For most, when you don’t feel well, a trip to the doctor’s office usually ends in a diagnosis.
For Katie Boone, it took years of suffering before she was able to manage an unusual medical condition.
“I had pain all over my body and basically would stay in bed most of the day,” the 21-year-old explained.
She described an erratic, seemingly unrelated set of symptoms that started when she was 12 years old.
“My heart rate could be like 60 sitting down but then spike to like 170 when I stand up,” Katie said. “I get really dizzy and feel like I'm going to fall down a lot."
The pain and fatigue were debilitating. On bad days, Katie was unable to walk and had to use a wheelchair. Her symptoms often left her bedridden.
“We went to the GI doctor," said Debbie Boone, Katie’s mother. "We went to the neurologist. We went to the heart doctor. We went to the immunologist ... As a parent, you just keep digging because it's your kid and you're watching them suffer."
Frustrated that no specialist could explain why Katie was unwell, Debbie was determined to get answers.
The medical mystery led Katie’s family to the Mayo Clinic. There, a team of doctors discussed Katie’s symptoms and ultimately performed what’s called a "tilt table test," which measures gravity's influence on the cardiovascular system.
During Katie’s test, her blood pressure dropped and her heart rate spiked. Doctors diagnosed her with postural orthostatic tachycardia syndrome, also known at POTS.
“The blood is pulled away from their heart by gravity,” explained Dr. Kevin Wheelan, a cardiologist at Baylor Scott & White Health. “Their brain doesn't recognize that properly and sends the normal signals to squeeze the blood vessels.”
POTS is an autonomic, or involuntary, condition that is chronic and complex. It has no cure. Many POTS patients suffer for a long time before getting an accurate diagnosis.
“Honestly, it was another label,” Debbie said. “I didn't really want to label. I really wanted a road map.”
Debbie researched and started following blogs and support groups for POTS. She ultimately developed a three-part recipe to manage Katie’s symptoms. The main ingredient is salt.
“Even before I had POTS syndrome, I loved salt,” Katie admitted.
Katie puts salt on everything she consumes, including fruits and bottled water.
“[POTS patients] usually have a problem with their blood pressure being too low,” Dr. Wheelan said. “The added salt helps boost blood volume.”
The amount of salt Katie adds to her food would render it inedible for most people. Underneath that salt, her meals largely consist of lean meats and plenty of vegetables.
“We just eat balanced healthy food,” Debbie said. “She salts the heck out of it."
Generally speaking, doctors warn against diets high in added salt. Dr. Wheelan warned that POTS patients need to find an amount that works for their individual case.
“Basically I tell mom if I can't see the salt on the food it needs more,” Katie said.
Once their symptoms are under control, Dr. Wheelan said 85 percent of POTS patients go on to live a normal life. The remaining 15 percent may need to use medication to manage the condition.
The other two pillars of Katie’s management plan are a lot of water and daily workouts. She regularly goes on 5K runs in and around the metroplex.
“She teaches us something every day,” Debbie said. “Even with all of our challenges, she smiles and she's happy and she makes people happy.”
Katie hopes sharing her story will raise awareness about her condition.
“I know that there are a lot of medical people who don't know about POTS and I think that more people need to know about it," she said.