An NU Connection Leads to the Gift of Life
January 13, 2015 by Lisa McMahon, M.A.'09
Henry Santulli, ’63, spent the latter part of his life teaching others about polycystic kidney disease, a condition he was diagnosed with in 1984 at the age of 42. He served as president of the National Kidney Foundation in Syracuse, N.Y., and of the New York State Kidney Foundation, sharing his experience as a dialysis patient and a two-time transplant recipient with others battling the disease. For Henry and his family, knowledge was power.
“We never dwelled on the illness, we always focused on what tomorrow would bring, because there was always a solution,” says his wife, Pat (Casale) Santulli, ’63.
Henry also strived to show others, especially his family, that the condition wouldn’t prevent him from living a “normal” life –– he continued his career as principal of East Syracuse-Minoa High School, coaching sports teams, and playing golf, until his death in 2011.
So when his daughter, Tracy, was diagnosed with the hereditary condition at the age of 14, she knew that it was something with which she could live. With her father as her role model, she adopted a healthier lifestyle, and as the years passed, she went on to college, got married, and had a child. She even started a PKD Foundation chapter in Syracuse.
When Tracy was 40, she turned her attention to preparing for the eventuality of a kidney transplant. Her brother, Mark, who did not have the condition, began the evaluation process to determine if he would be a suitable donor. He was.
Over the next several years, Tracy’s kidney function declined. In July of 2014, when it had dropped to about 16 percent, Tracy’s doctors scheduled her for transplant surgery. That’s when the family received the devastating news that Mark’s final test showed a kidney abnormality that would prevent him from becoming Tracy’s donor.
“For a year and a half, he was an approved donor,” Tracy says, “and it was very defeating to find out, right when I needed it, that he wasn’t going to be able to donate. And I thought to myself, what am I going to do now? I don’t have a big extended family.”
Although Tracy was already on the organ transplant waiting list for a cadaveric organ, she knew that the average wait time for a recipient with her blood type, B positive, was between four and six years. She also knew that the transplant success rate from a living donor was significantly higher than from a deceased donor. So she decided to share her story on Facebook. Within a day, nine of her Facebook friends had offered to become donors. Seven of those friends were suitable matches.
Ultimately, it was a Niagara alum who gave Tracy the gift of life.
Jenni Greiner, ’04, had been babysitting Tracy’s daughter, Sam, for nearly 10 years. The two families were extremely close: Pat had taught Jenni’s father and several of her aunts in high school, Henry was her father’s guidance counselor, and Jenni’s brother-in-law worked for Tracy’s husband.
Despite this relationship, it was still a surprise when Jenni stopped by the house one day and handed Tracy the paperwork she had completed to be evaluated for organ donation.
“I knew she was young, extremely healthy, and athletic,” Tracy says. “I felt good about it from the beginning that she just might be the person to end up doing it.”
Testing confirmed that Jenni’s kidney would be a medically suitable match for Tracy.
“I wasn’t surprised,” Jenni says. “I believe everything happens for a reason, and I believe this is probably why we met and came into each other’s lives. So I wasn’t surprised. I was excited because it was something I definitely wanted to do.”
Jenni and Tracy underwent their surgeries at New York-Presbyterian/Columbia University Medical Center in November. Three weeks later, Jenni was back at work, and Tracy had been given a projected 20 years success with her kidney. Both women acknowledge that their shared experience had brought them, and their families, even closer.
“I think that donors and recipients have a relationship and a bond that no other two people will ever have,” Tracy says. “Jenni interrupted her life and took a risk and made all the difference for me.”
“It’s a phenomenal thing that you can do,” Jenni adds. “I can live the rest of my life knowing that I did something important.”
For more information on organ donation, visit donatelife.net.