Bob Garrett on the Donate Life Golf Classic

The Donate Life Golf Classic was started as a dream Brad Schuttler and I had to do something relevant with regard to donor awareness and education through the media. After managing radio stations and cable facilities in Kansas City and in Texas for more than 25 years, it seemed to me, with my media experience, I had the resources to help make our dream come true.

As I was recovering very drowsily in ICU, after my life saving liver transplant in 1997, Brad Shuttler, wearing an hawaiian shirt, somehow snuck into the room and put a golf ball in my hand. It seemed so surrealistic to me, and we joked about how I would once again be able to play.

That started it, and finally in 2001, our special group of recipients, donor families, and advocates launched the first Donate Life Golf Classic. Five years later, with more than 120 golfers playing every year with general managers of area hospitals, television and radio stations, with incredible support throughout the medical community, we feel, as a foundation we can make a difference.

88,000 people are on the waiting list for transplants, and 17 die every day waiting for an organ. Promoting donor awareness is and will remain the right thing to do. Signing your drivers license and discussing organ donation with your family is the first step.You never know, you may save a life.

Donor Families: Rich’s Story

Kathi’s husband, Rich, was killed in May of 2000. This is their story of donation as told by Kathi.

My story begins May 5th 2000. I was on my way home home when my cell phone rang. It was my husband’s office calling to tell me there was a accident and that I needed to go to Truman Medical Center at once.I asked what was wrong, but they wouldn’t give me any details. The drive to TMC should have only taken me fifteen minutes, but it seemed like hours, hitting every red light on the way. I kept thinking my husband had a heart attack, or was in a car wreck while running errands. When I finally arrived at the hospital, I was so scared. A social worker came an told me that my husband was seriously injured.

I was in shock and disbelief. I felt sick to my stomach and my heart was pounding. I asked…. are you sure you have my husband? He works in a law office with only 2 other people. My family and friends began to gather at the hospital…I got to see my husband briefly as they were taking him to surgery to stop the bleeding and attempt to repair his injured body.

The doctor said his outcome did not look good, but they would do everything they could. More family had arrived from out of town. The waiting room turned into a reunion of more than 40 people at one point. I felt lost. My stomach hurt and my heart was sinking into deep overwhelming sadness. I prayed. When the doctor finally came out he said my husband had made it through the surgery, but the next 24-48 hours would tell us if there was blood flow to the brain.

I spent the night next to his bed holding his hand and praying. Once again, hours and days passed, and the surgeons came back and said there is no blood flow to the brain. Even though my husband was breathing and his heart was pumping, he had died. To keep him going on machines would have been wrong, and he would not have wanted it. I stood back and said to myself this is not suppose to happen. The biggest decision of my life need to be made as to whether or not to keep him on the life sustaining machines.

The Midwest Transplant Network people then came in and talked to me about donation. By this time, I was asking myself and my family what would Rich want to do? How can any good come from such a tragic situation? I thought….Donation. Its been five years since my husband’s death, but his heart and kidneys have saved lives. HE LIVES ON.

As I look back at everything that has unfolded around his death; the hospital care, doctors, nurses, social workers, and even a kind volunteer that took the time to talk to me…… Iunderstand…. the damage was to great but my husband’s love for his family, friends will never be forgotten because he is helping someone else to have a second chance at life. I thought to myself, what a precious gift.

I often ask myself this question today…… If I had to do it all over again know what I know now about donating your organ to save a life, would i do this…. I have only one answer -YES I would Donate! The tragic situation ended in a life saving event for not one but 3 people. My husband is living on and his memory is forever etched in to my heart.

Donor Families: Dena’s Story

Dena’s father, Larry, tells their story of donation:

This is the story of Dena, an active teenager who was full of life, and the turn of events that changed the lives of many people. Because we made a caring choice, over 75 people received a second chance for life.

It was just another beautiful summer afternoon, but surprises were on the way. While Dena was out with a friend, Dena’s family was decorating for a surprise 16th birthday party. The clubhouse was ready, guests were excited, and the life of a Dad’s most precious love was about to change forever. Thirty minutes after Dena and her friend left the house to go to a movie, the driver missed a stop sign and their car was hit by another vehicle.

Police and medical teams rushed to the scene to save Dena’s life. Throughout the night, trauma teams worked to find answers to the head injury that Dena suffered. Prayers were offered for a miracle to save her life, but the diagnosis was that she was brain-dead. A beautiful, healthy young woman with everything to live for was now a candidate to donate her life-giving organs. When approached by the Organ and Tissue transplant network specialists, the family made the hardest decision of their lives. But as her father Larry said, “If you lose a loved one, then let others benefit from your loss”

The choice was one the parents had to make, but in reality, Dena had already made that choice the previous summer when she was a volunteer at a local hospital. During a conversation with Dena and her Mom, Dena said that if she were ever involved with a life threatening accident, that she would want to be an organ and tissue donor. As she said, ” Why wouldn’t I? I wouldn’t need them anymore, and look at all the people that need a second chance at life.”

Dena’s death bought a second chance for life to over 75 people. A woman, whose daughter was the same age as Dena, needed Dena’s lungs. A family friend needed a new healthy liver, and countless others benefited by this giving act. The gift of life.

No parent wants to become a Donor Dad or Mom. We always want our children to outlive us. But we made the right choice. Now Dena lives in others. And because of the conversation between Dena and her Mom, the choice was much easier to make. Talk to loved ones about your feelings and support for Organ and Tissue donation. Sign your donor card, and talk to your family. The choice you make might save a life. Life is the greatest gift you can share.

Living Donors: Joyce Falsey & Family

So far five members of the Falsey clan have donated kidneys - and they’re not done yet
Joyce Falsey is in the midst of a daylong battery of examinations- blood work, stress tests and psychological assessments- when she and her husband, Tom, sit down with Dr. Lucile Wrenshall to discuss her upcoming operation to donate a kidney. “It feels like old home week having you back,” says Wrenshall, co-chair of the Nebraska Medical Center’s kidney and pancreas transplant program. “Gosh, you probably don’t have any questions. You’ve been there, done that, almost.”

That’s because she’s had plenty of company. When Joyce, 60, had the surgery this fall to give her left kidney to a stranger, she became the fifth member of her extended family to donate a kidney- an extraordinary record that exceeds any other family, according to the United Network for Organ Sharing. “Being an anonymous donor in itself is a leap,” says Catherine Paykin of the National Kidney Foundation. “To have a whole family that has undertaken this is very exceptional. It’s a heroic thing to do.” To the Falseys it just makes sense. “I’m just an ordinary guy,” says Tom Falsey, 49, a project engineer for a health-care company, “who saw a need and did something about it.”

Aaron Schurman”The Falsey family’s surgical crusade began back in 1990, when Rich Schurman’s son Aaron, then 17, went on dialysis after years of chronic illness. His father, now 57, the brother of Joyce, was ruled out as a donor because his blood type wasn’t compatible. So Aaron’s mother, Joan, stepped forward, undergoing what was then a complex surgery requiring five days in the hospital and six weeks recovery and leaving a nearly six-inch scar. Still, “you’d do anything for your kids,” says Joan, 57. “I just didn’t want to lose him.”

Eight years later Aaron’s kidneys began to fail again and he became gravely ill, losing 50 lbs. “He looked like he was 70 or 80 years old,” says Joan. “He was gray, his face was wasted.”

Watching that deterioration got to his uncle Tom Falsey, who without being asked offered in 2001 to donate his own kidney. “That was just overwhelming,” says Rich Schurman. “We were at the point where we were starting to grasp at anything. So when Tom offered, we were willing to accept.”

But just 48 hours before the surgery, final tests ruled out Tom as a suitable match. “He was devastated,” says Joyce Falsey. Meanwhile, against her brother’s wishes, Aaron’s sister Michelle, then 33, had secretly gotten tested. Months later, in April 2002, she gave her brother her left kidney. “Something needed to be done,” says Michelle, a medical-research technologist, “or we were going to be putting him in the ground.”

Witnessing the change in his nephew only made Tom Falsey, who has no children of his own, more resolute. “I knew I would be an acceptable donor,” he says, “but I did not have anyone to donate to.” He contacted the Nebraska Medical Center, but Dr. Brian Stevens, who directs the transplant program with his wife, Dr. Wrenshall, told him the facility had no anonymous donation program. Undeterred, Falsey offered to donate a kidney himself and, with help from his employer, gave a few thousand dollars to create a fund to defray the cost of donor testing. “Tom was a thorn in my side- a pleasant thorn,” says Stevens. “It was a very good thing.”

Particularly, as it turned out for Jordan Shaw of Omaha, whose childhood cancer had led to such severe kidney problems that in January 2003, at 15, he joined the transplant list. Six months later, in the middle of a dialysis treatment, he got the news a donor had been found. “I literally wanted to jump for joy,” says Shaw. “But I was hooked up to the machine.”
Jordan Shaw calls Tom Falsey “an awesome person,” adding, “My mom told me to say thank you, but there’s so much more to it than that.”

Just as excited was the donor: Tom Falsey. Rather than the more invasive surgery that Joan went through, with large incisions cut through her back and stomach muscles, doctors used a laparoscopic procedure developed in 1995 that required just three dime-size incisions in the abdomen. Locating the kidney with a tiny camera on the laparoscope, they removed the fist-sized kidney through a 3- to 4-in. incision. Tom says it was so painless that he awoke from anesthesia and thought the surgery hadn’t happened. He fully recovered within three weeks. (Not everyone is so fortunate. Recovery can still be painful and take six weeks.) Afterward Shaw sent him a letter: “Now that I have your kidney, I have a chance to have a normal sophomore year.” Tom wrote back: “God blessed me with two healthy kidneys. . . . I couldn’t help everyone on the waiting list, but I could help one.”

He could also provide inspiration. A couple of months later Tom got a call from his brother Jim, a Catholic priest in Au Gres, Mich. “If you can do it, I can do it,” he told him. Father Jim, now 59, spent six months studying up on organ donation and then, on April 21, had the surgery to remove his left kidney. “We don’t own anything,” says Jim. “Everything is a gift on loan.”

His recipient keenly understood that outlook. Nine years earlier Karen Bryce, now 43, of Rochester, Mich., had donated her own right kidney to her ailing father. Though she says doctors assured her that she was at low risk for kidney problems, she developed high blood pressure and by 2001 went on dialysis. Says the former waitress, a single mother of two girls, of her donor: “There’s no words to express the gratitude you feel.”

Given that nearly 60,000 Americans are awaiting kidneys- and that, according to UNOS, about 6 percent of those people will die waiting- “I don’t understand why more people don’t step forward,” says Tom Falsey. “It’s a rare opportunity where you can save someone’s life at virtually no risk to yourself.”

Though kidney donation surgery is indeed relatively safe (with a mortality rate of 3 in 10,000 and just 1 percent of donors developing complications such as infection), anonymous donation- in which someone gives a kidney to a stranger- is still at the frontier of medicine. Between 1988, when figures were first collected, and the end of July, some 64,224 living donors gave kidneys; only 228 did so anonymously (all since 1998). “People on dialysis are truly suffering and often facing death,” says the National Kidney Foundation’s Paykin, who coordinates its transplant program. “For the recipient, [organ donation] gives them the possibility of living a fruitful life.”

After watching her sister-in-law, niece, husband and brother-in-law donate kidneys, Joyce Falsey came to a decision last April. “I want to do it,” she told Tom. Mostly she was inspired by watching Aaron recover so robustly. “He was so sick he could hardly walk,” she says. “A year later he looked great. You can’t not react to that.” Though she experienced a bit more postsurgical pain than her husband and brother-in-law, Joyce also felt the satisfaction- as did her recipient, Regina McDonald, 38, of Omaha, who had been on dialysis for six years after lupus caused kidney damage. Still recovering from the operation, McDonald is the only recipient who hasn’t yet met her Falsey donor. But she intends to. “I’m thankful to God that he allowed her to donate to someone she doesn’t know,” she says.

Could there be more Falseys donating kidneys? Rich Schurman, Aaron’s father, a corn and soybean farmer, is the latest family member contemplating donating- sometime after the annual harvest ends in November. Though Tom Falsey has tried hard not to pressure anyone, he can’t hide his enthusiasm for the results. “It’s certainly an incredible feeling,” he says, “to change a person’s life.”

By Thomas Fields-Meyer. Kelly Williams in Omaha and Macon Morehouse in Washington, D.C.
Reprinted from PEOPLE Magazine © 2004 Time Inc. All rights reserved.

Organ Recipient: Andy Donnelly

Meet Andy Donnelly. Andy is a medal-winning athlete at the annual Transplant Games, and an example of an organ recipient living a full life. He owes his second chance at life to a generous donor family who made his life-saving transplant possible.

Andy was diagnosed with a rare form of cancer in December of 2000. His liver was being ravaged by 28 cancerous tumors. When chemotherapy and other attempts failed to affect the size of the tumors on his liver, the idea of a liver transplant was proposed. After passing the physical and mental evaluations that are required to become a liver recipient, Andy went on the liver transplant list.
Andy’s wife, Tiffany, recalls what she felt the day her husband went on the transplant list.
“I was just hoping that Andy would get a liver and live a halfway normal life.”

He was fortunate enough to receive a liver in just a matter of weeks. “I was really, really lucky” he says of his short wait.

Although his wife, Tiffany, was hoping that he would someday be able to live a “halfway normal life,” Andy had greater ambitions. When he found out a liver was available, he made it clear to Tiffany that he wanted to get well enough to participate in the Transplant Games. He knew it wouldn’t be an easy road, and as soon as doctors cleared him, he began training.

Andy says that the Transplant Games gave him motivation to get into top shape. Today, Andy is a medal winner on the successful Mo-Kan swimming team. And while the games give him an opportunity to celebrate his health, they also give him time to reflect on the sacrifice one family made for him. He dedicates a good deal of time and energy spreading the message about the importance of organ donation.

“We’re just trying to contribute back to something that was lifesaving to me. It’s the ultimate sacrifice and the ultimate gift.”

Organ Recipient: Rose Naughtin

At the age of three, I was as healthy and happy as ever. I was lively, energetic, and talkative, just like anyone else my age. Every day, when my dad came to pick me up from preschool, I would run and hide in various playground obstacles until he found me and took me home. I could never be happier.

One day, my dad came to pick me up, and instead of the usual run and hide routine, I was waiting for him on the playground bench. This continued and every day I got a little worse. I started having trouble breathing, I rarely spoke, and had almost no energy. I was diagnosed a few times with pneumonia, which I did have, but the cause wasn’t what the doctors thought it was.

By the time I was four years old and weighed 28 pounds, I went to Children’s Mercy Hospital in Kansas City , where I was diagnosed with restrictive cardiomyopothy, which developed when a virus attacked my heart. We went to St. Louis, where Dr. Charlie Canter at the St. Louis Children’s Hospital examined the situation more carefully. He told us that a transplant would be our best choice.

To me, a heart transplant made perfect sense. If something breaks and you can’t fix it, you just replace it, right? It was a bit more complicated than that, but I had the basic idea.
Five weeks after I was put on the transplant list, I had to go to St. Louis in a jet to receive my new heart. We never met the family of the boy who donated his heart and saved my life, but I always think about them. Thanks to their life-saving decision, I was riding on a tricycle through the hospital two weeks later. Soon after that I went home, and in no time I was back to my old self. I grew up healthy and normal lifestyle, excluding medicine and frequent checkups, for the next 8 years.

However, when I was 12, I received shocking news: I was going to have to have another transplant. I had developed Severe Coronary Artery Disease, which happens in almost all heart transplant recipients because of constant, low-level rejection.

And so, we made our first trip to St. Louis in a long time. Naturally, I was upset by the news . . . I wasn’t really worried . . . I don’t worry about very many things. But I didn’t want to go through with it. I would have to miss school, and my friends, and I’d have to be in the hospital…and the recovery would take a long time. I knew I didn’t have a choice, but I didn’t want another transplant. Dr. Canter at the St. Louis Children’s Hospital told me that second-time heart transplants were usually trickier, because I had built up more antigens, which made it more likely for rejection. He also said that I had a risk for heart attack, since my arteries were so narrow. The best way to prevent this was to have a defibrillator implanted. A defibrillator is a pacemaker that will electrocute the heart if it goes to slow or beats irregularly.

I waited for 3 weeks, and on Monday, April 12, 2004 at 2:00 in the morning, I woke up after I heard my parents shuffling around the house, talking and making phone calls. I knew almost immediately what was going on, and I got out of bed. I obviously wasn’t tired, and I wasn’t really scared… I was very anxious. I traveled back to St. Louis Children’s Hospital in a medical evacuation jet. I woke up two days later, after having a successful second heart transplant. When I woke up, I had a tube in my throat, so I was very uncomfortable and I couldn’t talk, but my mom gave me pieces of paper to write on. I slept most of the time. When I was awake, I usually felt depressed, because of the medicine I took and because I couldn’t see or talk to any of my friends. I got out of bed a few times a day, and after being in the ICU for a little over a week, I was able to move into a regular hospital room. I got lots of cards from people back at home, and every once in a while I could call my friends or go to the computer and talk to them online.

I still was feeling pretty sad….I just wanted to get home. After about another week, I was able to move to the Ronald McDonald house. Another week at the Ronald McDonald house, and I was able to go home. I was so happy . . . and when I got back, my neighbors and some friends were waiting in my front yard! My good friend and neighbor, Alison, told me to go upstairs, and I found that she and some of her friends had redecorated my room. It was wonderful to sleep in my own bed again. I couldn’t believe how many people in my community were trying to help out…it was wonderful. I1m so thankful, without them it would have been horrible.

Its been one year now, and I’m already back to the way I was before. I completed a cardiac rehabilitation program at Lawrence Memorial Hospital. I’m going to school, and I love walking downtown with my friends. Every summer I go to a camp with other kids who have had heart surgery at Children’s Mercy. I’m so lucky that my surgery was successful, and that I’m where I am today. I’ll never stop thinking of the people who saved my life - the doctors, the nurses, and most importantly, the donor families who agreed to let me have their child’s heart.

Organ Recipient: Sydney Salmon

Soon after Sydney was born in January 2000, she was diagnosed with cardiomyopathy. During her first year of life, her condition deteriorated. She was followed by the doctors at Children’s Mercy Hospital in Kansas City and in October of 2000 was transported by air to St. Louis Children’s to be evaluated for a heart transplant. St. Louis was the closest hospital to Kansas City that did heart transplants on children and was also highly recommended.

She improved sufficiently at that time to be able to return home, but on Christmas that year was admitted to Children’s Mercy again. Her condition worsened rapidly to the point that she could not breathe on her own and had to be placed on a respirator. St. Louis Children’s Hospital flew their transport team to Kansas City again to pick her up. At this point our only hope for her to survive was if she got a new heart. The wait began. She continued to worsen. Her heart became so weak she had to be placed on ECMO, which is a large machine that takes over some of the work of the heart.

With this machine we had the added risk of infection since her blood was being circulate outside her body. My daughter, Allison, seldom left her side. I talked her into taking a one day break to come back to Kansas City and take care of some things at home she was worried about. On that day, January 2nd, she received a call that there may be a heart available. She got on the next flight back to St. Louis. Sydney was taken to the operating room to be prepped. Allison and her husband Scott and other family members waited.

In the wee hours of the morning on January 3rd, Allison heard the helicopter land with Sydney’s new heart. The surgery itself did not take long. Sydney’s new heart began beating spontaneously. It is impossible to describe what some stranger did for us. In their absolute horrible time of grief they gave the most incredible gift that could ever be given. A life. Sydney.