Just two days before he got sick, Adrian Peterson was practicing martial arts – a typical activity for the active 17-year-old who regularly biked, climbed and hiked. But that all changed in October 2018, when Adrian woke up feeling congested and nauseous.
“That was the only forewarning I got for what was to come,” Adrian said.
At first, doctors in Fairbanks diagnosed Adrian with the flu. However, about two weeks later, doctors at an urgent care center discovered Adrian had something more. He was sent to an emergency room with acute heart failure.
“My next memory was waking up while being toted over to an ambulance. I was told that we had to fly to Seattle Children’s,” Adrian said. “I fell asleep on the flight, and the next thing I knew I was in Seattle with an IV line in my neck.”
Adrian was diagnosed with dilated cardiomyopathy, which is when the heart is severely weakened and it becomes enlarged.
“It was completely unexpected,” Adrian said. “All I knew was that I wanted to be healthy again.”
Hope after heart failure
After Adrian arrived at Seattle Children’s with a failing heart, the Heart Center team worked to stabilize him.
“When we first met Adrian, 21% of the total amount of blood in his left ventricle was being pumped out to his body with each heartbeat,” said Stephanie Church, a heart failure and cardiac transplant nurse coordinator on Adrian’s care team. “In a healthy teen, this number should ideally be closer to 55% to 65%. When the heart is unable to pump efficiently, the rest of the body’s organs suffer from decreased blood flow and lack of oxygen supply.”
Adrian had previously received treatment, partly at Seattle Children’s, for a metabolic bone disease called rickets. While Adrian was no stranger to the medical world, his diagnosis was a shock to his family.
“As a parent, I wanted to know why this happened,” said Earl Peterson, Adrian’s father. “Adrian was healthy and active for so many years, but at the same time his heart was being damaged. It was frustrating that there were no symptoms to let us know something was wrong.”
For about two weeks, Adrian’s care team tried to strengthen his heart with medications. However, it was still not functioning well, and it became clear he needed to be placed on the heart transplant waiting list.
“Adrian had a really severe form of heart failure,” said Dr. Michael McMullan, surgical director of cardiac transplant and director of mechanical cardiac support and Extracorporeal Life Support Program services at Seattle Children’s. “He was not going to survive without a new heart. We needed to find a way to support him while we waited for a transplant.”
For Adrian, the solution for bridging him to transplant was a ventricular assist device (VAD), a mechanical pump that connects to the heart during open-heart surgery. Adrian had surgery to implant a left ventricular assist device (LVAD), which helps the heart pump oxygen-rich blood to the rest of the body.
“Similar to a jet ski, which draws in water on one end and blows it out the other, the LVAD pulls the blood out of the heart and into a pump that sends it up to the aorta and out to the rest of the body,” McMullan said. “After we put this device in, Adrian was temporarily out of heart failure because this device replaced the failing part of the heart.”
When they are an option, VADs are an effective device because they allow the patient to be active. Remaining active before transplant also helps to prepare patients for surgery when the day comes. According to McMullan, studies show that if a child is bridged to transplant with a VAD, allowing them to physically rehabilitate, their likelihood of success after transplant improves.
“The great thing about these pumps is that patients can go out and live their lives with them,” McMullan said. “They can go mountain climbing, to a sports game, or whatever they want. We encourage physical activity because it increases their strength, making them better transplant candidates.”
After Adrian received the LVAD, he took walking “field trips” around the hospital and underwent physical rehabilitation. The Heart Center staff taught Adrian’s family how to care for the LVAD and provided support during the waiting period.
“I can’t imagine getting any better care than what Adrian had at Seattle Children’s,” Peterson said. “Each team was always extremely helpful and informative. We knew exactly what was going on from an hour-to-hour, day-to-day basis.”
On Dec. 24, about six weeks after getting the LVAD, Adrian was able to move out of the hospital to the Ronald McDonald House. While he waited for a new heart, Adrian prioritized preparing for his transplant. Determined to get stronger, he spent the next month walking and riding his bike on a nearby trail, sometimes for as long as two hours.
“From day one, Adrian was always looking for new ways to stay active to optimize his health,” Church said. “If he wasn’t out biking or walking, you could find him hitting golf balls with his grandpa or attending a local Boy Scout Troop meeting.”
Adrian was also able to go places like The Museum of Flight and a University of Washington basketball game.
“It was great because Adrian could see that life was still going on and he could be a part of it, instead of feeling stuck,” Peterson said.
A new heart
In late January 2019, a suitable donor heart became available. Two days later, Adrian received his new heart.
According to Donate Life America, 4,000 people in the U.S. are currently on the national heart transplant waiting list. As a parent, Peterson said it was challenging to wait. He hopes people realize the importance of becoming a donor.
“Possibly needing replacement parts is something you don’t think about,” Peterson said. “We’re very thankful to the donor who gave Adrian the opportunity to get a new heart. Some people wait forever.”
After his transplant, Adrian’s goal was to be able to perform daily activities. The first day with his new heart, he wanted to get out of bed and into a chair. The day after, he hoped to walk again.
“I achieved both of those when I wanted to,” Adrian said. “From that point forward, my physical recovery became more expanded as the days went on.”
Adrian moved out of the hospital within 11 days. To ensure there were no complications, he lived near the hospital at the Ronald McDonald House for the next three months.
During his time in Seattle, Adrian was able to see his siblings, stay in touch with friends and keep up with school and extracurricular activities. After competing on the debate team remotely, his team won and will participate in a national finals competition in Washington, D.C.
Peterson said they are thankful for the services available at the hospital, such as tutoring.
“As parents with jobs and three other kids at home, resources like School Services, Guest Services and Child Life made being in a difficult situation very easy to deal with,” Peterson said.
Ready to graduate
As Adrian continues to recover from transplant, he strives to do something active every day. Recently, he hiked up hilly trails in central Washington with his family.
Earlier this month, Adrian moved back home to Fairbanks, returning to his family, friends, school and most importantly, his dogs.
“It’s fantastic that Adrian is healthy and able to return to most of his activities. That’s what we’re looking for – to get every kid to that point,” McMullan said. “It means a lot to me that we can take care of kids not only in Washington, but in Alaska, Montana, Oregon, Idaho and even as far away as Hawaii. Seattle Children’s is unique in that we can extend our reach and ability to provide cardiology care beyond our immediate community.”
Adrian will continue to be followed by his primary heart transplant team at Seattle Children’s through young adulthood. In addition, Adrian will receive invaluable local cardiology support from Dr. James Christiansen at Seattle Children’s Pediatric Cardiology of Alaska.
In May, Adrian will graduate on time. He will begin his first year of college at the University of Alaska Fairbanks this fall.
Eventually, he hopes to transfer to an out-of-state university to study finance and film. A film enthusiast who has created his own documentaries about Star Trek and David Bowie, Adrian is inspired by science fiction filmmakers who express philosophical messages through movies.
It’s clear that Adrian hasn’t let health challenges stop him from getting closer to fulfilling his dreams.
“Seeing how far Adrian has come is truly awe-inspiring,” Church said. “His graduation will be a special event not only for him and his family, but for his ‘transplant family’ at Seattle Children’s as well. This amazing young man took the most unfortunate of situations and completely turned the tables on it. To be quite honest, he crushed it.”
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