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Waiting for the Gift: Story 1

Living on the List

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Story by Joel Swerdlow

On Monday morning, Rick Williams gets up at about 6:30, and eats his usual breakfast of Cheerios with soy milk; sometimes he also has a bran muffin or a bagel with cream cheese. In the next room of the Coronary Observation Unit at the UCLA Medical Center in Los Angeles, Abraham Madrigal awakens at 7:00 and has French toast, fluffy eggs, and a banana for breakfast.

At his home, about an hour's drive to the south, Gary Bush of Tustin, in Orange County, has a banana with a scoop of ice cream and some protein formula mixed with milk; and in the town of Stevenson Ranch, about an hour to the northwest of Los Angeles, Linda Alcorace is eating oatmeal and three egg whites, with a cup of black coffee.

That a new day is actually beginning holds special significance for Rick, Abraham, Gary, and Linda, who are random members of a group that is unlike any other in history: the 84,149 people in the U.S. – as of today – waiting for organs. Every community in America includes such people, whose lives are on hold as they wait to see if the generosity of strangers will save them.

After breakfast, Gary finishes planting a new rose bush in his backyard. But he's never far from a telephone. Three times in the past twenty days, a call has come from one of UCLA's transplant coordinators, saying, "We think we have a kidney, but a few people are ahead of you." Once, he drove all the way to UCLA, where he was prepped for surgery before being told that someone who was a better match received the organ.

In one way, Gary is lucky. He has kidney failure, and kidneys are the only organs whose long-term, life-saving work can be done by a machine. But, for Rick, Abraham, and Linda, getting an organ – and soon – is literally a matter of life-and-death. Rick and Abraham are waiting for new hearts, and every day, about two people on the U.S. heart list die waiting. Linda is waiting for a liver; every day, four people on the liver waiting list die.

Gary's telephone rings frequently with calls from one of his three children or nine grandchildren looking for a news update. Such links to family are crucial. Linda now lives with her mother, and is very close to her sister, who lives nearby. Rick's sister, Joy, has been coming to visit him almost every day. Abraham has a 12-year-old son who spends every weekend visiting his hospital room, and a wife, Priscilla, with whom he always seems to laugh during their long conversations. Linda is 44 years old, Rick is 50, and Abraham is 54. Far too young to die.

Unless a donated heart becomes available, this corridor, with its shiny wood floor and grayish walls, could be the last place on Earth
they will ever visit.


As the morning progresses, Rick and Abraham walk down the hospital corridor. Each has a heart whose left side has stopped pumping, and whose work is done by a new technology, the left ventricular assist device (LVAD), known as the "bridge to transplant." Rick has a small device sewn inside his upper abdomen, and Abraham has an external pumping device hanging below his belly button, and each is attached to his own dishwasher-size machine via two thick cables.

Step-by-step, shuffling, sometimes stopping to catch his breath, and walking about 20 feet before breathing becomes too difficult, Rick gets his daily exercise. Abraham walks at a normal pace much further down the corridor, but like Rick, is accompanied by a nurse and portable equipment that keeps his LVAD going.

Both men know the truth: Unless a donated heart becomes available, this corridor, with its shiny wood floor and grayish walls, could be the last place on Earth they will ever visit.

After a morning of such activity, Rick and Abraham spend the afternoon giving in to exhaustion. Both watch television, and Abraham reads a few pages of the Bible, because, he says, "I'm scared."

Of the four, Linda has the most freedom. Gary undergoes peritoneal dialysis – one of the two forms of dialysis available – which means that for hours each day he must put a special fluid into his abdomen and drain it out, and that at bedtime he must hook himself to a machine that continuously pumps fluids out of him as he sleeps. In contrast, Linda's liver disease at this point leaves her free to drive her car and to walk at a normal pace.

In early 2000, Linda began to have problems with her blood—she later learned that she has a rare blood-clotting disease, Budd-Chiari Syndrome-and during the entire summer of 2002 she was hospitalized at UCLA with clogged arteries and veins leading in and out of her liver. She cried when told that her name had to go on the liver transplant waiting list.

Doctors managed to insert two shunts that got blood flowing through her liver, and Linda has been out of the hospital ever since. But scans reveal that cirrhosis is slowly and steadily destroying her liver. Among the results: fatigue that has left Linda too weak to work. Long gone is her former life, in which inline skating by the beach or an 80-mile bike ride was routine. Now, her major activity each day is grocery shopping or dinner with friends.

Linda knows that at any given moment her liver may fail. The result would be toxic build-up, coma, and death—or a liver transplant. Neither Linda nor her doctors has any way of knowing when this might happen.

Each wishes and prays not to sleep through the night. Each wants a telephone call, a hand on the shoulder, a voice saying, “It’s time. Let’s go.
You have a donor.”


As evening comes, UCLA, which has approximately 140 physicians, nurses, social workers, and other health-care professionals working full time on transplantation, completes its eleventh transplant of the week. Such a total, which is typical here, makes UCLA the largest multi-organ transplant center in the world. All of these organs have gone – in accordance with national allocation rules established under supervision of the federal government – to other patients who were better matches or were higher on the waiting lists.

Linda ends her day watching a rented a movie, "Something's Gotta Give," that her sister recommended. She usually chooses something that is more serious and artistic, but her sister has insisted that this one will give her some good laughs.

Rick and Abraham eat their dinners – Rick only pokes at his – and then each lies in bed, haphazardly watching television.

By not much after ten in the evening, all driven by feelings of fatigue that run unnaturally deep, Rick, Abraham, Gary, and Linda are asleep. Each wishes, and in his or her own way prays, not to sleep through the night. Each wants a telephone call, a hand on the shoulder, a voice saying, "It's time. Let's go. You have a donor."

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