A Milestone for Double-Lung Transplant Patient

Colleen Adamson survives and thrives 20 years after lifesaving operation

Colleen Adamson’s transplant team was composed of the following: (top L to R) Meg Fregoso, NP, Jane Harrison, (bottom L to R) Nelson Burton, MD, and Steven Nathan, MD.

On the day Colleen Adamson was listed for a lung transplant by her Inova Fairfax Medical Campus doctors, they asked her if she was ready for the major operation. “Absolutely. I can’t breathe,” she told them. “I can’t wait.”

Little did anyone know on July 3, 1998, that Colleen, then 29, would receive her transplant only 12 hours later. In doing so, she became the first cystic fibrosis (CF) patient to undergo a double-lung transplant at Inova. But two decades later, her vigor and accomplishments have gratified both the Northern Virginia woman and the doctors who brought her back from her near-fatal illness.

“This was a lifesaving procedure for Colleen,” says Steven Nathan, MD, Director of the Advanced Lung Disease and Transplant Program at IFMC. With five-year survival rates after lung transplant currently hovering at approximately 65 percent, “I never would have dreamed she’d be here in 20 years,” Dr. Nathan adds. “When you have a talented team and a motivated patient, those are the two ingredients you need for success.”

Perfect Match

Colleen was a 29-year-old newlywed and in dire straits when Dr. Nathan and Inova took a “leap of faith” and offered her a double-lung transplant. Diagnosed as a toddler with CF — a genetic disease with a current median life expectancy of 38 — her condition had deteriorated so rapidly over the prior year that she needed a tracheostomy and ventilator to breathe. Another hospital in the region had deemed her too sick for a transplant, telling her she had less than six months to live. However, one of her caregivers suggested she look at Inova’s newly formed Lung Transplant Program.

At Inova, the stars aligned. While Colleen had been eighth on the transplant list, she was the only patient with type B blood, matching that of a donor who was also her age and size. And not only did Colleen survive the procedure, which essentially cured her CF lung disease, but she thrived. She went on to complete a successful 27-year career in federal government and even toughed through a kidney transplant in 2006 also performed at Inova, which was needed to combat kidney damage from the numerous medications to maintain her donor lungs.

“I think one of the most important things for patients’ short- and long-term survival is that patient’s attitude,” says Nelson Burton, MD, who was part of Colleen’s Inova transplant team and is now retired. “Colleen was clearly a determined young lady in spite of her situation.”

Colleen marked the 20th anniversary of her lung transplant in July with a reunion with Drs. Nathan and Burton and other Inova team members involved in her care. Traveling with her husband, Scott and hiking with their dog are among her passions, and she’s also considering writing a book about her experiences. Continuing her efforts to promote organ donation to community and school groups is also a high priority.

“I feel blessed and lucky every day,” Colleen says. “If I can get just one person to either say they’ll be an organ donor or change one person’s mind, it’s totally worth it.”

Inova Transplant Program Evolves, Expands

When Colleen Adamson received her lung transplant at Inova in 1998, the fledgling program had performed less than three dozen such procedures over its first several years. But now 20 to 30 lung transplants are the yearly tally, with the program — the only one in the Washington, DC, area — also encompassing leading-edge treatments for advanced lung diseases that may avoid the need for risky transplant surgery.

“To take on a patient who’s that sick and debilitated was a big step for us at the time, and she kind of set the path for the future of the program,” says Dr. Nathan.

Thankfully, newer targeted therapies for devastating lung conditions have relegated transplant surgery to second place, representing a significant advancement. “Through the development of novel therapies, we like to say that we’re in the business of putting ourselves out of [the lung transplant] business,” Dr. Nathan says.

Breathe Better

Learn more about the Advanced Lung Disease and Transplant Program and watch Colleen Adamson’s reunion with her care team.

1 Comment

  1. Lysa Dilley Wrote on February 2, 2019 at 5:50 pm

    This is an amazing story of strength, determination, and hope! My post transplant journey just started eight weeks ago and I am inspired to be a 20+ year survivor as well! I hope to meet you someday Colleen just to say face to face, “YOU are amazing and I love your spirit!”

Leave a Comment