Stories of hope
During the transplant process, patients face many options and can benefit from support and insight from those who have traveled this path before them. Read these inspiring stories from the transplant community.
Ben, heart recipient
In December 2011, 4-week-old Benjamin Hillenburg developed what his parents, Joseph and Stacy, thought was the flu. Their pediatrician was concerned about some symptoms that didn’t quite fit the flu and had Benjamin admitted to a local hospital for tests. An echocardiogram revealed that his heart was dangerously large, and within hours he was airlifted to Children’s Memorial Hospital, now Ann & Robert H. Lurie Children’s Hospital of Chicago.
Diagnosed with idiopathic dilated cardiomyopathy, the most common type of heart muscle disease in children, Benjamin was listed for transplant. To his family’s surprise, Benjamin received his new heart just 19 days later on January 5, 2012. After an “extraordinarily complication-free” recovery, Benjamin left the hospital three weeks later.
Photo, left: Joseph Hillenburg
Featured photo on home page: Noelle Isaak – 2Sisters Photography
All photos used with permission.
Betsy, living kidney donor
Betsy Walsh, J.D., M.P.H., 2015-16 president of the OPTN/UNOS Board of Directors, has a personal connection to donation. In 1995, she donated a kidney to her older sister. “I’ve been so fortunate to be able to give to my sister, and I’m so fortunate that I was allowed to question if it was the right choice for me.”
Destiny, liver recipient
Looking at Destiny today, it is hard to believe that as an infant she was diagnosed with severe liver disease and only given six months to live. At the tender age of one, Destiny only weighed 13 pounds and was desperately ill. Her only hope for survival was a liver transplant. Today, thanks to the generous gift of her donor, Destiny is a normal and happy teenager, who will soon be starting high school!
Skylar, heart recipient
During a routine ultrasound in 2007, Rikki Myers, 18 weeks pregrant, received devastating news. The ultrasound revealed that their baby had a serious heart defect—hypoplastic left heart syndrome. Almost immediately after Skylar was born, his heart began to fail, so an emergency open-heart operation was performed. After only three months, the Meyers received more crushing news. Skylar’s heart was again failing and, without a heart transplant, Skylar would probably live only about 10 more days. Miraculously, a heart was found on day six and Skylar had a lifesaving transplant. Today, he is in school, healthy and active—and to look at him, no one would ever imagine the tough times he’s been through.
Martin, double lung recipient
Martin Martinez Rosa became seriously ill almost overnight—but his diagnosis took a few months. In the meantime, suffering with a recurring fever and frequent vomiting, he went back and forth to doctors at the community clinic. One doctor thought he might have—and was treating him for—tuberculosis. What Martin actually had was silicosis—a respiratory disease caused by inhaling silica dust—and the only treatment was a double-lung transplant. He waited at home, using an oxygen tank to breathe, and struggled with bouts of pneumonia. After a few months, two lungs were found for Martin, and his life began getting back to normal. He is looking forward to resuming an active life and playing soccer with his two young sons. “They are so happy to have their dad back,” he said.
Jodi, non-directed kidney donor
Jodi donated her kidney in 2013 as part of a kidney paired exchange at Piedmont Atlanta Hospital. “Donating has been one of the most impactful experiences of my life, and I’ve had the good fortune not just to meet my recipient, Julie, and her husband, Ray, but to get to know them well,” said Jodi, who is a wellness coach. She first learned about living organ donation from one of her patients who needed to lose weight so that he could donate a kidney to his sister. Jodi was inspired by her patient’s selfless gift. “Once I learned I may be able to help someone else have the chance to spend more time with his or her loved ones, the question became: ‘Why wouldn’t I want to be part of that?’”
Whittney, kidney recipient
Whittney packs a lot of personality into her small frame. A very “girly” girl, it would be impossible to look at her and know the physical challenges she has experienced in her young life. At age 4, Whittney was diagnosed with an aggressive E. coli bacteria infection. Yoli Edwards, Whittney’s mother, said that her daughter was given only a seven percent chance of recovery, and that she likely would not survive beyond 24 hours. Whittney did recover. Unfortunately, the illness had ravaged her kidney’s causing them to fail. Whittney spent more than half her nine years of life at Arkansas Children’s Hospital receiving dialysis treatments three times each week. All of that changed when she received a kidney transplant. Whittney has named her kidney “Princess Chocolate Strawberry” and says the kidney donation means the world to her because “I can just be a normal kid now.”
Temperance, liver recipient
Little 2-year-old Temperance Geneman had more trouble than most toddlers learning to walk because her belly was so swollen. She had biliary atresia and was on the liver transplant waiting list for almost two years. After Temperance’s successful transplant, her mom, Krista, said Temperance began eating more, trying new foods and sleeping better. At the same time that she was experiencing joy and relief at her daughter’s life-saving operation, Krista remembers thinking how hard it was to know “that someone had to go through what I had been dreading for two years.”
Nita, kidney recipient
Yoga has been shown to reduce stress, while improving flexibility, muscle stamina and a sense of well-being. It’s also benefitted kidney recipient, Nita Patel. Since her transplant, Nita started practicing yoga, and even opened her own yoga studio. She also enjoys travelling, scuba diving and mountain climbing.
Brooke, liver recipient
At only 1 year old, Brooke Wright had a life-saving liver transplant that, without a donor, wouldn’t have been possible. At last report, Brooke’s mother reports that Brooke attends first grade and takes horseback riding lessons. “We’re just so thrilled,” Brooke’s mother said, “that we are able to see her grow up.”
Brayden, liver recipient
Brayden Welhoefer was diagnosed with biliary atresia when he was only 3 months old. Eight months later he had his first liver transplant, but there were complications. Ten days later he had his second transplant, and he has been doing well ever since. As his mother said, “Brayden was so sick as a baby, but now he is full of energy, joy—and even a little bit of mischief.”
Zion and Zhania, heart recipients
Siblings Zion and Zhania Coleman were born with restrictive cardiomyopathy, which leads to heart failure, and also with sickle-cell anemia, a complicating factor. The wait for new hearts, their mother Demetria said, was “long and scary.” They both received heart transplants within a few months of each other—which saved their lives—and also made history. Zion’s operation marked the first time that the hospital’s cardiac surgeons has performed a heart transplant on a child with sickle cell. These days, Zion is playing baseball and Zhania is taking dance and swim lessons, and their mom says that, blessed with two gifts of life, they are “loving and cherishing each moment.”
Chris, living donor
Dan Wenkman was born with undersized kidneys, which didn’t pose a problem for decades. Then his kidneys began to fail, and he was spending 12 hours a week on dialysis. His stepson Chris Winchell, 34, proved a suitable match, and Dan had a life-saving living-donor kidney transplant. About a month after the operation, though, Dan became fatally ill from infections. Attached to a ventilator in the hospital, he couldn’t talk but motioned to Chris and held up a laminated card that said “I love you” and, next, another that said “thank you.” After Dan’s death, Chris admits to being angry. “It didn’t make sense,” he said, “but it was great to see him so healthy even if it was for a few weeks. He was given a chance. I’d do it again.” Chris said he was sore for a while but was surprised at how quickly he was able to recover from donating a kidney. He’s back to flying full time with the Wisconsin Air National Guard.
Miller, double lung recipient
Before his double-lung transplant, Miller Brackett, who had cystic fibrosis, often had to stop singing during stage productions due to his cough and voice loss. Now, Miller recently moved from Chicago to New York to pursue his dreams as a performer. Looking at his resume, you’d have no trouble saying that this singer/dancer/actor is “living the dream.”
Bobby, heart recipient
Bobby Height, Sr. has always been active and athletic. He played basketball and baseball in school, and was drafted by the New York Yankees. When his career ended with a knee injury, Bobby taught physical education and coached high school basketball, baseball and football. But in 2003, he was diagnosed with cardiomyophathy. After years of treatment for acute asthma and sleep apnea, he learned that he had amyloidosis and needed a transplant. In 2007, Bobby received a lifesaving heart transplant. Free of both the asthma and sleep apnea, he’s now living a healthy life as a husband, father, grandfather, and organ donation advocate. “Someone said ‘yes’ to donating life so that I might have a second chance,” says Bobby.
Jill, liver recipient
By the tender age of 11 months, Jill Nolan had two liver transplants. Her body rejected the first shortly after the operation, but the second transplant was successful and provided the liver she still has today. A gymnast, softball player and three-time half marathoner, she’s in her final year at California State University–Fresno, where she’s studying to be an American Sign Language interpreter. She gratefully credits the courageous decision made by two donor families to “allow their loved ones to become donors,” which saved her life. “Life is good,” she says.
Jeanne Anne, heart recipient
Jeanne Anne Love was only 11 years old when she went into heart failure. As an infant, she’d been diagnosed with dilated cardiomyopathy, and her pediatric cardiologist thought the medications he prescribed would keep things under control until she “outgrew the condition.” That was the case until she was 7, when her condition worsened. At 11, the doctor told her parents that it was “time for a transplant” and, on New Year’s Eve 1994, Jeanne Anne got a new heart. “A new year, a new heart, a new life,” she remembers thinking. These days, a college graduate, she’s working at the hospital where she had her transplant—in cardiothoracic research—“where I belong,” she said.
Kathy, islet recipient
Kathy was living with diabetes for almost fifty years, and endured many health challenges – including severe insulin reactions that occurred while she was sleeping at night or even while driving her car. She had difficulty recognizing these reactions, as they would even occur after she had eaten. Her husband, Charles, has been at her side through it all, waking in the middle of the night to help her and to give her shots, and providing loving care and support. After receiving an islet cell transplant, Kathy no longer suffers from insulin reactions or needs medication. She has enjoyed being able to eat things that she hasn’t eaten since childhood, and also appreciates the freedom from stringent monitoring of her illness. Kathy and Charles now can focus on their construction and realty business, where they build and sell homes together, and enjoying the rewards of their life-long partnership.