Imagine being 12 years of age and being told that you might not make your 18th birthday. This was the news given to my family and me when my parents, fed up with other doctors, finally took me to Iowa City. They knew something was wrong and despite insisting upon the possibility of Cystic Fibrosis with the local doctors, nobody had listened. 

I was born in 1972 and the first 12 years of my life were rough. Those years were inundated with lots of sickness, from colds, flus, ear infections, bronchitis, and a couple bouts of pneumonia. So, when I was told I had Cystic Fibrosis, despite the fact that the average life span at that time was 18 years, I was relieved. I finally knew why I always felt terrible, had so many illnesses, and, at that time, started to cough up a lot of phlegm. Iowa City admitted me that moment and that first appointment turned into a four-week hospital stay.

Being diagnosed with Cystic Fibrosis did not slow me down. I grew up in the middle of nowhere, around the backwaters of the Mississippi. I climbed trees, went canoeing to the small islands and sometimes stayed overnight out there. My parents did not hold me back, nor tell me I couldn’t do something because of my CF. So, when I wanted to get a job, so I could buy my first car, they supported me. The first job I had was on a local farm and I did a variety of stuff, from mucking out stalls to piling hay bales. 

This job was just the beginning of 30+ years of working, which included the local fitness center and a 20+ year career as an automotive technician. I thrived on the challenges and fast-pace of the automotive repair industry. I liked working on vehicles and making sure people’s cars operated correctly. It is a service I am proud of.

Thriving on challenges does not stop there. Over the years I have developed a very regimented workout schedule. I am in the gym almost seven days a week and do combinations of weights and cardio. Working out is what has helped me to control my CF and not let my CF control or dictate my life. 

My determination for working out came from a fellow CF patient. I met Kay during one of my hospital stays when I was younger. At that time she was in her 50's, an age that was then unheard of for anyone with CF. She took a group of us kids, sat us down, and told us what we should do in regards to working out. She was a fitness instructor herself, so she knew what she was talking about. Although, I don’t recall all of what Kay told us, whatever she said certainly resonated with me and I haven’t stopped yet. 

Another challenge that I’ve taken on is doing my own physiotherapy. It wasn’t something that I did automatically, it was something that gradually happened. My dad built an inverted platform to help me do my therapy and one day he had come home late, was super tired, and felt bad that he couldn’t help, but I had already done it. From then on, I did the majority myself. Sometimes I would have help with doing my back, but mostly it was me. I now use an inversion table to do my therapy, but for quite a long time, it was a beanbag and a pillow. 

My wife convinced me to get the table, when we were going through our registry, for our wedding. It is a lot better than the good ol’ beanbag!

In 2008, I met my wife, Karen and we wed in 2012. That was the best day. We had so much fun even though it was hotter than ever! In the almost 5 years we’ve been married, it’s been quite an adventure. On our second anniversary, we were bailing water out of our basement from a huge rainstorm in the middle of the night. There have been ups and downs, of course, but I could not ask for a better spouse. Both of us enjoy spending time with our four “fur babies,” one of those being a Chesapeake Bay Retriever named Cocoa. He is the happiest dog I’ve ever known. He even has this grin that we call his “cheesy grin,” it’s so funny when he does it and he starts sneezing if he holds the grin a long time.

CF has taught me many things over the years. The biggest one being to never give up. Even recently as I've struggled more with declining lung function and have started testing for transplant, I still find ways to stay active and busy. I may not be able to work full-time anymore but I still push my limits and have been exploring new ventures and setting new goals for myself. I recently started doing urban exploring for a YouTube channel that I'm developing and may teach part-time at the local community college. Receiving my diagnosis in 1984 changed my life completely but it never changed my drive to make the most out of every day.

 

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Kiley Lyon is 44 years old and was diagnosed with CF at age 12. He lives with his wife, three cats, and dog in Illinois. He is the CFLF’s 1,000th Recreation Grant Recipient and used his grant to pay for a year long gym membership. He can be contacted at kileycoyote72@gmail.com

 

 

 

***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation***   

 

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