Abstract
After years of suffering with debilitating lung disease, facing death, undergoing a strenuous evaluation, and surviving the ordeal of waiting, the moment when someone got word it was time for transplant was bound to be dramatic and memorable. “Let’s face it,” said Scott Collien, “It’s not every day someone rings up and says they’ve got a set of lungs for you.” Years later Lori Hughes still pictured the exact setting when she got the call. “My husband and I were sitting, and we had just finished dinner. Dinner of pork chops and hash browns. I’ll remember that forever.” As Karen Couture put it, “The call is always in capital letters: THE CALL.” It was met by an adrenalin rush. Frank Avila was in physical therapy when his coordinator walked in with a “look on her face that said it all.” His excitement was recorded by the pulse oximeter he was hooked up to, which showed an increase in his heart rate. When he called his family, they got excited, too, and Avila “heard screaming and crying from my mom and sisters.”4 While excitement was typical, as the quotes at the start of this chapter suggest, there could be a host of other feelings and they might vary dramatically during the few hours before the much-anticipated transplant.
They told my husband—they didn’t tell me—that they were only giving me a week, and if I didn’t have a lung by Friday, then they were going to take me off the list because I was too sick to have one. The next day I just laid around in bed all day; there was just nothing I could do. That night around nine o’clock the phone rang and they said they had a lung for me, get in right off. I was trying to get dressed to go and of course you’d get excited. I was really nervous and I couldn’t breathe and my husband is like, “Come on, come on, we’ve got to go.” It didn’t even dawn on me that I could have died through the surgery or anything like that. I was just excited.1
—Cheryl Maxham
On Monday, May 6, 1996, the phone rang and it was the transplant coordinator. I was dead silent as she spoke, “Nancy, this is Joan at Sharp and this is your call.” (I am tearing up just writing this to you I can hear her so vividly.) When I hung up the phone I experienced for the very first time, total panic and fear. It lasted less than a minute and then I became totally calm and absolutely ready. Then my husband Mark and I raced around the bedroom trying to figure out what to take. It looked like a Keystone Cops routine. I finally said, “Stop. All I need is a book to read, house shoes, and a robe.”2
—Nancy Hulet
I started to laugh. I could die on the operating table but that didn’t stop my laughter as I looked at myself, knowing it might be the last time I saw my physical form. I stopped laughing and stepped closer to the mirror. I examined my reflection. As I did, I whispered to God, “It’s just You and me now. Thank you for this chance. And please, please bless that child that died and his or her family. Comfort them. Give me the strength, courage, and guidance to do what’s ahead of me. And, if it’s possible, don’t take me yet.”3
—Laura Scott Ferris
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Notes
Nancy Hulet, “Gary Makes a Miracle,” in Joanne Schum (ed.), Taking Flight; Inspirational Stories of Lung Transplantation (Victoria, B.C.: Trafford Publishing, 2002), 148.
Laura J. Scott Ferris, For Love of Life (Flol Publisher, 2001), 205.
“Understanding Donation,” International Association for Organ Donation, http://www.iaod.org/understanding-organ-donation-braindeath.htm; “Brain Death,” University of Missouri Health Care Family Guide Neuromedicine, http://www.muhealth.org/~neuromedicine/braindeath.shtml; National Donor Family Council; “Questions Regarding Brain Death,” Association of Organ Procurement Organizations, http://www.aopo.org/aopo/html%20files/frequentlyAskedQuestions.html#Section%20C, accessed July 10, 2003; Ron Peterson and Kathryn Flynn, “Lung Transplant—The New Millennium,” Airways 7, no. 6 (November 1999): 11; Colleen Krantz, “Giving Life a Second Chance,” Milwaukee Journal Sentinel, July 12, 1998, 1.
Because the system preserves the anonymity of organ donors, the donor stories in this section come from people who have publicly acknowledged they made the decision to donate in newspaper and magazine stories and websites. Usually it was not possible to know if the donor’s lungs were actually given to a lung transplant recipient. Mary Steenland, “A Donor Mother’s Story,” Multiple Organ Retrieval and Exchange Program of Ontario, Donor Stories, http://web.idirect.com/~more/donors_stories_1f.html, accessed July 10, 2003; Tim Barela, “One For All: A Captain’s Tragic Death Saves Five,” Airman 43, no. 5 (May 1999): 40–43; Zvika Krieger, “Lyric Benson, PC ’02, Shot by Ex-Boyfriend,” Yale Herald, April 25, 2003.
Quoted in Krantz, “Giving Life a Second Chance,” 1. Anthropologist Lesley Sharp notes that the job of approaching families about donation was emotionally trying and has a high burnout rate. Lesley Sharp, Strange Harvest; Organ Transplants, Denatured Bodies, and the Transformed Self (Berkeley: University of California Press, 2006), 57.
V. Lee Langley and Margaret Shaw, “A Day in the Life: The Donor and Her Family,” Urologic Nursing 22, no. 1 (February 2002): 13–21; Avis Thomas-Lester, “A Helping Hand at the Hardest Moment,” Washington Post, November 10, 1996.
Memorial to Jay Bullock, Transweb, http://www.med.umich.edu/trans/develop/testing/people/donors/memorial/donors/bullock_jay.html; Justin Catanoso, “Grateful Patient Thanks Parents of Donor,” Greensboro News and Record, April 23, 1994, B1; Patricia Curtis, “Why I Had to Have This Baby,” Redbook 199, no. 4 (October 2002): 104–109. “It Hurt to Breathe Without Her,” said the Memory Quilt Story for Kayla Rack, New York Organ Donor Network, Donors and Their Families, http://www.nyodn.org/gift/memory_details2_14.html, accessed July 11, 2003.
Sharp, Strange Harvest, 181, 138–139; Darrach and Murphy, “After a Child Dies.” Life 18, no. 12 (October 1995): 42–47. According to one study, about one in five families had second thoughts about their decision to donate a loved one’s organs. Cited in “Too Late For Organ Donor Families Who Change Their Minds,” Science a Go Go, April 24, 1998, http://www.scienceagogo.com/news/19980324163707data_trunc_sys.shtml, accessed January 13, 2009.
Pappano, “The Gift”; Sheryl Stolberg, “Historic Lung Transplant Draws Mixed Reaction,” Los Angeles Times, February 11, 1993, A1; Dean Lamanna, “The Breath of Life,” Ladies’ Home Journal 110 (November 1993): 120–124.
Karen Couture, Information You Should Know About Lung Transplantation: Before, During and After (Second Wind Lung Transplant Association, 1997), 25; Interview with Randy and Tammy Ellis, conducted by Amanda Wentzler, Cary, NC, October 24, 1998; Interview with “Lynn” (who requested anonymity), conducted by Inga Bajalyte, Durham, NC, October 19, 2002; Maureen Janik, “My Life … Act II,” and Jennifer Russell, “My Lung Transplant Adventure,” in Schum, Take Flight, 153 and 259. Kathleen Feeney described GoLytely: “The stuff was so bad—I had to suck an ice cube to numb my taste buds, then guzzle it, then suck an ice cube.” Interview with Kathleen Feeney.
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© 2012 Mary Jo Festle
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Festle, M.J. (2012). Getting “The Call”. In: Second Wind. PALGRAVE Studies in Oral History. Palgrave Macmillan, New York. https://doi.org/10.1057/9781137011503_6
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