Since receiving a new set of lungs last year, 13-year-old Addison "Addie" Rerecich has adjusted her view of the future.
It's all about living in the moment, always focusing on perspective because each day is a gift.
With 116,575 people nationwide waiting for lifesaving organ transplants, Addie was one of the fortunate ones - she received her donor lungs on Sept. 8, 2011, after being on the waiting list for just three weeks. She was 11 years old at the time and had no other hope for survival, which gave her an edge over older patients on the list.
She also received her transplant after spending a cumulative 93 days hooked up to an external lung - an extremely unusual scenario. It was so rare that her doctors from the University of Arizona Medical Center presented her case in Prague this year, at the annual meeting of the International Society for Heart & Lung Transplantation.
Addie's doctors have described her case as rare and remarkable.
Her family recognizes that Addie's gift of life was someone else's loss and regularly pray for the family of her organ donor.
"We try to never take that for granted," Addie's mom, Tonya Rerecich, said.
Still, life post-transplant has not been an easy road for Addie's family, which also includes dad Lawrence and three siblings.
About half the people who get double lung transplants are still alive after five years. After 10 years, the survival rate drops to 20 percent, said Dr. Yuval Raz, associate medical director of the lung transplant program at the UA Medical Center. Survival can exceed 20 years, but it's rare.
Experimental animal work is already being conducted in growing lungs with the patient's own cells. But the research is extremely early and is "decades away" from human use, Raz said.
"It's not all peachy," Addie said this week, as she sat at the kitchen counter of her family's northwest-side Tucson home, eating a Reese's peanut butter cup and watching her mother get ready for Thanksgiving.
She'd just come from the gym where she works daily with a personal trainer her family hired after she maxed out the physical therapy sessions allowed on their health insurance. She's rebuilding muscle on a body that was in bed for more than four months, suffered a stroke and even lost height - she now stands just under 5-foot-4-inches tall, which is nearly 2 inches shorter than she was before getting sick. While her weight dipped to 62 pounds, she's now up to 93.
When she talks about being a kindergarten teacher or a doctor, she is measured, and reminds herself aloud that they are old dreams.
Working with little children or sick people would be risky because she's so vulnerable to infections. That's why she can't baby-sit anymore. Baby-sitting was something she loved to do before her illness.
She still has dreams of marrying a pastor, playing piano in church and have four redheaded children.
"If I'd known what it would be like after the transplant, I would have been very, very afraid," Tonya said. "It felt like someone blew up a bomb in our lives last year. If you have an issue in your life, your family, it will expose it, sometimes for the worst. If we didn't laugh and joke, it would eat us up."
In addition to the 25 pills plus liquid nutritional supplments she takes daily, Addie blows into a machine that measures lung capacity and takes her vital signs. A drop of more than 10 percent in lung capacity might mean she's rejecting the lungs. She also has had to scale back her time at school. She has too many doctor's appointments. The seventh-grader lost a year of school, too.
Her doctors include a pulmonologist, dietitian, gastroenterologist, orthopedic surgeon, infectious-disease specialist, immunologist, plastic surgeon, dermatologist, psychiatrist and neurologist. Her anti-rejection medication makes her more susceptible to lymphoma and skin cancer. She's also at increased risk of diabetes, and the medications can cause liver and kidney damage, Raz said.
Tonya is a registered nurse, and her husband is an engineer. Both left their jobs temporarily while Addie was ill. When Addie came home from the hospital, the family was about $70,000 in debt due to medical expenses and lost income. They borrowed from friends and family, and ran up their credit cards. They've since managed to pay off about $20,000. They still owe $20,000 to friends and family and have $30,000 in credit card debt. Addie's medications cost about $400 per month after insurance. Nutritional supplements add another $250. Each doctor's office visit is a $30 co-payment.
Addie's sudden illness began in May 2011 with a bacterial infection that lodged in her hip and wasn't externally visible. It developed into several life-threatening, antibiotic-resistant infections, which then spread into her bloodstream. The infections caused sepsis, pneumonia and a pulmonary embolism. Her lungs were so chewed up that there was no hope they would ever work again.
Tonya has had to explain to Addie's two younger siblings why their older sister gets so much attention. She's had to explain to Addie, who remembers only bits and pieces of being in the hospital, about the odds of survival with a lung transplant. She also struggles with saying "no." Much to her horror, Addie likes playing with a small knife. She performs transplants on Gummi Bears, cutting a liver, lungs or heart out of one, and putting them into another.
"The things that wear me down day to day, if I put them in perspective, they build me up," Tonya said. "When I was in the hospital, down on my knees begging for her life, I would have given anything to be where we are now."
The family wasn't told anything about the lung donor, whose death enabled Addie's transplant. Addie and her mother both wrote letters of thanks to the family through the organ donation program, but they haven't heard anything back.
Tonya doesn't know for certain, but she's always had a gut feeling that Addie's donor was a child. That's why the observance of Addie's transplant anniversary this year was small and intimate.
"Just family, and the people who were there with us as we waited for the news that Addie had new lungs coming to her," Tonya said. "I try to remember that Addie could have very easily been the donor, rather than the recipient."
And that helps Addie and her family to put the uncertainty and fear about the future in perspective.
"I feel that the donor's family has given as much as they ever need to give, and more," Tonya said. "If they never contact us, if we never know any details, then so be it. We are the grateful ones. We are the recipients of a gift, and we should never ask for more."
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Be an organ donor
In Arizona, people can check the box to become registered organ and tissue donors when they apply for a state driver's license or state ID. They can also sign up online at DonateLifeAZ.org or call 1-800-94-DONOR.
Did you know?
The lung transplant program at the University of Arizona Medical Center is on hiatus while it recruits a new surgeon. Dr. Michael J. Moulton, the former surgical director of lung transplantation, left in February. Before his departure, the hospital was conducting about 26 lung transplants per year. Officials say they hope to restart the program soon.
"The things that wear me down day to day, if I put them in perspective, they build me up."
Contact reporter Stephanie Innes at email@example.com or 573-4134.