Coping with ‘Long COVID’ – the mysterious symptoms that won’t go away

Thousands of people in Washington state are coping with long-term COVID-19 symptoms that just won’t go away. Often, the symptoms are severe enough to dramatically interfere with normal life.

Like many COVID-19 patients, Eastside realtor Katherine Hansen lost her sense of taste and smell when she got sick. That was back in March of 2020. Now nearly a year later, her two senses still have not returned.

She used to love cooking. But now, she finds it frustrating. She also can’t smell her two dogs.

“I can’t tell if they need a bath because [I] can’t smell them,” Hansen said. “That’s when I know I’m not smelling anything. Usually, I wash them every week because it’s like ‘Boy, you smell like a dog!’” she said.

But the loss of two of her senses is an inconvenience compared to other “long hauler” symptoms she’s dealing with, such as brain fog and sudden fatigue.

“What are some things you used to be able to do that are now a little more difficult?” asked KIRO 7′s Deedee Sun.

“Oh, almost everything,” Hansen said.

Hansen is a patient at UW Medicine, which has one of the only clinics in the United States that specifically focus on treating “Long COVID” or “long haulers.” It’s called the Post-COVID Rehabilitation and Recovery Clinic.

Katherine got sick with COVID-19 last March when the pandemic was just flaring. The virus hit her hard.

She said normal breathing felt like being in anaphylactic shock from a bee sting.

“Like I was suffocating from the inside. My lungs felt like they were on fire. I couldn’t get a breath in,” Hansen said.

Plus she experienced unimaginable fatigue.

“I couldn’t speak, couldn’t talk, couldn’t text. Everything was exhausting. The thought of moving my body made me exhausted,” Hansen said. “The first seven days, I wasn’t sure I was going to make it,” she said.

She had to go to the hospital twice but was never admitted.

“It was like there’s something inside of me and I’m not sure who is going to win here,” Hansen said.

Slowly she started getting a little better. That’s when she noticed food tasted weird – or rather, not at all.

“Someone got me a root beer float. It was a childhood thing and I wanted to be comforted, but I couldn’t taste it,” she said. “Food was like cardboard. It was only hot or cold or warm. That’s when I was like, I can’t taste anything,” Hansen said.

Hansen said before COVID, cooking was a major part of her life.

“I had a keen sense of taste and smell. I love cooking. Usually I can taste all the ingredients so if we love a dish at a restaurant, I could go home and re-create it,” she said. “It was a huge part of how I raised my children and how we gather.”

“Now if I eat an orange or a tomato, it’s almost the same thing – except for the texture,” Hansen said.

The pleasure of food – the rituals of preparing, savoring delicate flavors – have been reduced to eating just for nutrition.

“It’s frustrating to try to cook something and see if the flavor is balanced and I can’t tell,” Hansen said.

“I eat pretty bland food now, mostly fruit and vegetables and a little lean meat and I kind of call it a day. And if I’m not feeling it, I’ll usually blend whatever it is up and it’s easier, more palatable,” she said.

Then there is the safety aspect. We humans still sometimes rely on our noses to tell us when something is wrong – like when there’s a fire.

Hansen said she had to buy another smoke detector.

“I got a portable one that’s next to my bed, so I’ve kind of been doing some safeguarding, absolutely,” she said.

She says other symptoms persisted, or new ones – like a racing heart, or dizziness – would pop up.

“Even two months in and I’d have a setback. I’d think maybe I’m not out of the woods at all. Maybe this is a time bomb inside of me,” she said.

During this time, she was living on the Olympic Peninsula and says she struggled to find doctors who could help.

“I felt like I wasn’t getting better. I need access, especially on an emergency situation where I’m not dependent on the medevac having to take a ferry,” she said.

So she uprooted her life in Clallam County and moved to the Eastside.

“So I could have access to UW Medicine,” Hansen said. “I was scared.”

The move was in October. Last month, she finally got into UW Medicine’s long hauler clinic – one of the few in the country.

“The demand is increasing really fast,” said Dr. Aaron Bunnell, who directs the clinic. “We are now doubling our volumes every couple of weeks,” he said.

They connect patients – who like Hansen, are often dealing with a range of symptoms – with teams of specialists.

The resources range from pulmonary specialists who design rehab and exercise regimens to meeting psychologists.

“Neuro-psychiatric testing to really get down to what is actually happening in your cognition,” Bunnell said. “For function, we have occupational therapists who can reorganize your house or teach you to bathe again,” he said.

Preliminary studies from the U.K. show about 10 percent of people who get sick experience “Long COVID” symptoms that last for more than three weeks after the infection is first detected.

The number is much higher for patients who’ve been hospitalized.

UW Medicine is part of a nationwide study in the U.S., called INSPIRE, to figure out how prevalent long hauler symptoms are, and what might be causing the long-term issues.

Bunnell said it’s not clear yet if some of the symptoms long COVID patients experience could be permanent. But he says past studies, like ones on H1N1 patients, shed some light.

“In our past experience in patients with similar viral infections that led to lung issues, those patients often struggle with issues even 5–10 years out,” Bunnell said.

He says in long COVID patients, the number one symptom the clinic sees now is physical.

“Really profound effects on people’s endurance. Patients who were going to gyms, who were really strong, are now going up a flight of steps and their heart rate is going up to 180 (beats per minute),” Bunnell said.

Next up is brain fog – something Hansen also experiences.

“Their ability to think has changed. So they feel a little bit less able to concentrate, a little less able to remember things or think quickly,” Bunnell said.

Hansen says she now relies on voice memos to remember short-term tasks, and finds herself forgetting things like a coat, or her purse – something that never used to happen before getting sick.

“I’ll joke and I’ll say me walking around my house trying to remember what I was just doing has become a form of exercise for me,” Hansen said.

Bunnell says mental health struggles are also common among long COVID patients.

“Depression, anxiety, and, in our ICU survivors especially, PTSD. So all of those things combine to limit people’s ability to function,” Bunnell said.

Scientists are still trying to figure out why COVID-19 causes so many long-term issues. Currently, there are only theories as to what the virus is doing to the brain to cause the range of problems.

“One (theory) is patients may be becoming hypoxic. Essentially, the blood levels of oxygen are lower,” Bunnell said. “They’re not delivering enough oxygen to the brain. Is it severe enough that they pass out or go into arrest? No. But it’s enough that it might affect cognition,” Bunnell said.

He is urging people – both in medicine and otherwise – to pay attention and show support to survivors dealing with long COVID.

“We underweight things that are not death in this society. We look all the time at the mortality figures, but we don’t look at the quality of life figures in these patients,” Bunnell said.

“Just to have it validated that it’s hard is a huge deal for patients. I think a lot of patients go around to see physicians and physicians shrug their shoulders, and that’s hard. I think just to have someone say yeah, this is really tough, and then also seeing a psychologist to help re-incorporate what it means to live, is really important,” Bunnell said.

For Hansen, raising awareness is part of why she wants to share her story.

“A lot of us are going to be living with this,” Hansen said. “I try not to dwell. I try to not get upset.”

“Are you hopeful you will be able to bounce back 100%?” Sun asked.

“Yes. I’m an eternal optimist. I don’t want this to shorten my life. I don’t want it to limit my life. But I’ll take what I can get,” Hansen said.

People interested in UW Medicine’s long-hauler clinic can either be referred by a doctor or reach out to the UW Medicine Contact Center at 206-520-5000 and ask to be seen with the COVID-19 clinic.