Keith, who was born with just one kidney, was overweight and suffered for years from high blood pressure. He was in and out of the hospital every other week because either his potassium was dangerously low or he was passing out. He was exhausted all the time and sometimes couldn’t get out of bed.
“My hands and feet were the size of basketballs, so just to get dressed in the morning my wife Michele would have to button my shirt, fasten my tie and lace my shoes. It took me 10 minutes to walk to and from the car, and I could barely get up the stairs to my office.
“One of the worst times was when I woke up one morning and I told Michele that I could not get out of bed. She had to call the paramedics to take me to the hospital on a stretcher. Seeing the fear in my wife’s eyes that day made me realize that it was not only me going through the pain and suffering, but her as well.”
Keith’s doctors put him on medications to help stabilize his high blood pressure, but the medications were hard on his kidney and it started to deteriorate. They told him he needed a transplant.
“Finally, I started to listen to my doctors’ warnings and I took action,” says Keith. He knew that the organ shortage meant that he would likely have to go on dialysis and wait years to receive a kidney from a deceased donor, so Keith first went to his biological family to search for a living donor. Unfortunately, his potential donors—his brother, daughter, and niece—either didn’t match or their kidneys weren’t large enough for Keith’s size. He began to feel discouraged. “Because I’m black, finding an unrelated donor anytime soon was unlikely. Conditions like diabetes and high blood pressure affect a higher percentage of African Americans, which means that blacks are more likely to have kidney failure. Plus, people with those conditions are not possible donors,” Keith explains.
When Keith’s stepson Johny found out that none of Keith’s biological family members were good matches, he stepped forward as a potential donor. “From day one Johny told me that he knew in his heart that he was the one who was going to give me a kidney,” Keith relates. “Johny is white, which made him a much less likely match, but he offered to be tested, just in case. It turned out he was a surprisingly good match for me—a four out of six—so he offered to share one of his kidneys.”
With this good news, Keith remained positive and upbeat about the upcoming surgery. He was aided by a close-knit family that supported him all the way.
The emotional side of the transplant did not set in until the day before his transplant. “I was driving home and I had to pull over. I started to cry like a baby. But I was crying because I was totally grateful that my stepson cared enough that he would give me such a wonderful gift.”
Johny donated his kidney to Keith on May 4, 2006, just four months after Keith started the transplant process. The surgery took about three hours. In most cases kidneys can take up the 30 minutes to start working, but Johny’s kidney started working the moment it was placed inside of Keith. The doctors were amazed that Keith and Johny were such a good match.
Johny stayed in the hospital for two days, while Keith remained in the hospital for just three. He needed only a few weeks to recover from the surgery. Now Keith has a scar on the right side of his lower abdomen, which he considers a badge of honor from the gift he received from his stepson.
After the transplant, Johny and Keith began to share a commitment to healthy living. Keith is 65 pounds lighter and very active since his transplant. He runs at least 15 miles a week, lifts weights every morning, rides bikes and goes downhill skiing.
“When I saw the look in my wife’s eyes the day the paramedics carried me out of the house, I made a promise to her and to myself that my number one responsibility was to take care of myself and that I would never put her through the pain and suffering again.”
Gone are the days when Keith ate lots of fried foods and foods high in sodium. He now prepares all of his meals at home and has cut out fried foods, soda and alcohol. “I have lots of energy and I can finally do all the things I wanted to do with my family. In fact, last November my wife and I ran a half marathon on Diamond Head in Hawaii. I would have never dreamed this was possible before my transplant surgery.”
Keith also ran for the American Transplant Foundation’s charity team in the Colorado Colfax Marathon Relay in 2008. “That was a milestone of survival for me. To run the 7.5 miles of my relay was not something that was not possible for me six years ago. Heck, just walking was even hard for me.”
Keith is not only focused on improving his own life, but seeks to improve the lives of other people who need transplants. In March of 2009, he traveled to Washington, D.C. for World Kidney Day and testified before Congress about the importance or organ and tissue donation. He also testified to pass Senate Bill #565 that would require Medicare to cover the cost of the immunosuppressant drugs that transplant recipients must take for the rest of their lives following a transplant.
“Right now, Medicare will cover all costs for dialysis patients for as long as they need dialysis. But for people who need a transplant, Medicare will only pay their expenses for three years,” says Keith. “People are reluctant to undergo a transplant because they are afraid that they can’t pay for their immunosuppressants. This legislation would change the Medicare rules so that transplant recipients would have their immunosuppressant drugs covered for the rest of their lives.”
Keith also speaks regularly to the African-American community about the importance of good health. “African Americans like me have a very hard time finding a living donor. But maybe if more people start taking care of themselves and living healthy lives, we could start to resolve this problem.
“Every morning when I get up I thank God for the gift of life that was given to me, and think about how I can touch someone else’s life in a positive way,” said Keith. “I tell people who are considering transplant surgery to take care of the gift they are going to receive. Honor that gift. And take good care of your health.”
To honor his own good health and his successful transplant surgery, Keith and Johny celebrate their own “Kidney Day” on May 4th every year. They spend time together to strengthen the bond that has brought them closer together than they would ever have imagined.
"Every day is a gift of life for me I can finally live the way I always wanted to." My wife Michele is my hero and my son Johny is my angel. It just doesn’t get any better than that.”
KEITH - Kidney RECIPIENT
When I race around the track in another 400 meter dash, I don’t think much about my racing heartbeat. But my mom does. I came into the world on October 26, 1990. But the moment of joy most parents dream of became the nightmare all parents dread.
I was less than one day old when the doctors discovered I had a rare, life-threatening heart condition called hypoplastic left heart syndrome, which basically means the left side of my heart didn’t develop right. It was untreatable.
I was rushed to another nearby hospital, but there, the prognosis wasn’t any better. The doctors told my mom to take me home, that there was nothing they could do to help. They told her I was going to die.
My mom isn’t the kind to give up easily, so as the days passed, she kept looking for help. Oddly enough, she found it in People Magazine where there was an article about a baby who received a heart transplant. Back then, those procedures were still pretty rare. But my mom was willing to do whatever she could, so she took me to Loma Linda University Medical Center in California.
Twenty-six days later, a baby boy named Danny gave me my second chance. He died in an accident, and his parents had the courage to see past their own grief to donate his heart to me.
Now, 18 years later, no one would probably guess that my life’s beginning was so tenuous. These days, I’m just a normal teenager—except that I really like school. I think I want to become a psychologist so I can help families with the struggles that affect them every day. Most days I hang out with my friends, and I also enjoy curling up on the couch for another episode of The Bachelorette. I love my 12-year-old brother Bryce, but he drives me crazy sometimes. And there just isn’t anything better than a big, hot plate of Italian food.
But every time I take my transplant medication, I know I’m a little different—and a lot luckier—than many. I got a second chance, and I want that to mean something. So when my friends are hanging out at the mall, my mom and I are often somewhere giving a presentation about the importance of organ donation.
My new heart is strong, and I keep it that way by running in track and field. Since 2000, I’ve competed in the Transplant Games all over the world, from Thailand to France. My mom embarrasses me when she brags about my medals, but I’m proud of them, too. I’ve sent many of my medals to Danny’s family. It’s the least I can do considering the life that they have given me.
It’s hard to believe that someone had to die in order for me to live. I think about that a lot. And I’m trying to make that gift mean something bigger.
I hope I succeed.
Brittney - Heart ReCIPIENT
I owe my kidney, my health, and my life to a man I had previously never met. My health problems began when I was just 10 years old, after tests following a summer’s long illness revealed that I had only one, very enlarged kidney.
Life went on. I attended Rutgers College and then Boston University for dental school. After graduating, I moved to Colorado and opened my general dental practice where I met my future wife, Kristi. Soon after opening my practice, I started to get mild headaches. I took my blood pressure and found that it was slightly elevated, especially for a young man. Additional tests by my doctor showed that I was spilling protein in my urine and that my serum creatinine, a measure of kidney health, was abnormally high. Doctors told me that at my current creatinine levels, I had lost at least 50% of my kidney function.
I had an open kidney biopsy in January of 1987, one month before my wedding to Kristi. The biopsy showed that I had focal segmental glomerular sclerosis (FSGS). Fortunately, I had the slowly-advancing type of this disease. My doctors tried what treatments were available at that time; I was put on a low protein diet, and we tried high-dose bursts of steroids which made me sick. In hopes that improving urine flow would also improve kidney function, doctors also tried placing a stent in my ureter. That wasn’t much fun, and we didn’t have any luck there either.
My creatine levels slowly rose, trending upward in 1996. Again, we tried a burst of steroids. They helped this time, though they also made me sick and fat. In mid 2001, the trend got steeper, and my kidney function was only 20%. Eleven of my blood chemistries were out of range. I was spilling high amounts of protein into my urine everyday.
Despite the peaks in my creatinine levels, I didn’t feel sick. My kidney doctor worked miracles to keep me going. I worked full time and, as an avid cyclist, I averaged around 3,000 miles on my bicycle every year. I rode in the Ride the Rockies bicycle tour and the Triple Bypass ride three times, even with my reduced kidney function.
Towards the end of my kidney failure, I began to notice that I was tired in the evenings after work, often falling asleep on the couch. This was unusual for me, but I knew I was truly sick when I rode in the Elephant Rock Ride in 2005 and couldn’t keep my normal pace. Though I pushed as hard as I could, I just couldn’t keep up. I felt so sick that I cut my ride short.
My doctors told me all along that I would eventually need a transplant, which was hard to believe because I felt well until the end. As my function became more critical, we started to look for living donors. Because the average waiting time to receive a cadaveric kidney transplant is 3 ½ years, finding a living donor was our best option. We sent letters to my extended family hoping to find a match. We also made a plea in our Christmas card.
Both family members and friends kindly consented to be tested for a match, but kidney size and medical issues prevented them from donating. My transplant surgeon wanted the donor to be my size so that the kidney size and function matched closely. Living donors have to be especially healthy so that they aren’t harmed by donating.
I started asking patients who were my size if they would consider being a donor. My friend and patient, Guy also consented to be tested. I thought he would be perfect because he is almost exactly my size and is an ultra-marathon runner. He, too, was unable to donate, but he asked to post information looking for potential donors on an ultra runner website. Kristi and I were certainly happy with the idea. By this point, we were desperate.
That’s how I found my hero, Kevin. Kevin, who lives in Virginia and who is also an ultra runner, stumbled upon Guy’s message soon after it was posted and responded. He had recently read an article about kidney donation in one of his wife’s medical journals. He was already interested in donating a kidney, but he didn’t know where to start. Guy put me in touch with Kevin, and we corresponded first by email and then by phone. After learning more about me and my medical situation, Kevin consented to be my donor. My family and I were thrilled.
Kevin began the process of becoming my living donor by contacting the transplant center directly. Like all potential living donors, he was given every chance to reevaluate his decision, but Kevin remained committed. Because we hadn’t known Kevin previously and because it is illegal to sell organs in the United States, we had to convince our transplant center that Kevin’s donation would be altruistic. The center finally consented, and Kevin travelled over two hours from his home to have his donor workup done at the nearest transplant center. He was a match, and our surgery was finally scheduled for July 6, 2005.
We first met Kevin and his wife, Ann face-to-face two days before the surgery when my entire family picked them up at the airport. Kevin and I had our last check up on July 5th, and I was instructed to call the hospital early the next morning to receive our finalized surgery time.
When I called, the nurse told me that our surgery had been cancelled. We panicked because we did not know what it meant. It turned out that someone had died on the highway the night before and that this kind woman had donated her organs and tissues. The surgeons were busy ensuring that other lives would be saved with her gift. We would have to wait until the following day.
On July 7th, we reported to the hospital and said extremely emotional goodbyes to our families. Kevin went in first so that they could time the removal of his kidney with my preparation to receive it. Our surgeries went well, and after the first day of recovery, they put Kevin in my room.
Kevin got to leave the hospital after four days, but I developed a complication and needed a second surgery to fix it. I returned home a few days later and began working full time after only 2 ½ weeks. I’m grateful for the skilled and dedicated professionals that made this possible.
Kidney failure is not only difficult for the patient, but also for the patient’s family. In fact, I think my disease was harder on Kristi and our three children than it was on me. Only after reading my children’s essays did I truly appreciated the fear and trepidation that they had experienced during my illness. I am so blessed to have such a close family, and I am grateful to Kevin for allowing me to regain my health.
I visited Kevin and Ann a few months after the transplant. Kevin was running in his first ultra run since our surgery—a fifty miler—which he finished in a personal record time. We are both still healthy and active now nearly four years after the transplant. I’m back on my bicycle, and Kevin and I will participate in a week-long cycling event together this summer.
Kevin is an amazing man. He is my hero, my angel. I will be forever grateful for his extraordinary gift. My transplant not only gave me a new lease on life, but also a great friend.
Bryan - Kidney RECIPIENT
I owe my kidney, my health, and my life to a man I had previously never met. My health problems began when I was just 10 years old, after tests following a summer’s long illness revealed that I had only one, very enlarged kidney.
“Becoming an organ donor was the ‘rightest’ thing I’ve ever done,” Coleen, a 53-year-old psychotherapist, said. “We all need to protect and fight for each other. If we don’t, there will be no one left to fight for us when it’s our turn to be in need.”
Coleen and Dirk, 52, were always pretty close. As the only girl among five brothers, Coleen was all tomboy and loved running around the family farm with her brothers. But, as is often the case, life took each of them to different parts of the country. Coleen moved to Seattle. Dirk found a home in Wyoming.
Then, several years ago, Dirk developed a rare autoimmune disease and his health slowly deteriorated. He could no longer travel and had to quit his job at an electrical repair company. Eventually, he was told he would need a liver transplant. Coleen volunteered to be tested. She was a match.
For Dirk, the match was good news, but it wasn’t something he took lightly.
“I was asking her to risk her life in a major operation that may or may not save mine,” Dirk said. As for Coleen, she had reservations of her own. She wasn’t scared of dying so much as she feared living in poor health. Before going through with the transplant she had to come to grips with the risks inherent in surgery, and found a way to be at peace with the possibility that it may not help her brother.
In July 2007 Coleen gave Dirk a portion of her liver. The surgery went smoothly, and within a year, her liver regenerated. She then moved to Denver, mostly to be closer to Dirk, who lives with his wife on the 40 acres they own in southeast Wyoming.
Dirk now works as a trapper in the winter, something he was never able to do before the operation. His health has improved significantly since the transplant, but he will continue to face challenges from other issues. For him, the transplant gave him a renewed appreciation.
“I tell my wife each day how I love her and give her a kiss before calling it a day, I realize how quickly life can go from good to bad to death.” Dirk said.
For Coleen, the transplant helped her grow in a variety of ways, ways she never expected. It not only created a new career niche for her as a psychotherapist, it gave her a more meaningful relationship with brother.
“I’ve gotten to know Dirk as the adult he is, instead of the little brother I grew up with. I’ve come to admire him, and I’ve learned a lot about living by watching him.”
Work eventually took Coleen to New England, where she now specializes in grief & loss issues, and supports organ donors, recipients and their families through the transplant experience.
“The transplant process can create a rollercoaster of emotions,” Coleen said, “and when family dynamics are added into the mix, it can get complicated. In many cases, families need support in order to cope. Families members need know they’re not alone, they need permission to be real about what’s going on, and they need opportunities to heal.”
In her case, she and her brother had a solid relationship, but had not always communicated or seen each other often. After the transplant, Coleen expected that relationship to evolve. And it did, at least at first. But eventually, it returned to what it was before. Coleen had to let go of the notion the transplant would transform the relationship.
“As a donor, at some point you have to pull back and let others get their lives back. You have to pull back to the point that doing the right thing was enough.”
Coleen feels that being an organ donor for her brother was a temporary sacrifice that carried with it the blessing of a lifetime.
“I now know what it is like to be really tested,” she said, “and I’m proud of my choices and my courage. I consider my scar my Badge of Honor.”
Coleen's story was written by volunteer Gabrielle Johnston.
Coleen - Liver Donor
People consider Chris and Stephanie Norton a match made in heaven.
Stephanie knew Chris her whole life. He grew up in the same neighborhood and was a friend of her brother’s.
They attended the same schools, knew all of the same people, but Chris was a bit more wild—and Stephanie a bit more reserved—so their friendship never evolved into anything more.
Until almost two decades later, that is. Chris had settled down a bit, and when he and Stephanie reconnected, friendship soon became romance. In 2004, they were married.
“God brought him to me,” Stephanie, 44, said. “He makes me complete.”
Two years after they were married, Stephanie, who has diabetes, learned she needed a kidney transplant. Chris, 43, insisted he be tested for compatibility.
He was a match.
“The Lord knew what he was doing. It’s just all connected. It’s amazing,” Stephanie said.
When she has a quiet moment to reflect on the fortune that has come her way, Chris always gets top billing. But Stephanie said she has been blessed many times, in often unusual ways.
“We’re very lucky people,” Stephanie said.
When she was 27, she was bitten by a spider. The bite didn’t heal, so she went to the doctor. It was then that she learned that she was diabetic. Without the spider bite, Stephanie reasons, she wouldn’t have learned about her diagnosis and gotten the treatment she needed. Same goes for the mild stroke she had in 2006, when doctors discovered her kidneys were failing.
For most of her life, Stephanie had few medical problems, and when she was diagnosed with kidney failure, she hardly let that slow her down. A full-time special education teacher, Stephanie woke up each morning, worked, then ended the day with four hours of dialysis.
Eventually, she was able to use a different type of dialysis that allowed her to receive her treatments at home, but it’s meant few trips anywhere without all of the required machinery and medication, and it’s put a crimp in Chris and Stephanie’s previously active lives.
They don’t travel by plane anymore—it’s just too difficult to lug all of the dialysis equipment along.
“It’s just real tedious,” Stephanie said.
The couple has become mini-experts in medical talk. Chris, a road construction foreman, can rattle off complicated medical terms like a grocery list. It’s hard to watch his wife suffer so many medical complications—several years ago, the toes on her left foot were amputated, and this year, the toes on her right foot were removed. But Chris said she and Stephanie work together to overcome the obstacles.
“It’s the way you interpret life—that’s what you get out of it,” Chris said, adding that Stephanie’s incredible optimism has been an inspiration.
“She’s a beautiful woman. She’s caring. She has a beautiful heart. She’s exceptional.”
But he is looking forward to Stephanie being free from the restrictions of dialysis.
“Hopefully, we can live a more normal life,” Chris said. He said he never questioned whether he would donate a kidney, and isn’t too nervous about the procedure. He joked that he plans on getting a tattoo of kidney so he can feel as if he never lost one. To help get in shape for the procedure, he joined Team Transplant for the 2009 Subaru Elephant Rock Ride in Castle Rock, Colorado and cycled 25 miles to raise awareness about organ and tissue donation.
Stephanie vacillates a bit more about the transplant. Most of the time, she’s eager to get back to the place where she can live a more normal life, but sometimes, she gets scared about Chris’ recovery. And on the days when she worries, or just wants to give up, it’s Chris who picks her up and helps her keep going.
“Chris is kind of my rock,” Stephanie said. “I’m the lucky one.”
The transplant is scheduled for summer 2009, and Chris and Stephanie know just what they’re going to do once they’ve recovered:
They’re going to get on a plane.
Chris and Stephanie - Kidney Donor and RECIPIENT
All Krysta ever wanted was the freedom to run.
She and her twin sister, Kara, were born six weeks premature, and even then, I knew Krysta was a fighter. But I also knew she had quite a battle to face.
She was born with cystic fibrosis (CF), a debilitating and life threatening disease that affects the lungs and digestive system.
Krysta wasn’t the first of her siblings to receive the diagnosis. Her older sister, Kayla, was also born with CF. After I had Kayla, I met with genetic counselors. I knew that there was a 25 percent chance that any other children I had could be born with the illness. But I was hopeful. And even though Krysta was born with the illness, she taught us all how to keep hope alive.
The doctors said the most important thing we could do was to treat Kayla and Krysta like typical children; administer the treatment and medications they needed, but never isolate them from the things they loved. So we jumped right in, and the girls spent their time playing softball, cheerleading and participating in 4-H. It kept us focused on positive activities, and it taught the girls that they could do--and could be—anything they wanted. Krysta didn’t understand the word, “no,” and she never let her illness get in her way.
As the years passed, Kayla and Krysta were typical girls, except for their ongoing hospital treatments. They called them “tune-ups” and it put them in the hospital regularly, for up to two weeks, for days filled with several nebulizer and chest percussion treatments.
After each hospitalization, Kayla seemed to grow stronger. Krysta didn’t. Her small body just couldn’t catch up. But she kept fighting. Most kids would love to miss a little school, but each time Krysta was hospitalized, she was bound and determined to fight that much harder for good grades. We were amazed how such a small package could deliver such a big punch.
Krysta wasn’t able to be part of the typical school social circle because of her constant treatments, but that never kept her from making friends. If she was going to spend so much time in treatment, she decided she could make friends there. And she did.
Cynthia was a few years younger than Krysta and had also been diagnosed with cystic fibrosis. She and Krysta developed an incredible bond. In October 2000, Cynthia was placed in the intensive care unit. One month later, Krysta was rushed to the hospital. She, too, was placed in ICU. So she and Cynthia were together again, struggling for life.
Cynthia lost her battle, and it crushed Krysta. In her 14 years of life, she had already faced so many challenges, and now she had to cope with a tremendous loss.
Then there was more bad news.
Not long after Cynthia died, we were told that Krysta would not live without a double lung transplant. We knew that the lack of donors meant that Krysta might not survive the wait. But the hope that had carried us in the years before continued. After years of surgeries, treatments, medications, and being on oxygen, we knew Krysta’s fight was not over. Not yet.
In April 2001, Krysta was put on the donor list, and eight months later, she received her transplant. It was Krysta’s turn to shine.
The new lungs worked great and Krysta was breathing without oxygen. No more tanks, nothing weighing her down. On her 16th birthday, I asked Krysta was she wanted to do.
She wanted to run.
And so she did. In a park, on a beautiful day, hand in hand with her friends. And the smile she had on her face warms my heart to this day.
But her joy was once again met with challenge when we discovered that her body was rejecting her transplant. It was as if she traded one disease for another. The oxygen tank was back. And so was Krysta’s fighting spirit.
When she first received her transplant, she decided she wanted to play soccer, and she wasn’t about to give up that dream. She signed up for the team at her high school. The Colorado High School Activities Association tried to ban her from play because she was on oxygen, but they had clearly never met Krysta.
She won the fight. She was allowed to play a couple minutes each game as long as her oxygen tank was padded. She and her friends made a padded backpack, she got to play, and she finally felt like she was a typical kid doing typical things. As she entered her senior year of high school, Krysta was so proud she had been able to overcome so many things.
But Krysta’s body was tired and weak. During Christmas break, she was rushed to the hospital. Doctors told us Krysta could no longer fight her rejection. They must not have known Krysta either. When we told her what the doctors said, she told us that no one would tell her when to die. She didn’t have days, she told us; she had at least a month left.
One month to the day later, on January 31, 2004, Krysta passed away.
But even in death, she kept on giving. Her organs were too damaged for donation, but her skin tissue and corneas went to heal people with burns and blindness. In life as in death, Krysta gave it her all.
We would have loved to see Krysta become a nurse as she had hoped. We would have loved for her to see her sister, Kayla, snowboard down the mountains, or let Kayla—a stylist—give her a brand new look. We would have loved for Krysta to attend her sister Kara’s graduation at Colorado State University, or encourage Kara as she pursues her Master’s of Social Work in Massachusetts. That didn’t happen, but because of organ donation, we got two wonderful, precious years with our daughter, years in which we learned the value of tenacity and hope and perseverance.
Because of organ donation, we got to see our daughter run.
Krysta - Double Lung RECIPIENT
Somewhere out there, there’s a family who saved my life. And I never really got to thank them.
I was 52 when I had my first heart bypass surgery. We all hoped that would be enough, but I’d had more than one heart attack, and it had taken its toll on my body. Within a few years, I was getting sicker. The doctors said I wouldn’t live without a heart transplant. My arteries were closing again, and my heart muscle was so damaged from the earlier heart attacks that it could no longer pump enough blood.
That’s when the wait began.
My wife, Linda and I, had to move from Mesquite, Nevada to Tucson, so I could be near the University of Arizona Medical Center if a heart arrived. I didn’t know how long the wait would be, but as days turned into weeks and then into months, I began to lose hope.
As I sat in my apartment in Tucson, I felt like giving up. It had now been more than a year since I was put on the heart transplant list, more than a year since I was forced to move away from the home I loved. I was tired of waiting. I wanted to go home.
Physically, I felt pretty good, but I was out of patience. I just wanted to accept the time I had left to live and make the most of it. I’d had a full life - two daughters, a wife I adored. Lots and lots of golfing.
Linda tried to encourage me, tried to remind me of all the great things to come. My first grandchild was on the way, and my daughters were settling into life as adults. I knew I had so much to live for, but I felt as if I was being held prisoner by the pager I had to wear each and every moment of the day. It was my connection to life, but it never made a sound.
It never made a sound, that is, until one year and three months after the day I first received it. It was a simple day, really. Linda and I were getting ready for bed. And when that beeper finally went off, I was more scared than I had ever been before.
Within 24 hours, I went from a 57-year-old with congestive heart failure to a man with a perfectly healthy heart. As I lay in the hospital bed, I knew my recovery was hardly over, but I smiled because I had a life ahead of me. I no longer had to worry about dying.
I don’t know anything about my donor, but I wish I did. I often joke that I must have gotten a girl’s heart – it’s the only thing that explains my new love for shoe shopping and yogurt. I wish I could say thank you to the family who gave me life, to the family who gave me a chance to hit another hole in one, to see my first grandchild – and then a second -- to watch my daughters grow. I wrote the donor family a letter, and I hope they received it. But since I can’t look them in the eye and show my gratitude, the best way for me to say thanks is to appreciate life each and every day. So I do.
For me, appreciating life doesn’t mean crossing tours of Spain off my “to do” list. It’s more simple than that. I want to golf in every state in the country – 30 down, 20 to go. All that practice must be paying off, because in 2006, I won the gold medal in golf at the Transplant Games in Kentucky.
Linda and I call ourselves the “Happy Wanderers,” since we spend so much time exploring in our RV. I volunteer more these days – it’s my quiet attempt to give back. And I spend as much time with my family as I possibly can.
I don’t need much more than that, really. I want to wake up each and every day and be grateful for getting one more chance. I want to appreciate the feeling of feeling good. I want to feel it in my heart.
For me, that’s enough.
Ike - Heart RECIPIENT
To Marc, life is about analyzing the facts and making a decision accordingly. Nothing more. “But, there are times one has to say, ‘What the heck? Go for it,’”
Marc is a pragmatic man. A former venture capitalist and the current executive vice president of the Steadman Hawkins Research Foundation, Marc didn’t get where he is today by letting emotion rule the day.
So when his older brother needed a kidney, Marc gave him one, and he did it without a ton of emotion or debate.
“If you see someone standing in front of a dangerous situation, you do something to stop impending disaster,” Marc said matter-of-factly. “It’s what we’re supposed to do.”
Marc’s older brother, Alexander, was diagnosed with kidney disease before he was old enough to walk. Back then, the doctors told Alexander’s parents he probably wouldn’t live to enter kindergarten. But he did. Then the doctors said he wouldn’t live to see his 10th birthday. But he did.
The ominous predictions continued, but his will to live always won out. As medications advanced, Alexander was able to control his disease without dialysis. As children, Alexander’s three brothers probably didn’t know that Alexander’s health—even his ability to live one year longer—was so precarious. “I don’t think that we were ever fully aware of that. We just knew our brother was sick,” Marc recalled.
When Marc was about 12, he remembers telling his brother he would give him a kidney if he ever needed one. Thirty-two years later, in August 1996, Alexander took him up on that offer.
By now Alexander’s kidneys had deteriorated to the point where it was clear he might not survive without a new kidney. Marc immediately asked to be tested to see if he would be a match.
“It was just a no-brainer,” Marc said. Even back then, he didn’t really see it as that big of a deal.
“This is just one of the things I’ve got going on in the next couple of weeks,” Marc recalled thinking. “I’ve got meetings, a new business venture, a new home and other things I’m doing as well.”
Marc was a match—which he always sensed he would be—and the surgery was scheduled. Before the operation, Marc was in great physical health, and his brother obviously wasn’t. For a short time, the surgery flip-flopped that. Now Marc was recovering from major surgery, but Alexander was immediately feeling better because he had a new kidney that was doing its job. But that didn’t last.
About six months after the surgery, Alexander developed complications with one of his medications, and began to have some rejection reactions. The doctors were advising that he get rid of the donated kidney and go on dialysis. He called Marc and asked for his opinion. It was his kidney, after all.
“It’s yours now. You can what you want with it,” Marc recalled telling his brother. Together they assessed different treatment options that could be done while preserving the donated kidney. Ultimately, Alexander’s condition improved. That was nearly 13 years ago. Today, Alexander is retired and living with his wife in Florida.
Marc - kidney Donor
Chelsey Larson, American Transplant Foundation TLC Member and Mentor, chose to donate one of her kidneys to acquaintance Ellen Rorman, an action that gave Ellen a future and changed Larson’s own life forever.
Chelsey barely knew Ellen, but that didn’t stop her from donating a kidney. “If people don’t know anybody that went through a transplant, it’s a very scary thing,” Larson said. “I feel like my purpose now is to show others that you can do this.”
The vast majority of those who have donated, including Chelsey, have reported quality of life that is higher than someone who is comparable to them in age and sex but have not donated, Spong said. One study Spong cited shows that 99 percent of donors would donate again.
Today, Larson is living in Colorado and volunteering with the American Transplant Foundation. She’s working to help raise money for donors and recipients who need financial assistance while recovering from surgery and she wants to increase awareness about donating.
“If people don’t know anybody that went through a transplant, it’s a very scary thing,” Larson said. “I feel like my purpose now is to show others that you can do this and you can save a life and still live a perfectly normal and healthy life.”
“Chelsey’s selfless decision to do this for me has given me a chance,” Rorman said. The transplant gave Rorman freedom to go on weeklong vacations, enjoy a weekend without worrying about dialysis, and eat her favorite food, buffalo wings, once more.
“It really has given me a future; it’s given me the opportunity to live the life I’ve wanted to live,” she said.
To read the full article on University of Minnesota Health, please click here.