PEORIA — Carrie Stephen could barely breathe. Her lips and fingertips were tinged in blue. Soon, the large canisters of oxygen she carted around the workplace would not provide enough air to keep her alive, much less upright and ambulatory.
"She was suffocating," said Dr. Richard Pearl, the director of pediatric trauma at Children's Hospital of Illinois at OSF Saint Francis Medical Center, and the man largely responsible for bringing Stephen to Peoria to work as a physician's assistant. "We didn't know how much time she had left. Weeks? Months? It was clear she was running out of steam."
Stephen, who is only 29, had a double lung transplant in June. She's breathing easier now.
"I had struggled for so long, that now I wake up every day shocked that I can take a breath," Stephen said this week seated in a conference room in Children's Hospital, five months removed from her transplant. Dr. Pearl sat beside her. "It's all still amazing to me."
"You were born again," said Dr. Pearl, smiling.
Stephen is a native of Wisconsin and graduate of the University of Wisconsin in Madison with a medical master's degree. She was a resident for a year at Children's Hospital in Milwaukee, before taking her first official position as a physician's assistant in Peoria in 2010.
Her job places her at the bedside of a lot of seriously sick children every long work day. There are 30 patients in the pediatric surgery center, 20 of whom are in the intensive care unit at any given time. The staff consists of two nurse practitioners, two resident doctors, six surgeons and Stephen, the only physician's assistant. All are responsible for the total care and medical plan of all 30 patients, none any more intimately than Stephen.
"Carrie does a lot of good work here," said Dr. Pearl. "She is an extremely capable, compassionate, savvy caregiver."
Stephen developed an autoimmune disorder in her joints when she was in her teens, a disorder that felt painfully a lot like arthritis. Coupled with a respiratory illness in college, the disorder created a condition where her body started to destroy her lungs, as she described it.
"The autoimmune disorder is not curable, and barely treatable," Stephen said. "I finally got to the point where I realized that it either kills me, or I get new lungs."
For many months, as the empty oxygen canisters piled up in her office, Stephen resisted Dr. Pearl's increasingly persuasive argument that she needed to get her name on the list of possible recipients of donated lungs.
"She really was dying," said Dr. Pearl.
"Unbeknownst to me," said Stephen, with a short burst of a laugh.
Stephen was evaluated in late 2011 and determined to be a viable candidate for a double lung transplant. She "listed" on Feb. 29, 2012.
Page 2 of 3 - "The hardest part of all of this was the day I listed," Stephen said. "I don't really know what pushed me over the edge, I guess just the realization I was not indestructible. There was also the need of overcoming the fear of an unknown future."
Getting your name on the list does not mean a transplant is imminent; waits can be as long as deteriorating health can be fast. Because she's a woman of small stature, finding a healthy set of donor lungs was an even bigger challenge. The donor lungs would have to fit inside her chest, and because lungs are not as solid an organ as a liver or a kidney, they are more fragile and can't travel as far from donor to recipient. It would be a race against the clock.
While she waited, she worked.
"What was I supposed to do, go home to die, or go to work," she said. "I chose option B."
One patient kept Stephen exceptionally focused on her work. She was largely responsible for the comfort and care of 2-year-old Hannah Warren, the South Korean girl who was the recipient of the first bio-engineered trachea transplant on a child in the world. The operation, performed April 9 at Children's Hospital and led by a Swedish surgeon, made international medical news. Hannah died of complications from the surgery three months later, while Stephen was in the hospital recovering from her own transplant surgery.
"Taking care of Hannah helped me take my mind off of my own problems," Stephen said. "Not being there when she died was hard to take."
"It was a strange, strange time," said Dr. Pearl. "We were so sad about Hannah passing away, and so happy that Carrie had her lungs. Very confusing."
Stephen was in bed at home on June 20 when her cell phone rang.
"I was told that Dr. D (Nielto DeOliveira) has a perfect set of lungs for me," she said. "After that I just remember being incredibly calm about the whole situation."
Her boyfriend Chris drove her to University of Madison Hospital with Oliver, her Boston terrier, along for the ride. She called everyone she could think of on her cell phone on the way to alert them that her transplant surgery was imminent. Her trip was about 260 miles. Her new lungs, taken from a young woman who was also in her 20s, traveled about 300 miles. They converged in the hospital in Madison. She was wheeled into the operating room at 11:55 p.m., June 21.
"Things can still go wrong at that point. They tell you that it's possible to wake up from sedation and not be transplanted," Stephen said.
The surgery was a success. Stephen was up and walking 12 hours after surgery.
Page 3 of 3 - "I was determined to get out of bed," she said.
She spent 13 days in the hospital walking laps around the nursing station, another week at a nearby hotel, then a week at her parent's house recovering. In eight weeks she was back at work.
Now, she works out several days a week at the Riverplex and hopes to train to run a 5K race in Madison next year. Her boyfriend ran the same race, organized for organ donation awareness, in 2012, pushing her around the course as she sat in a three-wheeled jogger stroller, tethered at the nostrils to the oxygen tanks in the backpack slung across her back. Most of the pediatric surgical team in Peoria drove to Madison for the event to support Stephen.
The oxygen tanks caught the attention of a woman from northern Wisconsin who had come to run the race, eight months removed from her own double lung transplant. The woman's support team was made up of members of her donor's family and recipients of other life-saving organs from the same donor.
"It was an incredible experience," Stephen said of the woman who was an obvious symbol of hope on the other side of transplant surgery. "Everybody was crying."
The two now talk at least once a week by phone.
"It's a unique club we're in," Stephen said.
Stephen hopes to meet her own donor some day, and has begun the process where the hospital serves as a liaison between the two families. She wrote a letter to her donor's family, but has not yet heard back.
"I wrote them that their daughter is helping me save other children's lives through the work that we do at Children's Hospital," Stephen said. "So much good is being done because of what she has done. Every child we save will be done in her honor."
Stephen dabbed at tears at the memory. A short silence settled in at the table in the hospital conference room, before Dr. Pearl spoke.
"She might be small," he said. "But she's made of hard stuff."
Scott Hilyard can be reached at 686-3244 or by email at firstname.lastname@example.org. Follow @scotthilyard on Twitter.