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"I Have Cystic Fibrosis But It Doesn't Have Me"

By Rachel Whidden

(CBS) — There are thousands of 20-somethings in Chicago. Of the ones I know, a good majority are finishing up their degrees and starting careers. Many of them are getting married and starting families. Some seem to be out at a new club every night.

Others work just to get by. That's me. Except my job doesn't reward me with a paycheck, but with life. I'm a cystic fibrosis fighter and my health is my full-time job.

Cystic fibrosis is a genetic disease that leads to severe damage to the lungs and digestive systems. Here's how the Mayo Clinic describes it: "A defective gene causes the secretions to become thick and sticky. Instead of acting as a lubricant, the secretions plug up tubes, ducts and passageways, especially in the lungs and pancreas."

My daily work consists of taking around 30 pills, hours of breathing treatments and airway clearance, medicated nasal rinses, inhalers, overnight nutritional feeds, endless appointments with specialties, and constant supplemental oxygen. I also spend weeks or even months in the hospital.

There are perks to this job. Time laughing with friends, family dinners, birthdays and holidays surrounded by loved ones.  Travel to places that take a person's breath away and a unique ability to appreciate all the amazing things life has to offer.

My travel days are currently on hold as I was officially listed for transplant last August. These days, I wait on a set of shiny new pink lungs to become available. That doesn't mean the fun and adventures are over. It just means they happen right here in Chicago.

Cystic fibrosis does not control my life. My oxygen tank and I have no plans to slow down while we wait for that magical call for a new pair of lungs. Stay tuned for more updates and join me as I share this experience. I have cystic fibrosis but it doesn't have me.

Rachel Whidden is a professional patient with cystic fibrosis who resides in the Chicago suburbs. She works hards to live each day to the fullest. Rachel blogs at Living Fast Dying Young: My CF Life.

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