Joe Sullivan started gaining weight in the summer of 1978, when he was 17 years old. He put on 40 pounds—all water, but he didn’t know that.
By October, the swelling in his legs and ankles kept him out of school, and a tutor started coming to his house. Months passed. High doses of prednisone—the drug required to treat the swelling—kept him up at night, but, “presto magic,” recalls Joe, “I got better, went back to school and graduated with everyone in May. I didn’t understand what was going on. My parents weren’t the types to speak about it.”
Joe started college that fall, hitchhiking the 32 miles between home and school. The semester went smoothly, and all seemed well until a couple of days after Christmas, when he was admitted to Boston Children’s Hospital. He was diagnosed with nephritis, inflammation of the kidneys.
Joe doesn’t remember much from that time. “Next thing I knew, I was on dialysis,” he says. “Soon I was going for five hours per day, three days per week. I was so sick. I weighed about 80 pounds. I had to pretty much stay in the hospital.”
That dialysis schedule continued for more than six months, until Joe learned he was eligible for a kidney transplant. “I was lucky,” he says. “My older sister Kathi was such a good donor match that the doctors said we were practically identical twins born seven years apart.”
The kidney from his sister that continues to sustain Joe, now 53, was transplanted on Thursday, August 28, 1980. “After the transplant,” he says, “I spent a week on my back in the ICU. And the rest is history.” And it is: 34 years, and counting.
An amazing success story
Thirty-four years is remarkable, especially when you consider that his transplant occurred relatively early on in the development of pediatric transplantation as a field.
When Joe had his surgery, the outlook for children with kidney transplants was worse than it was for adults. Many of the treatments and techniques involved—such as immunosuppression—were pioneered with adults, so pediatric transplant specialists had to tailor them to children over time. The relatively small number of pediatric (versus adult) kidney transplants performed each year made this process even more of a challenge, since the smaller pool of patients slowed data-gathering and research.
Thanks to advances in immunosuppression and surgical techniques, and to the advent of international collaborations and multicenter studies that have accelerated the pace of research, children who receive transplants now have the best long-term survival of all age groups, including adults. Even so, on average, a kidney from a living donor functions for around 20 years. Joe’s has lasted almost twice that long.
Committed to an active life
Less than a year after his transplant, Joe’s life returned to normal. He returned to Boston Children’s for checkups every week, then every month, then every six months. During one checkup, he told his doctors that he wanted to play hockey again. Understandably worried about falls on the ice and body checks, they tried to talk him out of it. “No,” he replied, “I’m playing hockey.”
Sensing his determination, the team of specialists at Boston Children’s located a different kind of specialist—this one worked for the Boston Bruins—and brought him in to make special pads for Joe. “He made this little strap that went around my back with a small leather thing in front, right over my kidney,” Joe recalls. “So I played hockey.” Not content with his feats on the ice, Joe also played men’s league baseball from his 30s through his early 50s.
Joe worked as hard as he played. He went to night school for electronics and got a job as a field service engineer, fixing computers. This was in 1982, when hard drives weighed 200 pounds and were mounted on racks. “We had company cars and drove all over New York and New England,” he says. “I built local area networks before anyone knew what they were.”
‘You have to think positive’
Joe remembers his care team at Boston Children’s with fondness. His primary doctor was William Harmon, MD, who recently stepped down as medical director of the kidney transplant program after nearly 34 years, but still remains a key member of the kidney transplant team. In August, a few days before his 34th transplant anniversary, Joe reached out to Dr. Harmon. “He responded within an hour,” says Joe, “and told me that three out of the four dialysis nurses that took care of me were still working at Boston Children’s.” Among them is Floreen Knight— “My angel,” Joe says.
Pediatric transplants have come a long way in the past 34 years, ensuring that in the future there will be many more patients like Joe playing baseball into their 50s. Researchers are studying new medications that could eliminate most of the complications of chronic immunosuppression. They’re investigating the possibility of treating adult kidney transplant recipients with special stem cells, a technique that may one day become feasible for children. And the team at Boston Children’s now knows more than ever how the success of a transplant is tied to a child’s overall well-being—physical, emotional, psychological. Joe’s successful return to hockey even led the Pediatric Transplant Center to find a company to produce kidney protectors for all patients.
No one has to tell Joe about the mental side of succeeding with a transplant. While he had his fair share of physical challenges—in addition to the nephritis that prompted his transplant, he was diagnosed with type 1 diabetes at age 11—he remains a firm believer in mind over matter.
“Anybody can do anything,” he says. “But you have to be committed. It can be difficult, but you have to think positive. Don’t let anyone ever tell you [that you] can’t do something.”