Like many other children growing up, Luke Maeding played hide and seek with his siblings.
But one thing always got in the way: his oxygen tube.
“They would follow my oxygen tube cord, and they would always find me like that,” Luke says.
Born with a rare lung condition, Luke needed help to breathe and couldn’t do many of the activities other children could. At 9 years old, he received a lifesaving double-lung transplant.
After that surgery, Luke felt like he could do the things he wanted to do before. But soon came another medical setback: a rare digestive condition that made it painful for him to eat.
“My guts kept shutting down,” Luke says. “I was in so much severe pain.”
The condition eventually became so serious that Luke needed a feeding tube for sustenance. And ultimately, he needed another transplant.
Just over a decade after one lifesaving transplant, Luke got another when doctors performed a small bowel transplant on him in 2020. He became part of a small group of patients who have received lung and bowel transplants.
And today, Luke is once again back to doing what he wants to do.
“He really has had the miracle of transplant twice,” says his mother, Heather Maeding.
‘Really Kind of Devastating and Frustrating’
Luke was born at 26 weeks gestation and spent the first three months of his life in the neonatal intensive care unit (NICU) at a hospital in eastern Pennsylvania. He eventually went home as a foster child with Heather — a neonatal nurse — and her family, who later adopted him.
Because Luke’s lungs never fully developed and matured, he had chronic lung problems as a child. His family went to several different hospitals looking for an official diagnosis but never received one.
“His problem was the fact that he was, one, born prematurely,” says Geoffrey Kurland, MD, director, Pediatric Lung Transplant Program, UPMC Children’s Hospital of Pittsburgh. “He was born at about 26 weeks gestation. You’re supposed to have 38 to 40 weeks for a reason. We’re supposed to have that so the lungs will develop normally and grow normally, not to mention all the other organs.
“Being born at 26 weeks, as he was, his lungs were asked to do the work of regular lungs when they were not quite architecturally ready to do that. And as a result of that, the normal development and growth of the lung itself was probably altered by his prematurity.”
Luke also developed pneumonia at 6 months old, putting more strain on his lungs.
In addition to his lung disease, Luke experienced other health problems as a child. He fractured several vertebrae and developed nonfunctional adrenal glands and diabetes. Dr. Kurland says these likely were complications of the chronic use of steroids, which themselves were used in an attempt to improve Luke’s lung function.
“The first years of his life were really kind of devastating and frustrating,” Heather says. “We felt like we couldn’t find help for him, or no one was giving us anything hopeful to hang onto (about) how we could get Luke in a better position.”
In 2007, Heather attended a Childhood Interstitial Lung Disease Foundation conference in Ohio. Childhood interstitial lung disease (chILD) is a broad name for a group of rare lung diseases that affect babies, children, and teens.
At the conference, Heather met Dr. Kurland. Afterward, she decided to bring Luke to UPMC Children’s for care.
At first, doctors decided to hold off on giving Luke a transplant to see if his lungs would develop. But by 2010, when Luke was 9, he was in a wheelchair and needed breathing assistance from a bilevel positive airway pressure (BiPap) ventilator.
“I was having a hard time playing with my brothers and sisters,” Luke says. “Like, I couldn’t go outside much. It was getting hard to play video games. And it was hard to do anything else my whole life.”
In August 2010, Luke underwent a double lung transplant at UPMC Children’s.
“When I got the double lung transplant, I was so frightened,” he says. “It was my first transplant. It was so frightening that I just didn’t know I was going to be alive or going to be not making it at all, if I was going to come out OK.”
The transplant was complicated. Surgeons needed to bring Luke back to the operating table to remove a blood clot from his chest. He also had trouble breathing after his surgery because his left diaphragm was higher in his chest, impeding his left lung. His left diaphragm was higher because the left phrenic nerve, which stimulates the left diaphragm to contact, had been damaged during the transplant. This is not uncommon and occurs in 10 to 15% of lung recipients.
Luke’s surgical team did a procedure called a plication, moving the diaphragm lower in the chest to give his new lung room to work. He spent seven weeks in the hospital recovering after his procedure before returning home.
“He did pretty well,” Dr. Kurland says. “I mean, we were pretty lucky. He didn’t have much in the way of rejection. All patients with transplants have complications, and he is no exception.”
‘I Could Have Fun with Life’
After his transplant, Luke’s new lungs worked normally.
“I could breathe fine,” he says. “I could go outside again. I could be like a real kid. I could finally play video games, do exercise, go outside with my brothers and sisters. I could have fun with life again.”
In 2012, Luke was named Children’s Miracle Network Hospitals Pennsylvania Champion. He also attended a Washington D.C. event and met then-President Barack Obama.
“It was so cool,” Luke says. “I even got to hug him.”
As part of the Children’s Miracle Network recognition, Luke also went to Disney World and rode in a parade.
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‘He Wasn’t Living Life Anymore’
About a year after his lung transplant, Luke began having trouble with his digestive system. Occasionally, he wasn’t able to digest food and drink normally. He spent time on and off a feeding tube to get nourishment.
“It was very scary for us because we had already gone down the road of, ‘We don’t know what’s wrong with your lungs,'” Heather says.
Luke was diagnosed with chronic intestinal pseudo-obstruction (CIP), a rare condition that affects the function of the gastrointestinal (GI) tract. Symptoms are similar to that of an actual obstruction in the GI tract — like a tumor or scar tissue — but there’s no actual obstruction at all for CIP.
CIP can cause severe abdominal pain and swelling, constipation, nausea, and vomiting. Heather says Luke always wanted to eat, but he experienced severe pain.
“It was very hard,” Luke says. “I really wanted to eat, so I snuck down every night to get a piece of food because I couldn’t take it anymore. I tried to sneak food. My mom would catch me every time.”
The condition began to get worse and worse. By 2017, Luke couldn’t eat solid foods at all and needed to get food through total parenteral nutrition (TPN), a process that uses intravenous fluids and bypasses the GI tract.
“We began to see that just like with Luke’s lungs, he came to a point where he wasn’t living life anymore,” Heather says. “He could only lie around. He was on BiPap. He couldn’t even play video games with too much energy expenditure for him. He was literally just watching his siblings play and could not live life.”
Treatment with medication didn’t control Luke’s symptoms. He also underwent multiple procedures that looked for obstructions to solve his digestive issues, but nothing could make the symptoms go away. He also developed scar tissue around his intestines, further complicating his condition.
“He was a trooper,” says Jeffrey Rudolph, MD, director, Intestinal Care and Rehabilitation Center, and clinical director, Division of Pediatric Gastroenterology, Hepatology, and Nutrition, UPMC Children’s Hospital of Pittsburgh. “I always remember him as, despite his problems, he was always upbeat. He was always able to face the realities of his problems and put a positive spin on it.”
Luke was a potential candidate for a small bowel transplant, but his earlier lung transplant put him at greater risk for complications.
“It was really a pretty big decision because it’s not often you get one transplant and then need another one on top of it,” Dr. Rudolph says. “It’s considered a really high-risk procedure. We didn’t know what immunosuppression would do to his lung function or whether the intestinal transplant would work.”
Luke’s GI team and lung team worked together to determine whether another transplant would be a good idea.
Ultimately, Luke went on the transplant list in 2019 and got his small bowel transplant in May 2020. Because of COVID-19 precautions, Luke’s entire family couldn’t be with him, but his mother could.
“I was a little nervous and a little bit shaken,” Luke says. “But it was OK. I knew what I was going through. I had doctors there. You say, ‘You’ve gone through one tough thing before, but you have to go through another one now.'”
The surgery was a success. After his surgery, Luke was able to eat a turkey sandwich for lunch and pizza for dinner.
‘Go Down a Positive Path’
Just over two years after his second transplant, Luke is fully healthy again.
“It’s really it’s been quite dramatic how much better he’s doing, not just physically but psychologically,” says Dr. Kurland.
Dr. Kurland credits Luke’s entire care team, especially the transplant coordinators who made his two lifesaving donations possible. He also points to the support Luke got from his family, especially Heather.
“Without all of the advances we’ve made in medicine, but then just the opportunities that UPMC gave him to be alive, he would not be here today if it were not for UPMC,” Heather says. “I’m 100% sure of that.”
Today, Luke walks two miles daily. He also plays video games, which has been a passion of his since he was 4 years old and his dad taught him the game Paper Mario. Luke wants to be a video game designer one day but also has interests in early childhood education and medical assistance.
He has a service dog named Ray, and another passion of his is Miracle League baseball, which he plays in every year. His coach even gave him the nickname “Mr. McCutchen,” after former Pittsburgh Pirates star Andrew McCutchen.
“It’s baseball for people like who have troubles like me,” Luke says. “I’m always the Pirates, the Twins, or the Yankees or something like that, or the Phillies. It’s different teams every year. And I always hit the baseball over the fence.”
Throughout all of his struggles, Luke found a way to give back to others. One year, for his birthday, he held a drive for donated pajamas, blankets, and clothes for children’s hospital patients.
“I just thought that kids should have their own hospital pajamas instead of the gowns,” Luke says. “You don’t usually like gowns in children’s hospitals. So I decided to get some comfort in there.”
In 2019, while awaiting his small bowel transplant, Luke participated in Extra Life, a 24-hour video game marathon in which he raised money for UPMC Children’s.
Even after his surgery, Luke is showcasing the miracle of donation. He posts a picture of the day on social media to showcase some of the things he does now that he couldn’t do before.
“He loves to talk to others about everything he’s been through,” Heather says. “He loves to sing the praises of all of his doctors and everyone at Children’s. He has brought awareness to so many people who really had no idea what it was truly like to go through transplant.”
Luke has a message for people going through difficult times: “Be confident,” he says. “And (don’t) go down a negative path. Go down a positive path.”
From nutrition to illnesses, from athletics to school, children will face many challenges growing up. Parents often will make important health care decisions for them. We hope to help guide both of you in that journey. UPMC Children’s Hospital of Pittsburgh is a national leader in pediatric care, ranking consistently on U.S. News & World Report’s Best Children’s Hospitals Honor Roll. We provide expert treatment for pediatric diseases, along well-child visits, urgent care, and more. With locations across Pennsylvania, Maryland, and West Virginia, you can find world-class care close to home. We also work closely with UPMC Magee-Womens Hospital, a national leader in care for newborns and their mothers. Our goal is to provide the best care for your children, from birth to adulthood and beyond. Visit our website to find a doctor near you.