The Bounce-Back Kid

Professional snowboarder Chris Klug carves his way back to the top of the mountain.

"We couldn't do anything for him."

Missy frowned. "You mean you couldn't do much?"

"No," the physician said. "I mean we couldn't do anything." Chris's bile ducts were completely closed; the doctors couldn't open any of them.

 
Brian Stauffer
 
Chris as a toddler.
Chris as a toddler.

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The next morning, Everson met with Chris, Warren and Missy. He'd brought Kam, the chief of transplant surgery at University Hospital. The failed ERCP meant only one thing. "We want to move Chris up to Status 2B," Everson said. He needed a transplant as soon as it could be arranged.

Transplant hospitals belong to the United Network of Organ Sharing, or UNOS, which list transplant patients according to their medical status. Chris had originally been placed on Status 3, which meant he was receiving ongoing medical care for his liver but was a low priority as far as immediate need.

The final two status levels were 2A and 1. They were reserved for critically ill patients. If a liver became available, a 2A or 1 would trump Chris's 2B. It was now that Everson's foresight in putting Chris on the list three years earlier became apparent. Within a status group, there were determining factors as to who would get a liver, such as medical urgency, matching blood types, size (a child's liver would go best with a child), and age. However, all other things being equal, the only difference between people in a status group was the length of time they'd been on the transplant list.

With three years behind him, Chris would be right at the top, Everson said. But first they had to get him on the 2B list, and that wasn't guaranteed.

UNOS divides the country into regions. Colorado is part of Region 8, which also includes Wyoming, Nebraska, Iowa, Kansas and Missouri. Each region has a panel of doctors at a transplant site who have to approve a patient being moved up in status according to medical criteria. But the liver of a PSC patient doesn't often meet the usual transplant criteria, because the problem is with the bile ducts, not the liver. By the time the bile ducts damage the liver -- with cirrhosis or liver cancer, for instance -- it might be too late. So special permission has to be sought from the panel of doctors for PSC patients.

The specialists were confident that they would get approval to move Chris up, though it would take a week to ten days. In the meantime, he could go to Hawaii to surf.

During the first few months of 2000, University Hospital had performed liver transplants at a record pace because there had been a lot of organ donors. The average waiting period for patients was thirty to sixty days. It shouldn't be long now.


"Come on, wait just a few more minutes," Warren Klug urged Chris. "This is going to blow right over."

Chris, Warren and Kathy had met at the golf course on the outskirts of Aspen for a "Klug family outing," but it had quickly become apparent that they wouldn't be playing this July afternoon. The storm clouds that had been building up all morning behind the Maroon Bells were now descending.

Thunder rumbled down from the high country. Warren dismissed the approaching storm with a wave and a smile: "Five minutes and it will be gone." The words were hardly out of his mouth when a bolt struck the summit of Buttermilk Mountain, a mile distant.

"I'm outta here," Chris said, as the lightning flashed again, only closer.

His parents protested. Surely this storm would pass and the sun would come out.

Chris wasn't convinced. He hugged them and walked off, his ponytail fluttering in the building tempest. Warren and Kathy knew they couldn't wish away a Colorado thunderstorm any more than they could wish away the disease that was killing their tall, muscular son. It was just that sometimes it seemed as if there were a conspiracy to rob them of their time with Chris. Lightning storms, birth complications, childhood ailments. And now he needed a liver transplant, or he might not make it to his 28th birthday in November.

In this difficult time, they drew strength from their faith, from Warren's oft-repeated mantra that God wouldn't have brought Chris through so much only to abandon him. They also relied on Chris's self-confidence: He wasn't going to let some disease stop him from getting his medal.

Still, there was the feeling that time was running out. There were simply not enough organs -- hearts, lungs, kidneys, livers -- for everyone who needed them.

"Tomorrow it's 72 days since they put him on the top of the list," Kathy said quietly as they walked to their car. "The doctors said sixty days, tops."

Once Chris had been moved up on the list, he'd been sent home with a pager by Tracy Steinberg, a transplant coordinator. She said that when a potential donor was located, she would page him three times and then try the phone numbers he'd been asked to supply.

Convinced the call would come soon, Chris followed the rules for a few weeks.

But there was no page. Steinberg herself was perplexed by the length of the wait. They'd been transplanting livers at the rate of one or two a week through the spring. Suddenly, the donor pool had dried up.

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