Wednesday, August 27, 2014

Logistics and Lifeguarding: Really Living with Cystic Fibrosis

 In November 1992, The Paullina Times featured 11 month old Ethan Pauling, and his recent diagnosis with Cystic Fibrosis. His Parents Craig and Susan were just learning how to manage his medical needs. In  the mid-90s the family moved to Texas. Ethan is now  in his 20s, and in his 5th year at University of Texas, Austin majoring in environmental science. He works as a life guard on a beach in Galveston.
Looking at Ethan, and talking with him,  you wouldn’t know he spends hours of his day managing his medical condition.  Google Cystic Fibrosis and this is what it tells you: “Cystic fibrosis is a disease passed down through families that causes thick, sticky mucus to build up in the lungs, digestive tract, and other areas of the body. It is one of the most common chronic lung diseases in children and young adults. It is a life-threatening disorder.” Treatment involves a strict routine of nebulizers and medications to keep the symptoms at bay.
Ethan says he hasn’t let that stop him from doing what he wants to do, well, it did keep him from playing football, there was too much risk of dehydration. “I played soccer, and swam in high school, and was good at it. I’m pretty happy with my life right now. I don’t get disappointed or depressed, really about anything. Sometimes I think it would be nice to not have to worry about going off camping somewhere and not worry about waking up and having to feel better. But I have been able to go camping.”
He says he has inhalers that work really well for him, but the nebulizer needs electricity, which makes it challenging to go backpacking.
Ethan does have advice for parents whose child is diagnosed with CF: “My parents never really discouraged me from doing anything… if I had a kid with CF I would let him do what he wants to do and find a way for him to be happy. That’s mainly it.”
He says the logistics of managing CF are always in the back of his mind, but he doesn’t let it keep him from having fun with friends and pursuing the things he wants to do. “It’s time consuming.” He says if he stays with friends he takes a backpack full of his medications and nebulizer, but he still goes and has fun.  “always in the back of my head I have to think about my treatments and medicines.”
He also plays on the club water polo team at UT, noting that exercise is very important to help keep his lungs clear. He says lifeguarding has been a good job for him, they have mandatory workouts where they might have to run 3 miles or swim as far. He says Galveston Bay is fairly calm, but they do have to keep swimmers away from the jetties and the sea wall.
To learn more about Ethan, listen to our interview!  

Check this out on Chirbit



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