Ball State University student April Johnson bravely battles cystic fibrosis

View PDF | Print View
by: Guest Total views: 370 Word Count: 903   

This gray and snowy afternoon, the 22-year-old Delta High School graduate and Ball State University nursing student greeted visitors at her door with a warm smile that chased the cold away, then talked about her life as a cystic fibrosis patient.

"I've never ever felt threatened by it, but the last couple years have been kind of scary," said the bespectacled young woman with the long brown hair, the hint of an occasional soft gurgle in her voice. "But I'm kind of mad about it, because it could have been prevented."

Born with the genetic condition, which causes a sticky mucus to build up in the lungs and digestive tract, early on April got in the habit of rising above her disease.

"I was a Riley (Hospital for Children) kid all through school, and was pretty good," she said, noting that she even pursued a passion for dance through those years, an unusual activity for a cystic fibrosis patient, but something that helped her physical condition.

It was with her mother's blessings.

"I just feel like you have to let them live," said Jill Johnson, who works as a hair stylist, speaking from a kitchen where the fragrant scent of the meatballs she was cooking permeated the air. "You have to let them try everything."

You needn't talk with Jill for long before understanding where April gets her spunk. It becomes especially obvious when April discusses the crisis that began two years ago, when she lost the Medicaid benefits that had paid for her medications and treatments.

The reasons are as convoluted as only federal bureaucracy can make them, but in effect, she was doing too well to qualify for them. In 2005, in fact, her lung capacity had been measured at 70 percent, not far from what most folks would consider normal.

It's interesting to note that April's older sister, Debra, who also suffers from the disease, had lost her benefits at one point, too, then had them restored when she became pregnant.



"April was told, quit school, quit your job, get pregnant and then we'll help you," Jill complained. "Although you have a fatal disease, you're too healthy."

That didn't last, though, since losing her benefits resulted in a precipitous slide.

"Since I was taken off, it began a slow deterioration of my condition," April explained with a matter-of-fact air, noting that for two years she could no longer afford the medicines, treatments and doctors she needed.

Her lung capacity, once at 70 percent, dropped to just 21 percent. That made her eligible for a lung transplant, but she also had lost so much weight, a shocked physician told her she might not have enough flesh and muscle tissue left for the stitching that it would require.

For Jill, it made for an unforgettable encounter.

"You know when your doctor is shaking when she's talking to you, that it's not going to be good news," she said.

On a couple occasions when she could not breathe, April sought stop-gap relief at Ball Memorial Hospital, but she continued to deteriorate. It wasn't until September, when the IU Medical Center admitted April to its cystic fibrosis clinic, that things began to improve.

Besides a new level of treatment, she was enrolled in assistance programs for medications. These days, April's weight is up. Even more significantly, so is her lung capacity.

"I'm now at 40 percent," she said, recalling when it was poor. "I'm inching my way up to moderate."

With its help, she is also in the process of regaining her Medicaid coverage, though she fears that if her lung capacity climbs above 50 percent she could be dropped again.

Still, having witnessed the arrival of 2010, she's not complaining.

"2009 really sucked," she said, chuckling. "It really did."

Now, with her gains, she and her mother look at her treatment as a delaying action, one that with every day passed allows the medical powers-that-be to improve the odds of successful lung-transplants.

"Why not put it off as long as possible?" Jill reasoned.



These days, as always, April goes through the nebulizer treatments without complaint. She takes nourishment at night through a feeding tube, undergoes percussion treatments with a special vest hooked up to an air pump to clear her airway, and medicates herself with the drugs that cram an entire drawer in her bedroom's dresser. She also exercises, hitting the treadmill owned by her father, Chris Johnson, three times a week.

What's her secret to dealing with cystic fibrosis?

"I don't know how not to deal with it," said April, a constant dean's list honoree who hopes to head back to school soon to resume her nursing studies.

Why nursing?

"I don't want to do anything else," she said. "I've always been interested in it, because I've been in the hospital so much."

Meanwhile, even speaking from her spot back in the kitchen, Jill's admiration for her daughter was obvious.

"This one here fights for every single day, and I respect that," she said. "She's always been a cut above. ... She's a kid that has a fatal disease, but she hasn't let the disease rule her life. She rules her life."

Contact John Carlson at 213-5824.

Additional information:

HowStuffWorks "How the Digestive System Works"
Digestive Tract
Bacterial Action In The Digestive Tract
Your Digestive System
Dog Digestive System Greenpeace Canada weblogs
Business Spectator Blogs Food Beverages The Digestive Tract
Digestive Tract Diagram
Gross Anatomy of the Digestive Tract of the Hawaiian Monk Seal
Digestive tract Flash simulation, Animation, Illustration
Health Screening Packages
http://www.thestarpress.com/ar...

Related "Digestion":

• Soy in Illinois prison diets prompts lawsuit over health effects
  CHICAGO - Soy-enhanced chili mac, turkey patties ...
• Turn that body upside down
  Inverted postures tone the vital organs, stimula ...
• Natural Bone Builders
  There are many natural ways to support bone heal ...
• Many factors can contribute to pancreatitis; changes in diet may ...
  My son recently had an attack of pancreatitis and ...
• Staying cool while keeping a warm heart
  It seems like summer should be over by now, hasn' ...

Comments

Add Comment