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CEDAR CITY — Some studies estimate more than 100 million people who had COVID-19 have or continue to have prolonged symptoms lasting months, and in some cases, years. These chronic symptoms can be life-altering, which is why Intermountain Healthcare is getting creative about its care. One Cedar City woman is sharing her story.
When Krystie DeMello got COVID-19 two years ago on March 4, 2020, she didn't know it would be life-changing. "I was 48 years old. I was healthy — hikes, swim, working full time, commuting," she described.
But the virus wreaked havoc on her body. DeMello is considered a COVID-19 long-hauler — someone who has symptoms lasting longer than 12 weeks.
"Quite simply, it has not left a single system untouched," she said.
DeMello has experienced problems with her vision and hearing, digestive issues, unexplained pain, nerve damage, thyroid dysfunction, resurgence of autoimmune disease, early onset menopause, seizure-like episodes and chronic infections.
"I had a UTI last year that lasted about five months, 11 rounds of antibiotics, and put me in a hospital," she said.
"My eyes and ears have strange things like it sounds like I'm going through a tunnel, but not really a normal tunnel," she explained. "At times my eyes will have voids in the vision — not like black spots, just there's data missing."
Last April she had surgery to cut back the muscles in her esophagus after experiencing muscle spasms in her throat. She says this made it difficult for her to swallow and believes it was the underlying reason she coughed for 16 months straight. "The nerves were damaged, so it was choking me constantly," she explained.
Today, DeMello is dependent on her husband for basic needs. "It's unbelievably rough to be huddled in the bottom of a shower while your spouse bathes you. It's kind of soul-crushing," she said. "He's had to take care of me in every way imaginable."
She can't drive or work. Doctor's appointments, physical and occupational therapy and neuro-rehab now dominate her schedule. She uses a whiteboard and sticky notes to stay organized since her cognitive function has also been impacted.
"My short-term memory is shot," DeMello said. "I literally have sticky notes on my laptop asking me, 'When did you last eat?' Food, water, meds — to remind (me about) very simple things."
"Brain fog doesn't describe the fact that you can't remember what you were talking about when you started, that you can't remember if you ate that day," she said.
"I was an elite scholar in my old life and I haven't been able to read a book in a year," DeMello said, explaining that it's too hard for her to remember and follow the storyline day to day. "If you can't do simple things like that, you can't work."
Then there's the extreme fatigue. "The way that it feels like there are sandbags tied to every limb pulling you into the floor," she described, "it's so debilitating."
DeMello has seen more than two dozen doctors and sought care in three different states. "Wait times for specialists can be three, four, even six months, so that's rough," she said.
She says coordinating all her appointments is like a full-time job. "Trying to manage it all by yourself and remember your appointments and figure out where you're going and who you're seeing," she described.
Dr. Dixie Harris, a critical care physician at Intermountain Healthcare, treats patients like DeMello. She says Intermountain Healthcare recently introduced a new resource called the Long COVID-19 Navigation Program. So far more than 400 people have utilized the program.
"The patients can call a phone number, they speak to a nurse who is reviewing the patient's symptoms," Harris explained. The nurse then refers the patient to various specialists. "Because this navigator has direct access into these clinics, the patients are getting into the specialist faster," she said.
"What we started at Intermountain is actually very unique," Harris believes. "As far as we know, this is one of the first kinds of COVID-19 patient navigation programs in the nation." Instead of building a standalone clinic, Harris said they've taken a multidisciplinary approach providing patients access to providers across the state.
"Patients can be treated and managed all throughout the state with the patients not having to travel to all these different clinics if not necessary," she said.
Harris says between 10% and 20% of those who get COVID-19 will have post-acute sequelae of COVID-19 or long COVID. She says that number increases for those who have been in the ICU or on a ventilator. Other studies suggest that number is anywhere between 30% to 50%.
"We think of COVID-19 as really more dangerous for older people, but when it comes to long COVID-19, it's more a younger person," Harris said. In her clinic, she's also noticed women experience long COVID-19 symptoms more often than men.
"You may be somebody who has headaches and it's been going on ever since you had COVID-19 and you never had headaches before, and four months later you still have a headache. Well, that's chronic COVID-19," she said.
"The most common is fatigue, brain fog, or they have a hard time with memory and word-finding," Harris said. "Shortness of breath, heart racing, joint aches. I mean, basically COVID-19 can go anywhere in the body and inflame anywhere."
She urges people to utilize the program and stay positive. "I've consistently seen people getting better over time. I've seen people get back to full activity and everything," she said. "Pretty much everybody I see recovers at least some."
Harris reminds people they are not alone and urges them to reach out to a support group. DeMello has found great support and comfort through the Utah COVID-19 Long Haulers (30-plus days) Facebook group.
DeMello reminds others to never give up. "I think there's always hope," she said. "It's finding those ways to inject joy into really hard times that that keep that going."
She finds that joy in simple things like nature, music, and dying her hair rainbow colors for her 50th birthday. She is also grateful for the constant love and support from her husband. She treasures the encouraging notes he writes for her on their bathroom mirror. "This is the stuff that gets me through," she said
Those interested in getting care through Intermountain Healthcare's Long COVID Navigator program can call 801-408-5888.