Living With CF

Because I was diagnosed at birth, I'm unable to give an account of what it was like to hear the diagnosis for the first time. I've heard my parents' version of what that was like. I was born on the fringe edge of all kinds of new developments for CF treatment, but there still wasn't much out there in terms of reading material or guidelines for my folks to go by. My mom says they basically handed her a leaflet about CF and told her that I might not live to see my 10th birthday.

That was nearly three decades ago.

I never considered myself "sick" and still don't. I have recollections of what it was like to discover at an early age that I was different. When I was in kindergarten I thought it was the other kids who were strange for not needing to take enzymes with their food. I remember my dad teaching me at breakfast one morning how to swallow multiple pills at once with the help of a nice big glass of acidophilus milk. I remember getting in heaps of trouble for refusing to take my meds and instead stashing them around my bedroom. I remember wanting to play the xylophone in the school band and being told by my parents that I had to pick a big wind instrument that would provide good lung therapy (I chose the French horn - lots of sustained breathing!)

The most notable part of understanding that I had CF came when I was in 5th grade. This was the first time my family had ever heard of CF specialty team clinics. We got an appointment and were just astonished at the volume of information that was presented to us. I remember being more thrilled than scared. There were booklets about nutrition which for me was a real turning point. I typically have more difficulty with malabsorption than with lung infections. Being told that I could have as much fat as I could tolerate and as many calories as I could tolerate was the most exciting thing I had ever been told in my life. Up until that point I think I could count on one hand the number of times my family had eaten at a fast food restaurant.

We celebrated that night on the way home from the doctor's office by stopping at Denny's for a hot fudge sundae-my first ever.

I consider myself fortunate to have not been hospitalized until I was 13. I have to admit, this was largely due to my rebellion against taking my meds. The teenage years with CF were rough, but I'm sure that's true of anyone's teenage experience. Throughout high school I was hospitalized an average of once a year. When I got to college I had learned enough about how my body was affected by CF during times of stress, so I learned to voluntarily schedule my "tune-ups" around my breaks from school.

As I have gotten older, there have been additional diagnoses made, and those have been handled with as much grace as possible. Osteopenia. Allergies. Impaired glucose tolerance. Cepacia. Sinusitis. Each time something new is discovered, we (my family, husband and I) initially suck in a breath of air to brace ourselves for what these things mean. We have learned to plan for the worst but hope for the best. Throughout everything we have faced, we have learned that we don't need to be afraid of CF.

I'm not dying from CF-I'm living with it. And not just living. I'm thriving.