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Empowering lung transplant patients through oral history

As a historian, Mary Jo Festle understands the power of oral history. As the sister of a lung transplant patient, she also understands the difficulties of this complicated procedure.

Armed with this knowledge, Festle worked with her students to conduct close to 60 interviews with lung transplant patients. Those stories served as the foundation for her latest book, Second Wind: Oral Histories of Lung Transplant Survivors, which was published in the spring.

“It’s a dramatic and difficult story; they’ve gone through an awful lot, and it’s nice for someone to care about their story,” Festle says. “I think we all deserve to have our story heard, validated, listened to and understood.”

When it comes to medical history books, Festle says historians tend to focus on either the patients' experiences or the medical aspect – the research, innovations and surgeons. She decided to combine both in her book.

“I wanted to connect the people who have had those transplants, not just telling the story of the first lung transplant but also, who was the patient? How did they decide when to do it?” she says. To tell that story, she looked at medical archives and journals, government and organizational documents, as well as news accounts. “I also very much wanted to get first-person accounts from people who waited for transplants or had transplants.”

Festle says there are some very specific aspects unique to organ transplantation. There is the wait to find a match, the uncertainty of whether the procedure will be successful and the complications associated with the recovery. Patients also have to process that their chance of survival depends on someone else’s tragedy, because almost all lung transplants use lungs from people who’ve died.

She says survivors seemed to be happy to share their stories as repayment for the gift of life they received from someone they didn’t know.

“So many people who have organ transplants never know the people whose organs saved their lives,” Festle says. “A perfect stranger did a generous act and changed their lives. It’s hard to repay that.”

Festle hopes the book helps practitioners, patients and families in the organ transplant community, as well as anyone who may be going through a difficult time in life.

“We are all going to get older, and we are all going to experience some medical issues in our lives. It’s very likely that we are going to have relatives who get sick or have disabilities,” she says. “Listening to how other people cope, whether that is through community, faith, denial, information gathering, or figuring out what you can control and what you can’t control, that’s useful.”

Professionally, Festle says the book allowed her to partner with her students in the research process. It also allowed students to apply what they had learned in the classroom.

“It gave them a personal connection to someone, it alerted them to a need that they knew nothing about,” Festle says, adding that a lot of her students became strong advocates for organ donation as a result of the experience.

Since joining Elon’s faculty in 1993, Festle has published a book on women in athletics and several articles. She studied social change as an interdisciplinary independent major at Knox College and earned master’s and doctoral degrees in history from the University of North Carolina at Chapel Hill. She received the 2011 Elon University Daniels-Danieley Award for Excellence in Teaching and the university’s first Senior Faculty Research Fellowship. Festle serves as the associate director of Elon’s Center for the Advancement of Teaching and Learning.

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