a kidney from his mother, Arleen Bonilla.

For Arleen, the decision to donate her kidney was a no-brainer. "As a mother, there is nothing to think about when you see your child hooked up to a machine," she told Direct Relief.

Once the nephrologist determined her to be compatible, Arleen didn't hesitate to move forward. Mother and son went into surgery together in August of 2024, when Cris was 17 years old.

After the transplant, Cris's quality of life improved immensely. He gained a deeper appreciation for living, and for his mother, Arleen. "She gave me life twice," he said. "I know that the rest of the road for me is life and life in abundance."

His diet is no longer restricted, and he can return to the physical activities he loves most. Cris has been involved in the world of Christian dance and musical theatre since he was three years old. He has played numerous main characters from the Bible over the years and, with his newfound freedom, remains active in performing arts today.

Originally, Cris planned to study communications and pursue a career in that field. But his experiences with healthcare professionals and managing post-op medications sparked his interest in a new direction.

Today, nearly two years after his transplant, he is studying to become a pharmacy technician and hopes to one day play a crucial role in patient care.

As the Care Coordination Program grows and new patients arrive, Leduc is constantly looking for ways to do more. Every patient who wants and qualifies for a transplant should receive one.

A new educational program will be starting this year, tailored to the families of pediatric patients with kidney disease. Leduc explained that sessions focus on "understanding the patient's condition and the importance of adhering to medical instructions."

"Our other goal is empowerment," he said.