Cystic fibrosis patients Tiffany Senter and Emma Greene bond over their lung transplants and look forward to lifelong friendship
Last updated 1/30/2012 3:02:33 PM
Cystic fibrosis patients Tiffany Senter and Emma Greene bond over their lung transplants
"There's nothing like having a bond with someone else who knows exactly what you're going through," says eighteen-year-old Tiffany Senter. Her good friend is Emma Greene, also 18, with whom she has much in common.
Both Californians have cystic fibrosis, a life-shortening congenital disease that renders the body unable to regulate salt transport in and out of cells. And both have shared the experience of lung transplants that could potentially save their lives.
Both spent hours each day — for years on end — gulping down dozens of pills and relying on machines to help them breathe. And both received recent calls that gave them a new chance at life. Tiffany and Greene were diagnosed with the disease in early childhood and, for a period of time, managed CF with medication and treatment, leading relatively normal lives.
Tiffany made straight As in school in Shasta Lake and was an award-winning jump-roper. Just over 200 miles away in Lodi, Emma was also a star student, plus a soccer player and a black belt in tae kwon do. But eventually, life for both teens revolved around heavily scheduled treatments. As the years went by, they each found themselves sitting on the sidelines, literally trying to catch their breath.
By her freshman year, Emma's lungs were working so poorly that she was evaluated for a lung transplant. Later, she became too sick to go to school. After she was referred to the medical team at Lucile Packard Children's Hospital, it was discovered that CF's thick secretions were damaging her liver. Even after a lung transplant, her liver function could be problematic. So, in November 2009, she was listed for a unique double-lung and liver transplant. Meanwhile, in Shasta Lake, Tiffany's daily treatments,including hour-long sessions of therapy to clear her lungs, progressed to four times a day. By the time she was a sophomore, she was being hospitalised frequently for lung infections. "I couldn't even go out with friends — I'd be too tired and couldn't breathe," Tiffany recalled. She was listed for a double-lung transplant at Packard in March 2011.
Transplant prep is intense. "It's like an athlete preparing for an event: maximising nutrition, and maintaining muscle tone and strength by keeping up their activity level," explain Carole Conrad, MD, director of paediatric pulmonary medicine. Dr Conrad worked to keep the girls' lung function stable with a rigorous schedule of lung clearance, medication, exercise and careful monitoring. Both girls were hooked up to feeding tubes before bed for high-calorie, overnight feeds. Through it all, remarkably, both girls were able to graduate their respective classes with honours.
It was shortly after this time,in June 2011, that Dr Conrad gave the two girls a long-distance introduction to one another. "Lung transplantation is extremely rare," said Conrad."That's why I always try to connect patients pre-operatively to provide support for one another." The girls began emailing and texting their stories and words of support even though they hadn't met in person. Finally, one evening in early October, Emma received the call she had been anticipating for nearly two years: thanks to the gift of organ donation, Packard's first double-lung and liver transplant awaited her.After a grueling but successful 12-hour surgery, she spent several weeks recovering nearby the hospital, and returned home in time for Christmas. Tiffany's new lungs came in November, just before Thanksgiving in a six and a half hour surgery.
Post-surgery, both girls were afraid to remove their oxygen masks. But the teens are now breathing on their own, gaining weight and,so far, have clear airways. While the transplants may not be a lifelong fix, both can now look forward to a much better quality of life, plus the energy and strength to pursue their dreams. Inspired by the nurses who have taken care of her, Tiffany wants to become a paediatric nurse. Emma has plans to to become a zoologist.
Both feel blessed, and are grateful to their donors for giving them a second chance. It's a chance that promises a lifelong bond of support and friendship. They finally met in person after Tiffany's November surgery. Emma brought her friend a homemade pie. "It's like having a CF twin," she said. "We both have a lot of the same fears and questions, but it's nice to have a friend who understands."