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The Best of Both Worlds: Convenient and Comprehensive Pediatric Post-Transplant Care

Contributor: Paul Fadakar, MD
6 minute read
Pat with his siblings.
Pat with his siblings.

Patrick McCormick, 17, was born with smaller-than-normal kidneys. By age 6, he had signs of chronic kidney disease, which leads to a gradual decline in kidney function. This meant he would likely undergo a kidney transplant one day. The only question was when. 

Starting at Mass General Brigham for Children as a baby

Pat, who was born in Haverhill, Massachusetts, has dealt with multiple medical issues his entire life. He is on the autism spectrum, nonverbal, and has mitochondrial disorder (which prevents the body's cells from producing enough energy).

When Pat was a baby, his pediatrician referred him to Mass General Brigham for Children in Boston for kidney care. As other health issues emerged, his care team swelled to include specialists in neurology, gastroenterology, dermatology, and allergy and immunology.

Pat's family left New England when he was 8. Over the next few years, his kidney function slowly got worse. Due to his developmental needs, dialysis was not a viable option. Instead, he was placed on the kidney transplant list.

Pat ended up receiving a kidney transplant at a Georgia hospital at age 15. The surgery happened to take place on the 50th birthday of his mother, Margarita Haas, who called it "the best birthday present ever."

While the transplant meant he would not need dialysis, it also meant lifelong vigilance. Pat would need careful monitoring to ensure his body was not rejecting the kidney or developing any dangerous infections.

Pat receiving care from Mass General Brigham for Children.
Pat receiving care from Mass General Brigham for Children.

A home base for his post-transplant care

Two years ago, Pat's family moved back to the area. Margarita was thrilled to learn that Mass General Brigham for Children at Wentworth-Douglass Hospital could serve as the home base for his post-transplant care.

"I can't even tell you what a blessing that is," she said. "I thank God for the great team of doctors and nurses that we have up here."

Pat now sees his pediatric nephrologist, Paul Fadakar, MD, every three months at Wentworth-Douglass, just a short drive from his family's home in southern New Hampshire. Once a year, Margarita takes him to Mass General Brigham for Children in Boston for a comprehensive visit with Dr. Fadakar and several other specialists.

"Receiving most of his care at Wentworth-Douglass is much more convenient for Pat and his family," said Dr. Fadakar, medical director of the Pediatric Kidney Transplant Program at Mass General Brigham for Children. "And his annual visit in Boston allows him to benefit from the kind of comprehensive, multidisciplinary care that is so critical for post-transplant patients."

Pat with his mom, Margarita.
Pat with his mom, Margarita.

Finding the 'sweet spot' with medications

During one of Pat's typical visits to Wentworth-Douglass, Dr. Fadakar reviews his lab results to assess his kidney function and watch for complications, especially after illnesses that may lead to infections.

"The immunosuppressive drugs he takes help prevent organ rejection, but they can also increase risk of infection," Dr. Fadakar said. "My job is to find the 'sweet spot' for each individual—that is, adjusting their medications to strike the right balance between rejection risk and infection risk."

"Dr. Fadakar is very personable. He is easy to talk to and explains things in a way that I can understand," Margarita said. "He listens, provides feedback, and answers my questions. I love his bedside manner."

Pat's care team at Mass General Brigham for Children includes several specialists along with a nurse coordinator, social worker, and dietitian. His nurse coordinator, Linda Mazzola, works closely with her nursing counterparts at Wentworth-Douglass to coordinate Pat's care. She also updates Margarita on lab results and medication changes.

"It's great that Pat can get most of his care at Wentworth-Douglass. But not all the specialties and services he needs are available at a community hospital," Dr. Fadakar said. "Our ability to bolster what Wentworth-Douglass offers with an annual visit to Boston is a real advantage for Mass General Brigham."

Furthermore, Mass General Brigham for Children has a program that supports pediatric transplant patients in transitioning to the care of adult transplant doctors at Massachusetts General Hospital. As a result, patients like Pat can count on lifelong continuity of care within the Mass General Brigham system. 

Pat’s school picture.
Pat’s school picture.

No need to go anywhere else

Pat, who attends high school in Durham, New Hampshire, enjoys visiting the playground, grocery shopping, walking trails, and meeting new people. With the help of the school district, Margarita recently secured a portable communication device that makes it easier for him to make requests and express how he's feeling. "He seems a lot happier and less frustrated now," she said. 

Whenever Margarita is with Pat, his safety and well-being are her top concerns. She always needs to be aware of where he is and what he's up to. It can be exhausting, but there's also an upside. 

"Despite all the challenges he's faced, he's healthy now," she said. "He's made me see what's really important—slowing down and enjoying life. If you're healthy, you're happy." 

Margarita also has a teenage daughter with special needs and has come to rely on Mass General Brigham more and more in recent years.

"I'm very pleased with the care my kids have received," she said. "I don't even bother going outside of Mass General Brigham for their care. It's reassuring knowing that the hospitals communicate so well with each other and that we can keep everything within the system."

 

 Head shot of Paul Fadakar, MD

Contributor

Pediatric Nephrologist