Mary Jo Festle and several top students conducted interviews with dozens of patients about their experience waiting for and receiving new lungs.
Emotions that range from anxiety to gratitude are common in the community of American lung transplant recipients, an Elon University researcher writes in a new book that explores the procedure and the patients who undergo it.
In Second Wind: Oral Histories of Lung Transplant Survivors, published this spring by Palgrave McMillan, Professor Mary Jo Festle delves into the psyches of men and women who waited for, received, and then dealt with the side effects of lung transplants for conditions that included cystic fibrosis, primary pulmonary hypertension, idiopathic pulmonary fibrosis and chronic obstructive pulmonary disease.
The book includes interviews with 58 lung transplant recipients, as well as Dr. James D. Hardy, the first surgeon to successfully conduct a lung transplant in a human patient. Hardy’s feat was accomplished at the University of Mississippi Medical Center on the very night that civil rights leader Medgar Evans was assassinated in 1963 and brought to the same emergency room.
Since then, many medical, political, and other innovations made lung transplants a relatively successful and widely offered procedure.
But more than writing historical accounts of the procedures, Festle seeks to understand the sentiments and anxieties of transplant recipients. She looks at the considerations people weigh before pursuing a transplant, as well as the excruciating wait that often follows as patients wonder whether they’ll survive until lungs can be obtained.
“For people who need transplants, the thing that is needed to save their life is not a drug but a human organ, which is a very scarce and valuable resource,” Festle said. “Lung transplants are different from kidney transplants because there’s nothing like dialysis to keep patients alive while they’re waiting for a transplant and because transplants using organs from living donors don’t work well. That means donor lungs must come from people who died.
“One of the other things that’s interesting to me is how people cope with transplants. Because someone else has to have a tragedy for a patient to get the second chance of a lung transplant, a lot of recipients feel guilty. And most feel incredibly grateful.”
The rise of the Internet has helped people waiting for transplants, along with those who have already received lungs. Online communities are especially beneficial to patients who live far from transplant centers and lack regular contact with others facing similar situations.
Then there are groups like Second Wind Lung Transplant Association, which inspired the name to the book. Tom Archer, president of the national association and a double lung transplant recipient, described Festle’s work as a “tremendous support” for lung recipients and their families.
Not only does it bear witness for those patients who can experience the loneliness of being on a transplant list, or those struggling with the side effects of receiving new lungs, but the book also serves as a testament to the critical need for organ donors.
“People don’t know that it’s important that they become donors, or just how important it is,” he said. “It’s a big task to get that information where people can and will read it. Anything we can do to grab that attention is good.”
Other transplant recipients provided Festle with similar reflections in testimonials for the book. “This history uniquely acknowledges the importance of a transplant community that has thrived since the rise of the Internet,” Kathryn Flynn, a double lung recipient, writes in a back cover endorsement. “Today’s transplant recipients pay it forward by sharing their experiences with people who are waiting for a life-saving organ. Festle pays it forward by telling our story.”
Festle’s interest in lung transplants stems from her own family. Younger brothers Bob and John both died at young ages because of cystic fibrosis; John without attempting a lung transplant, and Bob receiving new lungs but succumbing to complications nearly six years later.
A Phi Beta Kappa graduate of Knox College, where she studied social change as an interdisciplinary independent major, Festle earned master’s and doctoral degrees in history from the University of North Carolina at Chapel Hill. Her research interests include oral history methodology, medical history and the history of disability.
Festle received the 2004 Elon College Excellence in Teaching Award and the university’s first Senior Faculty Research Fellowship. Since joining Elon’s faculty in 1993, she has had a book on women in athletics and several articles published.
Festle today serves as the associate director of the Center for the Advancement of Teaching and Learning. In the past, she has directed the Honors Program, chaired the search committee for the dean of Elon College, the College of Arts and Sciences, and served as coordinator of the Women’s and Gender Studies Program.
To learn more about purchasing discounted copies, visit http://festlesecondwind.wordpress.com.