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Introduction Notes Introduction 1. Telephone interview with Danelle DiCiantis, conducted by Annie Evans, November 19, 2000; Laura Rothenberg, “My So-Called Lungs,” in Sayantani DasGupta and Marsha Hurst (eds.), Stories of Illness and Healing; Women Write Their Bodies (Kent, OH: Kent State University Press, 2007), 44. The number of lung trans- plants in 1990 cited in “Report of the ATS Workshop on Lung Transplantation,” American Review of Respiratory Disease 147 (1993): 772–776; 2010 waiting list data cited in “Waiting List Additions 2000-2010 U.S.,” OPTN/UNOS 2011 Data Spring Regional Meetings, http://www.unos.org/docs/DataSlides_Spring_2011.pdf, accessed June 8, 2011. 2. For a critique of the assumptions and practices of modern medicine, see John D. Engel et al., Narrative in Health Care; Healing Patients, Practitioners, Profession, and Community (Oxford and New York: Radcliffe Publishing, 2008), 25–31; and Arthur W. Frank, The Wounded Storyteller: Body, Illness, and Ethics (University of Chicago Press, 1995), 54–56, 81–85, and 172. 3. These cost estimates were for first-year billed charges for a transplant; costs for immunosuppression drugs and other treatment continued well beyond the first year. Millman Research Report, “2008 U.S. Organ and Tissue Transplant Cost Estimates and Discussion,” http://publications.milliman.com/research/health-rr/pdfs/2008 -us-organ-tisse-RR4-1-08.pdf, accessed June 8, 2011. 4. Rhonda Bodfield, “Appeal for Transplant Patient,” Arizona Daily Star , December 17, 2010; Jane E. Allen, “Arizona Budget Cuts Put Some Organ Transplants Out of Reach,” ABC News/Health, November 18, 2010, http://abcnews.go.com/Health/Health_Care /medicaid-cuts-make-organ-transplants-unaffordable/story?id=12177059, accessed June 8, 2011. 5. Frank, Wounded Storyteller , 53–54; Engel et al., Narrative in Health Care , 43. 6. Engel et al., Narrative in Health Care , 1, 6–7, 43, 219–229; Rita Charon, Narrative Medicine; Honoring the Stories of Illness (Oxford: Oxford University Press, 2006), vii, 192. Arthur Frank sees listening to stories of illness and responding to them with empathy as an important moral act. Listening communicates that a speaker has value. See Frank, Wounded Storyteller , 25, 53–54; and David B. Morris, Illness and Culture in the Postmodern Age (Berkeley: University of California Press, 1998), 257–263. 7. Engel et al., Narrative in Health Care , 1, 43, 220–229; Frank, Wounded Storyteller , xi–xii, 17–18, 24–25, 35–40, 54–59; DasGupta and Hurst, Stories of Illness and 214 / Notes Healing , 1, 28, 197, 210; Marsha Hunt and Sayantani DasGupta, “Narratives and Advocacy: A Gendered Construction,” in Stories of Illness and Healing , 271–277; Paul K. Longmore and Lauri Umansky, “Disability History: From the Margins to the Mainstream,” in Longmore and Umansky (eds.), The New Disability History; American Perspectives (New York: New York University Press, 2001), 6–7. 8. Some writers have contrasted “disease,” by which they mean disordered biological processes, from “illness,” which is more about a person’s experience of suffering. See Valerie Raoul et al., Unfitting Stories: Narrative Approaches to Disease, Disability, and Trauma (Waterloo, Ontario: Wilfrid Laurier University Press, 2007), 5; Engel et al., Narrative in Health Care , 29. Judy Segal notes that pain may be a medical mat- ter, but suffering is a personal and social one. Judy Z. Segal, “Interdisciplinary and Postdisciplinarity in Health Research in Canada,” in Unfitting Stories , 12. 9. Transcribing always requires editorial decisions about how to punctuate and deal with pauses, repeated phrases, and incomplete phrases/sentences. It is probably fair to characterize our practice as “light editing,” which can include deletion of false starts, constantly repeated phrases such as “you know,” or fillers such as “like” or “um.” 10. Arthur Frank has described the challenge in interpreting others’ stories as “to avoid reducing any one voice to its terms of connection with others. In the ideal commen- tary, individual stories are empowered by their association with other narratives, but they are not subsumed within that association.” The format of this book makes it difficult to show the full detail of each individual narrative; still, I hope to approach Frank’s ideal of enlarging, or giving each story greater scope by connecting it to other stories. Arthur Frank, “The Negative Privilege of Women’s Illness Narratives,” in DasGupta and Hurst, Stories of Illness and Healing , 67. 11. We would probably ask more questions about community, identity, feelings about donors, makeup of the waiting list, sexuality, gender, and finances. I would also be more careful to train students to be aware of the possibility of subtly pushing interviewees into the more socially acceptable “traditional narratives” of restitution, which celebrate a comfortable message of the “resiliency of the human spirit.” See Lawrence Langer, Holocaust Testimonies: The Ruins of Memory (New Haven: Yale University Press, 1991), 58–64; and Frank, Wounded Storyteller, 105–109. 12. Book-length autobiographies include Isabel Stenzel Byrnes and Anabel Stenzel, The Power of Two; A Twin Triumph over Cystic Fibrosis (Columbia and London: University of Missouri Press, 2007); Shirley E. Jewett, I Call My New Lung Tina; Inspiration from a Transplant Survivor , 2nd ed. (Victoria, British Columbia: Water Signs Publishing/Trafford Publishing, 2002); Laura J. Scott Ferris, For Love of Life (Flol Publisher, 2001); Randy Sims, Living a Miracle; Turning Your Obstacles into Opportunities (Livermore, CA: Wing Span Press, 2006); Laura Rothenberg, Breathing for a Living; A Memoir (New York: Hyperion, 2003); Charlie Tolchin, Blow the House Down: The Story of My Double Lung Transplant (Lincoln, NE: Writers Club Press, 2000); Tiffany Christensen, Sick Girl Speaks! Lessons and Ponderings Along the Road to Acceptance (New York: iUniverse, 2007). For a collection of many short personal accounts of transplant, see Joanne M. Schum, compiler, Taking Flight; Inspirational Stories of Lung Transplantation (Victoria, British Columbia: Trafford Publishing, 2002). 13. In A Shared Authority: Essays on the Craft and Meaning of Oral and Public History (Albany: State University of New York Press, 1990), Michael Frisch described how Notes / 215 the interviewer and interviewee/narrator are both shapers of an interview who share “author-ity” over it. This influential concept expanded into an ideal for the demo- cratic practice of oral history in which collaboration between the scholar/interviewer and narrators is extended beyond the interview to the ways the interviews are used. Cognizant of some extraordinary examples of oral historians who approach this ideal in their projects (such as Alicia Rouverol, Wendy Rickard, Daniel Kerr, and Lorraine Sitza who described them in a 2003 volume of The Oral History Review ), I must take responsibility for the fact that after the initial stages of interviewing, sharing transcripts with narrators, and depositing them in the archives, I undertook the process of analyzing the interviews and publishing my analysis of them without such collaboration and have, in a sense, “gotten the last word.” See all the essays, including those by Linda Shopes and Michael Frisch on “Sharing Authority,” The Oral History Review 30, no.1 (2003): 103–113. All narrators make decisions about what to reveal and not reveal, but writing a book using quotations involves a great deal of selection of the words of others. 14. Susan Lederer demonstrated that there is an early twentieth-century “prehistory” to organ transplantation, which people commonly think of as starting in the 1960s in the United States. It included the transfer of skin, testis, glands, bone, and blood and societal grappling with supply problems, the meaning of donation and commodifi- cation, and incorporation of a “foreign” body part into a new one. Susan E. Lederer, Flesh and Blood; Organ Transplantation and Blood Transfusion in Twentieth-Century America (Oxford: Oxford University Press, 2008). A fine treatment of early heart transplantation is seen in Donald McRae, Every Second Counts; The Race to Transplant the Human Heart (G. P. Putnam’s Sons, 2006). Steven J. Peitzman has written a his- tory of kidney disease that includes transplantation, Dropsy, Dialysis, Transplant: A Short History of Failing Kidneys (Baltimore: Johns Hopkins, 2007). The notes to chapter two include medical journal articles that summarize key moments in the history of lung transplantation, and important books by scholars from many fields other than history on the social, political, ethical aspects of organ transfer and dona- tion. Keith Wailoo, Julie Livingston, and Peter Guarnaccia, A Death Retold: Jesica Santillan, The Bungled Transplant, and Paradoxes of Medical Citizenship (Chapel Hill: University of North Carolina Press, 2006) is an interdisciplinary collection of essays on the implications of Santillan’s failed heart-lung transplant. 1 End-stage Lung Disease 1. Interview with Jan Travioli, conducted by Erin Witmer, Waxhaw, NC, November 2, 2000. 2. Case history included in Martin Bodian, Fibrocystic Disease of the Pancreas (New York: Grune and Stratton, 1953), 167. 3. Various researchers around the world were observing the symptoms of the disease, so it is difficult to know who to credit for its “discovery.” Charles May calls the phenomenon “a revealing example of the gradual accumulation of observations from a variety of independent sources which may be required to attain a clear conception of a disease.” Charles D. May, Cystic Fibrosis of the Pancreas in Infants and Children (Springfield, IL: Charles C. Thomas, 1954), 6–9; Ann Harris and 216 / Notes Maurice Super, Cystic Fibrosis: The Facts (Oxford: Oxford University Press, 1995), 9–10; Paul A. di Sant-Agnese, “The General Picture of the Disease,” in Rustin McIntosh (ed.), Research on Cystic Fibrosis (Minneapolis: University of Minnesota Press, 1960), 3–7. 4 . Guide to the Diagnosis and Management of Cystic Fibrosis (National Cystic Fibrosis Research Foundation, revised edition, 1971), vii; David M. Orenstein (ed.), Cystic Fibrosis; A Guide for Patient and Family , 2nd ed. (Philadelphia: Lippincott-Raven, 1997), xii, 78–79; Burton L.
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