LIANE HANSEN, host:
Almost 15 years ago on this program, we introduced you to Paul Jewell. Jewell needed a heart transplant after being diagnosed with idiopathic cardiomyopathy, a condition also known as an enlarged heart. At that time, he was one of more than 30,000 Americans waiting for an organ transplant. That clicking sound you hear is a machine pumping Jewell's heart for him.
In 1993, we met him in his hospital room in Pittsburgh. Paul Jewell had been there and hooked up to the heart machine for over 100 days.
Mr. PAUL JEWELL (Heart Transplant Candidate): It's a tough thing. I want a heart and I realize that somewhere out in our world that somebody's got to have a tragedy for that to happen to me.
HANSEN: That's because even today all transplanted hearts, as well as most other organs, can only be recovered from a relatively small number of people who have died under circumstances in which their organs can be transplanted.
Since we met Paul Jewell back in 1993, the number of people waiting for transplants has more than tripled. So what if Paul Jewell needed a heart today? What, if anything, would be different?
To find out, NPR's David Nogueras traveled to Boston to speak with both doctors and patients. He brought back this report.
DAVID NOGUERAS: The numbers are staggering. Each year 6,000 people die in this country waiting for an organ that never arrives. Jonathan Murray(ph) of Foxboro, Massachusetts was one of those people. He had been waiting on the list for five years before he died of liver disease in 2005. His wife, Nancy, remembers that as her husband got sicker, he was rushed to the top of the list.
But when a liver finally became available, doctors couldn't perform the transplant because he had developed an infection and went into septic shock.
Ms. NANCY MURRAY(ph) (Widow of Transplant Candidate): We're always on an emotional rollercoaster as a family. I have three sons, and it was very, very hard for them to watch their dad just emaciate into a shell. I mean, he died at 140 pounds, and he was 6'2".
NOGUERAS: The executive director of the United Network for Organ Sharing is Walter Graham. That's a non-profit group that runs the nation's organ transplant system.
Mr. WALTER GRAHAM (Executive Director, United Network for Organ Sharing): The list continues to grow every year. It's 97,000 now who were waiting, I would predict by the end of next year, it'll be well over 100,000 who are waiting, because we put more people onto the wait list than we actually have organs being recovered and transplanted.
NOGUERAS: In the U.S., most of those organs come from places like Massachusetts General Hospital's Neuroscience Intensive Care Unit.
(Soundbite of beeping)
NOGUERAS: Today there are probably a dozen patients here. Some have had strokes or perhaps a brain hemorrhage. Others show the scars of a major head injury. Dr. David Greer is the director of inpatient stroke service here. He says despite the severity of some of these injuries, many patients can and will be treated.
Dr. DAVID GREER (Director, Inpatient Stroke Service, Massachusetts General Hospital): If somebody has pressure on the brain that we can release, if they have some bleeding on the brain, for example, that we could evacuate, that might be a recoverable illness. Some things are treatable.
NOGUERAS: But for patients who have no brain function, or very poor brain function, there may be no treatment. When patients are diagnosed as being brain-dead, they've suffered a catastrophic and irreversible loss of all brain function. They can't breathe on their own, and their heart can't bring oxygen to their organs without the help of drugs. Both legally and medically these patients are dead, but their organs are not. Dr. Greer says that these are the patients who are the only real candidates to become organ donors.
Dr. GREER: We try to have the doctors separate out so we're not seen as vultures that would swoop in and say, okay, I'm done treating your patient now, can we have your organs? I mean, that sounds extremely gruesome. Is that what we're doing? Well, in a sense, yes, but technically, no. We're really not.
NOGUERAS: Doctors like Greer leave decisions about who will get those organs to regional organ procurement organizations, like the New England Organ Bank.
KATIE(ph) (Employee, New England Organ Bank Operator): New England Organ Bank, this is a recorded line, this is Katie.
NOGUERAS: At a call center just outside Boston in nearby Newton, Massachusetts, a handful of employees take calls from hospitals referring potential organ donors, as required by law.
KATIE: And what's your age? Date of birth?
NOGUERAS: Today the Organ Bank is tracking five potential cases at hospitals around New England. The patients have not been declared brain-dead, but they're likely to be. The patients aren't registered as organ donors so if their conditions deteriorate, the decision of whether to donate is left up to their families.
David Greer, the neurologist back in Mass. General, says he sees families struggle with all the time. In a flash, a family's world can turn upside down. At that point, his job as a doctor goes beyond just healing the brain.
Dr. GREER: If you can do a good family conversation in a crucial time, that makes such a tremendous impact for them and their ability to understand and to heal and to move on.
NOGUERAS: Do they teach you that in medical school?
Dr. GREER: God, no, no. They do very little of that, and we're trying to work on our criteria for training our residents and medical students to do this.
NOGUERAS: One of the ways that hospitals try to do this is by sharing information. Down the hall tucked away in a corner of the ICU, about a dozen doctors, nurses and hospital staff are crammed into a small conference room. They're eating pizza and listening into a conference call with other hospitals. On the phone is Esther Charvez(ph), a family services coordinator at the New England Organ Bank.
Ms. ESTHER CHARVEZ (Family Services Coordinator, New England Organ Bank): We need to share the same information because we will ultimately, constantly, be sharing the same information with the families. And remember this is the last time the family member will be with their loved one.
NOGUERAS: In recent years, the medical community has found that how this option is presented to families can make a big difference in their ultimate decision. Hospitals have found that there are other things that they can do to increase the number of families that say yes. Like making sure the staffer approaching the family is of the same ethnic background.
As a result of a coordinated effort to make these changes, there's been a 25 percent increase in the number of families who have consented to donations over the last three years. Progress is being made, but for many patients it can't come fast enough.
(Soundbite of man speaking over PA system)
NOGUERAS: Back in Mass. General's transplant wing is Genie Stella(ph). She'll begin dialysis in a few weeks. She's just had surgery to put a plastic port into her chest. Back in 1991 Stella received a kidney transplant from her foster sister. But now that kidney is failing.
Ms. GENIE STELLA (Transplant Candidate): Well, they don't last forever, and after 16 years it began to fail. The waiting list, they told me, three to seven years, but thank God I have a dialysis. I have an option. Some people don't even have that option. It's unfortunate.
NOGUERAS: Stella's dialysis will be the key to bridging the gap until a kidney becomes available. Her sister, Cheryl Carr(ph), sits across from her bed distraught and helpless. She says if she could give her sister her other kidney she wouldn't think twice.
Ms. CHERYL CARR: I just don't understand why there aren't more people that donate. You can live perfectly healthy off of one kidney. I'm a perfect example of it. I got pregnant with my daughter just two months after. And why wouldn't you do something to save someone's life? That's what bothers me.
NOGUERAS: For people like Cheryl's sister, Genie Stella, an organ can come at any time and usually when they least expect it.
That's what happened for Paul Jewell. He's the man Liane Hansen spoke with 15 years ago. Jewell got his heart on October 6th, 1993, just a few months after he was on this program. Jewell says he wheeled his machine into the hospital cafeteria for dinner. He sat down at the table and had just started to eat.
Mr. JEWELL: A nurse came up behind me and said, do not take another bite. They said we think we've found a heart. It was about 5:30 in the evening, and by 9:00 that night they were wheeling me down into the OR for surgery.
NOGUERAS: Jewell's heart came from a 24-year-old man, a college student. He says it's difficult to express exactly what the gift meant to him.
Mr. JEWELL: When you have an opportunity to know that you now have had a chance in your life to see events that you otherwise would not have had a chance to live through — to have seen my children both get married, to see four grandchildren come into the world — I can't ever come up with the proper wording to express thanks and appreciation.
NOGUERAS: He tried though, years ago. Jewell wrote a letter to the family of the young man whose heart now lives on inside of him. Jewell also speaks to audiences in his hometown of Pittsburgh about the importance of one family's gift.
David Nogueras, NPR News.
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