My CF Story

It only took 23 years, but I have just passed the denial stage of my Cystic Fibrosis battle. I’m only kidding, but I wasn’t too into the education, blog reading, 5k walking side of my CF for a long time. I stuck to the belief that out of sight was out of mind. The less I did my breathing, the less I had to be sick with CF. That being said, I know I need to change my habits.  However, as you are well aware, parents, doctors and PFT results don’t always provide enough motivation.

That’s why I am writing a blog. I am not writing to brag about my great health, complain about my stomach aches or ask the world to feel sorry for me. I’m simply looking to involve myself more heavily in the social networking, educational, doing my breathing treatments side of CF. I hope that involving myself in the CF community will force me to carry the burden of accountability.

My first blog experience was with Ronnie Sharpe’s blog and boy was it eye opening! I felt like I was reading the diary I never had the courage to write. I opened a vast portal of information, shared experiences and unconventional remedies that I never knew existed. He understands the shared purpose of promoting healthy CF’ers, which leads him to openly sharing his experiences in an amazing way. So before I move any farther, thanks Ronnie and Mandi and of course, congratulations on your baby!

I was diagnosed with CF at birth and had a number of health issues. I had meconium ileius, which although I don’t completely understand, I know it’s disgusting.   I had a number of surgeries and spent the first 7 weeks in a drug infused state. 15 years and a million enzymes later and I’m your typical annoying teenager. I play tons of sports and tell everyone that my scar was the result of a shark bite.

Near the end of high school, I had my first of 10+ (lost track) bowel obstructions. They involve lots of pain killers, a tube down your nose and in my case, lots of complaining. Fortunately, I have an amazing network of family and friends, including a mother who has spent every night in the hospital next to me and a supportive girlfriend who encourages me to write, do my treatments and run half marathons.

Overall, I have calculated my total days in the hospital to be just under a half year of my life. Although hospital stays are miserable, the world is brighter when you emerge; Food tastes better, sports are more fun and your experiences force you to take time to appreciate the little things.

After two bowel obstructions in a row, I had “exploratory surgery”. This unorthodox procedure is comparable to that time you were exploring around your fridge for something that smelled bad. Seven hours later and I was as good as new. To my understanding, my intestines looked like dried up spaghetti and had to be surgically untangled. Hungry yet? Another two weeks down the drain, but I learned a lot about myself and came away with a new appreciation for loved ones. Therein lies the theme of CF life, although there may be some suffering, if you can overcome it, you become that much stronger.

Around the time of this onslaught of hospital visits, I got my nebulizer and a host of other medicines. I’ve played sports my whole life and have had very little lung trouble. Although my PFTs aren’t great, my lungs have not held me back in any aspect of life! I understand that if I’m not diligent from this point forward, I will have a hefty price to pay.

That brings me to my current spot in life. I finished college and got a job in the marketing world at a government agency. I do marketing for bicycle programs. This fortunate turn of events keeps me in shape, as it evolved into my most recent hobby of cycling. I want to use this blog to talk about the value of exercise, my ongoing experiences with CF and to ask for help and guidance along the way.