Rising at 5 a.m. and going through a regimen of medications and treatments before school begins a day in the life of Shelby Klug.
To her, it’s not a big deal, just something she has to do, has had to do for nearly a dozen years now.
“I love getting up early. I’m very weird like that,” Shelby says. “It’s just something I’ve gotta do. Just like, get it done, get it out of the way, go have fun.”
This is how the morning goes: “I take a shower and then I go downstairs. I get out my two inhalers, Albuterol and Flovent, and do two puffs of Albuterol. Then I put my saline in the nebulizer. Then I go over to the vest (a special vest that helps clear the lungs) and do the vest for 10 minutes with the saline. Then I may change over to Cayston, which is another nebulizer, and after 10 minutes of the vest and everything I’ll then do two puffs of Flovent. Then I eat, which is very important, and take five mls or whatever of Zantac, a Claritin, some enzymes (pancreatic enzymes for digestion) and then I get ready.”
The regimen is so ingrained that it takes only about a half-hour in the morning and a half-hour at night when she is not battling any infections or other issues. At other times, she may have to get a PICC line for intravenous medications.
“We counted, and it’s probably 25 to 35 pills a day, plus the nebulized meds and the liquid meds and the feeding tube. That’s a lot,” Sue says.
But Shelby takes it, like most things, as a challenge: “I can take five pills at a time…Sometimes with a tiny sip of water, sometimes with no water at all. I’m a champion!” (laughing)
Sue says the medications for CF would run between $250,000 and $350,000 a year if someone had to pay out of pocket for them. It’s still a significant expense even if you have great insurance, which she and her husband do, she says.
Because there is proportionally a small number of CF patients, the meds aren’t found at every pharmacy.
“I wish I could get them all from Sav-On Pharmacy,” says the grocery exec, “but I source meds from five different places. Some of them have to come mail order.”
Shelby mentions the importance of eating since CF patients can’t digest fats, and she’s also a champion in that arena. While many teenage girls are striving to eat very little, Shelby has to make sure she keeps her body fueled to continue to fight against CF.
“For breakfast, I will usually have two waffles with tons of syrup, butter, everything. For lunch I’ll have a sandwich, some chips, a Twinkie, cheese stick, candy bar and maybe a soda. Then for dinner, every day it’s different. I love macaroni and cheese; I constantly eat macaroni and cheese. I usually have it with some chicken or something, a piece of cake at the end. I like that part—I can eat whatever I want,” Shelby says.
Her mom adds that Marie Callender’s pot pies have been a recent “binge” food for Shelby.
Shelby also recalls being with her mom at the Western Association of Food Chains (WAFC) convention one year and not being fond of the scallops they were serving at one of the dinners. So she went back to their hotel room and got on the phone with room service.
“I got a bowl of mac and cheese, a bowl of spaghetti with sauce, garlic bread, chocolate cake, two orders of fries and a Sprite,” Shelby says.
She gets 1,500 of her required calories from a feeding tube as she sleeps.
Shelby is a huge fan of the band Green Day—demanding her mother know all the band members’ names and quizzing her on it—and there is a neat connection between the band and CF. Lead singer Billie Joe Armstrong has a son who is lead singer of a band called Emily’s Army. The band is named after a little girl named Emily who has CF.
A big CF walk is taking place in California in April, at Huntington Beach Pier, and Emily’s Army is going to play at the event. (Shelby is hoping Billie Joe will make his way there.) Sue and Shelby also are going to Las Vegas in April to walk with Team Vegas, who is doing a walk to benefit Team ShelbyUSA.
While back in the ’50s it was believed that CF patients shouldn’t exercise, that has been proven false. Exercise helps strengthen their lungs, which helps them manage their symptoms.
Shelby has earned the Presidential Physical Fitness Award each year at her school, something only a few achieve, and she participates in drama, winning a “Most Valuable Performer” award for her role in “Grease” as a Pink Lady.
Part of Shelby’s resilience lies in the fact that she doesn’t like to lose, her mom says.
CF, get ready to be history.
Feature photo: Shelby is a huge fan of the band Green Day. She displays one of her prized possessions: A book written about Green Day, “Nobody Likes You,” that was signed by lead singer Billie Joe Armstrong. He wrote to Shelby: “I like you!”[gn_note color=”#99ccff”]
How to Help
If you would like to start your own team or to donate to Team ShelbyUSA’s fight against cystic fibrosis, visit www.cff.org/chapters/losangeles/teamshelbyusa [/gn_note]