The Many Colors Of Cystic Fibrosis: Green
"Joseph and the Technicolor Dreamcoat" is a very popular musical this time of year. I always loved gazing at the coat in admiration and wondering how those colors applied to my journey with cystic fibrosis.
Let’s talk about green
I never associated the color green with the medical field. Blue walls, red signs, and yellow wrist bands are the go-to aesthetic. However, after reflecting about the time I’ve spent in the hospital, I realized the color green has played a large part in my care.
My care team would ask several routine questions during my morning assessment. One of the first questions was, “What color is your mucus?” The correct answer is clear. At the worst, yellow. Before I’d answer, I would look down at the floor, knowing my answer was the wrong one. “Green,” I’d mumble.
Green mucus indicates a nasty infection. It meant I needed a tuneup, a two week long hospital stay meant for IV antibiotics. Or, it meant a home care nurse would be visiting me every night for fourteen days.
It’s a known fact that medical care is costly. My mother was burdened by the cost of my medical equipment, insurance, food, etc. My vest, a tool used for chest percussions, cost $16,000. Our insurance wouldn’t cover it. It took her years to pay it off.
My routine hospital stays made insurance battles complicated, and clinic co-pays would add up around the holidays. Not to mention, commuting to and from the hospital was costly, and the food bill was astronomical thanks to my high calorie diet.
The moment hospitals decided to be more environmentally friendly, my tuneups became complicated.
Hospital equipment such as respiratory treatment tools had to be customized to my needs. Nurses would introduce me to a new policy where nebulizers are recycled or washed and reused. I’d remind them that cystic fibrosis patients are immune suppressed and require fresh nebulizer cups and pipes for every treatment.
Chaos would ensue as nurses scrambled to find a brand-new nebulizer cup and the head nurse for the sign off. I, the girl in the isolation room, wasn’t the “easy” patient anymore.
The dieticians liked to push foods like onions and pineapple. Unbeknownst to them, these foods bred and worsened CF-specific infections like burkholderia cepacia and resistant pseudomonas. Turns out, that bucket of KFC was doing a little less damage.
Unfortunately, cystic fibrosis and nature don’t mix either. Acquaintances who weren’t familiar with my disease would advise me to live more naturally - CBD, incense, hiking, a relaxing swim in a lake.
They didn’t understand that its harder for me to breathe over a certain height, so hiking up a large mountain doesn’t guarantee that “second wind” that exercise enthusiasts get. Post transplant patients such as myself are advised to stay away from tap water, soil, spas, and things that breed infection. Needless to say, I would not have done well in the hunger games.
Journey with cystic fibrosis
Turns out, the color green can be seen throughout my journey with cystic fibrosis. Traditional green awareness ribbons represent organ donation, a milestone that I will cherish forever. Traditional green ribbons also represents liver and kidney disease, two conditions that I hope to avoid.
Even my oxygen tank, who I lovingly named O2D2, was a beautiful shade of silver and green. I wonder how many green items I can think of this holiday season as my journey with cystic fibrosis continues.
What does the color green mean to you? What colors represent aspects of your journey with cystic fibrosis? Let us know below!
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