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Thursday, August 28, 2014

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Lung transplant recipient breathes freely again

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Jay Sokoloff

MONTREAL — Jay Sokoloff is short and wiry, and when he walks and talks, all 120 pounds of him walks and talks quickly, with new purpose and vigour.

His avigour can be attributed to his new set of lungs.

After suffering from cystic fibrosis (CF) his entire life, 41-year-old Sokoloff woke up on June 24 in his Notre Dame Hospital room and marked the Fête nationale holiday with his new set of bellows pumping fresh, unfettered air into him.

Sokoloff said that from the very moment he came to after 10 hours of dual-lung-transplant surgery four months ago, he realized that the years of gasping for breath on stairs and hills, of coughing, and of mucous-choked lung infections, had come to an end.

“It was like a breath I hadn’t had since I was 14 or 15 years old,” Sokoloff said in a recent interview. “It was an excitement I couldn’t come down from.”

Through overtures made by friends, Sokoloff even received refuah shleimahs from former U.S. president George W. Bush, Prime Minister Stephen Harper, sportswriter Frank Deford and a longtime sports broadcasting hero of Sokoloff’s, Bob Costas.

“I could not believe that we were actually emailing each,” said Sokoloff.

Sokoloff took the surgery in stride, as he did his CF during the decades leading up to the operation. He lived as normal a life as possible with a genetic disorder that triggers lung infections, scars the pancreas and claims many by their late teens. Diagnosed at age three, he grew up with three older siblings, attended Jewish day school, and competed in sports and outdoor activities without any real problems until puberty, when CF symptoms began to make their presence more known.

But regular life still continued. In 2001, Sokoloff married his wife, Virginia, and they had two daughters, Sarah, now 8, and Nora, 7. Sokoloff also established a flourishing gift store – Mortimer Snodgrass – in the west end before relocating to Old Montreal.

But in August 2010, because his CF was steadily getting worse and at the advice of his doctors, Sokoloff applied to be put onto a double-lung-transplant wait list in Quebec.

Equipped with a beeper and told never to be more than an hour’s drive from the city, Sokoloff and his family waited and waited while carrying on with their normal routine. On the eve of the surgery, Sokoloff was still walking the family’s two dogs – Lucy and Mortimer – around the block.

On June 24, his daughter Sarah had just been dropped off for summer camp and family friends were visiting in the backyard when Sokoloff’s beeper suddenly went off.

“You wait and you wait, but it was still a shock,” Sokoloff said. “I knew it meant lungs were available.” He had been number 12 on the list, and the transplant team had to make sure the lungs were compatible and would fit Sokoloff’s relatively slight frame.

A few hours later, he was on the operating table.

“All I took was my slippers,” Sokoloff said. “There was anticipation and a little anxiety, but I was calm.”

Sokoloff spent only 19 days in the hospital. Life now, he said, has become a daily regimen of dozens of anti-rejection pills and medication to help his CF-damaged digestive system, as well as blood tests, not to mention a suppressed immune system that only days before speaking to The CJN landed him in the hospital with pneumonia.

“That was the first ‘hiccup’ I had,” Sokoloff said. One doctor told him that in a way, he was “trading one disease for another” because of the new risks and regimen.

But if that’s the case, being able to breathe freely again despite the rejection issues is a “disease” he has no problem dealing with. At the beginning of September, his store held a huge sale to celebrate the transplant, and Sokoloff is champing at the bit to return to work full time.

He is also planning to take his family to Colorado on a ski trip next February, even though he would not be covered by Medicare, U.S. government health insurance, if transplant-related issues surfaced there.

“I’m willing to take that gamble,” Sokoloff said.

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