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Living with Cystic Fibrosis: The Luke Pepper Story

luke cf

Back in 1998 when I started working as a new teacher in Torrington, late nights were common. There were papers to correct, lesson plans to write, game tape to review, and of course, the practice schedule and game plan to prepare for the next big match.

On my way home, I would go to the gas station, fill up the car, and purchase some snack food for the ride home. On the counter, next to the register, was a plastic canister with a sign saying “Help Luke Pepper Fight Cystic Fibrosis”. Without thinking twice, I would throw my extra change in the canister and begin my 30 minute drive home. This was the “norm”, as I dislike loose change in my pockets and in my car.

Let’s fast forward to 2005, when a freshman walked into our school named Lance Pepper. Lance played soccer and basketball, and was interested in playing boys volleyball.

I met his family during the fall soccer season and his father Jim expressed interest in coaching boys volleyball with me in the spring. He had an impressive resume, worked at the middle school in town, and was the number one candidate for the job. He was a welcome addition to our coaching staff.

At this point, something should have clicked in my brain connecting the last name Pepper to Luke on the canister, but it didn’t. When I met with Jim to prepare our upcoming spring season, he asked me if his younger son could manage the volleyball team, run the sound system, and videotape our games. His younger son enjoyed these hobbies. After all, which 11 year old wouldn’t want to run a $2,000.00 sound system?

luke

Despite battling CF, Luke played on the OWTS volleyball team.

The next day, Luke Pepper walks into my gym with his dad, and immediately became in instrumental part of our program. Luke would spin music to keep the fans and players motivated. He was working with our senior sound managers, creating team videos, playing in the gym with the “big kids”.

He followed us around to scrimmages, play days, away games, helped out at our summer camps. Still, nothing clicked. Luke was a normal 11 year old, running around, having fun, being a kid.

One day, while walking thru our school gym, talking to Jim about our game plan, it dawned on me. I turned to Jim, and asked “Is the Luke Pepper on those canisters your son?” Jim smiled and said “Yes”.

I thought to myself, what is Cystic Fibrosis? How does it affect the body and mind? What is it like living with Cystic Fibrosis? After all, this energetic, fun loving kid is in my gym, and acts like a regular adolescent.

Cystic Fibrosis is an inherited disease the affects the lungs and digestive system. It creates thick, sticky mucus that clogs the lungs, leads to life threatening infections, and obstructs the pancreas and stops the natural enzymes from helping the body break down and absorb food. (Taken from www.cff.org) In other words, what you and I take for granted, breathing, is often very difficult for a person with CF.

However, if you ever have the chance to meet Luke, he runs circles around me. He hikes, takes long bike rides, plays volleyball, snowboards, and the list goes on. How is this possible?

CF has not slowed Luke down at all, and in fact, in some cases, pushes him farther than other kids his age. What the world doesn’t see is the amount of effort and care that goes on behind the scenes.

Luke takes approximately 60 pills a day. Luke has to perform breathing exercises at home to keep his lungs clear. These breathing exercises take 3 hours a day. Luke has to attend numerous doctor visits and he has been hospitalized several times in elementary school to keep his CF on track.

His doctor’s visits are for his pulmonary function, his liver, and his pancreas. Cystic Fibrosis not only affects his breathing, but also his liver and pancreas. Luke has cirrhosis of the liver from the CF which causes his spleen to be displaced. He also is monitoring his blood sugar levels due to another condition called Cystic Fibrosis Related Diabetes. At this time, he needs to attend regular doctor visits every three months that last about 3 hours.

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