The Many Colors of Cystic Fibrosis: Clear
If you haven’t had a chance to read my previous articles, just know that I’ve always been inspired by the colors of Joseph’s Technicolor Dreamcoat. While I viewed them in a slightly different way than other children, through the eyes of a chronically ill patient, I always found them helpful on my journey with cystic fibrosis.
However, I wanted to start the year off with a color that did not appear in Joseph’s coat: clear.
“Your lungs sound clear,” is a phrase that I didn’t come to know until July 2019, one month after my bilateral lung transplant. Prior to that, my lungs always sounded like a rattling bag of potato chips.
“What color is your mucus?” my doctors asked.
Mucus is supposed to be clear. Any other color indicates infection. My mucus was usually yellow or green… or brown.
To stay one step ahead of my infections, my doctors tested samples of my mucus every month. I was resistant to most medications, so tests would indicate which infections were susceptible to which medications. I kept a collection of clear sample cups stocked by the hundreds in the guest room closet, and samples came easily after chest physical therapy and clearance.
Everyone knows that communication within the healthcare setting is like one big game of telephone. Upon any admission to the hospital, I’d identify as a cystic fibrosis patient getting a tune up, but three days in a random staff member will mistake me for a lupus patient.
I learned the importance of repetition. No matter who you speak to, state the basic information, and make sure you’re clear.
I love painted nails. I think they’re beautiful, but I would always have to leave one nail unpainted. Otherwise, the pulse oximeter would insist that I’m dead. I learned to love a new nail polish color. You guessed it… clear! With sparkles if I’m feeling sassy.
In television shows like Grey’s Anatomy, you may see a doctor prep a patient for defibrillation and yell, “clear!” Luckily, I never required defibrillation, but it’s one of the more traumatizing uses of the word.
“Drink plenty of water!” said every doctor ever. However, this isn’t the only clear liquid in my life.
After being diagnosed with gastroparesis in 2017, I added a lot of suppositories and stool softeners into my diet. I also have routine colonoscopies, the prep for which is unpleasant. I must drink clear liquids for three days.
As of January 5, 2022, the day of my diabetes diagnosis, sugar-free Sierra Mist is my clear drink of choice.
My journey with cystic fibrosis is no longer clear. There are surprises around every corner it seems. Still, the colors red, blue, green, and clear will remain a part of my journey.
What does the color clear mean to you? What colors represent aspects of your journey with cystic fibrosis? Let us know below!
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