A new heart was Arlington boy’s only shot

Published 10:00 pm Saturday, March 8, 2008

ARLINGTON — A few weeks ago, Arlington’s Karl Bielser was on the court with the Haller Middle School boys basketball team. It was the season’s first game.

The Haller team had the ball in the early minutes and point guard Andrew Bosket spotted Karl open on the right, just beyond the 3-point line. A quick pass, a quick shot, and the ball settled in the net.

And the way the Haller fans started cheering, you’d have thought they’d won a championship.

The thing is, even championships don’t get this good.

Karl’s basket, you see, was so much more than just his first shot of the game or the season. In fact, two years had passed since Karl last took a shot, made a basket or even played in a game.

Two years, the time he spent waiting for and then recovering from heart transplant surgery at Children’s Hospital and Regional Medical Center in Seattle.

The 13-year-old Karl, who received his new heart last March 16, went back to school in the fall. This winter, after being cleared by his doctors, he turned out and made the basketball team.

And when that first shot went in, there were smiles on lots of faces. Tears, too.

“I think I stood up and was screaming,” said Julie Bielser, Karl’s mother. “Everybody else was cheering, too. It was pretty magical. To see him on the floor playing basketball again, it makes me tear up just thinking about it.”

“It was absolutely unbelievable,” said Guy Kennedy, Haller’s head coach. “I have to tell you, as a coach you can get so focused on the game. But when I called Karl’s name to go in and he started running on the court, all of a sudden I was thinking about the magnitude of what was happening.

“And then he wasn’t in the game more than a minute and he launched a 3 and it went in. It was just awesome.”

Karl took up basketball when he was 6 and was always a good player, although he often experienced shortness of breath. He was initially diagnosed with asthma, but about two years ago his lips began turning blue during moments of fatigue. Tests determined that he had restrictive cardio myopathy, or an enlarged heart, caused by a mutation in one of his genes that tell the body how to make protein for the heart muscle.

The prognosis was stark and sobering. His heart was failing, there was no cure or surgical remedy, and untreated the condition would inevitably be fatal.

His only chance for long-term survival was a heart transplant.

The long wait

He was diagnosed in February of 2006, and went on a waiting list for a donor heart two months later. After 11 months, which became the longest wait for a donor heart in the history of successful transplants at Children’s Hospital, he underwent surgery.

It was almost too late.

“He was in pretty bad shape,” said Dr. Yuk Law, a cardiologist at Children’s Hospital. Without a transplant, “he probably would not have lived more than another year, and maybe even shorter. Every week of him not getting the transplant, he could have died. … It’s miraculous that he actually survived (as long as he did). Every week that he survived was quite amazing.”

“He was dying,” Julie Bielser said. “It was getting toward the end where something had to happen fast. We knew from his condition that he would probably not last much longer.

“Thank God it happened when it did, but not everybody is that lucky. Even when we were up there waiting for Karl’s transplant, other kids were waiting for other organs. And some of them passed away.”

The surgery, which followed a four-hour round-trip flight to retrieve the donor heart, lasted almost nine hours. And the improvement was virtually immediate.

“After the surgery, the doctor said, ‘You’ll notice something right away,’” Julie Bielser said. “And we did. It was his coloring. He just pinked right up. That was amazing.”

The next day Karl was already off a respirator and sitting up in bed. He went home from the hospital nine days later and was soon taking walks through his neighborhood. In June he was allowed to go to school for an end-of-the year party. In July, the family took a vacation to Lake Chelan.

“I was frightened about the surgery,” Karl said. “But I just kind of wanted to get it over with so I could go on and do things.”

Daily reminders

His reminders of the transplant are the long scar in the center of his chest, which is fading, and the daily anti-rejection medications — eight capsules in the morning, nine at night — he will take for the rest of his life.

And, of course, the knowledge of a remarkable gift from another family in the midst of their own enormous grief. The donor was a boy who had died unexpectedly.

“He knew his heart was going to have to come from somebody that died,” said John Bielser, Karl’s father. “He said, ‘It bothers me that somebody has to die for me to live.’ He was very concerned about that.”

To help him understand, John and Julie Bielser explained that they had registered to be organ donors even before Karl became sick. As proof, they showed him their driver’s licenses, each with a small red heart sticker, “so he’d understand that that’s what mom and dad have done, too,” John Bielser said.

Throughout this long, difficult and uncertain journey, the one constant has been the support of family and friends, both in Arlington and elsewhere around the country. People have offered donations, prayers and numerous other caring gestures to the entire Bielser family. One early fundraiser at Arlington High School, for instance, drew about 1,000 people and raised approximately $70,000.

“It’s been a phenomenal experience,” John Bielser said. “Arlington is a growing town, but it’s still got a very small-town feeling and the community has wrapped its arms around us. It’s just been unbelievable to see the outpouring, and it’s gone on and on and on.

“It becomes a comfort zone to have people surrounding you and keeping you going,” he said. “Without all the thoughts and prayers from our friends and family, it certainly would have been a much tougher predicament.”

Since his return to basketball, Karl says he can run “way better” than he ever could before his transplant. He is still getting stronger, and he long ago shed whatever self-consciousness he might have felt about the long scar that divides his chest. At practice, when the team splits into skins and shirts for a scrimmage, he peels off his shirt without hesitation.

Getting back to a familiar routine of school and activities “has been really good for him, I think,” said Levi Larson, 14, a friend and Haller teammate. “He had that time when he couldn’t do stuff, and now he can do normal things again.”

And the future only gets brighter. Law, the cardiologist, said Karl should have no physical restrictions as he continues through life. “He can climb mountains or whatever he wants,” he said.

“He has had a great success in his transplant,” Law added. “Most patients who receive a heart transplant do marvelously well. Some don’t, but the large majority do. And Karl, more than the average patient, has taken it to his full advantage. He’s a good kid, he plays sports, he studies, and he does everything that the heart allows him to do.”