Fifty years after the first organ transplant, the procedure has become routine and most often successful. But it only can happen through the generosity of others.
By Micah Morrison
Published: December 19, 2004 Parade Magazine cover story
It’s September in Boston, and my friend Peter Issenberg’s kidneys are failing. I’ve flown in for his meeting with doctors at Brigham and Women’s Hospital. Lead physician Dr. Julian Seifter gently delivers a dramatic message: Peter, 47, needs to “reach a decision” within a month. His growing fatigue, nausea and forgetfulness are signs that toxins in his blood are rising to dangerous levels.
If the choice were his alone, Peter would make the decision in an instant. He would choose transplantation—a new kidney. The alternative is a debilitating regimen of dialysis. But, like 87,000 other Americans, my friend Peter cannot find a suitable organ donor. Twelve friends and acquaintances have volunteered to donate a kidney. Ten (including me) have been eliminated due to mismatched blood chemistry or underlying conditions. When Dr. Seifter talks about making a decision, the options are clear: a donor, dialysis or death.
Until recently, Peter’s active life revolved around his wife and two teenage daughters, extended family and friends, and hockey. He lives in southern New Hampshire and owns an adult hockey league. His wife, Simmie, 47, is a travel agent. I’ve known them 30 years. Now the family is in turmoil. Simmie worries all the time. The kids send me heartbreaking e-mails: Cary, 17, is having trouble at school and misses her “energetic father who normally had his feet in his skates or his head in the refrigerator.” Emma, 19, writes that “nothing brings more pain than to see your father in constant pain. Every day I wake up wondering when my father’s day is going to come.”
Fifty years ago, failure of the kidneys, heart, lungs or liver was a death sentence. For Peter and the hundreds of thousands of Americans who will face organ failure in the years ahead, the good news is that they may be given a second chance at life. With advances in surgical techniques and the development of drugs to suppress immune-system rejection of donated organs, transplantation is now a safe procedure—though doctors caution that all major surgery carries some risk. According to the United Network for Organ Sharing, more than 400,000 transplants have been performed in the U.S. since the first successful one in 1954. Seventy transplant operations take place every day.
The bad news? Donated organs are in desperately short supply. If a living donor is not available, or if donation is possible only from a deceased donor, transplant candidates can spend years on waiting lists. Every day, 17 Americans die waiting for a donor organ.
Obesity-related conditions such as high blood pressure and diabetes are major causes of rising rates of organ failure. But transplantation science also has become a captive of its own success: As organs became replaceable, more diseases became treatable, increasing the need for donor organs. My friend, Peter, for example, suffers from polycystic kidney disease, a life-threatening genetic disorder affecting more than 600,000 Americans. Transplantation is his only hope for a normal life.
“The single biggest challenge,” says Dr. Edgar Milford, head of Brigham’s tissue typing laboratory, “is the availability of organs for the large number of transplant candidates.” The majority of living-donor donations are for kidney transplants—more than 6400 in 2003. In some cases, living donors provide portions of their liver, lungs or pancreas. Deceased donors can make a lifesaving gift not only of vital organs but also of much-needed body parts, such as portions of the eye, skin, bones, heart valves and tendons. “Donors,” says Brigham transplant surgeon Dr. John Powelson, “are modern-day heroes.” While Peter waited for his own hero, I spoke with many who share Dr. Powelson’s belief, owing their lives to donors they never met.
One of them is Anabel Stenzel of Redwood City, Calif. Anabel and her twin sister, Isabel, were born with cystic fibrosis, a rare lung disease that was slowly killing them. Four years ago, Anabel, then 28, received a lung donation from an anonymous young man who had died just before his 30th birthday. The gift transformed her. “It’s like night and day,” she says. “I had been sick all my life, and now I’m fine.” She is immeasurably grateful. “I think about my donor every day. I breathe for him, because his life was cut short.” In February, Isabel received a lung transplant. She too is doing well.
Olympic snowboarder Chris Klug, 32, also believes in heroes. Diagnosed with a rare liver disease, Chris received a liver from a boy killed in a gunshot accident in July 2000. Eighteen months later, he won a bronze medal at the Salt Lake City Olympics. His life-affirming book, To the Edge and Back: From Organ Transplant Survivor to Olympic Snowboarder, will be published next month. “It’s important to understand that transplants work,” Chris tells me. “This is not experimental medicine.”
Dr. Milford reviews cases like those of Peter Issenberg, Anabel Stenzel and Chris Klug every day. He says he is “cautiously optimistic” about the future. Both living- and deceased-donor donations play critical roles, Dr. Milford notes. For anyone thinking of donating organs after death, the most important step is to discuss it with family and loved ones and friends, making your wishes clear. (For more on how to become an organ donor, see box below.)
A few weeks later, I fly back to Boston to visit with Peter and Simmie. Peter has taken a turn for the worse. “I have zero energy,” he tells me. “I’m always tired. It’s like having the flu all the time. But what I really feel bad about is the stress it puts on Simmie and the kids."
We sit in a hotel room and talk, old friends. Soon it will be Christmas. Simmie has a lot on her mind. She worries not only about Peter but also about her daughters. Peter’s kidney disease is genetic. Will they inherit it? What will the future bring? Will there be a kidney for them if they need it?
“The kids and I talk about it a lot,” Simmie says. “The kids are monitored, and we’re prepared to face the future. But Peter is really the only thing on our minds. The hardest thing is living with the unknown: The transplant—is he going to get it?” Peter is the strong, silent type. “It breaks your heart,” Simmie says, “seeing him keeping it all inside.”We receive more bad news: One of the two remaining potential donors has dropped out. We’re down to one. We’ll know soon if that person is a match. If no living donor is available, Peter goes on a waiting list. In New England, the average wait for a kidney is more than four years.
“I’ll do what I have to do,” Peter says. Gone—only temporarily, I hope—is the wisecracking, restless New Englander I’ve known for three decades. In his place is a weary, weary man. I think of his mother, who endured years of dialysis. For Peter, I know, near-daily dialysis would be like a jail sentence—tied for hours to a machine that cleansed his blood but drained his strength. “A transplant,” he says quietly. “That would be a new beginning.”
Outside, heavy gray clouds hang low over the city. With all the difficulties, Peter and Simmie are grateful—grateful for the compassionate staff at the hospital, grateful for the Joseph Murrays working to save the world one patient at a time, and grateful most of all to the potential donors, the people who stepped forward to help. “What an immense gesture,” Simmie says. “It reaffirms my faith in human nature.”
Peter shakes his head in wonder. “How do you say thank you for something like that?”
50 Years of Transplants
It was at Boston’s Brigham and Women’s Hospital (then called Peter Bent Brigham) that the first organ transplant was performed on Dec. 23, 1954. Dr. Joseph Murray successfully transplanted a kidney donated by Ronald Herrick to his twin brother, Richard. Decades of innovative work in surgery and with immune-system drugs followed. In 1990, Dr. Murray was awarded the Nobel Prize in Medicine. “In the old days, organ transplants seemed a will-of-the-wisp idea to many,” says Dr. Murray, now 85. “But we wanted to help people. The biggest thing we had was an environment of innovation. It is so important to have unfettered opportunities for research.”
Looking ahead, Dr. Murray and his colleagues at Brigham note some promising research areas:
•Immune tolerance studies. New strategies to make the immune system more tolerant also could have sweeping implications for many immune-system diseases.
•Xenotransplantation. Genetically modified pigs might provide needed organs.
•Tissue engineering. Scientists are exploring the possibility of growing an organ from a single cell or cloning one for transplantation.Dr. Murray notes that public support—and politics—will have a major impact on future developments.
How To Be An Organ Donor
Organ donation saves lives. But it’s not a step to be taken lightly. Here’s how to begin:
A small army stands ready to assist you with information about becoming a living or deceased donor. There’s never pressure to donate. Contact the Coalition on Donation at www.donatelife.net or 1-800-355-7427. Or try the Give Life Foundation at www.give-life.org on the Web.
Have the Conversation
Checking the donor box on the back of your driver’s license usually isn’t enough. If you want to be a deceased donor, it’s important to make your wishes known to family and loved ones.
Don't Worry About the Money
Organ donation is free. In living donations, the recipient’s medical insurance pays. In deceased donations, the donor’s family is never charged.
Don't Rule Yourself Out
People of all ages and medical histories are potential donors. Go to the U.S. Health and Human Services site at www.organdonor .gov for the facts.
What Is the Religious Position?
Most major faiths approve of organ donation and consider it an act of charity.
Micah Morrison is an award-winning investigative journalist.