Young Coloradan dwelling with lengthy COVID turns to TikTookay to teach

FORT COLLINS — Lilly Downs rolled away from bed in her new residence and commenced establishing her morning’s IV fluids, which move from a tube in her chest into her bloodstream to maintain the 20-year-old hydrated.

Next, she crushed and dissolved tablets so they might run by a separate tube into her intestines, which take up the drugs higher than her abdomen.

The steps Lilly took that October morning are crucial as a result of her abdomen stopped working correctly following her first bout with COVID-19 4 years in the past. But her routine additionally served one other goal: It was content material she filmed for a video that she later posted on TikTok, the place she has amassed almost 470,000 followers.

Lilly added Tylenol to her combine of medication that morning, she defined within the video, as a result of her mother was going to be giving her an intravenous immunoglobulin, or IVIG, infusion, which docs have discovered to be an effective treatment for sufferers who’ve lengthy COVID.

“I all the time should pre-medicate with Benadryl and Tylenol in order that I don’t have a response to the infusion,” Lilly stated through the minute-long clip.

For Lilly, TikTookay has develop into a form of a job — and undoubtedly a distraction — whereas dwelling with lengthy COVID, the title given to the bodily and cognitive signs that may persist for months and even years after sufferers’ preliminary infections. She’s develop into a social media influencer, incomes hundreds of {dollars} and model offers by documenting what it’s prefer to face life with a chronic illness.

She first fell in poor health with COVID-19 as a teen in 2020 through the peak of the pandemic, and The Denver Post has followed Lilly since 2021 by a number of hospital stints and her seek for normalcy and solutions as to why signs, together with a excessive coronary heart fee and mind fog, nonetheless linger.

The Post final caught up with Lilly in 2022, when she wasn’t simply nonetheless sick, her symptoms were getting worse and she or he was hospitalized with life-threatening infections. Now, Lilly stated in a current interview, she’s doing higher bodily, dwelling on her personal and planning to renew her schooling in January whereas utilizing her platform on social media to teach folks about her life and sickness.

“Filming and modifying my movies — it gave me one thing else to give attention to,” she stated.

On TikTookay, Lilly shares her experiences with feeding tubes, drugs and being interviewed by news reporters. Hundreds of hundreds — typically thousands and thousands — of individuals watch her particular person movies. But she additionally shares belongings you’d anticipate from a typical 20-year-old — moving into her first apartment, traveling with friends — and it’s this stuff that present how far Lilly has come.

Two years in the past, Lilly was an 18-year-old who simply wished to go dwelling after spending months at Denver’s Rocky Mountain Hospital for Children. Any journey and school plans she entertained had been on maintain out of concern she’d must return to the hospital once more.

Now, she’s dwelling life exterior the hospital’s partitions, on her personal for the primary time, touring with buddies to Utah, and volunteering at a camp for chronically in poor health youngsters — and she or he’s sharing it with the world.

Learning extra about lengthy COVID

Lilly was 16 when she first turned sick and was hospitalized throughout one in every of Colorado’s deadliest waves of the virus. Soon after, she started creating ulcers throughout her physique that docs had been unable to clarify and struggled to deal with.

When she first turned in poor health, pediatric docs had been unprepared for sufferers with COVID-19 to develop persisting signs. Long COVID was first seen in adults, and researchers and physicians didn’t know the way widespread it was in youngsters and youths.

Loads has modified since Lilly first turned sick, and even since 2022, when her signs worsened to the purpose she needed to relearn the right way to stroll on her personal and she or he spent a lot of the yr within the hospital.

While COVID-19 remains to be round, vaccines and coverings at the moment are accessible. Doctors and researchers have additionally discovered extra about lengthy COVID, together with the way it impacts adolescents, and are engaged on discovering higher remedies, akin to IVIG, for sufferers with persisting signs, stated Dr. Alexandra Yonts, a pediatric infectious illness doctor at Children’s National Hospital in Washington, D.C.

Doctors nonetheless don’t know why somebody particularly develops lengthy COVID, however there are threat elements, akin to if somebody has a number of signs after they first get sick or have autoimmune ailments, she stated.

Adolescent ladies are at a better threat of creating lengthy COVID, though the situation additionally seems extra in boys ages 5 and youthful, stated Yonts, director of the hospital’s post-COVID program.

In 2022, researchers estimated that as many as 651,000 Coloradans had lengthy COVID, with clinics struggling to keep up with the demand for treatment.

Studies additionally present that the extra instances an individual will get COVID-19, their threat of creating lingering signs will increase, she stated, including that getting vaccinated decreases an individual’s threat of getting lengthy COVID.

“We’re undoubtedly in a way more educated place of this illness,” Yonts stated.

At Yonts’ clinic, docs have discovered that sufferers can expertise a variety of lengthy COVID signs. Fatigue and decreased train tolerance are among the many commonest.

Patients additionally seem to fall into two teams, Yonts stated. One group has extra cardiovascular signs, akin to coronary heart palpitations and issue respiration. The different group has extra gastrointestinal and neurological signs, akin to complications, vomiting and abdomen ache.

“It was a solution to join with folks”

While there had been a interval in 2021 when Lilly seemed to be doing higher, she took an surprising flip as she started vomiting and had hassle swallowing and consuming. She landed within the hospital once more on the finish of summer season 2021, lacking the primary days of her senior yr at Lakewood High School.

Lilly was finally recognized with gastroparesis, which suggests meals doesn’t transfer by her physique when she eats, and was positioned on a feeding tube.

But her central line — the very factor that gave her vitamins — saved inflicting life-threatening infections that put her in repeatedly within the intensive-care unit.

So when the autumn of 2022 rolled round and Lilly’s buddies left for faculty with out her, she determined to make the most effective of the scenario by posting on TikTookay.

The social media app turned not only a distraction, however a solution to meet folks. Lilly has met others dwelling in Fort Collins who additionally observe her movies, she stated.

“It was a solution to join with folks as a result of it’s rather a lot tougher in actual life when your mates are gone,” Lilly stated.

TikTookay helped Lilly not solely make new buddies, it additionally let her buddies from highschool higher perceive her sickness, she stated.

The TikTookay movies assist present “that I’m a traditional individual,” she stated.

Elisa Downs, Lilly’s mom, stated she didn’t fairly perceive when her daughter began making TikToks — whilst she helped make Lillly’s dance movies within the hospital.

“When she actually began to choose up momentum, I used to be, in fact, fearful as a result of this world is merciless,” Downs stated, noting how controversial the subject of COVID-19 will be on-line.

But then, Downs stated, she witnessed the group her daughter discovered on-line.

“I noticed that it was giving her a way of goal,” she stated, including, “She was capable of actually discover an amazing community of individuals there who understood.“

Lilly has additionally been capable of earn cash for her TikTookay movies by way of the platform’s Creator Fund, which pays customers primarily based on how many individuals view and have interaction with their posts. To be part of the fund, an individual should be no less than 18, have a minimal of 10,000 followers and no less than 100,000 video views previously 30 days, in accordance with the social media app.

Lilly’s movies about her sickness — particularly those about how she receives supplemental vitamin — earn probably the most views. One of her clips about her nighttime routine obtained greater than 60 million views, bringing in about $5,000 alone.

Lilly stated she is “technically” a social media influencer — she has a supervisor and has began getting model offers, such as with BeeKeeper’s Naturals, which sells pure treatments. Lilly posted a video displaying her utilizing one of many firm’s merchandise to assist along with her mind fog.

But Lilly has different plans, too. She moved to Fort Collins from Golden in August and is adjusting to dwelling on her personal for the primary time. She needs to get one other job and begin school subsequent semester at Colorado State University, learning vitamin science in hopes of turning into a pediatric dietitian.

“I’m excited to have a routine,” Lilly stated. “Being at school — I’m nervous simply because my mind… is simply not the place it was once.”

A brand new regular

Physically, Lilly stated, her signs have gotten higher. She nonetheless has days the place they flare and she or he struggles with mind fog, which makes her lose her prepare of thought.