The Diagnosis

Here’s a quick scan of Katie Wiest: a senior at Amador, real name’s Kathryn but everyone’s called her Katie as early as she can remember, so she’s Katie forever; there’s platinum blonde hair tumbling down her back in waves, sparkly Saturn earrings dangling from both ears, piercing light blue eyes, and a slight jaunt of the chin, tipped upwards in slight defiance, daring you, like “I’m nice but you don’t wanna try and mess with me.”

And she has a chronic illness.

Late in her sophomore year, Wiest was diagnosed with Postural Orthostatic Tachycardia Syndrome, otherwise known as POTS. According to the Cleveland Clinic, POTS hinders blood circulation and causes lightheadedness, fainting, and rapid increases in heartbeat.

“POTS patients do not do well with gravity,” said Dr. Satish Raj, autonomic investigation unit director at the Libin Cardiovascular Institute of Alberta. “Normally, when you stand up, your heart rate automatically goes up about 10 to 15 beats per minute to increase blood pressure and blood flow and then stabilizes. In POTS, it’s at least 30 beats a minute within 10 minutes; some can be as high as 60 beats per minute. The brain jumps in to shut that down and you become faint.”

Some patients, like Wiest, can still manage to go to school, and maintain a relatively ‘normal’ lifestyle. Others are bedridden.

Wiest has the hyper-agrenergic form of POTS, where the patient’s adrenaline is, in her words, “off.” The sympathetic nervous system overworks itself, overwhelmed by abnormally high levels of the stress hormone norepinephrine, which increases heartbeat and the amount of blood pumped by the heart.

POTS tends to manifest among young women, 80% of whom make up the current global population of POTS patients. However, the disease chooses its victims at random.

Worst of all, it stays with the patient for life. No cure, no escape.

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The medications Wiest’s doctors prescribed her weren’t working. It seemed like every few days or weeks, Wiest and her parents would pop into the doctors’ clinic, tell them the prescriptions had no effect for whatever they thought she had–misdiagnoses from serotonin shock to allergic reactions to the medicine–and the doctors would look more and more troubled.

Dazed, she followed what the doctors told her to do: all the different tests on her blood, her skin, her urine. They strapped her in for the tilt table test “like Frankenstein,” and she almost hurled from the queasiness. Worried, they said her heart rate and blood pressure jumped way out of the optimal range.

Wiest just wanted to know what was wrong with her body.

So when the doctors sat her down and finally, gently told her she had POTS, Wiest only felt relief, mixed with tentative hope.

“I was like, “ohhh, I have POTS, I’m not dying!” she remembers.

But gradually, weariness and frustration replaced that relief as the full diagnosis sank in, and she had to change her entire life routine.

Wiest now has to take approximately eighteen different medications every day. More than half are pills. There’s even medication for her medications. She has to do two days of strength training, two days of cardio exercise for heart training, and 60 minutes of daily cardio. To maintain her health, Wiest needs to intake more water and salt than the average person. Then there’s her regular pain therapy sessions, that often finish with her muscles screaming from the exertion.

It’s draining. Sometimes, she felt like giving up.

A nurse had once told Wiest she was going to get better. POTS is a chronic disease.

“They told me POTS was going to go away,” Wiest hesitates.

But?

“It doesn’t.”