Cystic Fibrosis Patient Must Eat To Live Posted

Tag : nurse clog


DADE CITY - Breakfast means bacon and eggs, toast slathered withjelly. Five minutes later, a sugary snack cake. Then a can ofSpaghettiOs. Then maybe another snack cake before lunch, whichmight be bologna and cheese sandwiches, heavy on the mayo. Thenpopcorn, apple slices smeared with peanut butter, a PB&J.

And then comes dinner.

Cystic fibrosis keeps Yvonne Hunter, 15, of Dade City on a constantquest for calories.

"You have to eat more and more, until you feel bloated and likeit's not gonna stay down," says Yvonne, whose sly asides reflectthe sardonic wit of a G-rated Janeane Garofalo.

"And then there's Boost, the nutritional drink that goes down likemud."

CF is a hereditary disease that affects organs and glandsthroughout the body. Thick mucus clogs the lungs, leading tolife-threatening infections. Mucus also obstructs the pancreas,which interferes with the body's ability to absorb nutrients fromfood.

Doctors were concerned that Yvonne had the disease before birth,and tests soon after confirmed it. She was in the hospital morethan she was out for her first three years of life, withinnumerable close calls.

"I was practically raised there," she says.

CF patients are at risk for malnutrition and anemia, and frequentlyhave no appetite. Even while taking in 3,000 calories a day, Yvonnestruggles to maintain 94 pounds on a 5-foot-1-inch frame.

Complicating matters, Yvonne's mother, Faye Hunter, has diabetesand high cholesterol. Most everything Yvonne is encouraged to eatis risky for her mom, leading to dueling menus and complex cooking- and a tiny touch of envy.

"I wish I had that part of your disease," Faye Hunter tells herdaughter.

"And I really don't like all that stuff," Yvonne says. "I lovevegetables and fruit."

Since birth, Yvonne has been under the care of the Cystic FibrosisClinic at the University of South Florida, with a team thatincludes a pulmonologist, pediatrician, nurse practitioner,dietician, social worker and respiratory therapist.

In addition to seeing patients on campus, the team travels toLakeland, Sarasota, Fort Myers and Naples.

The clinic has begun a special rewards program that gives childrenmovie passes, gift cards and their favorite treats if they hittarget weight gains from visit to visit. The younger childrenfollow the color-coding of a traffic signal - green means they'redoing well, yellow means so-so. Red means eat, eat, eat.

In a pilot study of the program conducted at the clinic, 70 percentof 21 patients experienced improvement in their body mass index.

Nutritionist Nancy Newkirk met Yvonne at the clinic recently with aworried frown - one of her favorite patients was down 2.2 pounds.

Yvonne explained that she forgot some of her medicine on a recentcamping trip.

"Oh, that's pretty common for teenage patients to 'forget' theirmedicine," Newkirk says, making quote marks with her fingers around"forget."

Yvonne is on 16 medications daily, including 24 pills designed tohelp her metabolize food. The pills had to be disguised inapplesauce when she was a baby; if she bit into one, her mouthburned.

Caring for Yvonne is a full-time job for her single mother. Theybegan home-schooling after Yvonne managed to attend just six daysduring two quarters of school. Now they have a full year to log 180days of schooling.

In addition to lessons, Yvonne spends her time on her Dade Cityfarm tending to assorted animals, including her horse, Kitty Kat.

"She is blind, but she is sassy," Yvonne says.

Yvonne also is a Girl Scout, creates jewelry and shows animals atthe Pasco County Fair. She and her mother are planning a missionarytrip to help Jamaican orphans in August.

"I believe my mom and I can help them in a way that no one elsecould," she says. "Because we have been through so much, we cantell them how God can bring you out of things that seem impossiblefor man, but not for God."

In addition to the constant presence of mucus in her lungs, Yvonnealso has developed painful arthritis in her knees, legs andshoulders, a common condition in CF. Because her weight gain hasslowed, doctors are contemplating reinserting a feeding tube, whichYvonne fervently resists.

She remembers it as painful and limiting her play when she wasyounger. When it came time to tend to it, "I used to hide," shesays.

Sometimes her days are lonely, she admits; while she would love tostart a support group for teens with CF, she knows that'simpossible because the risk of catching a new type of infection istoo great.

In the 1950s, death from cystic fibrosis was common beforeelementary school. Now patients live into their 30s and 40s. Yvonneexpects to remain at home as an adult but wants to become aveterinarian. Maybe someday, when her practice is thriving, she'llbuy herself a little house, she says.

She recalls a camp she attended for CF patients, before doctorsrealized the potential for infection, at which many of the childrenbemoaned their fates.

"Some kids said, 'What's the point? I'm gonna die.' I said, 'Well,while you wait, you might as well do something with your life.'"

About Cystic Fibrosis

* Cystic fibrosis is an inherited chronic disease in which the bodyproduces unusually thick, sticky mucus that can clog the lungs,obstruct the pancreas and stop natural enzymes from helping thebody absorb food.

* CF affects about 30,000 children and young adults in the UnitedStates.

* About 3,000 babies are born with CF each year in the UnitedStates.

* CF primarily affects people of white, northern European ancestry.

* One in 25 people is a CF carrier.

* Although there is no cure at this time, advances in research andtreatment have improved and extended life for those with CF. Whilepreviously children with CF died before reaching school age, theaverage life expectancy has increased to age 37.