Fred Nelis is 61 years old, but when he competes in swim races this week, he’ll be swimming with the heart of a 32-year-old.
In his mind, he and the 32-year-old will together be stroking each stroke, breathing each breath and winning each race at the Transplant Games.
Nelis never met his spiritual swimming partner, and he knows very little about him.
Only that he was active. And healthy. And he died at age 32.
He also knows the gift of his heart saved his life—and his swimming career.
“This is the first time I’m going to race with the two of us,” Nelis said of the Transplant Games in Cleveland, Ohio, an Olympic-style competition for post-transplant patients. “I’ve trained and gotten stronger, but this is the first time I’m going to race with my donor and me.”
And Nelis is eternally grateful—for the heart, for the new sense of hope, for the new life.
An athlete’s heart
In 1994, at age 38, Nelis was diagnosed with idiopathic cardiomyopathy.
In layman’s terms: heart failure.
His life function spiraled downward. The former college football player and swimmer lost his strength, stamina, pain tolerance and began experiencing shortness of breath.
“I knew something was wrong, I knew something was seriously wrong,” Nelis said. “Most athletes know their body better than they know the alphabet.”
His left ventricle pumped at 10 percent capacity, which means it took his heart five beats to produce as much blood flow as a normal person’s one beat.
“It was an enlarged and damaged heart,” the Holland, Michigan, resident said. “They don’t know what caused it. They think it may have been a virus.”
Nelis vowed to outswim the disease. He stayed strong, swimming upstream for more than two decades.
“By 1995, I was working out as hard as I was the previous year,” he said. “My (swimming) performances were improving.”
He continued to swim, including competing in U.S. Masters swimming events. Because he was doing so well, doctors removed him from the transplant list.
But eventually, the disease had the last lap.
“It was becoming apparent that something wasn’t right,” Nelis said. “And it wasn’t the same as the first time. My stamina and enthusiasm were gone. It was just so hard to do it. I didn’t ever want to stop, but I knew something was really, really wrong.”
He quit swimming competitively in 2011.
In October 2013, he was diagnosed with atrial fibrillation, an irregular and often rapid heart rate that can decrease blood flow.
Doctors tried to shock his heart back into normal rhythm.
“The AFib was the last straw,” Nelis said. “It took 21 years for my heart to fail permanently. I tried to out-swim and out-race Father Time. I tried to stay physically strong and enhance my possibility of surviving, but in the back of their minds, everyone with cardiomyopathy knows where they are going to end up.”
This man who once could swim so far was sinking, fast.
In November 2013, Asghar Khaghani, MD, Spectrum Health heart transplant surgical director, installed a left ventricular assist device in Nelis.
Michael Dickinson, MD, Spectrum Health Medical Group section chief for advanced heart failure, has been a key cog in Nelis’ lap to wellness. He said the device saved Nelis’ life.
“At that time, he was critically ill,” Dr. Dickinson said. “He was going to die without it—probably within a month or two. He was dependent on IV medicines to keep him alive.”
The device that helped keep him alive also prevented him from participating in the sport that helped him feel most alive.
“The biggest thing for Fred was you can’t go swimming,” Dr. Dickinson said. “It would short out and you would be dead. But I have a phrase that I use: ‘We don’t do transplants just to keep people alive. We do transplants so that they’re able to live.’”
Thanks to the 32-year-old whom Nelis had never met, he received his heart transplant on June 18, 2014.
Coincidentally, as Nelis was getting prepped for surgery, he had no idea that a friend of his, Gordon Veldman, was also at the Spectrum Health Fred and Lena Meijer Heart Center.
Veldman, a close friend to Nelis’ brother-in-law, was getting prepped for a lung transplant.
The 32-year-old’s body was providing life-giving organs to both of them.
“It really is quite extraordinary that I have an organ partner,” Nelis said. “That’s what’s so bewildering about all of this. Neither one of us knew each other’s circumstances.”
Through the brotherhood of organ donation, Nelis and Veldman became close friends. They get together several times a month, and they always share an embrace to bring the 32-year-old’s organs close together again.
“We get together as often as we can,” Nelis said. “We’ve got war stories.”
Nelis is chronicling the stories and writing a book called, “Transplant Brothers.” He has already finished chapter 6.
“How coincidental is it for two friends, not knowing it, to end up on the same evening, receiving a single donor’s organs?” Nelis asked.
He has taken that coincidence and transformed it into confidence.
“I’m glad I had the transplant,” Nelis said. “I have no restrictions whatsoever. I’m not as good as I was, but that’s going to come. I’m confident in my ability (to compete at the Transplant Games) and the gift I was given.”
On a recent weeknight, Nelis donned swim goggles and fins and sat on the edge of the Holland Community Aquatic Center pool next to his good buddy, Dr. Steve VanWylen.
“He has a normal heart,” Nelis said of his friend. “I’m kind of like a diesel engine. It takes a long time to warm up.”
Because it was transplanted, Nelis’ heart doesn’t receive nerve stimulation from the brain. His heart rate doesn’t increase as naturally as it does for non-transplant patients.
As sun streams through the windows, Nelis and his friend jump into the pool and begin their laps. They’ll be swimming 80-100 pool lengths, or about 2,000-2,500 yards.
Nelis’ freestyle stroke is as liquid as the water itself, his arms effortlessly raising out of the water and his fingers sliding like butter through the surface again, all the while his legs churning gently yet powerfully behind him.
Next, Nelis works on his backstroke and butterfly.
“He likes to compete,” said Nelis’ wife of 35 years, Jean, as she watched from the bleachers. “His big thing was he wanted to get back into the pool. It was not a matter of if, but when.”
Jack Huisingh, executive director of the aquatic center, said a lot of people encouraged Nelis to rest. He wouldn’t listen.
“All he wanted to do was get strong enough to get a new heart,” Huisingh said. “And then he wanted to test that heart.”
Dr. Dickinson said Nelis’ attitude, athleticism and determination have contributed to his positive outcome.
“I think he came out of the womb swimming and being an athlete,” Dr. Dickinson said. “Fred has very high expectations. He is exceptional in how hard he pushes himself. This helped his outcome. To perform at a high level athletically, it takes somebody motivated who is willing to work at it.”
Dr. Dickinson said many transplant patients go on to lead normal lives, including returning to work.
The average survival rate for a heart transplant patient is 10 years-plus. The doctor has another patient who is more than 30 years out from transplant.
“Fred is a poster child (for transplants),” Dr. Dickinson said. “The Transplant Games are done to raise community awareness and celebrate the gift of life so the world can see that a transplant is not just about keeping people alive in a hospital or nursing home—it’s about giving people life back.”