Now What, CF?

Valerie Pettit, 23, is from Tupelo, Mississippi. She suffers from cystic fibrosis, but has, by far, exceeded what doctors have suggested regarding her life span. Photo by Randall Haley.

Some patients have compared it to breathing through a straw. Others have dreaded the horrid clinical visit that reveals the information that will either bring them to tears or a joyous revelation. Twenty-three-year-old Valerie Pettit says cystic fibrosis (CF) won’t stop “me from living my dreams.”

Her pale, light complexions reveal her cheerful spirit, while red hair reflects her fiery passion to overcome this ailment. Strong-willed and stubborn, Valerie refuses to listen to doctors as they attempt to place a number on the days of her life.

“When I was born, they said I wouldn’t live past five years old,” Valerie said. “And then they said I wouldn’t live to graduate high school.”

Valerie, who is from Tupelo, received her high school diploma in 2010, her bachelor’s degree in business administration from Mississippi State University in 2014, and plans to attend law school when she learns more of how a new study drug will affect her health.

From the time she wakes up until she lies her head down for rest, she is conscious of her condition and performs as many exercises as possible to improve her health.

Valerie takes about 15 pills every morning, medications which promote bone health, increase appetite, and decrease acid in the stomach, among many others. She must take a pill with each meal to help her digest her food.

According to the Cystic Fibrosis Foundation, CF is a genetic disease that primarily affects the lungs and digestive system. The life-threatening disease is caused by a defective gene and its protein product, which causes the body to produce a thick mucus that clogs the lungs, obstructs the pancreas, and stops natural enzymes from helping the body break down food and absorb vital nutrients.

Valerie must take breathing treatments two to three times a day to increase her lung function. Along with her breathing treatments, Valerie straps on a vest, which helps the mucus surface. She described the strenuous vest treatment as uncomfortable yet necessary.

A majority of CF patients must attend monthly checkups, but Valerie has remained “stable” enough to go for a clinical visit every three to four months. When she was a child, the average number of times she would be admitted for a hospital stay, which generally lasted 10 days, was six times a year. That number has decreased to once a year for Valerie.

Though she is doing remarkably well now, the family experienced one of the biggest scares of Valerie’s lifetime in May of 2014.

The family was on their way to Atlanta from Tupelo to attend a Braves game, and they stopped in Birmingham for Valerie’s blood to be drawn so doctors could see how her antibiotics were affecting her.

“We went to Atlanta that Tuesday night,” she said. “Wednesday afternoon, the doctor called, said, ‘Get to Birmingham, you’re in kidney failure’.”

Valerie was in the hospital for about 15 days. She was put on dialysis four or five times during her stay.

“That was the worst pain I’ve ever had in my entire life,” she said. “We really thought I wasn’t going to make it. I shouldn’t have made it.”

Valerie said her mother is her biggest encouragement. She is who drove 100 miles per hour to get Valerie to the hospital in Birmingham, she is who is by her side in every hospital stay, and she is who is there for almost every checkup. As Valerie said, “She is there 99 percent of the time.”

And although her mother is there most of the time, her brother, Allen Pettit, 24, does his share of help and support.

“As her brother, CF basically puts huge amounts of stress on me everyday,” Allen said. “I ask myself everyday, ‘Why her? Why could it not be me’?”

Allen said that he encouraged Valerie to share an apartment with him in Starkville while they were both attending classes at MSU.

“We were roommates so that I could watch her and make sure she was healthy,” Allen said.

Allen recalls a moment when he and Valerie were younger.

“When she was in children’s hospital (Le Bonheur), we used to get her out of the room and roll around in wheel chairs to boost her spirits,” Allen said.

Valerie has many friends who suffer from CF who provide her with courage,as she does them.

Unfortunately, Valerie can’t come in close proximity with these friends because of the frailty of CF patients, who are extremely susceptible to common illnesses such as the flu or even a simple head cold, which greatly weaken their immune systems.

Molly Reynolds, also a CF patient, has only spoken with Valerie through Facebook. She said, “Valerie has encouraged me in many ways, but mainly through her perseverance to remain healthy (and) positive, even when CF tries to knock her down.”

Another friend of Valerie’s, Amberly Knowles, has never met Valerie in person either, but the two keep in close contact through texting as well as social media.

“Valerie seems to handle her CF very well,” Amberly said. “When she gets a bad report, she tries to prove the doctors wrong.”

Friends typically see Valerie as being strong, but she confessed that she, too, gets down at times. However, with the progress researchers are making in finding a cure, there have never been more exciting times for CF patients.

Valerie said researchers have now found a medicine that dramatically improves lung function for four percent of the CF population. Although the medicine won’t help her particular case, she has hope that a cure will be discovered in the next five years due to all the information researchers have found.

Valerie finds it vital for CF patients to be active as a means to help their lung functions.

“When other parents come and talk to us,” she said. “I say, ‘be sure and keep the child active as long as you can. Do sports, do anything’.”

Valerie played every sport possible while she was in high school, and said her lung function decreased while she was in college, the only time she was not playing sports.

Valerie enjoys a trip to see the Atlanta Braves at least once a year to boost her spirits, travels to the beach for vacation as often as possible because the salty air helps her lungs, plays church league softball, has plans to get married in June, and continuously posts to Facebook to keep her friends and fans updated on her CF journey. Valerie will fight until the day a cure is found.

Those interested in supporting CF patients can learn more about the illness or donate to the Cystic Fibrosis Foundation by checking out their website.

“Now what, CF?” Valerie asks. “Here’s to kicking CF’s butt.”