Bloomington, Indiana — May 4, 2015 — May is National Cystic Fibrosis (CF) Awareness Month. More than 30,000 adults and kids in the United States have CF. In North Carolina, a teenage girl is winning the battle against CF thanks to her life-saving double lung transplant, which happened two years ago this month.
More than 10 million Americans are symptomless carriers of CF, and 1,000 new cases are diagnosed each year. For the Gradin/Goldwasser family of Durham, North Carolina, these statistics have been their reality since Corey was born in 1996, and then diagnosed with CF when she was two years old.
Corey’s father, Harlan, has been creating a narrative that describes Corey’s transplant journey, and what follows are excerpts from the story of Corey’s Second Wind.
It was the summer of 2009 when Cystic Fibrosis and MAC bacteria began the cycle of severe illness that made it clear there was only one path to potential survival for Corey, a bi-lateral lung transplant. A year later, when Corey turned 14, she became the youngest patient to enter the adult transplant program at Duke University Medical Center. Corey was to serve as a bridge patient in the adult transplant program who would link it with pediatric pulmonary. Corey went through rigorous pulmonary rehab for a significant period, all the while continuing to deteriorate.
The core of her day, every day of the week, revolved around doing nine hours of therapy to keep her breathing: the first couple of hours of the morning Corey did respiratory therapy; then to the next level of Pulmonary Rehabilitation boot camp for two-to-three hours every day; then Corey returned home for another round of respiratory therapy, which she repeated later in the evening. Obviously, her health care for her physical illnesses and disability dramatically interfered with her ability to do anything else.
When she was almost at her worst we knew it was time to identify another transplant program, and arrangements were made with St. Louis Children’s Hospital in Missouri. Corey’s transplant specialists made it possible for insurance to cover the operation because without insurance, we would not have been accepted at St. Louis. I think this is when the reality of the situation made the importance of the Children’s Organ Transplant Association (COTA) undeniable to us; it was absolutely critical and would make ‘living’ for all of us possible during the rest of Corey’s journey.
So in March 2013, on a cold, windy Sunday morning, Corey, her mother Elise, and a dear friend, boarded the small jet of Children’s Flight for Hope that would take them to St. Louis for Corey to be evaluated as a candidate for transplant. I was unable to go due to recuperating from major retinal surgery, but I joined them in early May.
How we felt: scared, dread, fear, hope, last hope.
It was cold and snowing heavily when Corey, Elise and Margaret landed in St. Louis. Take the fear, anxiety, and hope and multiply it — they were in a new city they knew nothing about, needed to be at the hospital at 7:30 in the morning in bad weather, and were to begin an exhaustive week of interviews and medical tests to determine if Corey was going to be accepted into the pediatric transplant program.
The whole world was at stake, so it felt like to all of us.
After a week of intensive evaluation, Corey became too sick to travel and had to be hospitalized. This began our stay of six months in St. Louis. For the first couple of months, Corey had not yet been accepted into the transplant program. It was a complex, frustrating, and anguishing time. Our daughter was dying.
The St. Louis Children’s Hospital medical team worked with us to find a pathway that would lead to transplant, all of us learning to meet each other. A transplant is like a marriage: everyone must be completely committed to each other and to the process. Corey was listed her in mid-May. It was Corey’s fierce, unbending spirit, and sheer will to live that kept her breathing, in spite of having no lungs left.
On May 29th and May 30th of 2013, our beloved daughter Corey had surgery for a double lung transplant. It could not have come too soon. The attending pulmonologist who examined her lungs under the microscope said she must have had gills because there was nothing that could have gone through the lungs. Indeed, as we know now, she was running out of time.
Several days after her surgery, we watched her walk with her new lungs for the first time. It was awesome, thrilling and very powerful to witness.
Due to a terrible summer cold, I was unable to be with Corey for several weeks. However, I was able to return to her recovery room on Father’s Day. A father saw the daughter he knew from a few years ago when he got to the hospital; and she was able to take a good 20 minute walk with him, talking about the future, how she might raise kids, and what she wanted in a car. Pretty stunning, all things considered.
At the end of June, Corey was doing well enough to be discharged.
While we were doing well, we had some bumps. Her biopsy reported no indication of organ rejection. Sometime in late July 2013, Corey had her pH probe to learn if she had acid reflux, which is dangerous to new lungs. It involved a tube through the nose and down the throat. She hates this procedure more than any other. Her comment to the GI was, “Why not do something more pleasant, like just shoot me?” The GI replied she wanted to keep Corey around. But, Corey said, “I didn’t say shoot me in the head or the heart.” Some classic Corey.
Her progress was amazing. We were able to leave St. Louis Children’s Hospital on September 1st and return home to North Carolina. Corey is very good — feeling well, ecstatic that she is not allergic to dogs. On her 17th birthday in November of 2013 we were stunned because we did not think she would have another birthday, but she did … and she is a rock star. She is flourishing. After her ‘transversary’ she still has no rejection, no infection. Unfathomable.
The COTA for Corey G team of volunteers worked tirelessly to raise funds for transplant-related expenses that will be with Corey for her lifetime. Over their months of planning and holding fundraising events, numerous articles and blogs were written about this amazing COTA teen. Corey has been described as being sharp and funny … having a blunt way of putting things … living life to the fullest.
Now, post-transplant and back in North Carolina, Corey is working hard to make up for lost time. Corey will always have to take medications to maintain her new lungs, and to make sure her body does not reject them. Corey swims, does yoga and exercises as part of her physical therapy. Early on in her battle against CF, she lost her hearing due to the medications she was taking. Yet, she is a powerful communicator through her writing. When comparing life pre-transplant and post-transplant, Corey writes, “To explain the drastic change in my health, I need to give some context: I was dying. My lungs were deteriorating rapidly and I couldn’t breathe on my own or move much at all. Getting up in the morning took significant effort. To go out and do something minor, like walking around a grocery store, was exhausting.”
According to Corey, “The difference now is huge.”
Today, Corey is reveling in her favorite things, “spending time with dogs, cooking, shopping, spending time with loved ones and engaging in meaningful and stimulating conversation.” Corey’s hope for the future, short term, “is to live and thrive independently, renting my own home an acquiring a service dog for a while before college. I want nothing more than to be self sufficient.” Long term, Corey wants, “to learn about a career as a college professor teaching history to students in courses people choose to take, and finding a life partner who is amazing beyond all reason.” Also on her list of ambitions is to write Young Adult fiction (among other genres) featuring a wide representation in characters.
For more information about the Children’s Organ Transplant Association, or to find a COTA family in your area, please email gro.a1524157976toc@m1524157976ik1524157976.