By Maggie Menderski
Posted Jun. 8, 2014 @ 9:30 pm
BUFFALO — For Kaylee Edwards, the biggest high school test often was just getting out of bed in the morning.After she overcame that obstacle, the senior at Tri-City High School had to worry about making it through first hour and the possibility of fainting on the stairs.
A day without an episode was a good day, but early into her postural orthostatic tachycardia syndrome diagnosis, those days were few. The light-headedness and general fatigue plagued her junior and senior years.Still, it didn’t keep her from graduating Sunday with the rest of her Tri-City classmates.
“You cannot stoop down to where you just want to lay in bed all day,” she said. “I came to school every day, no matter what.”
For Edwards, her high school diploma comes with more effort than simply studying textbooks, taking notes and passing exams.
The trouble started with a harsh pain in her side during a November 2012 practice for the Springfield Lady Kings hockey team. The discomfort escalated to severe flu-like symptoms. Doctors knew it wasn’t mononucleosis, but they couldn’t immediately identify the problem.
After four months of emergency room trips, frightening tests and what-ifs, Edwards learned she had the syndrome, commonly called POTS. It causes a patient’s heart rate to speed up 30 beats per minute or more, according to the National Institutes of Health. That increase causes light-headedness, visual changes, extreme headaches, shortness of breath, poor concentration and general weakness.
“I can feel the blood just rush out of my head,” she said. “I turn pale white, and my heart rate moves crazy fast.”
She was instructed to eat more salt, drink more water and live with it.
But living with those symptoms as a teenager hasn’t been easy.
“It’s really hard to plan your day,” Edwards said. “I’ve had to change my whole entire life. Everything I do revolves around if something makes me feel bad and if something makes me sick.”
She quickly became a regular with both school counselor Sarah Heberling and the cot in her office. Her diagnosis meant bowing out of her junior prom and part of her hockey season. She couldn’t power through a full day of school, work, extracurricular activities and homework like her classmates could.
“There were days when she left during the first hour,” Heberling said. “She would come in here every day, not always with a smile on her face, but she was here. “
Edward’s mom, Dana, checked in regularly with text messages. Each day, she waited for a phone call to come pick her daughter up from school. Those first few months, the call always came, but it never stopped Edwards.
“No matter if she passed out three times the day before, she was still going to get up and go to school the next day,” Dana said.
Eventually, she learned that her body functioned better in the morning, so she flexed her academic schedule to go home early and sleep through the afternoon, cutting the five honors classes she had planned to take to three.
Edwards couldn’t have a job that kept her on her feet, so she baby-sat the latter part of the evening after she’d rested. Above all, she worked to keep a positive attitude. Negative feelings caused stress, which only made her weaker.
“She does not stop, and I think that’s what’s hard for her,” Heberling said. “She had to stop. She’s always go, go, go.”
Doctors predict she could outgrow the syndrome, and this year her symptoms eased. She made it all the way through her senior prom and the after-prom party, and she attended her senior trip to Nashville. Had those milestones happened her junior year, she wouldn’t have had the energy.
She plans to seek bachelor’s and master’s degrees and build a career around her love of working with children. She’s starting slowly, and in the fall she will pursue an associate degree at Lincoln Land Community College.
Edwards has always been a “list-maker,” and POTS was never part of the original plan. Mixing a college course load with her continued recovery seems daunting, but her ambition far outweighs her trepidation. No matter what POTS has done to her list of pursuits, success is still the goal.
“She knows what she wants, and she’s going to do whatever she can to get there,” Heberling said. “She has so much internal motivation that a lot of other students do not have.”