Lifesavers: Stories of Organ Donation
SPECIAL OFFER: - Limited Time Only!
(The ad below will not display on your printed page)

lhj

Lifesavers: Stories of Organ Donation

Checking that organ donor box on your driver's license may feel like an abstract decision. In fact, it's anything but. Just ask these four women.

Lifesavers

Kerry Hutchins had battled cystic fibrosis since birth but last year, when the 33-year-old mom from Sparta, Michigan, took a turn for the worse, she was moved to the top of the waiting list to receive a double-lung transplant. It was her only hope of living long enough to see her sons, Cordell, then 13, and Aiden, 4, graduate from high school.

Hutchins waited in vain. Her heartbreaking plea -- shown on local TV as well as the Internet -- touched the thousands who saw it and more than tripled the monthly tally of people who usually register as organ donors in her county. (See the video here.) But she died before a match could be found. "We never wished anyone would die so Kerry could have lungs," says her father, George Roby. "But sadly, people do die before their time, and we hoped and prayed a match would arrive to save her life."

Hutchins's case exemplifies the current crisis in organ transplantation: Demand far outstrips supply. A name is added to the national organ transplant waiting list every 10 minutes. And every day 18 people on that list die because no organ can be found in time. The list recently reached a historic high of more than 110,000 names. At the same time the number of available organs (both from living and deceased donors) has increased only modestly.

Why the widening gap? Experts aren't sure. Potential living donors (of kidneys and livers) may worry that insurance won't cover expenses, that they'll lose income while recovering from surgery, or that they'll run into insurability issues later on. Fear, too, plays an undeniable role, especially after the widely publicized case last year of Ryan Arnold, a South Dakota orthodontist who died after surgery to remove part of his liver to donate to his brother. (Experts point out that such deaths are exceedingly rare.) With deceased organ donation, the problem likely stems from a lack of awareness. But the biggest factor may be the success of transplant surgery itself: Advances in surgical techniques and the drugs prescribed to prevent organ rejection allow more and more doctors to recommend transplants for gravely ill patients, thus fueling demand.

Another calamity can be blamed on the recession: Last October Arizona stopped paying for seven types of transplants, and other cash-strapped states may soon follow. Since Medicaid funding was cut off, two Arizona patients in desperate need of transplants have died. The organ shortage has also ushered in potential changes in transplant policy. In February the national network that arranges transplants, the United Network for Organ Sharing (UNOS), outlined a possible new system for transplants of kidneys (the most commonly transplanted organ) that would age-match donors and recipients. Under such a system a younger organ would go only to a younger patient, regardless of how long another, older patient had been on the waiting list.

Amid these sobering medical realities, however, there are millions of success stories -- people whose lives have been saved and completely transformed by organ transplants. For anyone needing proof that the gift of an organ is the gift of life, consider the dramatic turnarounds of these women.

A Beat Goes On

One day Melissa Simon was a healthy freshman at an Indiana high school; the next she was doubled over in pain. The culprit? A viral infection that weakened her heart.

After six months of bed rest and rehabilitation she was strong enough to return to school. She even danced the lead in her high school ballet. From there she went on to college, started a career in Chicago, and got married. Then, in 2006, the pain and fatigue returned. At 26 Simon couldn't muster the strength even to brush her teeth.

Initially she dismissed her symptoms as flu, but a cardiologist determined her heart was dangerously enlarged and pumping at just 20 percent capacity. Simon had surgery to repair a leaky valve, but a few weeks later fluid surrounded her heart. She didn't grasp how dire her situation was until doctors swarmed her hospital room and began a rare procedure to drain the fluid. When a young resident grabbed her hand and squeezed, Simon realized that he thought she might die. "It was like a scene from ER," she says.

The next day doctors listed her for a transplant, telling her the wait could be three hours or three years. Just two weeks later, in June 2007, Simon got word that a donor heart was on its way. She was overcome with conflicting emotions. "Just as you're facing the best day of your life," she says, "someone else is facing the worst day of hers."

That day unquestionably was the worst of Jon and Linda Coleman's lives: Their youngest child, Chloe, 14, a hip-hop dancer, choir singer, and lacrosse team captain from Chapel Hill, North Carolina, had just died after a tragic accident. Through the blur of shock and grief, the couple agreed to donate their daughter's organs. "Chloe would have wanted to help," says Linda Coleman. "She was a very giving person."

Privacy laws, of course, prevented Simon from knowing any of this. Six months later, in a surge of Christmas-season gratitude, a now-healthy Simon sent a thank-you letter to the Colemans via a donor services agency.

The couple felt an instant connection to the woman they knew only as "Melissa," but whenever they tried to write back they fell apart after a few sentences. Then one day, sweeping behind a couch, Linda Coleman found one of the origami birds that Chloe's classmates had made in her memory. It opened to reveal the hand-printed word open-hearted. On the anniversary of Chloe's death the Colemans sent that letter, enclosing the bird. Simon was so moved that, with the sponsorship of Donate Life Illinois (where she volunteers), she videotaped herself reading a letter to Chloe and urging organ donation.

The link to that video (watch it here) popped up over a year later when Jon Coleman, sitting in an airport, googled "Melissa, heart transplant, Chicago." As he watched the video, tears streamed down his face. That experience led to the Colemans' first phone call to Simon.

When Simon told them she planned to honor Chloe's memory with a 94-flight charity climb in Chicago's John Hancock Center, the Colemans flew to Chicago to cheer her on, bringing a stethoscope so they could listen to Chloe's heart. "Hearing the heartbeat helped us feel that she's not completely gone," says Linda Coleman.

But she'd already sensed that in the elevator to the observation deck a few moments earlier. As she got on, the operator handed her a small piece of folded-up paper left behind by a child. "Strange," she said.

"Not really," Coleman thought, looking at the red origami bird and breaking into a wide smile.

Sisters in Song

Dianne Martin and Patricia "Hooley" Norwood had lived in neighboring towns in South Carolina and sung in the same 180-member Victory Baptist Church choir for two years without ever meeting. Then one Sunday in 2007 Martin, 53, stood at the pulpit and explained to the church's 2,500 congregants that she was sick with the same polycystic kidney disease that had taken her father's life at 39. Faced with 12 hours of dialysis a week and no appropriate donors among family members, she made a tearful yet humorous plea: "If anyone out there has three kidneys, please see me after church."

From her seat in the choir loft, Norwood, 60, was immediately struck with a deep conviction that God wanted her to be Martin's donor. Along with dozens of other church members, Norwood had herself tested for compatibility and discovered she was a closer match than Martin's half sister. "That was the writing on the wall," she says. But doctors discouraged her, saying she was, in her words, "too old and too fat" to donate a kidney. (She had undergone hip replacement surgery in 2003 and the steroids she was prescribed caused her to gain weight.) Undeterred, Norwood lost 50 pounds over the next eight months. "I couldn't stand in a choir praising God and knowing I had spare parts with a woman dying next to me," she says.

When Martin's doctor told her that a match was available from a fellow church member, the pastor had to explain that the donor was the cheerful alto who sang opposite Martin's soprano section. "It was overwhelming," she says. "You don't know how to respond to that kind of gift."

Norwood's kidney-removal surgery was a fairly simple procedure with a 48-hour hospital stay and a speedy recovery. The hardest part of the whole process, she says, has been deflecting the praise heaped on her by Martin and a host of others. "It's embarrassing," says Norwood, who expects to live a long, healthy life with one kidney.

Today both women are thriving and still singing together in the choir. "We're sisters now," says Martin, whose three grown children even send Norwood Mother's Day cards. "We have an unbreakable bond."

A Race for Life

When April Gross, 40, was diagnosed with cystic fibrosis as a toddler, doctors told her parents she would be unlikely to live past puberty. Back then the prognosis for the hereditary disease, which causes thick, sticky mucus to build up in the lungs and digestive tract, was poor. To loosen those secretions, her parents pounded on her chest and made sure she was physically active. Their efforts paid off: Gross had a relatively healthy childhood in Strawberry Point, Iowa. "I was one of the lucky ones," she says.

As an adult Gross developed CF-related diabetes and was hospitalized often for pneumonia. But she managed to attend college, work full-time, and, in 2002, get married. Then, in 2008, her luck seemed to run out. Her lung function was just 32 percent and she felt sicker than she'd ever been.

By Thanksgiving Gross needed an oxygen tank around the clock, but she was ineligible for a bilateral lung transplant until her lung function dropped below 30 percent. A little more than a month later it was at 18 percent and her name was added to the transplant list. She prepared herself for a long wait -- up to a year, doctors warned -- but on March 19, 2009, her phone rang as she was putting away groceries. A pair of lungs had just become available for immediate transplantation. "I was happy, of course," she says, "but I couldn't help feeling sad and guilty, too, knowing that someone died to give me this chance."

That someone was Lisa Darling, 14, a spirited straight-A student and standout athlete from Humboldt, Iowa, who'd collapsed on her way home from school when an aneurism in her brain ruptured. As doctors at a trauma center in Des Moines pronounced his daughter brain-dead, Greg Darling, a Humboldt school community superintendent and former science teacher, remembered a conversation he'd had with Lisa the day she'd gotten her learner's permit. "They'll take your picture and ask you if you want to be an organ donor..." he'd begun.

"Yeah, definitely -- it helps other people!" she'd said before he could finish his sentence.

Gross's surgery was a resounding success. Flush with good health for the first time in her life, she resolved to run in the 2010 Dam to Dam, the country's largest 20K race. During months of training she often thought of her donor and wanted to write the family but was unsure what to say. (Although privacy laws protect donors' anonymity, hospitals and coordinating agencies can forward letters.) Then one day in the fall of 2009, she says, "I just knew exactly what to write." The date of her letter? October 25, what would have been Lisa's 15th birthday.

"We saw it as a sign," says Darling, who answered the letter with his wife, Sandi. When they heard that Gross would run in a T-shirt that had Lisa's photo on it, Darling decided to enter the race, too. With some 7,000 runners registered, he and Gross agreed they'd meet up at the finish line. But a half mile into the race, Darling looked to his side and saw April, wearing a T-shirt like his, sporting Lisa's smiling face. "It was special," Darling says, his voice choked with emotion, "because I got to run with two people that day -- April and my daughter."

Double Blessing

One January night in 2006, Leiauna Anderson, then 32 and seven months pregnant, had just finished going over the guest list for her upcoming baby shower when she realized she hadn't felt her baby move in a while. "It felt still and weird and wrong," she says.

Her husband, Jeff, was out of town so Anderson drove herself to the hospital, not far from their Los Angeles home. Two nurses probed with a monitor but couldn't find a heartbeat; doctors confirmed that her baby had died. Anderson called her husband and mother with the awful news, and they rushed to the hospital.

Doctors tried inducing labor, but Anderson barely dilated. When her blood pressure suddenly plummeted, they decided to perform an emergency C-section. Screaming in pain, she was rushed into surgery where doctors discovered that a rare pregnancy complication had caused her liver to rupture, spilling two liters of blood into her abdomen. Jeff watched in horror as a doctor lifted her liver to wring out the blood.

Doctors managed to stop the bleeding and remove the fetus, but her condition deteriorated. Her kidneys failed and her eyes showed no response to stimuli. She was transferred to UCLA Medical Center and placed at the top of the transplant list -- after a brain scan showed there was still vital activity.

Within an hour Anderson received a liver with a compatible blood type that was so large that doctors had to wrap her incision with Gore-Tex to keep the liver inside. The imperfect organ saved her life but didn't make her well: Her blood began to thicken and clot, slowing oxygen delivery to her organs. "I was hanging on by a thread," she says.

Three days later a compatible liver became available from the family of a 19-year-old motorcycle accident victim. Doctors performed a second transplant and Anderson improved almost immediately. Before the week was out she had endured eight surgeries; it was another month before she could leave the hospital and begin physical therapy. "I was 32 years old and using a walker," she says. She was also swallowing 50 pills a day -- a mind-boggling contrast to her single daily multivitamin -- and seeing a counselor to deal with grief over her baby's death and the news that future pregnancies could be life-threatening. "I wondered, will I never be a mom?" she says. "It was all I ever wanted."

During Anderson's recovery her brother's wife made an extraordinary offer: She volunteered to be a surrogate once Anderson was well enough to undergo retrieval of her eggs. The Andersons' son, Rex Magnus Anderson, was born in November 2008, nearly three years after the transplant; appropriately, the couple took him home on Thanksgiving Day. "Not only am I lucky enough to be alive, but because of my donor, so is Rex," says Anderson. "I am really blessed."

More Facts

Organ Donation and the Law

The current crisis in transplants has prompted a spate of new legislation. California passed a law last year creating the first living kidney donor registry in the nation, and a New York legislator has proposed a "presumed consent" bill (similar to many in Europe) that would make his state the first to consider all residents donors unless they have indicated otherwise in writing. Currently, state laws require residents to volunteer to be donors, most commonly on their driver's license. Advocates cite a 2010 study that found that most New Yorkers strongly support organ donation, yet only 13 percent are registered donors. Similar "opt-out" legislation is pending in Illinois and has been proposed in Delaware and Pennsylvania.

Sign Me Up!

Are you a designated organ donor? If not, don't wait until it's time to renew your driver's license. Register today by going to donatelife.net and clicking your state for instructions. Or download the free DonateLives app for iPhone.

Originally published in Ladies' Home Journal, June 2011.

shim