Patient Spotlight: Scott KleinPosted on April 3, 2017

By Luz Frascarelli,
CFLifecare Team

When you first meet Scott, you realize how full of joy and life he is. His contagious smile fills your heart as does his stance on life. Scott was diagnosed with CF when he was two years old in 1970 when the life span of a child diagnosed with CF was only five years old. His parents, new to the disease, constantly consulted with their doctor who advised them to let him live as normal of a life as possible. When he was four, Scott wanted to play ice hockey and just as his doctor advised, his parents allowed him to play and he’s been playing ice hockey ever since.

Scott always says, “Be optimistic and laugh at life, it's actually very entertaining.” But the grass wasn’t always green in Scott’s world, in the early 2000’s Scott was told he needed a double lung transplant, and luckily thirty-three months later doctors found a match for him. He learned that without this transplant, he would have had a little under six months to live. “What kept me going during the down times, was being a competitive person.  Knowing that today is today, and tomorrow is a different day to attack. You see, I look at myself as being a race car.  When I went into the hospital, I received a "tune-up,"  I took it as going into the race pits or back to the shop for new parts and fluids because I always felt better afterward, the way your car feels after going to the shop or getting new brakes.”

Prior to Scott’s transplant, he visited the hospital four times a year for three years and he used this time to watch lots of T.V shows that would make him laugh “I love to laugh and it's great for coughing out the junk in our chest.”

Scott feels one of his biggest accomplishments was of receiving his varsity letter in high school for cross country, track and field and how he became the first person with CF to play on a varsity ice hockey team in college.

One of his biggest challenges has been his double lung transplant in 2003 which he prepared for both mentally and physically because he saw it as his Olympic event. 

“I prepared for it physically by lifting weights every night for 1 hour, 5 months before the operation.  I was having major problems just walking 10 feet at that time, but I could lay on the ground and lift dumb bells.  Starting with only 5-pound dumbbells, I built up to 35 pounds by the time I had the transplant.” His training made the muscles around his chest as strong as possible in preparation for what was to come.

His mental training also involved preparing for situations he knew he’d have to face ahead of time.  For instance, how he would react to being on a vent. He would tell himself to let the machine do its job. He also knew that there’d be ups and downs after the transplant so he planned to stay positive throughout it all. He would put notes on the walls with positive sayings.

“It totally worked” he shared with us because some transplant patients are on a ventilator and in an induced coma four days after their transplant while he was off oxygen after only two hours post-surgery. He had actually begun oxygenating at 100% for the first time in his life.

“Aside from my wife and two children who have been so wonderful to have in my life, the transplant was a miracle from God.  Being sick for most of my life, and then being healthier than most of my friends and family happened overnight.  Physically it was easy, but mentally it was more difficult than I expected.  I went bananas playing in tennis and golf tournaments, I started racing cars and playing way too many hockey games.  I really missed out on my family, and regret that a lot.”

Scott is very passionate about talking to others with CF and parents or families affected by CF to provide support and encouragement.  He can be reached via email at crushcf20@yahoo.com

 

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