Kayla Swift suffers from headaches, dizziness and blurry vision on any given day. When she stands, Kayla experiences an immediate increase in heart rate and a spike in her blood pressure. She uses a wheelchair when she needs to travel more than five minutes away from home and has averaged two to three emergency room visits per month.
Her list of ailments include new Mast Cell Activation Syndrome (MCAS), Cardiomyopathy and Postural Orthostatic Tachycardia Syndrome (POTS). She has been on heart medication since August with no plans of discontinuing them in the foreseeable future.
All of these conditions have been plaguing Kayla for less than a year.
The catalyst for all of this was a disease that came just as swiftly and has taken center stage this year: COVID-19.
But unlike the novel coronavirus' usual targets for serious cases, Kayla does not meet the common narrative of being elderly or having a pre-existing condition. She is only 23 and before March this year, she was a perfectly healthy working college student.
Per the latest California COVID-19 data, adults aged 18 to 49 make up for 60% of positive COVID-19 cases but only account for 7% of COVID-related deaths. Those who are 65 and older are the ones statistically the most at-risk for developing serious complications and also make up the bulk of COVID-related deaths. It is because of these factors that Kayla believes her case was first overlooked.
"I think everyone's fair game at contracting (COVID-19), but I didn't think that I was going to not recover like this. I thought it would be a rough couple weeks. I didn't think I would ever have to go to the hospital for it. I didn't think I was going to be hospitalized for heart damage, obviously. Who thinks that's going happen?" said Kayla. "If I hadn't gotten it as early as I did, I probably wouldn't be as socially safe as I am. Because I would have had that same 'I'm young. I'm immune' attitude."
It all started with a business party in north San José where she was a bartender. Days after the event, Kayla learned that the company her work catered for had a COVID-19 outbreak, meaning that she and the rest of her coworkers were also exposed. Kayla quarantined at her apartment in San José for a few days before heading home to Tracy to be with her family.
March 15 was when the first wave of symptoms hit her. First up was heartburn.
"I hadn't really ever had heartburn but my mom has. So she's like, 'You're probably fine. Take a Tums and wait it out,'" said Kayla. "Just within the day it got immensely worse. I was literally just laying down the whole day waiting to feel better."
Something felt off to Kayla. So she packed her bags within a few hours and left the house to quarantine back in San José so she wouldn't expose the rest of her family, despite her mother Leslie's protests.
"I was like 'No, stay here!' You know, because when your daughter's sick, you want them to be with you. But she knew. She figured what it was," said Leslie. "And I thought, you know, 'No, 22-year-olds don't catch COVID. No, that's not what this is, right?'"
For the next couple weeks she would regularly call and video chat with her daughter.
"I would just see her being so miserable, and I couldn't do anything about it because she wouldn't let me come over," said Leslie.
Chest pressure arrived shortly after Kayla went back to her apartment, followed by fevers and chills. Kayla described her lungs as feeling as if they were on fire. When she started feeling shortness of breath and experienced fainting spells, she started to worry.
"I was very concerned. I was calling the calling hospitals asking, 'At what point do I come in? I can't breathe,'" Kayla said. "They literally said, 'Are you over 65 years of age?' I said, 'No.' They said, 'Do you have any pre existing conditions?' I said, 'No.' They said, 'Are your nail beds or your lips turning blue?' I said 'No.' So they said, 'Then you probably don't need to come in.'"
The hospital had told Kayla that it was already full with COVID-19 patients and advised her not to come in unless she really thought she needed oxygen or a ventilator.
At this point in the year, readily available COVID-19 tests were not accessible for those who weren't considered at-risk due to supply issues. The novel coronavirus was still relatively new to the U.S. The state experienced its first case of the virus at the end of January in Santa Clara County, where Kayla was residing. California had just issued its statewide stay-at-home order on March 19, just days after Kayla had first started feeling her symptoms.
"They kept telling me I was young, so I was going to be fine. And then day 10 of my illness, I called my parents," said Kayla. "I fainted because I couldn't breathe, and I was alone in my apartment."
At first, Kayla stayed on the phone with her dad and tried to bring herself to drive to the hospital. But by the time she had made it down the elevator and to her car, she was winded and blacking out. She called 911 and was rushed to the hospital.
After multiple tests, including an EKG, chest X-ray and tests for two types of flu, Kayla was officially diagnosed with COVID-19. Though, at this point, she still hadn't received the nasal swab test typically used for diagnosis. According to Kayla, it wasn't until three weeks later that she would finally be able to get a hold of one.
In April that Kayla was finally able to move back to Tracy with her family. For a while she thought she was officially in the clear and the worst of her COVID-19 experience was past her. She joined her mom in community events like Black Lives Matter marches and canvassing. Leslie described it as a month and a half of "normalcy."
But then Kayla started getting the headaches, blurry vision and dizzy spells, and her heart rate would race after any type of exertion.
"One time she tried to go upstairs and take a shower, and her heart rate went through the roof, and we had to call 911. And it just made it all really real," said Leslie. "I kept thinking she's going to be fine. You know, this is this is going to be fine. She's already gotten through the worst part of it, and she just needs to relax and take care and, you know, not do too much."
After trying to get help from hospitals both in the San Joaquin Valley and the Bay Area, Kayla eventually got the answers she needed from Stanford Healthcare Hospital. They discovered that her experience with COVID-19 had caused heart damage, which contributed to the number of symptoms she was feeling. It was then that Kayla was given her three diagnoses.
She was diagnosed with POTS, an autonomic disorder in the part of the nervous system that is meant to regulate controls, such as heart rate, blood pressure, sweating and body temperature. She was also diagnosed with MCAS, which has caused her to now be anaphylactic if she consumes food with sugar or gluten. Lastly, she has also developed cardiomyopathy, a disease that makes it hard for the heart to pump blood to the rest of Kayla's body and could possibly lead to heart failure. She now moves around with a heart monitor on her person and a stock of epi pens.
For now, Kayla and her mom have temporarily moved in with her grandmother in Danville because she was unable to effectively navigate around her mom's two-story home in Tracy. Kayla needs help for most of her everyday tasks, including cooking and showering, and she still has many doctors appointments coming into the new year. Her younger sister stays with her dad in town, but still comes to visit and help with Kayla's needs.
At the moment, she is not sure what the future has in store for her. Kayla had planned to graduate in December with ambitions to go to law school. Her focus now is just on getting better and regaining her independence. In addition to her family, Kayla has found an online support group, the COVID-19 Long Haulers, where she is able to interact with others who have shared similar experiences. From there she learned that there were many others like her who have felt the long-term health effects from COVID-19.
Kayla hopes that her story reaches others in her hometown of Tracy and wishes for people take her experience as a cautionary tale.
"Whatever you think is worth getting COVID for, it's not," she said. "I mean, I went from living by myself, obviously, to not being able to do anything without my mom."
Leslie, who works at one of the local school districts in Tracy, is currently searching for a new home to rent that will better suit Kayla's current needs. Along with her daughter and close friends, she advocates for others to take social distancing seriously.
"I mean, we've lived the whole 'I don't think it's going to happen to me.' And it did," she said. "So you can't think that way. You just can't. It's happening to millions of people. So you can't just believe it's not going to happen to you."
• Contact Brianna Guillory at firstname.lastname@example.org or call 209-830-4229.