One family’s foundation convinces teens to become organ donors
6 a.m. (check-in and breakfast) and 8 a.m. (start) April 20
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Atlantic Recreation Center, 2500 Atlantic Ave., Fernandina Beach
Walks: 5K or 10K Fort Clinch scenic walk
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Most of us will never get the chance to save one life, much less five.
In 1998, one of David and Susan Caples’ daughters, 17-year-old Katie, sustained fatal injuries in an automobile accident when she was on her way home from a March of Dimes walk. She died 6 days later. Because Katie was an organ donor, her last act of charity was likely her greatest: She gave the gift of life to five people on the transplant list and enhanced dozens more through tissue donation. Her lungs, heart, liver and kidneys (separately) were donated.
To honor their daughter’s memory, later that year the Caples started the Katie Caples Foundation as a scholarship program. As time passed, though, they kept getting the feeling that there was other work for them to do.
“Susan and I found ourselves crossing paths with a lot of donors and recipients, and we didn’t know why that was happening,” David Caples said. “Sometimes they would stop us and engage in a conversation because they had lost a child, perhaps a spouse, [who had] been a donor, and the more we had those contacts, we began to realize there was something else we were supposed to be doing.”
So in 2004, the foundation started an organ donor education program in partnership with LifeQuest Organ Recovery Services, Northeast Florida’s organ procurement organization. The following year, they held the inaugural Katie Ride for Life to support the program and increase awareness. That year, 202 cyclists raised $57,000. In 2012, nearly 1,400 people participated in the ride or walk, which was added in 2009, generating $292,000.
The foundation employs a full-time educator and has recently reached an agreement with Shands Hospital and University of Florida to hire another. The program educates people, most of them high school freshmen and sophomores, about organ donation “to increase the number of registered organ donors and eliminate the wait for individuals in need of a transplant.”
“We try to talk to every age but, predominantly, what we’ve found we can be very effective with is working with teenagers,” David Caples said.
Amy Reese, the program’s full-time educator, travels North Florida — from Tallahassee to the Atlantic Ocean — educating teenagers about organ donation with the hope that they will be more likely to say “yes” to organ donation, either when they get a driver’s license or by signing up online.
“How many people get to say at the end of a day that they might have just saved a life?” Reese asked.
Since 2004, the education programs have reached more than 78,000 people, with measurable success. According to the foundation, the rate at which individuals join the state donor registry as a percentage of all driver’s licenses and ID cards in counties where the program operates is 12 to 15 percent higher than the average in Florida. St. Johns (64 percent) and Nassau (62 percent) are the top two counties in the state. Clay County (60 percent) is in the top five; Duval (48 percent) lags far behind. The statewide average is 52 percent.
Urban counties, particularly those with higher percentages of minorities, tend to have lower organ donor sign-up rates. Reese and Caples acknowledged that misunderstandings and stigmas about organ donation are particularly pervasive in minority communities. The rate of organ donor sign-ups for African-Americans in North Florida for January was 32 percent, compared to 56 percent for Caucasians. A lower sign-up rate for some groups is a problem with potentially fatal consequences. Some blood and tissue types are more common among certain ethnicities.
“We need to make sure that we create educational programs to talk to the different cultural groups and have individuals who can make those presentations,” Caples said. “Duval is high on our radar.”
The organ donor sign-up rate for African-Americans in Duval County between the ages of 15 and 18 — who are likely to have seen the education programs — is somewhat higher than the overall group, at 39 percent (63 percent for Caucasians aged 15 to 18).
Nineteen-year-old Brooks Bernstein, a University of North Florida sophomore, wasn’t an organ donor until the foundation program convinced her to become one last September. Today, she is working to start a UNF branch of Donate Life, a national organization that promotes organ donation awareness.
“It saves lives; it’s one person helping a bunch of people in one of the biggest ways possible,” she said. “It’s really, really important.”
Bernstein, the Caples family and others are working to make teenagers comfortable with the idea of organ donation. That’s what happened for Fletcher High School senior and organ donor Gage Nicholson, whose decision to become an organ donor was reinforced by the foundation program.
“I just think that if someone else needs my body more than I do after I die, I think that should be the right thing to do,” Nicholson said.
For several reasons, The Katie Caples Foundation focuses on educating teens about organ donation. They will probably be asked if they want to be organ donors for the first time when they apply for their driver’s license. Many have been misinformed through television, film, friends and family that doctors will withhold life-saving treatment if they are organ donors. Procedures are in place that guarantee that should never happen. Some mistakenly believe their religion prohibits organ donation, but all major religions endorse organ donation as an act of charity.
And teenagers make ideal donors. No one wishes for young lives to be cut short, but teenagers die every year, most often in traffic accidents, which are on the rise. The Governors Highway Safety Association reported a 19 percent increase in the number of teen traffic fatalities for the first six months of 2012. While educating the public, and teens in particular, about safe driving habits is important, so is educating them about becoming organ donors. Both have the potential to save lives.
One Recipient’s Story
While most people his age were raising their families and advancing their careers, Len Geiger was just trying to breathe. In 1994, Geiger, then 35, learned that he had Alpha-1 Antitrypsin Deficiency (Alpha-1), a rare genetic condition that was attacking his lungs. The available treatments would, at best, delay premature death from the disease. The only real chance he had for long-term survival was a double lung transplant.
Geiger was placed on the transplant list in 1997. Five years later, with only 15 percent lung capacity remaining, he still hadn’t got the call.
“I was still going to the gym, but the fastest I could go was 1.7 miles an hour, and I was on oxygen all the time,” he said.
Soon, he would be unable to walk; eventually he would be bedridden. Still, Geiger did not succumb to despair.
“As I got sicker and sicker, I put the whole transplant thing in a different bucket,” he said. “ ‘If I get a transplant, cool. If I survive it, even cooler.’ I was very relaxed.”
Then, the phone rang. After five years on the transplant list and eight years after he learned that he had an incurable, fatal genetic condition, Geiger matched a pair of lungs. For the first time since at least 1994 (his breathing problems began years before diagnosis), there was a chance that he could face a day without fighting for air. Geiger received two lungs from a 14-year-old girl named Korinne Shroyer on Memorial Day 2002. Five days later, he was on a treadmill walking 4 miles an hour. It is a moment he will never forget.
“I was almost ready to cry; I was so happy,” he said.
By the time he left the hospital several days later, his lung function was 100 percent.
Geiger’s progress has been amazing. Organ Procurement and Transplantation Network (OPTN) reports that, on average, half of all double-lung transplant recipients die within five years. Now 11 years post-transplant, Geiger is the picture of health. His lung function peaked at 148 percent; today it is somewhat diminished to merely somewhere in the 120 percent range. After his transplant, he ran marathons and half-marathons, and performed other demanding physical activities, until hip replacement surgeries forced him to slow down. This year, Geiger is walking the 5K Katie Walk portion of the Katie Ride with his donor’s parents, with whom he has kept in contact for many years.
“They didn’t just save my life, they created a family,” Geiger said. “They lost their daughter; now I have this little girl that’s my daughter. What a big circle.”
Geiger and his wife named their daughter Ava Corrine. She is now 7.
Geiger now travels the country promoting awareness of Alpha-1 and asks those who have not registered as organ donors to consider this question:
“If your mother or your sister or your child had to have a transplant to survive, would you want anybody else to be an organ donor? So how can you say ‘I don’t want to be one, I don’t want my loved ones to be one, but I want everybody else to be one in case I need it or in case my loved ones need it’?”
Not Enough Donors
Wait times for organs are at an all-time high and rising. On average, 18 people die every day waiting for a life-saving organ transplant. Between 1988 and 2012, the number of people waiting for an organ increased from 15,029 to 117,353. But in the same period, the number of transplants increased at a much lower rate, from 12,618 to 28,053.
Although the shortage of organs is affected by numerous factors, including advances in medical science and rising levels of obesity (obese potential donors are often precluded, because obesity increases risks for both donor and recipient), a large part of the problem is one of simple mathematics.
Fewer than half of Americans are registered as organ donors.
This would be more understandable if more than half the population was opposed to organ donation, but that isn’t the case. OPTN reports that 90 percent of Americans polled in 2012 said they support organ donation. The same poll found that only 30 percent knew the steps to take to become donors.
OPTN says that of the 117,353 people on the national transplant list as of March 18, one out of seven have been waiting five or more years; almost a third have been waiting at least three years. People waiting for kidneys (more than 80 percent of the waiting list for organs) have a median wait of more than three years, though many will wait much longer.
“There are many patients I see who are active on the transplant list for anywhere from three, five, 10, 15 years and don’t get a phone call,” said Christina Montessi, a kidney dialysis nurse in Manassas, Va., for the dialysis division of Fortune 500 company DaVita HealthCare Partners Inc. She is also a three-time kidney transplant recipient. Doctors are still not sure what caused Montessi’s kidneys to fail. Montessi’s first two kidneys came from living donors — close relatives; her most recent transplant in April 2012 was a lucky, perfect match.
It is easy to focus on the tragic side of the organ donation. Living donation is simply not possible for certain organs. But this is only part of the story.
For Shirley Thompson, a wife and mother of two who received a double-lung transplant at Mayo Clinic in October, organ donation is a miracle of life. Thompson, who's signed up to volunteer at the Katie Ride, is alive today because another person gave her something precious that was no longer of use to him or her.
The impact of organ donation extends far beyond the individual recipient.
“You just don’t know whose lives you’re going to touch, not only the people you save but their families and friends,” she said.
Mayo Clinic lung transplantation surgeon Cesar A. Keller plans to ride 62 miles (again) in the Katie Ride. Keller, who has been performing lung transplants since 1989 and performs an average of 45 transplants every year, sees the sublime in organ donation.
“I think a lot of people may have the perception that organ donation is something that may not be very successful, worth the time, going against the natural rules of life, [but] when you get involved with people who are recipients of organs and see how their lives change, how it works — well, it is such a magical thing,” Keller said. “Obviously, you don’t need the organs in heaven, so they could be put to use here for a few more years.
“Out of a terrible tragedy that can be very painful for a lot of families, something meaningful and good can come out of it.”