Bonded Forever Through the Miracle of Transplant
|
Eighteen-year-old Tiffany Senter is discussing her good friend, Emma Greene, also 18, with whom she certainly has much in common. Both California natives are five feet tall; both graduated high school this summer with perfect GPAs; both have 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.
Emma and Tiffany suffer from Cystic Fibrosis (CF), a life-shortening congenital disease that renders the body unable to regulate salt transport in and out of cells. Over time, CF leads to destruction of the lungs. It also affects digestion, preventing the body from breaking down and absorbing food.
"Imagine trying to breathe through a straw," describes Carol Conrad, MD, director pediatric pulmonary medicine at Packard Children’s. “Mucus has clogged up the airways and the work required to get even a small breath is painfully high."
Emma and Tiffany were diagnosed in early childhood, and for a period of time, managed CF with medication and treatment, leading relatively normal lives. Tiffany made straight A's at 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 Taekwondo black belt.
But eventually, life for both teens, who were yet to find out about each other, revolved around heavily scheduled treatments. As the years went by, both 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 referral to her medical team at Packard, 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 of 2009, Emma was listed for a unique double-lung and liver transplant.
"It’s pretty rare to see a patient—especially in pediatrics—requiring both a new set of lungs and a new liver. There are maybe only 1 of these performed each year nationwide," remarked Conrad. Even though Packard Children’s has one of the largest programs for pediatric transplants in the U.S., this would be the first-ever double-organ transplant of this kind here.
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, Tiffany was being hospitalized frequently for lung infections.
"I couldn’t even go out with friends—I’d be too tired and couldn’t breathe," she remembers. She was listed for a double lung transplant at Packard in March of 2011.
Transplant prep is intense. "It’s like an athlete preparing for an event: maximizing nutrition and maintaining muscle tone and strength by keeping up their activity level," said Conrad. These are Herculean tasks for Cystic Fibrosis patients.
Conrad worked to keep Tiffany and Emma’s lung function stable with a rigorous schedule of lung clearance, management of medication, exercise and careful monitoring. Both girls hooked up to a feeding tube before bed for high-calorie overnight feeds.
Through it all, remarkably, both girls were able to graduate their respective classes with honors, with Emma even being awarded valedictorian.
It was shortly after this time, in June of 2011, that the two girls were introduced to one another by Conrad."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 had never met.
Finally, one evening in early October, Emma received the call she had been waiting nearly two years for: 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 by Hari Mallidi, MD, and Carlos Esquivel, MD, PhD, she recovered nearby the hospital, and returned to Lodi just in time for Christmas.
Tiffany’s new lungs came in November, just before Thanksgiving. Richard Ha, MD, completed the 6.5 hour surgery. Tiffany had confidence going into the OR. "It’s like working with God’s hands. I knew I was in the best place I could possibly be," she said of Packard. She is now recovering at the Ronald McDonald House at Stanford.
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 very clear airways. While not a lifelong fix, Emma and Tiffany 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 pediatric nurse. Emma has plans to attend UC Davis to become a zoologist. Both feel blessed, and are eternally grateful to their donors for giving them a second chance.
It’s a chance that promises an unbreakable and lifelong bond of support and friendship. Finally meeting in person for the first time after Tiffany’s November surgery, Emma brought her friend a homemade pie. "It’s like having a CF twin. We both have a lot of the same fears and questions, but it’s nice to have a friend who understands."