Navigating the Limits of CF

I have found that the limits cystic fibrosis imposes on my life are a bit like weather forecasts -- open to unexpected changes. Whether by hard-fought scientific advances, thoughtful (personal) planning, creative thinking or sheer luck, many of the limits of CF now come with beautiful possibilities attached.

| 5 min read
Tim Koerner

Cystic fibrosis has a way of announcing its limitations on you at every major life turn:

What my parents were told when I was born: “Life expectancy (in 1984, the year of my birth) is 14 years old ...”

What my parents were told as I was growing up: “Well, he's going to be capped at 5'6" and 140 lbs., so keep that in mind ...” 

What I was told about starting a family: “By the way, you, like most CF males, can't have kids (naturally).” This fun fact was a well-timed disclosure made known to me after I had just begun dating. I would bet I am not the only male CFer to be thrown for a bit of a psychological loop upon learning this aspect of the disease. 

What I was told about having a career: “Working full time may not be possible …”

These aren't positive things for you or your loved ones to hear at any juncture of life, but as a person with CF these “predictions” also turn out to be a bit like weather forecasts: open to unexpected changes.  

As a now 31-year-old with CF, having grown to 6'1" and 200 lbs., with a wonderful wife open to IVF or adoption and a full-time job that helps others while allowing me to work from home, I sometimes wonder where all of those limits went or where they are lurking now.

There are still some nonnegotiable limits CF imposes, such as spending 1-2 hours a day strapped in for vest therapy (don't forget the nebulizer). And making sure to take 10 enzymes with each meal -- five with snacks -- or the food may as well be tossed out of a moving car for all the good it will do. 

Work hours cannot be endless and unpredictable because it would disrupt my reliable self-care regimen and wear down my immunity defenses. And it's best to not have a career that requires constant travel, perpetual hand-shaking and rapidly changing environments because it beckons the perfect storm for bad infections and a Contagion-esque health crisis in my life.

But even these CF limits have … well, limits.

Spending 1-2 hours of vesting each day means I have the perfect opportunity to reach out to friends and family via text, Facebook and email, keeping valuable relationships strong and reconnecting with friends. If a social connection is not the priority of the day, organizing the week's calendar, errands and other responsibilities is the perfect vest multitask endeavor. The vest limitation also serves as a helpful reminder that sometimes a mandatory hour of Mario Kart is the best thing for one's mental health.

Making sure that I take enzymes with each meal acts as a sort of nutritional Pavlov's bell, reminding me that I could hit my 3,000 daily calories via Doritos and McDonald's -- or that I could take an extra 30 minutes to create meals that keep my whole body healthy. (This approach did not set in until my mid-20s when it dawned on me that keeping my weight up means little if my arteries are clogged with grease and cookies.)

Though I cannot jump into 10-15 hour workdays that are often directly correlated with powerful positions and six-figure salaries, I can proactively seek out employers and roles that inherently value work-life balance, offer me a personal challenge, benefit society and afford my family a livable income. I can even plan my own future businesses to fit this mold. This provides me with the gift of valuing experiences and relationships above money.

While I may not be able to engage in a perpetual cycle of airports and sales conferences, that has not prevented cherished, one-off trips around the world with the family and friends I hold most dear.

While I may not be able to engage in a perpetual cycle of airports and sales conferences, that has not prevented cherished, one-off trips around the world with the family and friends I hold most dear.

All of this is to say that although CF sets certain limits, it also leaves glorious, mischievous wiggle room. Whether by hard-fought scientific advances, thoughtful (personal) planning, creative thinking or sheer luck, many of the limits of CF now come with beautiful possibilities attached. 

Living with the unknown and beautiful possibilities of life without worry is difficult and delicate for anyone. Although CF affects so much of our bodies, from lungs to pancreas to reproductive processes, it does not control our brains, creativity and work ethic. For that, I am thankful every day. 

It's fun to prove CF wrong. Believe me. So when CF announces its next limitation for me, I'll be looking around for the windows and doors the limitation forgets to close.

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Emotional Wellness

Tim was diagnosed with cystic fibrosis as an infant and credits his parents and CF care team for providing him with years of phenomenal CF care. He completed his MBA in social entrepreneurship, works full time in the community services sector of state government, and recently released a children's book inspired by his son, Lewis. 14% of the book sales will be donated to the CF Foundation to support the organization that has helped Tim beat his 14-year life expectancy by multiple decades. Tim lives in the Twin Cities of Minnesota, with his wife of nine years, Ashlee, their two sons, Lewis (3) and Arlo (8 months), along with their maltipoo dogs, Bou and Sully. Tim worked for the Minnesota/Dakotas Chapter of the CF Foundation from 2007-2010 as a full-time fundraiser and remains involved in the annual Breath of Life Gala event with the support and participation of family, friends, and colleagues.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.