Caroline Lloyd was a sophomore in high school when walking up stairs started to feel more like climbing mountains.
As time passed, Lloyd’s body began acting stranger. Her heart would race, beat a couple hard, out-of-sync beats, then drop to an extremely low rate.
It wasn’t until one day in the kitchen when Lloyd’s mother, a school nurse, felt her daughter’s heartbeat herself, that the Lloyd family realized the high schooler had a serious problem.
Looking back, the signs were clear: A hip popping out of joint in kindergarten, countless injuries while playing sports, migraines and a sensitive stomach were warning signs of Postural Orthostatic Tachycardia Syndrome — more commonly known as POTS.
“Basically, my body doesn’t know how to body, and my brain doesn’t know how to brain,” Lloyd said.
Lloyd is one of between 1 and 3 million Americans living with POTS, a condition of the autonomic system that causes abnormally fast heart rates, according to Dysautonomia International.
Now, Lloyd, a 19-year-old George Washington University student, is working to take back her life almost three years after being diagnosed with the invisible illness.
“After a while, I started thinking about it. I don’t want to be angry at something I can’t control. Instead, I want to do what I can, and be as educated about my body as possible,” Lloyd said.
Puzzle pieces fitting together
As a child, Lloyd knew she was different.
The daughter of an enlisted member of the military, Lloyd lived in eight or nine new places. After moving frequently throughout her childhood, her family settled in Williamsburg when Lloyd was a freshman in high school.
Lloyd grew up playing sports year-round, but the seasons were peppered with injuries. While playing soccer for Jamestown High School, Lloyd was always wearing a joint brace of some sort.
Medical testing revealed Lloyd had a collagen disorder that affected her ligaments, allowing joints to pop out of place and be hypermobile.
But when Lloyd was a sophomore in high school, things got more serious.
“I was standing in the kitchen and my heart was racing like I was running a marathon,” Lloyd said. “Then I went to sit down and it went from too fast to too slow.”
The family went to the emergency room at a local hospital, but left without answers.
“My condition depends on my posture,” Lloyd said. “I was laying down while they were doing testing, and doctors kept telling my parents there was nothing wrong with my heart. But it happens when I stand up.”
Lloyd’s heart rate ranges from 40 beats per minute or lower, to over 200 when her heart races. A normal resting heart rate ranges from 60 to 100 beats per minute, according to the Mayo Clinic.
“The doctors said ‘maybe you’re just stressed,’” Lloyd added. “But I’ve always had POTS — it just wasn’t activated yet.”
After more testing at Virginia Commonwealth University Medical Center in Richmond, Lloyd discovered the truth behind her symptoms.
Puzzle pieces began to fit together, and the Lloyd family was finally getting answers about why their daughter had always had a sensitive stomach, migraines, poor circulation and concentration issues.
Doctors haven’t pinpointed the cause of POTS in Lloyd, but believe it could relate to her collagen disorder.
“Our hearts are running a marathon when our bodies aren’t,” Lloyd said.
Lloyd had just started her freshman year in college when her condition took a turn for the worse.
Last year, at 18 years old, Lloyd began fainting frequently. Her fainting spells occurred almost daily and in random, sometimes inopportune places.
The increased fainting prompted doctors to put a portacath — the same type of ports patients receive chemotherapy through — on Lloyd’s chest to provide her with intravenous saline to keep her hydrated.
Lloyd is on medical leave from college this spring and working to get her condition under control before resuming her studies.
“My health this fall was really poor, and I realized I needed to get it under control so I could be the best student I could be.”
To keep her symptoms at bay, the 19-year-old is taking blood pressure medication, steroids and medication for nerve pain. She is also receiving saline multiple times weekly.
A change of pace
Living with POTS has changed the way Lloyd lives her daily life.
Lloyd lives with roommates, has medical accommodations at school — including a dorm on a lower floor so she doesn’t have to climb stairs — and she no longer plays sports.
While Lloyd consistently feels symptoms of her condition, and her heart rate monitor on her watch shows her racing heart, she is living with an invisible illness.
“That’s one of the hard things about POTS,” she said. “It’s invisible, and only becomes visible when you’re passed out on the floor.”
Lloyd grew up with a busy lifestyle, however, so she still gets involved where she can.
While she’s on medical leave this spring, she is volunteering for the Jamestown High School musical. She also has participated in theater at George Washington University instead of playing sports.
When Lloyd started fainting almost daily, she started to consider ways she could reclaim her independence and maintain her own safety.
Her solution was a service dog, which would help her recover from fainting spells, notify others if she needed help, and possibly learn to recognize warning signs when she is going to faint.
Living alone is out of the question for the 19-year-old, because she could faint and be seriously injured.
The dog, which will likely be a golden retriever, is expected to cost around $25,000. Lloyd has already started fundraising for it.
“I’ve always been a really independent person, and never asked for help,” she said. “I tried to struggle through for a while, but I’ve realized sometimes I need help – and a service dog would do that.”
Want to donate to Caroline’s service dog? Visit her fundraising page for a service dog from nonprofit Educated Canines Assisting with Disabilities to find out more.