Colleen’s story: cystic fibrosis patient celebrates 28 years since double lung transplant at Inova
Since her diagnosis at less than 2 years old, Colleen Adamson has learned to live with cystic fibrosis (CF), a genetic disorder that causes thick, sticky mucus to build up, which affects the lungs, digestive tract, sinuses and other organs in the body. Throughout her childhood, adolescence and young adulthood, Colleen dealt with the medications, the strategies to loosen and expel thick, sticky mucus from the lungs, the nebulizers, the visits to the doctor’s offices and the emergency room. Yet despite her careful management, at age 29, she went into respiratory failure and ultimately received a double-lung transplant at Inova – the 10th transplant in the program’s history – 28 years ago.
In July of this year, Colleen celebrated the anniversary of her transplant – a remarkable feat, considering that the average life expectancy of a lung transplant recipient is about 6.5 years.
The road to transplant
Colleen survived to adulthood and got married in 1997. But during a routine hospital visit later that year, Colleen felt her lung collapse. “I remember being wheeled into an elevator, and that’s the last thing I remember for about a month,” Colleen recalled.
Colleen had gone into respiratory failure. She and her husband, Scott, had been married only six months when he had to make the difficult decision to put Colleen on a ventilator or let her go. Knowing Colleen was a fighter, Scott chose the ventilator. It saved her life.
In February 1998, her care team at Johns Hopkins estimated that Colleen had about six months to live. She needed a double lung transplant, but in their view, she was too sick to be listed. One of her doctors suggested that Colleen contact Inova, which had a lung transplant program that was just ramping up. They might be able to help her. It was a recommendation that changed everything for Colleen.
Colleen met with Steven Nathan, MD, FCCP, Schar Chair, Advanced Lung Disease and Lung Transplant and Medical Director of Inova’s program, and started the lung transplant evaluation process. “When I first met Colleen, we had really just started the program at Inova. She was the 10th transplant we did,” Dr. Nathan said. “Hers is a remarkable story of survival. When I came to see her, she was in a long-term care facility and had been on a ventilator for five months. I said, ‘we’ll take a chance on you, if you take a chance on us.’ And she agreed.”
She and Scott marked their one-year wedding anniversary in June 1998 and met with the transplant surgeon – the last step in the process of getting listed – on July 2. Colleen’s six-month prognosis was rapidly dwindling. But on July 3, she got a call from the transplant coordinator. A set of type B lungs was available, and she was the only person on the list who needed type B. The time had come. It was Colleen’s independence day.
Colleen’s recovery journey
Colleen spent three weeks in the hospital recovering and engaging in intensive pulmonary rehabilitation at Inova Fairfax Hospital. She continued to receive hospital-based pulmonary rehabilitation once she was discharged home.
Because she was so sick, and was listed and transplanted the same day, Colleen never knew the average lifespan of a patient after lung transplantation. Perhaps that played a role in her ability to exceed it by so much.
Sheer determination played a role as well. “I have always expected everything to work out well, and that optimism is ingrained in me. That quality, combined with a stubbornness I inherited from my mother and the strength I developed growing up with CF, has helped me survive,” Colleen said. “My friend Tommy, who also has CF, tells a joke, ‘What do cockroaches, Keith Richards and Colleen have in common? They’d all survive a nuclear blast without a scratch!’”
A comprehensive advanced lung disease and transplant center
When Colleen received her lung transplant, Dr. Nathan was the sole lung transplant specialist at Inova. Today, Inova’s advanced lung disease and transplant program has completed nearly 800 more transplants.
“The program has evolved from a lung transplant program to a comprehensive advanced lung disease and transplant program with more than 70 full-time employees dedicated to clinical care, research and education,” Dr. Nathan said.
Inova’s program has earned accreditation from multiple organizations and patient advocacy groups including the Pulmonary Hypertension Association, the Pulmonary Fibrosis Foundation and the Cystic Fibrosis Foundation.
“We’ve grown clinically. We’ve grown academically. Our research has grown, and our education endeavors have grown. We now have our own advanced lung disease fellowship,” Dr. Nathan noted. “The program just continues to evolve through the years from the time that Colleen received a transplant.”
“I think it’s great how big the program has gotten. I see the number of transplants they do every year increasing, and that makes me feel good. It means a lot of people are getting the same chance I got,” Colleen said.
28 years since transplant – and still going strong
In the years since her transplant, Colleen, now in her 50s, has battled fungus in her lungs, recurrent skin cancer, lung cancer, a kidney transplant, and a fractured pelvis, among other ups and downs. And of course, Colleen still has CF – everywhere except her lungs.
“I was the first person with CF to be transplanted at Inova. They took a chance on me in multiple ways, because I was very sick and had CF,” Colleen said. “I loved Dr. Nathan. He is the best. He’s smart, calm and reassuring. He always tells me, ‘If I’m not worried, you shouldn’t be worried.’ That helps me feel better every time.”
In the 28 years since her transplant, Colleen has had a successful career working for the federal government, and she found time to take up golf, which she had always wanted to try.
She also dedicates much of her free time to The United States Adult Cystic Fibrosis Association (USACFA), a nonprofit organization dedicated to providing support, education, and encouragement to adults with CF. Every member of the board is a person living with CF, and Colleen serves as the organization’s treasurer. She also writes a regular column – Transplant Talk – in USACFA’s biannual magazine.
“I’m proud that Inova’s Advanced Lung Disease and Transplant Program has played a role in Colleen’s remarkable journey,” Dr. Nathan said. “Her tremendously positive attitude has enabled her to take things in stride, and hers is an inspiring story.”
Learn more about the Inova Advanced Lung Disease and Transplant Program.