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'Something You Should Do'
NIAID Explores the Many Faces of Transplantation

The statistics are compelling. More than 80,000 men, women and children are waiting for life-saving organ transplants, and thousands more are in need of bone marrow transplants. Every 13 minutes another name is added to transplant waiting lists, and every day 17 people die nationwide waiting for donor organs. To bring these statistics to life and to promote awareness of organ and tissue donation, NIAID convened a Transplantation Fair in which donors and recipients shared their experiences.

NIAID's Division of Allergy, Immunology and Transplantation (DAIT) coordinated the fair as a part of HHS Secretary Tommy Thompson's Workplace Partnership for Life Initiative. The Secretary has developed several initiatives to increase organ and tissue donation awareness, with the goal of increasing donation rates from the current 46 percent of eligible donors to a target of 75 percent.

"NIAID's research in transplantation is directed at understanding the mechanisms by which the immune system recognizes and either rejects or accepts transplants," says Dr. Shiv Prasad, chief of DAIT's Transplantation Immunobiology Branch. The goal of NIAID-sponsored clinical trials is to evaluate new and promising therapies to improve the health of transplant recipients and their organs.

Jennifer Pasternak donated a kidney to her father, Stephen.

Most of the speakers at the fair — themselves donors or recipients — also happen to work at NIAID. They shared their stories of courage and joy, fear and promise, heartbreak and hope.

Mary Kelleher, DAIT program specialist, says her story was "a textbook example of when everything goes right. I was shopping for new jeans at the Gap 6 days after my kidney and pancreas transplant — it's pretty amazing!" After living with diabetes since she was a child, Kelleher experienced a series of complications that affected her eyes, as well as nerves in her stomach, fingers, legs and feet — and ultimately destroyed her kidneys. As she put it, "I thought I had diabetes all figured out." But at age 34, she found herself hooked up to a dialysis machine 4 hours a day, 3 days a week, just to stay alive.

On Super Bowl Sunday 1999, Kelleher received "the call" and describes the whirlwind of excitement as all the hopes and prayers were finally being answered. "Halfway to the University of Pittsburgh [where the transplant procedure was done], I burst into tears," she recalls. "It hit me that somewhere not too far away was a family mourning the untimely death of their 16-year-old son.

"I think about my donor family all the time," she admits. "The grace and courage it must take to participate in this act of love is an incredible thing. I don't know the exact circumstances of the boy's death, but can imagine the family turmoil. I have written to the family, but how do you say thank you for this gift?"

James Selby, Jr., currently a program specialist for NIAID's Office of Clinical Research, is proud to tell the audience about his personal and professional triumphs. He has come a long way. Since transplantation, he has earned both bachelor's and master's degrees, written a book of poetry and won a gold medal in table tennis at the U.S. Transplant Games.

As a child, Selby was sickly. His mother nursed him through many illnesses. At age 4, he had a kidney removed as a result of a Wilm's tumor. His many respiratory problems, which were thought to be asthma attacks, were actually symptoms of a failing heart. By age 21, he had developed congestive heart failure, which caused a dangerous increase in the size of his heart. He was also diagnosed with chronic renal failure. He would need two organ transplants to survive. Today, thanks to a successful heart and kidney transplant Selby is the picture of fitness — a tall, healthy young man.

A father-daughter transplant team told their story with humor, love and tears. Jennifer Pasternak, a grants technical assistant, is the kidney donor for her dad, Stephen. After more than 5 years of watching her father's health fail and his medical options dim, Pasternak had a conversation with her father. "Dad, you and I are going through this together," she said.

"Not a good idea," he tells the audience, as his eyes start to well up. "My own flesh and blood stepped up to the plate to be my angel and saw me through this. When I think of the alternatives, that's when my daughter really shines."

With a smile, he jokes, "My only regret is that when my daughter gets up to go to the bathroom, I get up, too!"

On a serious note, Jennifer says, "It does not take a remarkable person to be a donor. This was my one chance in life to do something for my dad. Without him, I wouldn't even be here. My parents have done so much for me throughout my entire life."

Calvin Jackson II, audiovisual production specialist in the NIH Office of Communications and Public Liaison, is a bone marrow donor. "No one seems to understand why I would be a donor voluntarily," he says. "My friends have mixed reactions. My wife is concerned about having to take care of me. My daughter can't understand why I would be a donor for a total stranger."

Jackson recognizes the difficulty that minorities, particularly African Americans, have finding a bone marrow match because of low donor rates in that community. According to the Washington Regional Transplant Consortium, non-Caucasians make up more than 70 percent of the local transplant waiting list, emphasizing the message that organ, bone marrow and tissue donation is important to everyone.

Although his recipient did not survive, Jackson did his duty. "I did all I could do for the recipient," says Jackson, who continues to serve on the National Marrow Donor Program board of directors. "The doctors did all they could possibly do to save a life. It was out of my hands."

Julie Trapp, a mother of four, tells her story whenever people will listen. Her young, athletic son, Jason, was riding his bike to swim practice five blocks from home. She got a call from a neighbor. A car had hit Jason. She ran all five blocks to the scene, and ambulance attendants carefully shielded her as they hurriedly asked her to ride to the hospital with them. There were no sirens to be heard. Upon arrival at the hospital, 16-year-old Jason was pronounced dead. "When they asked me if I'd consider donating Jason's organs, I did not hesitate," Trapp recalls. "It was just the right thing to do. It was the normal thing to do. Anything that could be transplanted was transplanted. Donate organs — it's something you should do. There are thousands of people in need."

For more information on the Gift of Life Donation initiative, visit www.organdonor.gov. To learn more about donation in the Washington, D.C., area, contact the Washington Regional Transplant Consortium at www.WRTC.org. For more information on NIAID-sponsored clinical trials in transplantation, visit www.niaid.nih.gov/clintrials.


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