The Many Colors of Cystic Fibrosis: Red (Part 1)
If you haven’t read my previous article, “The Many Colors of Cystic Fibrosis: Blue,” you need to know that I am a huge theater nerd. Joseph and the Technicolor Dreamcoat is one of my favorite shows and, as the token sick kid, I would always find alternative inspiration based on the dream coat’s colors.
Let's talk about red
Nothing good comes from the color red in a medical setting. I’d shed a tear every time my mom drove me to the hospital and we pulled up to the emergency room. The words that hung over the door were always a bold red. EMERGENCY ROOM.
As of 2019, I saw those words several times that week and I swore they got bolder and redder every time.
Red is the color of blood. My blood was shy and selfish when phlebotomists tried to draw my daily levels, but selfless and in excess when I was coughing it up. At one point, nurses had to draw my levels from my fingers using blood sugar sticks.
This event, which my mother and I considered a last straw, led to my port-a-cath. My port-a-cath, a longtime device for IV use whose mention always seemed more like a threat, turned out to be a godsend.
I had my port-a-cath in my chest for eleven years. It was removed during my bilateral lung transplant in 2019. Phlebotomists have been on an ultrasound journey with my scarred veins ever since.
Code reds would alarm at 3am when I was admitted to the hospital for weeks at a time. I researched what the different codes meant a few years ago. Code red can mean fire or cardiopulmonary arrest. Either way, it’s not the most soothing color.
On the other hand, the color red makes me feel empowered. I wore red to all of my job interviews, especially the ones where I had an accessed port-a-cath hidden beneath my blazer.
I worked at Princeton Theological Seminary for three years before going on long term disability. They were very accommodating. Still, I remember my last day of work.
I was sitting in my cubicle preparing for a team meeting. I was running an IV and a feeding tube bolus simultaneously. I had a peri nebulizer hanging out of the side of my mouth. The family-sized portion of pasta that I brought from home was getting cold. Admittedly, I couldn’t get any of it down anyway, so the image was just a placebo.
The beaker that I kept on my desk was growing more and more filled with blood as my nebulizer aggravated my lungs. “Glass half full!” I whispered to myself, amused.
My disease had progressed so gradually that the line between career and self-care became blurry and gray, except for the content of my beaker. That was exceptionally red. I texted my mom, “I don’t think I can do this anymore.”
That was my last day of work, but I rested knowing I pushed myself as far as my body could go.
While the dream coat inspired me to think about different colors and apply them to my illness, I'm hopeful that I'll interpret them in the traditional sense one day. Red will be a desirable color, like ketchup on French fries. Red will inspire love and romance. Then, I’ll present my husband with 65 roses and remind him that the emergency room days are behind us. Now, an apple a day really will keep the doctor away.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?