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Will’s story: Conquering kidney disease one accomplishment at a time

08/08/2017

William McAllister is a kidney disease patient who's been treated at both Floating Hospital and Tufts Medical Center in downtown Boston, MA.

It’s been a hectic few months for William McAllister. The 22-year-old graduated from Southern New Hampshire University with a bachelor’s degree in Marketing. He landed a job as an investment services representative with Putnam Investments. He transitioned from pediatric care at Floating Hospital for Children to adult care at Tufts Medical Center. And he’s in full training mode for his next Spartan race, a grueling obstacle course complete with climbing walls, muddy rivers and barbwire fences.

For any new college graduate, these are accomplishments worth cheering. For Will, born with kidney disease and a kidney transplant patient at 16, they are cause for celebration— times ten. But Will, an affable and honest young man, isn’t one to toot his own horn. In his eyes, he’s just a normal guy making his way. 

“I’ve never slowed down,” admitted Will when asked how his medical challenges affected him growing up. “I’ve done sports all my life – baseball, basketball, track. I go to the gym every day and I eat healthy. My mom worries about me sometimes and I tell her, ‘Mom, relax. I’m fine. My health is fine. Everything is fine – and I want to keep it that way!’”

Newborn kidney disease diagnosis

William McAllister is a kidney disease patient who's been treated at both Floating Hospital and Tufts Medical Center in downtown Boston, MA.Despite these assurances from her confident son, Will’s mother Caroline remembers a time when he was not fine. Soon after his birth, Caroline and her husband, Bill, went from joy at becoming new parents to fear when their newborn was admitted to the Pediatric Intensive Care Unit at Floating Hospital with a urinary tract infection. “We were told he had hydronephrosis (distension of the kidney due to a structural abnormality) and was in kidney failure,” she recalled.

Enter Lawrence Milner, MD, chief of the Division of Pediatric Nephrology. Consistently rated by Boston Magazine as a “Top Doctor,” Dr. Milner and his Pediatric Nephrology Nurse Linda Mazzola quickly became mainstays to the McAllister family.

“Will was born with a structural abnormality of his bladder called posterior urethral valve obstruction which prevented urine from flowing normally,” said Dr. Milner. “He needed several corrective surgeries to establish flow. It was technically challenging because his bladder was so distorted. We weren’t optimistic that his kidneys would recover and knew a kidney transplant was in the future.” George Klauber, MD, chief of Pediatric Urology,  performed Will’s initial surgery.

Dr. Milner and Linda Mazzola as mainstays

Following each surgery – ten in all – Linda played an important role keeping Will healthy and guiding his parents. “I’ve been nurse, social worker, teacher and second mother,” she said. “I have a son the same age as Will so I identify with him and his mom. We knew Will was going to outgrow his kidney function at some point. We just didn’t know when, so that was daunting. It was a team effort monitoring his health and watching his labs.”

Caroline tried her best to heed Dr. Milner’s and Linda’s advice and treat Will the same as she did her younger son Brett. “But you worry,” she said. “About infection, about every symptom. He’d come home from school with a stomach ache and I’d say, “Oh my God, lie down. Let me rub your stomach!” But one day I realized I had to snap out of it for Will’s sake. It wasn’t his fault he had a chronic illness. As a mom, it’s natural to worry about your kids but you have to keep a positive attitude and trust your doctor and a higher power.”

Donor matching and kidney transplant surgery

William McAllister is a kidney disease patient who's been treated at both Floating Hospital and Tufts Medical Center in downtown Boston, MA.

This new perspective gave Caroline strength as her son’s kidney function declined and it became clear that a kidney transplant was imminent. Their family had compatibility blood testing to see who was the best potential kidney donor match. “Bill’s entire family matched,” said Caroline. “Brett was a perfect match but he was too young, so Bill became the donor.”

Linda worked closely with transplant coordinators in the Renal Transplant Program to organize the father/son surgeries. After the transplant, Will was prescribed immunosuppressants, in close coordination with the transplant surgery team, to minimize rejection of the donated kidney.

Life after transplant

Will was homeschooled for several months as his immune system grew and then “jumped right back into to high school,” he said. He had one post-transplant scare when he developed lymphoproliferative disorder, a disease in which the lymphatic system cells grow excessively. “We decreased his immunosuppression drugs and hoped his body didn’t reject the kidney,” said Linda.

As Will recovered and forged on through high school and into college, Caroline and Bill found their new normal. Both self-employed: he as a caterer and she in insurance, the McAllisters had their share of stress and financial troubles over the years. “But I believe God gives you what you can handle,” said Caroline. “Having a sick child made our family stronger.”

From Floating Hospital for Children to Tufts Medical Center

Dr. Milner said Will’s long-standing bladder problems were resolved with the kidney transplant. “The new kidney comes with a whole new connecting system,” he said. Dr. Milner and Linda monitored Will every four months after the transplant. Theirs has been a binding, mutually beneficial relationship.

“The most joyful part of my career is to follow children who have kidney failure through childhood to transplant and into adulthood,” said Dr. Milner. “Will has done so well —he has become this amazing, independent person.”

Part of that independence meant transitioning from pediatric nephrology at Floating Hospital to the adult service in the Division of Nephrology at Tufts Medical Center. Will said it was difficult leaving his care team but he’s getting comfortable with his adult nephrologist Scott Gilbert, MD. “I’m not a kid anymore. I need to manage my own health,” he said.

According to Dr. Milner, “The beauty of having Floating and Tufts MC attached at the hip is that, while we transfer pediatric patients to the adult side, we never break the ties. We are always here for them. They can pop in and update us on their lives.”

When Will visits his old friends, he has a lot to share. There’s his health, of course, his new job and another Spartan race – this one his favorite —at Fenway Park.