Academic journal article The Oral History Review

Qualifying the Quantifying: Assessing the Quality of Life of Lung Transplant Recipients

Academic journal article The Oral History Review

Qualifying the Quantifying: Assessing the Quality of Life of Lung Transplant Recipients

Article excerpt

A gaunt woman, weakened by years of lung disease, gasping for every breath, living tethered to an oxygen tank, and barely able to leave her bed, grimly acknowledges the doctor's confirmation that the end is near. At the same time, though, she holds on to the outside chance that another set of lungs might replace her almost useless ones. "As sick as I was, one part of me knew I was dying but there was another part of me that knew I wasn't going to die," reported Cheryl Maxham. "It was like two different people, one saying, `Yeah, you're sick, you're going to die.' And the other side of me kept saying, `Something is going to come up, you're not going to die.'" (1) Sometimes the miracle of organ transplantation does occur, and someone like Maxham escapes from the brink of death. Most who undergo lung transplantation gain a few unexpected years of life. Seventy-seven percent transplanted in the mid-1990s survived at least a year, fifty-eight percent lived three years, forty-four percent lived for at least five years, and survival rates are improving. (2) Often the transplant brings an almost miraculous change in the quality of life. "Picture yourself seeing in black and white your entire life, then just waking up one day and being able to see in color," explained lung transplant recipient Danelle DiCiantis. "That's how dramatic the difference is." (3) While most transplant recipients regain the ability to breathe with ease and perform daily activities, this new life comes at a price. The surgery and rehabilitation can be grueling. Then recipients must adhere to an extensive regimen of harmful drugs to keep the new lungs from being rejected, watch out for life-threatening infections due to their suppressed immune system, and face the reality of a still-limited life expectancy. Oral history interviews provide a unique opportunity to get a glimpse into the life of someone who, thanks to medical advances and human generosity, has received a gift of unexpected, uncertain, and quite valued life.

Because lung transplantation is now considered appropriate treatment for end-stage lung disease in certain circumstances, thousands are waiting and hoping for a transplant to extend their lives, and a sizable number of people are breathing with a lung or two that originally belonged to someone else. (4) Sharing diseases and struggles, these people often support one another by telephone, in person, and on-line, and might be seen as a community of sufferers. (5) My students and I have interviewed thirty people who were waiting for or who had received lung transplants. Elon University undergraduates took an interdisciplinary course in which they spent six weeks studying biological, social, psychological, and ethical aspects of lung transplantation, and another five weeks being trained in oral history methodology. Each student then conducted an unstructured interview of one to two hours, usually at the home of a lung transplant candidate or recipient, but sometimes by telephone. Each student transcribed his or her own interview, and copies of the tapes and transcripts were sent to interviewees as well as deposited in the Elon Oral History Center archives. (6) The experience taught us meaningful lessons about what it is like to live with lung disease, how people cope with the stress of dying and hoping for a transplant, and how a lung transplant changes a person's life. We heard powerful stories, sometimes sad, frightening, funny, or courageous. The stories deserve to be heard and preserved for their own sake. Anyone can learn from them about organ transplantation and life. The interviews are especially valuable to people with lung disease and their loved ones, and to social and medical historians. They document the experiences of a unique group of people who both enjoy the benefits of and suffer through a period of medical innovation.

I unexpectedly discovered that my students and I were not the only ones talking with the lung transplant community; indeed, a body of literature exists which assesses the "quality of life" of lung transplant recipients. …

Search by... Author
Show... All Results Primary Sources Peer-reviewed

Oops!

An unknown error has occurred. Please click the button below to reload the page. If the problem persists, please try again in a little while.