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One breath at a time: Snoqualmie teen shares insights from her battle with Cystic Fibrosis
I have learned many life lessons in my 16 years: “What doesn’t kill you makes you stronger,” “What goes around, comes around,” and, of course, “Don’t run with scissors.” Perhaps the most valuable lesson, though, was one I learned from a close friend: “Enjoy the little things.”
I was born with cystic fibrosis (CF), a genetic, non-contagious chronic disease of the lungs and gastrointestinal system.
Prior to discovery of the disease in 1938, children born with cystic fibrosis were extremely lucky to live to be one month old. Doing some research on this once-fatal disease, I came across an eerie warning published in 18th century German literature: “Woe to the child who tastes salty from a kiss on the brow, for he is cursed and soon must die,” (referring to the excessive loss of salt in CF patients). But thanks to the many medical advancements of just the past two years, the average life expectancy of CF patients has risen to almost 40. And it’s rising!
For the first 14 years of my life, I was fooled into thinking that my disease had the power to define my very being. Recent breakthroughs, however, have helped me uncover an overwhelming sense of hope for my future. Hope that one day I will be able to live on the beach in Southern California. Hope that one day I will have children of my own. Hope that one day, there will be a cure.
Unless you know my story, you’d see me as a typical teenage Snoqualmie girl. When I’m not at kickboxing practice or studying for a math test, I’m usually hanging out at the local pool, at Uncle Si’s munching on some pizza, or with my friends scoping out the newest fashion trends at Nordstrom. I am all that, but with a twist and a lot of challenges.
Puff, puff. Rumble, rumble. Gulp, gulp. Ahh, the sounds of my morning and nighttime.
First up, the puffs. I squirt a vial of Pulmozyme, (a mucus-thinning drug developed specifically for the CF population) into a nebulizer cup. I connect one end of a thin hose to the bottom of the cup, and the other end to the top of the nebulizer machine.
When I flip on the power switch, air begins flowing through the tube and into the cup, creating a delicate mist that I inhale deeply into my lungs.
Now for the rumbling. I strap on a bulky, life vest-like garment and attach two large, plastic hoses to either side. I turn on the 23-pound airway clearance machine, inflating the vest and making it vibrate rapidly. The ultimate goal of this contraption? To loosen, and hopefully dislodge, some of the dry, sticky secretions that fill my lungs.
Lastly, the gulping. I toss a handful of pancreatic enzymes in my mouth and swallow them down with a high-calorie supplement. (CF patients tend to be on the skinnier side, simply due to the amount of energy their bodies burn in an effort to keep their lungs healthy.)
Because CF also causes pancreatic insufficiency, I have to take enzymes with every meal in order to digest the food. Unfortunately, even with the help of the enzymes, CF patients only absorb about half of what they eat. For example, I try to take in more than 3,500 calories a day — ice cream, protein bars, cheese, anything with lots of calories — yet it’s still a struggle to gain weight.
I finish off the drink with another handful of various pills, and from a health standpoint, I’m ready to start the day… or go to sleep.
But no matter how much I pray they will, my treatments don’t always keep me healthy. Whenever I contract a typical CF bug, such as a bacterial infection called pseudomonas, I usually wind up in Seattle Children’s Hospital for a “tune-up,” a two- to three-week-course of strong IV antibiotics.
More than anything, these stays are frustrating. Machines are always beeping, the beds are uncomfortable, nurses wake you up in the middle of the night to check your vital signs, and the food… Don’t even get me started.
It’s not the hospital stays for tune-ups that scare me. It’s what the future holds for me as a middle-aged CF patient that sends a chill down my spine. Even with advancements in medicine and technology, many older CF’ers end up with their name on the lung transplant list because their sick organs can no longer fight the battle against this nasty disease.
But the fact is, no one knows how long they have left — so why not do what we can to make the most of our time?
I’ve taught myself not to dwell on the negatives, but rather to be thankful for every day that I have on this planet. It sounds cliché, I know — but I truly am thankful.
As much as having cystic fibrosis burdens me, I wouldn’t want my life any other way. Much of my appreciation for life has come from my experiences with CF. My disease has made me the strong, determined young woman that I am today, one who will never give up the fight. Life is good.
Your donations to the Cystic Fibrosis Foundation which funds education and research, in combination with the miraculous works of the scientists and doctors in the CF community, are the key to conquering this horrible disease. For more information on how to donate, upcoming fundraisers, or CF itself, visit www.cff.org.
• Kaylee Alvarado, 16, is the daughter of Kristie Johnson of Snoqualmie and Dion Alvarado of Issaquah.