The Many Colors of Cystic Fibrosis: Orange (Part 2)

Let's get back into cystic fibrosis (CF) and the color orange. In my last article, I discussed Halloween, cautious living, and medication. Let’s keep talking about the color orange.

CF and soccer

One of my earliest memories is playing soccer. Parents would take turns bringing snacks to our soccer games. I couldn’t smell much of anything (and still can’t) due to chronic sinus infections, but I could smell those oranges. I also loved filling my lungs with clean air after half time. It was a privilege to participate in a team sport with children my own age.

The sport provided airway clearance, routine, normalcy, and an opportunity to socialize. Back in the 1990’s, my mom was advised to keep me out of sporting events and group activities due to infection prevention. While I remain immune suppressed and must be wary of respiratory infections, social events like soccer continue to drive my compliance.

CF and entertainment

Orange is known as the color of amusement or entertainment. Tigger, the epitome of amusement from Winnie the Pooh, was one of my biggest inspirations during my transplant recovery. With each “T-I-double gah-er” and the energetic bounces that proceeded, I was encouraged to get back into shape.

To preface, there’s a lot of rehabilitation that goes into transplant recovery. At some hospitals, transplant patients are required to take part in physical therapy (PT) prior to their surgery. I was one of the lucky few who did not have to take “prehab.” This was both good and bad. I’m thankful that I had the opportunity to rest. Had they seen my lack of stride, I may not have even qualified for transplant.

On the flip side, I was extremely fragile prior to my bilateral lung transplant surgery in 2019. I even took part in a fragility study, whose results concluded I had a very low BMI. I weighed a mere 79 pounds, had an FEV1 (lung function) of 11%, and could not complete a 6-minute walk test (a common test and requisite for lung transplant). What if I wasn’t strong enough to recover post-transplant?

Luckily, I awoke from surgery and was on my feet within 72 hours. I had 6 chest tubes among other devices, so the walk was somewhat painful. However, I quickly graduated from rehab in the weeks that followed. Pulmonary rehab included treadmill, weights, exercises for flexibility, and fine motor skill restoration. I was very hunched to compensate for the pain, staples, stitches, and healing wounds.

With each mile walked on the treadmill, I thought of Tigger. I’d stand up straight and imagine the energy that I had prior to my decline. 

“You did well today, Nicole! What was your number on the borg scale?” the PT would ask. “One, very easy!” I’d reply. “See you next week! Ta-ta for now!”

Other CF connections

Awareness ribbons that fall into the orange category include M.S., hunger, leukemia, lupus, and S.P.D. I know a handful of fibros and cysters who bear the burden of chronic illnesses such as these. Velma, the book-reader from Scooby Doo, sports her orange sweater, and eyeglass-related antics serve as a reminder to eat foods that are rich in vitamins A, B, B6, and C. Perhaps a large orange carrot would suffice. Autumn leaves serve as a warning for flu symptoms and other viruses. Off Bug Spray, famously orange, helps prevent bug bites and assists with infection prevention. Home Depot, also famously orange, smells like pine, a scent I could identify even without the assistance of Trikafta.

In the end, there is so much lurking beneath the surface of the color orange.

Can you spot the color orange in your cystic fibrosis journey? Share below!