Nowhere to turn: Patients seeking care for lingering COVID-19 symptoms

Coronavirus Updates

SALT LAKE COUNTY (ABC4 News) – Months after contracting COVID-19, a group of Utahns said they’re still suffering from long-term symptoms of the virus and they have nowhere to turn. Now they’re pushing for Utah’s healthcare leaders to develop post-COVID treatment centers, a place where they can seek the care they need.

The group, dubbed the Utah COVID-19 Long Haulers by founder Lisa O’Brien has more than 200 members since it was created more than two months ago.

The term, “long hauler” is not unique to just this group. It’s become an unofficial name for those who have continued to experience long-term symptoms following a mild to moderate COVID-19 illness. Many of these individuals have managed their symptoms at home, some never even testing positive for the virus.

Lisa O’Brien

O’Brien said she was one of the individuals who continually tested negative for the virus, even though she began experiencing respiratory symptoms after returning from Hawaii in March. She believes her results were false, which can happen according to Dr. Dixie Harris at Intermountain Healthcare, who is a critical care physician and pulmonary specialist.

“Currently we have the PCR test, which is testing for a short segment of the RNA virus. So it’s not perfect and the thing to note is that the more virus you have in your body, the more likely the virus is to be positive,” said Dr. Harris.

She added, “We have seen cases where a patient has been tested multiple times and been negative. It has to do with whether the virus is being shed through the mucosa that’s being tested. Currently, the test is nasopharyngeal so it’s the swab in the nose. So there’s no gold standard test for this.”

As a result, O’Brien said she’s faced a multitude of challenges, especially some skepticism from multiple doctors she’s visited, who’ve dismissed her symptoms it as anxiety. She said one doctor even asked her if she knew about the “power of suggestion.”

“There aren’t a lot of doctors who, not for any fault of their own, they just don’t know what to do. There aren’t a lot of answers. There is a lot of help from other states and doctors that are really looking into and trying to find solutions. But here, it hasn’t happened yet,” said Tressa Smith, a member of the Utah COVID-19 Long Haulers group.

Since her symptoms began emerging in March, O’Brien said she’s suffered from blood clots, tachycardia, blurry vision, nausea, fatigue, insomnia, and random oxygen drops. She said that a number of symptoms that long haulers are experiencing have not yet been deemed official symptoms of COVID-19 by the CDC.

“Will this ever go away? How long is it going to last? Why is this happening? If it doesn’t go away, what I can do to improve my quality of life? I have a fear now of being too far from a medical facility because I don’t know what my body will do,” said O’Brien.

O’Brien quickly found out she wasn’t alone when she found online groups for long haulers around the country, which led her to then create the local Utah COVID-19 Long Haulers group. Together, they’ve worked on reaching out to Utah’s healthcare leaders to establish something similar to New York City’s Mount Sinai post-COVID treatment center.

“I just knew that if I was going to get Utah to listen to me and see that this was going on, I was going to need to find the others,” said O’Brien.

Tressa Smith

Smith, who tested positive for COVID-19 in April said she found support and understanding from the group that she couldn’t find from family and friends. To this day, she is still experiencing brain fog, dizziness, back pain, high heart rate, shortness of breath, headaches, and more.

“My life looks nothing it did before I got COVID. It impacts my ability to do my job and the time I can spend with my family. These symptoms are scary and sometimes, it can feel like you’re dying. My biggest fear is never getting better,” said Smith. “It’s definitely not any way to live. It’s very isolating.”

She went on to say, “This is something that so many of us are experiencing. As COVID goes on, more people will go through it. If we can find people who can help us, such as the doctors in New York, it would make such a difference. We want people to know that we are here, we are suffering, and we don’t know what to do,” said Smith.

Dr. Harris said that Intermountain has already opened a post-COVID ICU clinic, but explained that physicians are still learning about the virus and discussing on how they can further resources and care for patients.

“The cases I’ve seen have taken a long time to improve. I haven’t seen anyone that hasn’t been improving, so that’s good news. But it does take much longer than you would think with the typical viral infection,” said Dr. Harris.

She went on to say, “We’re asking that patients bear with us because we are learning as they are learning. We’re going to do the best we can to develop a system-wide approach. Part of it is just awareness and for patients to know that there’s growing information. We’re working on seeing what we can do for our patients at Intermountain.”

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