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TRANSPLANT CANDIDATE WAITS FOR CALL TO LIFE Sean Williams looks like a typical college student but the cellular phone he carries is not for keeping him apprised of collegiate social events. It's to let him know when a pair of lungs becomes available. "I've got the lungs of a 70-year-old," he said ruefully. "I'm 21 and I can't even run around the block." Williams of the 300 block of Prospect Avenue, Duncannon, is a transplant candidate at Presbyterian University Hospital in Pittsburgh. "Usually a person on a waiting list has a beeper," Williams said. "But I'm pretty active for a transplant candidate and I was always going out of range of the beeper so I got a cellular phone." If Williams gets word that donor lungs are available, he will have to move fast. "You have four hours to get to Pittsburgh when they call," he said. "So driving on the turnpike is not an option. Just driving from Duncannon to the airport in rush-hour traffic takes a long time." Williams has arranged for transportation in advance through a private air charter service that will wait on his call. The 1991 graduate of Susquenita High School suffers from Cystic Fibrosis, an inherited genetic disease that has weakened his lungs to the point that they need to be replaced. Williams said that when he was told last summer by his doctor that he needed a transplant, his first thought was "I'm dying next week." But he has since learned that the time to consider a transplant is when a person is still in relatively good health and has a positive outlook on life. "It's not a last ditch effort," Williams said. Williams was a photography student at Rochester Institute of Technology for two years. But he found that the Upstate New York weather did not help his condition. Now he studies mass communications and broadcasting at Harrisburg Area Community College and expects to graduate in December. He plans to transfer to the broadcasting program at Bloomsburg University. Asked about the future, Williams smiled and said simply he wants to "Find a job anywhere." Growing more serious, he added: "I try not to plan that far ahead because you never know what will happen. For now, looking just a few months ahead is OK. I just try to concentrate on my classes and try to have some fun." But as a transplant candidate, he knows things are a bit more complicated. He thinks about how he will pay for the costly surgery and follow-up treatment. Williams said his father, Ronald, has insurance that will pay for the initial surgery. But he does not think it will cover the long hospital stay and it will not pay for expensive anti- rejection medication he must take. Williams plans to meet with a credit analyst at Presbyterian to discuss fund-raising possibilities. He probably will have money collection boxes at area stores and restaurants. He is sure that where money is collected he will make donor cards available. He wants people to sign and carry the cards, which indicate the organs they are willing to donate upon their death. Doctors diagnosed the disease when Williams was three years old. Cystic Fibrosis causes thick, sticky mucous to accumulate in the lungs. The mucous interferes with normal breathing and makes the lungs susceptible to infection. To keep his lung passages open Williams previously needed someone to thump him on the front, back and sides of the chest three to four times a day. Now he practices a self-induced draining technique where he concentrates on a specific breathing pattern. He also takes seven different drugs in multiple doses each day. Williams has no way of knowing when lungs will become available. The donor will have to be of the same blood type, approximate height and weight and have a similar sized chest cavity. "They tell you, 'live your life normally, and let the transplant interrupt your life,'" Williams said. "But with all the arrangements you have to make, it's never too far from what you're thinking. But you don't want to dwell on it. Who knows, there might not be a donor. Then you have what you have." |
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© 1992-2000 Sean E. Williams |
