Holding their breaths: the longest wait
Burkhardt Lecturer delves into history, culture of lung transplantation
Even with the amazing advances of modern medicine, doctors cannot always provide an instant cure.
That is the dilemma facing those awaiting organ transplants. Although they have life-threatening illnesses, potential donation recipients are forced to wait until an organ becomes available in order to undergo surgery. That wait was the subject that intrigued Mary Jo Festle ’83, who gave this year’s Burkhardt Lecture.
Festle, whose brother required a lung transplant, was particularly intrigued by this specific organ and the standards used to determine who—from the long list of those waiting—would actually receive one.
“There haven’t ever been enough,” she said. “Those donor allocations literally determined who wouldn’t die.”
Although the first lung transplant was performed in 1963, the patient died 18 days later and the surgery remained experimental until 1995. Prior to that date, it was surgeons who got to decide who would receive transplants. They searched not for the patients in most immediate need of lungs but those who would be most likely to survive such a grueling operation.
The first shift that removed the decision from the surgeon’s hands came when the United Network for Organ Sharing (UNOS) was founded. Their standards dictated that organs be given not to those most likely to survive, but to those who had been waiting longest and who lived in the same region as the donor.
This system came with its flaws. Patients with fast-acting fatal lung diseases often died quickly and rarely made it to the top of the list. In rural regions, some people would have to wait three times as long as those in larger regions.
In the late 1990s, doctors and patients went to the government. Standards for organ allocation became those of today: organs went to the “sickest who can still benefit [from a transplant],” Festle said.
During her study, Festle conducted interviews with people who had received transplants. They described relocating to be near a transplant center and numerous false alarms. Sometimes a patient would have received anesthesia only for the surgeons to discover damage to the donated lungs.
Despite such stresses, Festle also found an incredible sense of community among those waiting for lungs.
“A lot of what they get is support,” Festle said. Especially with the advent of the internet, recipients and those still waiting are able to exchange large amounts of information.
Festle was surprised by the rapport of the lung transplant community.
“They could just as well see each other as competitors,” she said. Instead, many of them shared optimism for the future.
“I believe we can learn from transplant recipients about second chances, identity and quality of life,” Festle said.
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