Planning for a Future I Never Thought I’d Have With CF

Having been diagnosed with cystic fibrosis as a baby, I grew up thinking I had an early expiration date. Once I started taking Kalydeco®, my health completely changed for the better. For the first time, I had a solid future ahead of me, and I needed to prepare for it.

| 5 min read
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Sarah Boylan
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“We have to die on the same day,” my sister used to always tell me. Of course, I wholeheartedly agreed but secretly always knew better. I knew my sister would have to live without me one day.

When I was born my parents were told my life expectancy would be 16 … “or so.” I was 10 days old when I was diagnosed with cystic fibrosis and from that day on I always had an “expiration date” as I like to call it. Growing up I was your typical kid: played after-school sports, loved having play dates, built pillow and blanket forts with my siblings, etc. Starting at about age 10, though, I was hospitalized once a year (on average), and as I got older, the closer I got to my premature expiration date.

CF grew up with me. The treatments and medications became more advanced and comprehensive the older I got. Rules and regulations to keep us CF patients healthy continued to evolve, but they still didn't prevent my disease from progressing. It wasn't long before I was hospitalized twice a year, had regular surgeries, and was missing class at least once a week.

For my whole life, I knew I was going to die earlier than everyone else around me, and as odd as it sounds, it never really troubled me. Those were the cards I was dealt, and I was just going through the motions until then.

I still wanted to be captain of the volleyball team. I still wanted to get good grades and get my driver's license. So I did -- I did all those things and never thought twice about my future. After all, my time was NOW.

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In my early 20s. I was still alive and kicking. I was working my way through finishing college and was on the life-changing medication Kalydeco®. Scientists and doctors alike were praising it. Kalydeco was going in and correcting my CFTR protein on a cellular level. This wasn't a cure, but in terms of treatment, it was a homerun with the bases loaded. Not only was I the first person in Colorado to be part of the research for this groundbreaking medication, I was feeling better too. I was no longer having frequent tune-ups. I was not only in school but also working, whereas before I wasn't able to be in school full-time, let alone have a job. Life was coming at me faster than ever before, and it wasn't just yesterday, today, and tomorrow that was on my radar. Cue my midlife “reverse existential crisis” entering the scene. And therapy. Lots of therapy.

What I mean is that now my life wasn't coming to an end soon; my world was actually opening itself up.

I had a solid chance at a future, CF and all. A life past “young” adult. I could have more than just a job -- I could have a career. And a family. And many, many more years to just do stuff. The whole way I thought about life had to change. I needed to plan for things further away than my social calendar for the weekend. I needed to save money rather than spend it. I needed to invest in my future rather than live as if I wasn't going to have one. It's not easy to change the way you think and the way you live your life every day, but it became clear to me that my life and world were changing, and I needed to get on board.

At times, I find myself resorting back to the easy way I used to live my life -- the easy way meaning I sometimes want to spend money rather than save it, resist the urge to work on myself and my career, and simply put it out of my mind that I am now 30 years young, not 30 years old.

I love that I have so much more life to live, but it also scares me senseless. Will I be successful? Should I get married or have kids? What happens when I get sick and can't live up to society's expectations? How do I maintain a high quality of life?

I don't have all the answers, but what I know is that there's only one way to find out. Get out there, take a deep breath, and live it up.

Interested in sharing your story? The CF Community Blog wants to hear from you.

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Topics
CFTR Modulators | Social Life and Relationships
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Sarah, a Denver native, is a graduate of the University of Colorado who found her passion for writing when she majored in English. Sarah was diagnosed with CF at 10 days old. Her favorite people in the world are her niece and nephew; she loves to travel internationally; and her happy place is unequivocally the beach. Sarah has been involved with the CF Foundation for years, volunteering, writing proposals, and speaking publicly. Her CF Great Strides team, Sarah's Striders, was the first group to get a CF bike ride in Colorado (Sarah's Riders). Her life motto: You gotta try everything at least twice. Find her on Instagram.

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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.