For parents whose child needs a kidney transplant, the process is arduous and time-consuming at best.
There are authorizations for imaging tests and special medicines. Referrals for assessments of physician sub-specialists. The dialysis, three times a week, on which the life of their child depends.
Getting on the list for a kidney transplant involves numerous time-sensitive steps and costly resources when a long-awaited organ becomes available. The patient, their family and their medical team must be ready to act quickly and seize a small opportunity.
Parents sometimes have to quit their jobs to care for their children full-time. And for single-parent families with several children, the situation is even more complicated.
That’s where Valeria Méndez comes in. As a Kidney Care Coordinator at the University Children’s Hospital of Puerto Rico, her job is to help families navigate the complexities of medical appointments, transportation, and the purchase of equipment and medications. She keeps abreast of transplant list requirements and helps families maintain and maintain essential documentation.
Méndez is used to working with chronic diseases, including as a case manager for a health insurer. But when she got the chance to improve the lives of children who needed a kidney transplant, she couldn’t resist the temptation.
“If I can do my part to improve the lives of those children, that is something that fills me with joy and makes me happy,” said Méndez.
A souped-up timeline
At least they are happy to have her too. Before coming to the hospital, parents were tasked with coordinating all appointments and referrals themselves. While staff members were available for guidance, the sheer volume of the work caused delays. It took an average of a year to clear patients for transplantation.
To streamline the application process for children in need of a kidney transplant, Direct Relief has awarded a grant of more than $100,000 to the University Pediatric Hospital Foundation to subsidize a two-year salary for a kidney care coordinator.
Now, “My Goal Is To Employ Patients” [on the transplant list] in six months,” said Méndez.
Her efforts are appreciated. “Valeria has changed the lives of these families. She has been a blessing,” said Dr. Nilka de Jesús, nephrologist and director of the transplant center at Auxilio Mutuo Hospital.
Wishes come true
Xhiany, a 10-year-old girl, was one of Méndez’s first patients. Xhiany’s mother had died of end-stage kidney disease, leaving her grandmother as her caretaker. Although her grandmother worked at night, Xhiany never missed an appointment.
“When I told Xhiany that they were ready for the transplant, she said, ‘I’m finally going to make my mother’s wish come true,'” recalls Méndez.
Pediatric transplants have been performed in Puerto Rico since the early 1980s, but transplants completely stopped on the island in 2013. There were no surgeons on the island to perform them. The transplants eventually resumed in 2017, but were halted almost immediately when Hurricane Maria made landfall. Although they were restored the following year, Covid-19 has slowed the number of transplants.
But Méndez, who started her work in September 2020, is changing that. She has already overseen the successful transplantation of six children and the hiring of another three.
Valeria Méndez in her office. (Photo courtesy of the Children’s Hospital Foundation)
One boy, Méndez recalled, was particularly excited to eat a pizza after his transplant was completed. “His happy face characterized me,” she said. “Seeing him eat a pizza with such joy gave me great satisfaction.”
Paperwork isn’t the only glitch. To be eligible for the transplant list, patients need at least $3,000 in an escrow account to cover any post-transplant costs.
But many children awaiting transplants come from low-income families and are largely dependent on Puerto Rican government health insurance — the equivalent of Medicaid. Money is a huge hurdle. “Not many families have that much money in their accounts,” says Méndez. Some families “come from communities that are far away, and some are single mothers with other children who are limited in terms of family and community support.”
Direct Relief recognized this additional barrier and joined forces with the Extra Bases Foundation, a non-profit organization led by former major league baseball player Carlos Delgado.
Through a $75,000 Direct Relief grant, Extra Bases can provide each patient on the transplant list with the needed $3,000. Another $50,000 grant helps fund other related costs — specialist evaluations, medical procedures, equipment not covered by insurance.
Méndez’s work “is what we have long dreamed of for our patients,” de Jesús said. Being able to provide both coordination and financial support “helps improve the quality of life for these children.”