Plainview resident Gary Klausner is 47 years old. He has had cystic fibrosis for 37 of those years, and his lungs for only 13.
It's been a roller coaster ride lasting nearly four decades, and the ride hasn't come to a complete stop quite yet, but Gary is thriving, having survived double lung transplant surgery. He is now an author, with his book 'Never Say Never: A Life of Challenges' now available online and at in Morton Village.
Challenge is an understatement. Klausner was diagnosed with cystic fibrosis (CF) at age 10. With CF the lungs fill with mucus, causing life-threatening infections and obstructing the pancreas, causing digestive trouble. When Gary was first diagnosed, life expectancy was 16 years.
For a while, Klausner managed just fine as a high school athlete and college graduate. He got a job as a trader on Wall Street and got married. At age 30, however, things took a turn for the worse.
"It wasn't a slow progressive downfall, it was like falling off a cliff," Gary said. "One day I went from driving myself from work to (North Shore L.I.J. Hospital) and never came out, I was in the ICU unit for 37 days."
A rare organism was growing inside Gary's lungs, untreatable by antibiotics. He was on oxygen 24 hours a day. Finally, he was told point blank: he needed a double lung transplant or he would die.
The timing couldn't be worse, as Gary's wife Robin was pregnant with twins. Their sons Matthew and Steven were born October 25, 1998. But fatherhood in full force would have to wait.
"The afternoon of their bris, I left [the same day], not knowing if I would see [my family] again, and I drove down to North Carolina with my father," Gary said.
Gary was on the waiting list at Duke University Hospital, and had to move there to await a transplant. Simply getting on the wait list was an accomplishment, as most hospitals would not take him because his chance of survival was poor due to the organism.
Another challenge: Matthew needed open heart surgery shortly after his birth.
"My wife was in the ICU at Columbia Hospital with [Matthew], my in-laws were with my other twin, and I was down in North Carolina with my parents," Gary recounts.
Matthew's surgery went well, and three days later, the call came. A pair of lungs had been found, and Gary received his new organs in a 10 hour operation. He wasn't out of the woods yet. Gary remained hospitalized for 35 days with multiple complications.
"Aside from the transplant, they paralyzed my vocal chords, they broke a feeding tube in my chest, [and] I had to have another operation for acid reflux," he said.
Finally he went home, and Gary began learning how to breathe on his own with his new set of lungs. He also began taking anti-rejection medications, 40 in all, that he will need to take every day for the rest of his life.
Six weeks after returning home, Gary decided it was time to put his lungs to the test. He ran a 5K race in Long Beach on Memorial Day, 1999. A couple months later, he competed in a 5 mile run at Jones Beach. Soon, Gary Klausner, transplant survivor, became Gary Klausner, local celebrity.
There was the appearance on the Discovery Channel. He was Man of the Year for the Boomer Esiason Foundation, run by the former Jets quarterback whose son has CF. The Klausners also received the 'Queer Eye For the Straight Guy' treatment, where they got a home makeover, a shopping spree, and a trip to the Bahamas, courtesy of the Bravo TV series.
Life expectancy for those with CF has more than doubled in the years since Gary was first diagnosed, and the five-year survival rate for double lung transplants is 50-60 percent. Those are just numbers, with '1' being the only one that matters, as in taking things one day at a time, one breath at a time.
"Life is perfect right now, a complete 360 from where I was 13 years ago," he says, breathing easy, or at least a lot easier than he ever did before.
Gary Klausner will sign copies of his book at the Book Revue in Huntington on Fri. March 16 at 7 p.m.