ROGERS — In the corner of a brightly lit kitchen, pill bottles cast a shadow onto the countertop, much like the shadow that mirrors Kristen Stalder’s illness.
Postural Orthostatic Tachycardia Syndrome affects an estimated 1,000,000-3,000,000 million Americans.
• 1 in 100 teenagers are believed to have POTS.
• Eighty percent of people afflicted with POTS are women of childbearing age (15-50).
• People more susceptible to POTS are Caucasians, high achievers, females and people who are flexible/double-jointed. vSymptoms include fatigue, headaches, lightheadedness, heart palpitations, exercise intolerance, nausea, diminished concentration, tremulousness (shaking), syncope (fainting), coldness or pain in the extremities, chest pain and shortness of breath.
• Salt, fluids and daily exercise
are the best treatment options for POTS
Information provided by the Mayo Clinic and Dysautonomia International.
It’s here, at her “drug corner,” she fights to reclaim her life.
Twice a day — once in the morning and once at lunch — the record-breaking Rogers High sophomore swimmer visits this corner. It’s been part of her daily routine since 2015 when she was diagnosed with Postural Orthostatic Tachycardia Syndrome, or POTS as it’s more commonly referred to.
There’s no cure for POTS, but she’s learned to manage it over the past two years.
“It’s not that I’m better, it’s just that I’m handling it better,” she said.
POTS is a form of dysautonomia, which affects the autonomic system of the body. This system controls functions of the body that occur subconsciously, like blood circulation. In cases like hers, this system does not operate normally.
Even though Kristen’s health has improved, her quality of life is still an uphill battle.
“The POTS was like a bull in a china shop,” Kristen’s mother, Sarah Stalder, said. “It just came at her and her life literally stopped.”
‘TALL, SKINNY GIRLS JUST HAPPEN TO PASS OUT SOME’
When her symptoms first appeared, Kristen and her family were not prepared for it.
“It all happened so fast,” Kristen’s father, Ryan Stalder, said.
During volleyball season her freshman year, Kristen and her father were in Fort Smith for a tournament. In one of the matches, Kristen had just subbed out and sat down on the bench when she suddenly slumped over onto the shoulder of a teammate.
Ryan Stalder, who had been live-streaming the match so his wife could watch it from home, wasn’t aware Kristen had become ill until someone told him.
“One of the girls from the bench came over and said ‘Hey, Kristen passed out or whatever,’” Stalder said. “So of course, I stopped. Sarah had no idea what was going on, and I stopped recording and went over there, and I just thought she was probably dehydrated.”
The whole episode lasted less than a minute. By the time her father reached her, Kristen was already up again outside the gym. After getting something to eat and drink, they returned home.
Kristen described what happened to her parents as “a cloud in front of my face.”
“You’re kind of like, ‘OK, something’s not quite right,’ but you could still blame it on dehydration, not enough food,” her mother said.
Then Kristen had a similar experience a week later at another volleyball match.
She went up to spike the ball and when she came down, she knew something was wrong.
“She literally crumbled to the floor,” Sarah Stalder said. “She laid there.”
Her parents immediately took her to the emergency room, but they didn’t get any answers there.
“They didn’t really understand what was happening,” Kristen said. “They were like, ‘Oh, you’re fine now.’”
She wasn’t. The symptoms intensified and doctors were puzzled by what was causing them, even suggesting her physique was the root of her problem.
“Another one was — oh, this was my favorite — ‘Tall, skinny girls just happen to pass out some,’” Sarah Stalder said of one diagnosis. “That was a medical professional. That was my favorite because it’s like, OK, no, tall, skinny girls don’t just happen to pass out. There’s something that’s causing them to pass out.”
Doctors ran multiple tests, including an echocardiogram, electrocardiograms and a computerized tomography scan, thinking her symptoms were caused by problems in her heart.
When those avenues were exhausted, they thought her symptoms were being caused by Kristen’s exercise-induced allergic reactions, which she was diagnosed with in sixth grade.
Those few months, during which the family did not know what was happening, were frustrating. She missed about two months of school that first semester and struggled to get out of bed in the mornings.
“She would have bed sweats at night, and it was bad,” Sarah Stalder said. “I mean, she couldn’t control her body temperature at all. Her feet would turn purple because the blood pools in your extremities, so her feet would be bright purple and her hands were always cold. They were always freezing, and so she would have the night sweats and then other times she couldn’t get warm enough, and so she couldn’t control that body temperature type of thing going on. You’d be freezing and then you’d be hot. You’d be freezing and then you’d be hot. And then the stomach pain and the bloating.”
Not knowing how to help their daughter was one of the most difficult times the Stalders had to go through, especially for Ryan Stalder.
“Anytime it’s not you, whether it’s someone else in your family, it’s really hard, especially if it’s your kids,” he said. “You want to do all you can, but you can’t do anything because you don’t know what’s wrong. You’re frustrated and you’re like, ‘Why is this happening? Why can’t it be me instead of her?’ There’s a lot of anger and frustration.”
It took four medical visits, including one to Arkansas Children’s Hospital in Little Rock, before POTS was targeted as a possible diagnosis.
Dr. Gary Neaville at Mercy Clinic in Rogers first suspected it could be POTS and ordered a table-tilt test to see if he was right.
The table-tilt test is one of the only ways to diagnose a patient with POTS, as it shows how the heart rate changes from going from a flat position to an upright one. The results show if the nervous system is controlling the autonomic system like it should or if it is out of sync, with any change greater than 40 beats per minute being a cause for concern.
Kristen peaked at a change of 45 BPM.
“I’m like laying down flat for like 15 minutes, which isn’t a big deal, and then I’m half up,” Kristen said. “It was a little worse, but it wasn’t bad. Then it was completely up, and within like five minutes my heart rate, it went up super high when I got up and then plummeted and I basically passed out. It was really bad.”
The test showed her symptoms and reaction to the experiment was “consistent with a combined initial component of POTS,” according to her final report.
While Kristen and her parents were awaiting the results of test, her allergist referred to them to Mayo Clinic in Minnesota.
In December 2015, armed with the results of the table-tilt test, the Stalders traveled to the Mayo Clinic with hope they would finally know what was happening to Kristen, and how to treat it.
“We were there 10 days, and in those 10 days they did probably six months to a year’s worth of testing they would have done here,” her mother said. “It was amazing.”
Kristen met with the clinic’s immunologist, allergist, gastrointestinal specialist, cardiologist and a POTS specialist.
It was after a visit with Dr. Amie Jones, a specialist in pediatric and adolescent medicine, that the Stalders were finally given an answer for what was causing all her symptoms.
Along with having chronic abdominal pain, query mast cell activation disorder and exercise-associated hives, the final diagnosis of POTS finally gave them a name to the problem.
“It was nice to finally know because you didn’t have to go out looking for anything,” Kristen said. “But at the same time, it didn’t really change anything, because I was still dealing with the same stuff. I just knew how to deal with it better. It wasn’t a super big change because I was still dealing with the same stuff. There wasn’t a magical cure or anything.”
While it is still not known what triggers POTS, Kristen’s previous health problems could be the reason for her specific case.
“For Kristen, she is unique,” Jones said. “One of the pieces she was struggling with was her exercise-induced anaphylaxis, and that was less common, but stressed her body in a way that made it hard for her autonomic nervous system to perform the way it needed to.
“It was probably that in combination with being in teenage years that triggered the POTS for her.”
The Mayo Clinic gave the family binders full of information on POTS and dysautonomia, and Kristen took part in a two-day rehabilitation clinic that taught her how to get a handle on the symptoms by retraining her brain to think more positively.
As part of her treatment, Kristen has to ingest 5-10 grams of salt daily, exercise regularly with a focus on lower-body training and drink lots of fluids.
Kristen also had to learn to be more self-reliant.
“[My mom] used to take care of me, and now I have to take care of myself,” Kristen said.
She is responsible for refilling her own medication each week, planning when to consume salt so she’ll be ready for a swim meet, how much she needs to drink and doing her breathing exercises.
“She had to retake over her life,” Sarah Stalder said. “She had to take back what the illness had taken from her. She has to take it back.”
Kristen had done almost everything Mayo told her to do, except for meditating and running, which is her least favorite thing to do. There was one thing they suggested to her that she flat-out refused to do: They wanted her to give up her passion.
“They wanted her to quit swimming and [Kristen’s] like ‘No, I’m not going to quit swimming,’” her mother said. “She’s been swimming since she was 4, and so swimming is kind of her identity.”
The doctors at Mayo told her she could swim on one condition, that she get out of the pool by herself.
SWIMMING WITH POTS
At first, Kristen was not able to get out of the water at meets due to POTS. She spent all her energy on swimming in the races, so she had none to spare to climb out of the water.
That never deterred her or her “catcher,” Mounties swim coach Rob Bray.
“He was just the best coach ever,” Sarah Stalder said. “He would make sure that she was OK. He would get her a seat. He would get her Powerade or Gatorade or something salty. He would sit her there and he would make sure she was OK. I mean he was like this big, huge papa bear. I mean it was unbelievable. He was just phenomenal.”
During every meet of her freshman season, Bray would be at the end of the pool waiting to pull her out of the water.
“I wanted to make sure, with dealing with a kid’s life, it wasn’t just a kid down there watching her, but it was me watching her,” he said.
Bray said he had no idea of her condition going into the season.
“The more I learned about her illness, the more I understood where she was coming from with this thing,” Bray said. “Her work ethic is incredible. She’s just an incredible kid as far as work ethic is concerned and she’s probably a better kid and student in person than she is athlete. I’m very proud of the accomplishments she’s made from year one to year two.”
Kristen gave up volleyball to pursue swimming full time, mostly because her body could not handle doing both sports. She had to cut her swim practices from twice a day to once, which was one of the biggest adjustments she had to make, she said.
“I was doing everything you could possibly do and now it’s like, ‘Oh you can only do one practice,’” Kristen said. “It’s a little different.”
The 16-year-old has even had to change events to better suit her new life. Before POTS, she competed in middle-distance races, but now she competes in shorter ones.
Even though she’s had to completely change how she swims, it hasn’t slowed her down in the water.
“She does it on her own,” Bray said. “She works all the time. There is zero offseason for her and she is working daily to improve her craft.”
Kristen also practices six times a week for her club swim team, the Northwest Arkansas Aquatics. And while she can’t always make it in full practices, Kristen is still one of the fastest swimmers on the team.
“It slowed her progression down,” Bray said. “Don’t get me wrong, she’s still one of the top two, three or four swimmers in the state in certain events, but it just slowed her down.”
Nothing has been easy about swimming with POTS, and despite Mayo doctors not fully behind her aspirations to be a swimmer, Kristen has found a way to make it work.
“They haven’t had a whole lot of success with competitive swimming and people with POTS,” Sarah Stalder said. “But Kristen has, so we’re sticking with it.”
Kristen holds five individual and two medley records at Rogers. In 2015, she was a part of the record-breaking 200- and 400-meter free relay teams. In 2016, it was the 50-meter freestyle and 200-meter individual medley. This past year, she had a trifecta of 100-meter swims — freestyle, backstroke and butterfly.
POTS is not necessarily a life-long affliction, and there is a good possibility she will be able to outgrow it, Jones said.
“I’m very optimistic for Kristen,” Jones said. “Her passion for swimming has been a piece of helping her in her recovery.”
For Kristen, it’s more of a mental battle nowadays. There are still rough days when it’s a struggle to wake up or make it to school, but she said she knows it’s up to her to overcome it.
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