CLARION, Pa. (AP) - Carey Dewalt was given two years to live - but that was six years ago.
She is now a thriving and happy student at Clarion University despite being diagnosed with idiopathic pulmonary arterial hypertension when she was just 15 years old.
Pulmonary hypertension is a rare lung disease that causes shortness of breath, dizziness and sometimes chest pain. If untreated, it is fatal. Dewalt’s case is idiopathic, meaning the exact cause is unknown.
“The average age of diagnosis is 45,” said Patricia George, assistant professor of medicine at the University of Pittsburgh Medical Center, who specializes in pulmonology.
“We all just got sick, and I just never got better,” said Carey Dewalt, a junior speech language pathology major from Meadville.
Dewalt excelled in athletics during high school, playing both volleyball and basketball. She said being an athlete is what led to a proper diagnosis.
“It can start out as people becoming short of breath when they exert themselves,” George said. “It can appear like other more common lung diseases.”
Such lung diseases include asthma and chronic obstructive pulmonary disease.
“There is no cure,” Dewalt said. “I had to quit playing sports.”
That’s when doctors put her on oral medication and gave her two years to live.
Her condition grew so bad that she eventually couldn’t get out of bed. Doctors decided to try giving her a central line.
“That line is a way to deliver a medicine directly into the bloodstream,” George said.
An IV connects to a vein near the top of the heart. The other end is connected to a small pump that contains the medicine. George described this central line as life-sustaining.
Luckily, this form of medicine worked for Dewalt.
The central line does require some maintenance.
“I have to change it every other day,” Dewalt said.
She must also clean it once a week. The entry site and pump can’t get wet, so both must be covered in the shower. Clothing is also an issue. Dewalt said she used to worry about whether or not the pump would show underneath her clothes.
“I used to try to hide it,” Dewalt said.
Now she said her feelings have changed.
“Honestly, I’m so blessed I have it,” Dewalt said. “I couldn’t imagine life without it.”
Although her condition greatly interfered with her high school career, Dewalt said it hasn’t negatively affected her college career much.
“I’m so thankful I’m able to go to college,” Dewalt said.
She had some complications with her previous pump. When the hose kinked, an alarm went off to alert her to adjust it. But because the alarm sounded like a cellphone, professors thought she was using her phone in class. Dewalt now has a new pump that gives her a longer period of time to fix the IV before an alarm sounds.
Dewalt said she hasn’t missed too many classes, but when she does miss, it’s for about a week. She said that professors have a hard time understanding why she misses class because she doesn’t look sick. Despite all of this, Dewalt remains positive.
“I really don’t look at my disease as a burden,” Dewalt said. “It’s a blessing to me.”
If not for her diagnosis, Dewalt said she would have never chosen Clarion University.
“I planned on playing sports somewhere else,” Dewalt said.
When she got sick, she started thinking about her future and realized she needed a job that wouldn’t be too taxing on her body. She said she grew to love the hospital setting.
“I just want to work in a hospital, provide for kids like (doctors) did for me,” Dewalt said.
That’s what led her to Clarion’s speech language pathology program.
Dewalt has a lot of support from family and friends. Her parents have been supportive of her going to college and being independent despite her condition. She also said her friends do not treat her like she is sick.
On her 21st birthday this spring, she had a complication with her direct line and was hospitalized. When she returned from the hospital, a big surprise was waiting for her.
“All my friends and roommates were in my driveway,” Dewalt said.
They brought her gifts and lent their support.
“They are the best medicine I could have,” Dewalt said.
Dewalt said she may need a double lung transplant in the future if her direct line stops working for her. She said she isn’t worrying about that just yet. She will graduate from Clarion with a degree in speech language pathology and audiology next spring and said she plans to attend graduate school.
“I just feel accomplished in what I’ve done so far,” Dewalt said.
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