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Feeding Yvonne: Cystic Fibrosis Patient Must Eat To Live

Tribune photo by VICTOR JUNCO

Yvonne Hunter tends to her horse, Kitty Kat, and goats at her Dade City home. She dreams of becoming a veterinarian.

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By DONNA KOEHN

The Tampa Tribune

Published: July 10, 2008

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

And then comes dinner.

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

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

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

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

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

"I was practically raised there," she says.

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

Complicating matters, Yvonne's mother, Faye Hunter, has diabetes and high cholesterol. Most everything Yvonne is encouraged to eat is 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 her daughter.

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

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

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

The clinic has begun a special rewards program that gives children movie passes, gift cards and their favorite treats if they hit target weight gains from visit to visit. The younger children follow the color-coding of a traffic signal - green means they're doing well, yellow means so-so. Red means eat, eat, eat.

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

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

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

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

Yvonne is on 16 medications daily, including 24 pills designed to help her metabolize food. The pills had to be disguised in applesauce when she was a baby; if she bit into one, her mouth burned.

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

In addition to lessons, Yvonne spends her time on her Dade City farm 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 at the Pasco County Fair. She and her mother are planning a missionary trip to help Jamaican orphans in August.

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

In addition to the constant presence of mucus in her lungs, Yvonne also has developed painful arthritis in her knees, legs and shoulders, a common condition in CF. Because her weight gain has slowed, doctors are contemplating reinserting a feeding tube, which Yvonne fervently resists.

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

Sometimes her days are lonely, she admits; while she would love to start a support group for teens with CF, she knows that's impossible because the risk of catching a new type of infection is too great.

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

She recalls a camp she attended for CF patients, before doctors realized the potential for infection, at which many of the children bemoaned 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 body produces unusually thick, sticky mucus that can clog the lungs, obstruct the pancreas and stop natural enzymes from helping the body absorb food.

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

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

* 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 and treatment have improved and extended life for those with CF. While previously children with CF died before reaching school age, the average life expectancy has increased to age 37.

Sources: University of South Florida, The Cystic Fibrosis Foundation

Reporter Donna Koehn can be reached at (813) 259-8264 or dkoehn@tampatrib.com.

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