Many of us take much for granted — breathing, for example.

Not so for Heidi Karn, a 19-year old Kansas University sophomore from McLouth.

She has cystic fibrosis.

Until after Heidi’s 16th birthday, her mom or dad, Tracie or George Karn, would pound Heidi’s upper torso with a pliable cup for about 45 minutes, twice a day, every day. The exercise jars loose the heavy, air-robbing mucus that forms in lungs, tunnels and cavities inside the bodies of those with cystic fibrosis.

For the past three years, Heidi has used a mechanical vest that administers the “thumping,” as she and her family call it.

“In my senior year (at McLouth High School) I got so used to it I’d get up at 5:30, set it for 45 minutes and go back to sleep as it was shaking me … really hard,” she said smiling. “My parents were amazed.”

Twice a day, every day, Heidi puts on a mask connected to a device — “We call it ‘our breathing’ at home,” she says — and inhales the drug Albuterol mixed with air and a saline solution. It helps relax the muscles in her airways.

Digestive side effects

Abnormally thick mucus clogs airways in the lungs and inhibits the flow of digestive juices from the pancreas to the stomach. Cystic fibrosis patients take Creon capsules, a pancreatic enzyme supplement, to digest their food.

“With something light, like a bowl of cereal, I take about five Creons,” Heidi said, “but when I eat like I’m supposed to, I’ll end up taking 25 or 30 a day.”

Because her body has a problem absorbing nutrients, she’s encouraged to eat food with high fat content.

“I know, I know, that doesn’t seem like much of a problem, but dining room food at the dorm is really pretty healthy — nonfat yogurt and 2 percent milk. … I usually drink a gallon of whole milk in a couple of days,” she said.

Heidi has access to a Lawrence kitchen where she “stuffs herself” after making tasty delights loaded with Hamburger Helper. She likes her potatoes deep-fried in Crisco and dipped in ranch dressing.

Gaining the “freshman 15” pounds was not a concern.

“My ideal weight is between 130 and 135 pounds,” she said. “Now I’m at 123, and I don’t want to get below 120 because I’ll look really skinny; it’s not good for my health and most importantly,” she said laughing, “my jeans won’t fit.”

The engaging teenager is 5 feet 7 inches.

Christmas tune-up

Heidi spent her last winter break at Children’s Mercy Hospital in Kansas City, Mo., having what she calls “a tune-up.” Tune-ups usually involve treating an infection that develops in the sticky mucus, a malady not uncommon in cystic fibrosis patients.

“I got an infection two weeks before break and dropped 15-20 pounds. … I wanted to hold off going to the hospital, but mother was pretty adamant about it,” Heidi said.

It was her second Christmas spent at Children’s Mercy.

“My grandparents came up, my aunt and uncle, my parents, my sister Michala. The nurses got a little room for us. Everybody was there.”

And Heidi received the pair of Birkenstocks she’d asked for.

“Just thinking back,” she said with eyes misting, “it was a crazy day.”

Support systems

When Heidi tells the story of her young life, she laughs and smiles a lot, talking about her days competing in basketball, track and volleyball in McLouth. She’s obviously touched when she recalls the open concern shown her by fellow McLouth students and teachers.

She speaks fondly of her parents’ encouragement and their gentle prodding that got her involved in athletics and other physical endeavors and of her goal of someday becoming a psychologist.

“I’d love to do patient advocacy at Children’s Mercy,” she said.

She doesn’t dwell on the four surgeries between third and seventh grades to remove nasal polyps, another result of cystic fibrosis. Nor does she elaborate about her many trips to Children’s Mercy. Cystic fibrosis patients continue treatment there as adults.

Chronic coughing is another characteristic of cystic fibrosis.

Smokers?

“Don’t get me started on that,” she said looking exasperated. “Are they crazy? Why would anyone want to ruin a perfectly good set of lungs,” she asks, waving her arms in the air.

When she’s not in class Heidi works in KU’s Office of Student Financial Aid. She’s worked there for a year and a half and plans to work there full-time this summer.

She plays piano, one Sunday a month, for the parishioners of McLouth’s First Baptist Church.

“I’ve played piano for 14 years, and it’s something that inspires me,” she said.

About the disease

Cystic fibrosis is the most common, fatal, inherited disease in the United States. It develops in babies when both parents are carriers of a defective gene. It causes an abnormal amount of heavy mucus to be produced in the respiratory and digestive system. In some European countries it is referred to as “Sticky Mucus Disease.” It’s not contagious.

In the 1950s, babies diagnosed with cystic fibrosis weren’t expected to survive past their teens. In the early 1990s, because of improvements in treatment, life expectancy for those with cystic fibrosis was 25 years. Today it is almost 40 years.

“I tell myself: OK, if I can keep myself healthy until we find a cure of some sort, just think how much nicer that would be. You know?” Heidi said.