Abstract
After being accepted into a lung transplant program for end-stage alpha-1antitrypsin deficiency, May Parker struggled with shortness of breath, a near-death experience, and her lung capacity dropping to 11 percent. Her family was distressed, too—her husband afraid of losing his wife and her daughter shaken by seeing her father cry. They all felt anxious about the fact that life could change in an instant if she got called for a transplant. “Every time the phone rang, I jumped six feet,” remembered May. More quickly than they expected, May got an exciting 3:00 a.m. phone call from a transplant coordinator telling her they had donor lungs available for her and she should get to the hospital (five hours away) as fast as possible. Before she arrived, however, she learned the transplant would not take place, which was very disappointing. After this “false alarm,” May was told to move closer to the hospital so she could get there sooner when called and so she could attend a three-week pre-transplant exercise and preparation program. May’s husband couldn’t go with her because he needed to work to provide her with health insurance, and May’s mother was too ill, so her daughter Charla volunteered to drop out of college and accompany her. Since the family was very close, the separation was hard. And even though mother and daughter were like “best friends,” this arrangement was not always easy. “We’re living in this small apartment, and we’re going to get on each other’s nerves quite a bit,” admitted Charla.
I was scared, in all honesty. The unknown was scary and the waiting was not fun.1
—Howell Graham
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Notes
Interview with Ruth Hall, conducted by John Stephen Bolger, King, NC, November 7, 2002. Psychological studies found that lung transplant candidates reported recurring themes, including uncertainty, fear of the future, and a feeling of having one’s life on hold during the waiting period. Kath Macdonald, “Living in Limbo—Patients with Cystic Fibrosis Waiting for Transplant,” British Journal of Nursing 15, no. 10 (2006): 566–572. While there are only a handful of scholarly articles that analyze the wait for lung transplant candidates in the United States, international studies and those on patients waiting for other organs reinforce that of a Dutch study, which found that, apart from the physical limitations, the waiting period is a stressful and psychologically difficult period. Three of the more important stressors were the fear that the transplant would come too late, tension from carrying the beeper, and the worry that the transplant center would forget about them.
Karin Vermeulen et al., “Stress, Psychological Distress, and Coping in Patients on the Waiting List for Lung Transplantation: An Exploratory Study,” Transplant International 18 (2005): 954–959.
Quoted in Richard Merritt, “Depression Predicts Quality of Life for Patients Awaiting Lung Transplants”, AirWays 10, no. 5 (September 2002): 6–8.
Merritt, “Depression Predicts Quality of Life”; Christopher R. Gilbert and Cecilia M. Smith, “Advanced Parenchymal Lung Disease: Quality of Life and Palliative Care,” Mount Sinai Journal of Medicine 76, no. 1 (February 2009): 63–70; Interview with Pauline DeLuca, conducted by Stacy Morin, Raleigh, NC, November 1, 2000; Interview with Jimmy Carroll;
Eileen J. Burker, “Quality of Life in Patients Awaiting Lung Transplant: Cystic Fibrosis Versus Other End-Stage Lung Diseases,” Pediatric Pulmonology 30 (2000): 453–460. In this study of 100 patients, 19 percent scored more than one standard deviation above the mean on the state anxiety measure. The majority did not have abnormally high levels of anxiety.
Randy Sims, Living a Miracle: Turning Your Obstacles Into Opportunities (Livermore, CA: WingSpan Press, 2006), 52–53; Telephone interview with Mary Peters, conducted by Claire Baker, Ferndale, Maryland, November 26, 2002; Joe G. Driskill, “My Transplant Story,” in Schum, Taking Flight, 79.
Rothenberg, Breathing for a Living, 8–9; Interview with Dana Schmidt, conducted by Kelly Foster, Durham, NC, November 19, 2002; Ferris, For Love of Life, 200–203; Shirley Jewett, I Call My New Lung Tina (Victoria, British Columbia: Trafford Publishing, 2002), 126–127.
Sims, Living a Miracle, 64; Laura Scott Ferris, For Love of Life (Flol Publishing, 2001), 181–199.
Kathy Vanderford, “Miracles Still Happen,” AirWays 9, no. 4 (July 2001): 8–18.
Cheryl Keeler, “Peer Support Program,” AirWays 15, no. 1 (March 2008): 2–3; Interviews with M. L. Bryan and Dana Schmidt.
Some patients in this study did not read all the information provided them, sometimes because they did not want to hear about things that could go wrong. Sharon Moloney et al., “Deciding about Lung Transplantation: Informational Needs of Patients and Support Persons,” Progress in Transplantation 17, no. 3 (September 2007): 183–192. Interview with Joanne Schum. Pauline DeLuca said that she stopped reading some of the personal accounts on Second Wind “because I don’t want to be negative … I wanted to keep that fighter mindset and not be worried about what could go wrong. I just didn’t want to know what could go wrong.” Interview with Pauline DeLuca.
Interviews with Bob Festle and Brett Pearce. Isabel Stenzel Byrnes described a younger friend who felt a similar repugnance toward her illness being too much of her identity and disliked CF support groups. “CF, C F, CF … that’s all everybody talks about. I mean, don’t these people have a life?” Byrnes observed, “She had a point. CF camp had transformed us, restricting our identities, defining us as people with a disease. There was something liberating about not exploring that part of our lives so deeply.” Byrnes and Anabel Stenzel, The Power of Two; A Twin Triumph over Cystic Fibrosis (Columbia and London: University of Missouri Press, 2007), 148.
Interview with Barbara Stepp; Don Hawkins, “Experiencing the Decision,” AirWays 7, no. 6 (November 1999): 1–3; Interview with J. Wayne Foster, conducted by Karen Mullis, Burlington, NC, November 11, 1998. See also Interview with Carol White.
Interviews with Harold Blaise and Dana Schmidt. One author asserted that a number of studies related to different medical procedures concluded that the Internet is not a dependable source of information for patients. Patients, however, report that medical information in Internet sites is useful and accurate, which she interpreted as suggesting that patients overrate the quality of the information provided. Maureen P. Flattery, “Living with pulmonary artery hypertension: Patients’ experiences,” Heart and Lung 34, no. 2 (March/April 2005): 99–107.
Katey Ballard, “My Transplant Journey and My Walk With God,” AirWays 13, no. 4 (July 2006): 10–12; Jewett, I Call My New Lung Tina, 98, 127; Byrnes and Stenzel, Power of Two, 231. Joanne Schum and Barbara Borowski also mentioned people bargaining.
Schum, “To My Surprise—I Have Been Part of Transplantation Numerous Times!” Airways 10, no. 1 (January 2002): 5–11;
Borowski, “My Three Caregivers,” Airways 10, no. 3 (May 2002): 7–10; Interview with Laura Richards.
Cuenin decided the “quality of days alive are more important than quantity; that disease and death are not enemies, but something one can learn to ‘heal into,’ instead of ‘heal from.’” Cathy Cuenin, “Moment to Moment,” AirWays 13, no. 3 (May 2006): 7, 12; Christensen, Sick Girl Speaks!, 126.
Eileen J. Burker et al., “Religious and Non-Religious Coping in Lung Transplant Candidates: Does Adding God to the Picture Tell Us More?” Journal of Behavioral Medicine 28, no. 6 (December 2005): 513–526.
Interview with Paula Huffman, conducted by Anna Story, Norfolk, Virginia, October 31, 1998. For description of passive deferral, self-directed, and collaborative religious coping styles, see Eileen J. Burker, “Religious Coping, Psychological Distress and Disability Among Patients with End-stage Pulmonary Disease,” Journal of Clinical Psychology in Medical Settings 11, no. 3 (September 2004): 179–193.
Jemison, “How One Man Fought and Won”; Sims, Living a Miracle, 27; Interview with Karen Fitchett; Judy Ryan, “Each Day is a Gift,” in Schum, Taking Flight, 265; Borowski, “My Three Caregivers”; Christensen, Sick Girl Speaks !, 45. Although lung transplant candidates tended to associate hope only with the possibility of receiving a transplant, it is possible for terminally ill patients to feel hope while accepting the fact that they are going to die. Kaye Herth, “Fostering Hope in Terminally-Ill People,” Journal of Advanced Nursing 15, no. 11 (1990): 1250–1259.
This study also found that older patients (who often had COPD) rated highly in the area of accepting their disease. Burker, “Quality of Life in Patients Awaiting Lung Transplant.” Another study found subtle differences between COPD and CF transplant candidates. Jessica L. Taylor et al., “Coping and quality of life in patients awaiting lung transplantation,” Journal of Psychosomatic Research 65 (2008): 71–79.
Kathy Vanderford, “Miracles Still Happen,” AirWays 9, no. 4 (July 2001): 8, 13–18.
Patients listed for transplant tended to get more aggressive treatment, which included being intubated, an unpleasant option that many nontransplant patients chose to avoid. The author concluded, “Patients with CF have known, often for a large portion of their lives, that they have a life span-limiting disease, but there are many potential barriers to communication about end of life issues. For example, the hope offered by improved therapies and lengthening life span in patients with CF may affect the ability and desire of both patients and physicians to have such discussions. Aggressive management strategies such as lung transplant may seem inconsistent with discussion of end of life care.” Elisabeth P. Dellon, “Effects of Lung Transplantation on Inpatient End of Life Care in Cystic Fibrosis,” Journal of Cystic Fibrosis 6 (November 2007): 396–402. Another CF study suggested some disagreement or tension between CF pulmonary physicians and transplant physicians, and concluded “the overall quality of the dying experience has not been determined and remains an important unanswered question.”
Dee Ford and Patrick A. Flume, “Impact of lung transplantation on site of death in cystic fibrosis,” Journal of Cystic Fibrosis 6 (November 2007): 391–395. In one non-CF situation, Kitty Adair, who was caring for her very ill cousin Debbie, was concerned that transplant candidate Debbie refused to think about making a will or arranging medical power of attorney. Telephone interview with Kitty Adair, conducted by Allison Riley, November 20, 1998.
Christensen, Sick Girl Speaks!, 169–170; Burroughs, “Living While You Wait … Living after the Transplant”; Michael Pollack quoted in Letter to editor by Lynn Pollack, AirWays 9, no. 4 (July 2001): 4–6. During her waiting period, Shirley Jewett first took some actions in the event she was going to die and then prepared for a transplant. Jewett, I Call My New Lung Tina, 103.
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© 2012 Mary Jo Festle
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Festle, M.J. (2012). Waiting and Coping. In: Second Wind. PALGRAVE Studies in Oral History. Palgrave Macmillan, New York. https://doi.org/10.1057/9781137011503_5
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