Double lung transplant for man with cystic fibrosis

James Heyboer with his twin sons (Family photo)

GRAND RAPIDS, Mich. — Beth Heyboer decided nearly 20 years ago to join up with her friend Michelle Prangley Ripley and help run Friends and Families of Cystic Fibrosis.

It’s a nonprofit organization run with volunteers with the sole purpose of raising money to help children and adults in West Michigan who are affected by cystic fibrosis. It’s a cause near to Beth’s heart, as her son James was born with the disease.

“He was born three weeks early with a bowel blockage and underwent surgery for removal of 40 percent of his bowel at just 12 hours after birth,” Heyboer said.

CF largely affects the lungs; a thick mucus covers and fills them – but it can block other parts of the body. A bowel blockage is an early indication that CF may be present. The disease can hurt the pancreas as well.

“[James] was diagnosed with CFRD (Cystic Fibrosis Related Diabetes) around the age of 10,” Heyboer said. “He was then and is now insulin-dependent.”

When Heyboer joined Friends and Families of Cystic Fibrosis, it was with James in mind. She never knew that 20 years later, the auction the organization ran each year would change her son’s life.

At the 20th annual BID for Bachelors and Bachelorettes, Heyboer was up on stage, jokingly telling the crowd to put away their cell phones and bid. Everyone except her son, she said. That’s because James was waiting on a call from Spectrum Hospital as he was on the lung transplant list.

Growing up, James lived, for the most part, a normal life with the disease. He never let it hold him back. It wasn’t until after high school that his lung capacity started to drop. By the fall of 2016 he could hardly make it up the stairs without stopping for a break, let alone keep up with either of his 2-and-a-half-year-old twin boys. Doctors agreed it was time for James to look into a lung transplant.

On Dec. 5, 2016 he was officially put on the donor list.

“We all joked that I would get the call probably on my birthday or that night of the event,” James Heyboer said with a smile. “I’m like, ‘Oh it won’t happen.’ But my birthday came and went, my thirtieth birthday came and went and nope, no call yet.”

The event James Heyboer was talking about was the auction, the 20th BID for Bachelors and Bachelorettes. His mom hardly had time to sit down in her seat after warming up the crowd before her son’s cellphone rang. It was Spectrum Hospital.

“’They said, ‘Is this James Heyboer?’ And I said, ‘Yes it is.’ And she said, ‘Well, I have a pair of new lungs for you,’ and I wasn’t sure what to say. I don’t think I said anything. I think I just started to cry,” James Heyboer said.

The next 24 hours were a blur. The Heyboers rushed home to wash up and were to the hospital at 9:30 p.m. on March 4. The next morning, the lungs arrived, the doctor confirmed the match and James Heyboer went into surgery. After 14 hours, he took his first breaths in his new lungs.

His family is grateful for the donor who saw the need to save a life; to the doctors, whose tireless work – even through complications during and after surgery – gave James more time; and to their friends and family who have supported them in the battle against Cystic Fibrosis – and were there with them on the biggest night of James Heyboer’s life.

There is no cure for Cystic Fibrosis. James Heyboer doesn’t know how much life he’ll get with his new pair of lungs. And there are restrictions to what he can and can’t do. He can’t “play in the dirt” as he called it. But he doesn’t take any breath for granted. The new lungs mean more than just new life.

“I can move forward in my life and be with my wife, watch my boys grow up,” he said, holding back tears. “So, yeah. It’s quite amazing.”