For parents whose child needs a kidney transplant, the process is onerous and time-consuming – at best.
There are authorizations for imaging studies and special medications. Referrals for physician subspecialist evaluations. The dialysis, three times a week, on which their child’s life depends.
Getting listed 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 move quickly, seizing a narrow window of opportunity.
Parents must sometimes leave their jobs to tend to their children full-time. And for single-parent families with multiple children, the situation is even more complicated.
That’s where Valeria Méndez comes in. A renal care coordinator at Puerto Rico’s University Pediatric Hospital, it’s her job to help families navigate the complexities of medical appointments, transportation, and procuring equipment and medications. She stays on top of transplant-list requirements and helps families keep and maintain the essential documentation.
Méndez is accustomed to working with chronic illnesses, having worked as a case manager for a health insurance company. But when she was offered the chance to improve the lives of children in need of a kidney transplant, she couldn’t resist.
“If I can do my part to improve those children’s lives, it’s something that fills me with joy and makes me happy,” Méndez said.
A stepped-up timeline
By all accounts, they’re happy to have her too. Before she came to the hospital, parents were burdened with the tasks of coordinating all appointments and referrals themselves. Although there were staff members available for guidance, the sheer magnitude of the work involved was causing delays. It was taking an average of one year to clear patients for transplant.
To streamline the enlistment process for children needing a kidney transplant, Direct Relief awarded a grant of more than $100,000 to the University Pediatric Hospital Foundation to subsidize two years’ salary for a renal care coordinator.
Now, “my goal is to enlist patients [on the transplant list] in six months,” Méndez said.
Her efforts are appreciated. “Valeria has changed these families’ lives. She has been a blessing,” said Dr. Nilka de Jesús, a nephrologist and director of the Transplant Center at the 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 renal disease, leaving her grandmother as her caregiver. Even though her grandmother worked at night, Xhiany never missed an appointment.
“When I told Xhiany that they were ready to do the transplant, she said, ‘I’m finally going to make my mom’s wish come true,’” Méndez recalled.
Pediatric transplants have been performed in Puerto Rico since the early 1980s, but in 2013, transplants on the island stopped entirely. There were no surgeons on the island who could perform them. Transplants finally resumed in 2017 – but were halted almost immediately, when Hurricane Maria made landfall. Although they were reinstated the following year, Covid-19 has slowed the rate of transplants.
But Méndez, who started her work in September of 2020, is changing that. She’s already overseen the successful transplant of six children and the enlistment of another three.
One boy, Méndez recalled, was particularly excited to eat a pizza after his transplant was complete. “His happy face marked me,” she said. “Seeing him eat a pizza with so much joy gave me a lot of satisfaction.”
Paperwork isn’t the only stalling point. To qualify 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 rely largely on the Puerto Rican government health insurance – the equivalent of Medicaid. The money is a huge hurdle. “Not many families have that amount of money in their accounts,” Méndez said. Some families “come from municipalities that are far away, and some are single mothers with other children who are limited in terms of family and community support.”
Recognizing this additional barrier, Direct Relief joined forces with the Extra Bases Foundation, a nonprofit led by the former major-league baseball player Carlos Delgado.
Through a $75,000 Direct Relief grant, Extra Bases is able to provide each patient on the transplant list with the necessary $3,000. Another $50,000 grant helps fund other associated expenses – specialists’ evaluations, medical procedures, equipment that isn’t covered by insurance.
Méndez’s work “has been what we have dreamed for so long for our patients,” said de Jesús. Being able to provide both the coordination and financial support “helps improve the quality of life of these kids.”