The Many Colors of Cystic Fibrosis: Orange (Part 1)

I love viewing my journey with cystic fibrosis (CF) through the lens of Joseph’s Technicolor Dreamcoat. If you’re unfamiliar with the biblical musical, just know that Joseph is gifted a colorful coat. I’ve already explored ten colors. Next, lets talk about… orange.

Halloween and CF

Orange reminds me of Halloween, a tough but spirited time of year for me. The community is plagued with bronchitis and similar ailments, and due to my immune suppression, so am I. Often, these diagnoses confined me to my home or an isolated hospital room on Halloween.

Fortunately, my mother is very resourceful. She turned every Halloween into a special event, as if organized by a school or the county. To start, I always had a costume. Sometimes, this costume had to cover an accessed portocath due to a course of IV antibiotics. Other times, my costume had to disguise a feeding tube or my salty pit stains.

I always carved pumpkins, creating a pile of mucus tissues and pumpkin inners as I carved. I always had makeup. Sometimes, we had to work around a leaky nose, sensitive skin, or an oxygen cannula. Most notably, I would always trick or treat. My mom would collaborate with nurses and arrange a “trick-or-treating” experience. Sometimes, I would exchange candy with friends and family who visited me at home. I didn’t even like candy, but the inclusion and normalcy were valuable. Plus, the limitations provided a hurdle to overcome. This creative outlet made costume making and “trick or treating” that much more satisfying.

Exercising caution with CF

Orange is widely known for and used as a color of visibility because it’s easily seen by the human eye. Safety vests and traffic cones call attention to the person or area that requires protection. As a chronically ill patient, now immune suppressed due to my bilateral lung transplantation, I have to live a life of caution.

I avoid tap water and ice. I mask wherever I go. I avoid certain elevations due to a lack of oxygen. I sanitize my hands and my appliances throughout the day. The list goes on.

Did you know a hospital’s “code orange” usually represents hazardous materials or spills? It may also represent an aggressive individual. I’d say so events require a great deal of caution.

CF pill containers

Most of my pill cases are orange. From my diagnosis at age 5 to my bilateral lung transplant at age 26, I took approximately 60 treatments per day. Some of these therapies included inhaled treatments like Tobramycin (Tobi), antibiotics like Bactrim, and steroids like Prednisone. This is to name a few.

As a post-transplant patient, I take far less medication than I once did. Some of these include anti-rejection medications like Prograf (Tacrolimus), anti-virals like Valtrex, and vitamins.

Orange is the color of energy. It’s vibrant and exhilarating. In my next article, I will discuss food, spirit, entertainment, and awareness. Can you think of any orange items on your CF journey? Did you relate to any of the colors in my journey? Share in the comments!