Don't forget COVID-19 long-haulers: 'This isn't going to just go away'

SALT LAKE CITY — As most Utahns look forward to COVID-19 no longer dominating their daily lives, those who've had the deadly virus and continue to struggle with debilitating and difficult-to-treat long-term symptoms are hoping they won't be forgotten.

Known as COVID-19 "long-haulers," they deal with doubters who aren't sure whether symptoms like exhaustion, difficulty concentrating and body aches are really physical problems or the psychological toll from contracting the coronavirus.

Utah Lt. Gov. Deidre Henderson understands firsthand the need to confront the ongoing effects of the deadly virus. Since being hospitalized for COVID-19 last August, she has experienced lingering respiratory issues as well as developing agonizing back problems that required multiple surgeries.

"I've been doing a lot better. I can tell that I am slowly getting better. My lungs are slowly healing. I still get short of breath, so there are times where if I am walking with people, I have to ask them to slow down. I just can't keep up the way I used to," Henderson said.

The 46-year-old former state senator from Spanish Fork who was elected lieutenant governor last November said although her doctors are "very optimistic" at this point that she can expect a full recovery, it could take months. And there's always the possibility Henderson may never be truly free of COVID-19's effects.

"This isn't going to just go away and be entirely behind some people because there are, in some cases and probably in many cases, some significant lingering effects that people will have to live with," Henderson said. "There's always that caveat that we really don't know because this is so new."

But the medical community is beginning to pay attention to long-haulers, she said, and the problem is real. Utah has seen nearly 390,000 positive COVID-19 cases, and while all Utahns over 16 are now eligible for vaccines, just over half-million are fully vaccinated even though restrictions like the statewide mask mandate are set to end April 10.

"I have seen recently that they are starting to recognize that this is a serious problem. It is a real problem," Henderson said, involving a host of health issues stemming from the virus. "I'm hopeful that that's being looked at, it's being studied, and that we will have some answers in the near future."

She said that's important not just for the people hit with what's now being more formally called post-acute sequelae of SARS-CoV-2 infection, or PASC, but also for the fiscal health of the state.

"There can be a really significant effect overall on our economy as people are unable to work or are impacted financially because of all these medical bills," Henderson said. Whether that means there's a role for state government to play in their recovery, however, remains to be seen.

"It's definitely a conversation we need to keep having. We definitely need to make sure that we're recognizing the lingering effects and the long-term problems," she said. "But there certainly is a personal role and a societal role to make sure that we are treating others with respect and kindness and understanding."

'Disease we don't really understand' starting to be studied

Dr. Dixie Harris, an Intermountain Healthcare pulmonary medicine and critical care physician, is excited about efforts underway to help those who continue to be impacted by COVID-19, including a $1.15 billion, four-year initiative by the National Institutes of Health funded by Congress in December.

"The good news is — this is actually fantastic news — there are now big studies starting to learn how to evaluate and learn how to treat these patients," Harris said, and Intermountain Healthcare, the region's largest health care provider, is among those participating.

"It's a disease we don't really understand," she said. "It's very humbling that we don't really understand the immune system extremely well. We're just learning about it."

Harris said when she first started hearing the term long-hauler last July, she realized she'd already seen some patients with post-COVID-19 symptoms. During a stint at a New York City hospital in April, when that city was the epicenter of the worldwide outbreak, she said she saw the effects of the virus "all over the body."

As a specialist at the Alta View pulmonary clinic in Sandy, she estimates she's seen more than 100 patients suffering from symptoms such as shortness of breath and chest tightness, even though few were sick enough from COVID-19 to be hospitalized.

Many end up on oxygen for months, Harris said, and her patients dealt with issues including blood clots and scarring in the lungs, delayed strokes, flare-ups of rheumatological diseases and rashes that had never before appeared.

Her first priority in treating chronic COVID-19 patients, she said, is simply listening to them because estimates are that only 10% to 30% of people who had a mild enough case of COVID-19 to avoid hospitalization end up with ongoing symptoms.

"There's a lot of validation," Harris said. "If you have a family of five, and you're the one who has a headache and brain fog five weeks after having COVID and everybody else in your family is back to normal, you're going to feel like, 'What's the deal?'"

Fatigue is the most common of the many symptoms associated with long-haulers, a lengthy list that includes a loss of taste or smell, body aches, joint pain, headaches, difficulty sleeping and brain fog.

So far, all of her long-hauler patients have improved, Harris said, but still aren't back to normal.

"I do tell them this, I say, 'I've been seeing patients that have had symptoms since (last) March. I understand how this disease kind of can linger and linger and linger,'" she said, adding that COVID-19 and its aftereffects aren't going away anytime soon.

"I think most experts think that this virus is going to be with us in some form for a while, for years. As long as this virus is in the community, there are going to be people who may not get super sick but who may have symptoms that linger," Harris said. "I don't think this is going to get ignored."

Have long-haulers already been forgotten?

Zeb Williams isn't so sure after getting sick last May with "a pretty mild case" of COVID-19 that's left him so fatigued that even when he's up to working at his job in marketing at a nonprofit that finds jobs for people with disabilities, he needs a nap at lunchtime to get through the day.

"It's been hurtful for me to see people say things like, all of these measures that we're taking are overkill for a virus that is just a common cold for a few days. When people use rhetoric like that, it makes me feel like they've already forgotten people who are really hurt by this," he said.

That includes his own father, Williams said, who was hospitalized 10 days with the virus and nearly died.

A 32-year-old self-described "gym rat and outdoor enthusiast" in recovery from heroin addiction, Williams said his post-COVID-19 ordeal caused him to doubt himself, especially when doctors shrugged their shoulders or suggested his symptoms could be swept away by going for a mountain bike ride.

"From the very beginning, it's really psychologically tricky because it's made me feel kind of crazy. You start to second-guess," he said. "I started kind of just questioning if I was being lazy, if it was all in my head. Because everyone was telling me I should be better and back to work by now."

Last summer, though, Williams stumbled across a group of Utah long-haulers on Facebook and realized he wasn't alone.

"Obviously, there was a lot of relief in that. But still some denial there, too," that he had a chronic illness that no one knew how to cure, he said. "It was hard to accept that I couldn't just kick this thing with a healthy lifestyle and positive thinking."

Earlier this year, a friend in the medical profession helped him find an antidepressant that's helped, Williams said, as well as a beta blocker that's eased an elevated heart rate and chest pains that once sent him racing to the hospital, sure he was having a heart attack.

He's still tired, "just like there was lead in my muscles and bones," and achy as if he's coming down with the flu.

Williams said he's had to cut his work hours and relies on help from his partner to pay the bills and take care of their home.

"Life right now, it's kind of a cycle of good days and bad days," he said. "It comes down to pacing. For example, if I have a day at work where I'm not just sitting at my desk, say I have to walk around our building a little bit more, then I have another one of those days the next day. Then, on the third day, I'll be exhausted, sick and stuck in bed."

The experience. Williams said, has given him new empathy for those dealing with chronic illnesses. Before coronavirus, he said he "was one of those people" who dismissed complicated health issues like chronic fatigue syndrome. Now, he knows firsthand why what he termed "invisible diseases" deserve to be recognized.

"My partner brought me flowers home the other day. It felt so nice to have someone (give) me flowers for being sick, you know, because this whole time I've felt kind of like people didn't believe it," Williams said. "You can make a huge difference in someone's life by acknowledging what they're going through."

'Figuring it out as we go' frustrating for patients

Dr. Jeanette Brown, a pulmonary and critical care physician, said University of Utah Health is tentatively set to launch a post-COVID-19 clinic in June that will aid researchers in better understanding the long-term symptoms of the virus.

"Right now, we're figuring it out as we go. I'm sure that's frustrating for patients," said Brown, who is also an assistant professor at the University of Utah School of Medicine. Efforts for understanding include studies crowd-sourced online that helped identify the most common symptoms as well as those that can affect virtually every part of the body.

Still unknown is why some patients end up with persistent symptoms after a bout of COVID-19 and others don't. Although there are theories that the virus may trigger an autoimmune response, she said there's no way to predict whether the disease will linger.

The doctor recalled a patients in his mid-20s who ran 100 miles a week before getting the virus and then feeling like he'd "hit a brick wall. That I think is the thing people don't realize is that so far, we don't have a way to identify people who are going to have long-term illness from it and it can have pretty significant effects."

Because some of those effects aren't visible, Brown also stressed it's important to acknowledge the challenge those with ongoing COVID-19 symptoms face. Having people like the lieutenant governor talk about her own experiences "decreases some of the shame and anxiety that can come with having a disorder like this."

Post-COVID-19 symptoms seldom elicit sympathy and support for sufferers like a broken leg would, Brown said.

"It's hard because they're not able to pull their weight as much at work or at home. It affects relationships. There are lots of real-life consequences to being sick," she said.

The new university clinic will tell patients their situation "is serious enough that we're interested in doing research to understand it better, not just saying, 'Here's where we are and that's all we've got,' but, 'Here's what the future could hold.'"

With more than 2,800 members in a private Facebook group for Utah COVID-19 long-haulers, Brown said she's worried about meeting the demand that may be out there. A Colorado long-hauler clinic has 400 patients, she said, but a waiting list of some 1,400 names.

"I am a little scared when we open the floodgates," Brown said, adding that "hopefully, we can provide them the services they need. I think a lot of it is hope, being able to be connected with people that take them seriously."

'I don't know if we'll ever recover'

Lisa O'Brien created the Utah COVID-19 Long Haulers Facebook group after coming down with what she believes was COVID-19 in the early days of the pandemic last year and never recovering. By day eight of her illness, O'Brien said, "every time I would breath in, it felt like my breath was a million degrees."

But tests for the coronavirus weren't widely available then, so by the time she was finally able to get tested, the results came back negative. Still dealing with shortness of breath and other issues some two months later, O'Brien, 43, said she googled, "Does COVID last forever," and discovered others, too, had "never-ending symptoms."

For her, those have included fatigue and what she describes as a mild cognitive impairment that makes it hard to remember things. O'Brien been able to keep working at a federal agency but has "to leave myself little sticky notes all over."

There's been heart issues, too, but it was the blood clots in her lungs that sent O'Brien to the emergency room more than a half-dozen times that finally changed the minds of family members who "thought I was crazy and just being, like, a hypochondriac."

Doctors were also dismissive and knew little about long-haulers even after they began attracting attention nationally, O'Brien said, so she decided last summer to start the Facebook group that at first, attracted maybe 100 Utahns a month.

"I can't wait for this national news to trickle down to the local level. And I'm not going to wait for help to come to us. I'm going to go get it," O'Brien said. Now, she speaks to groups about what COVID-19 has done to her and other Utahns and is involved with national research efforts.

"People have mentioned it being like the second pandemic, all of us who have not recovered and now have this chronic illness," O'Brien said, adding that she doesn't expect long-haulers to be forgotten even as the rest of the world tries to get beyond its COVID-19 concerns — at least not right away.

"I don't know if we'll ever recover. I don't know what five years from now looks like," she said, questioning how long post-COVID clinics like the one coming to the U. will be around. "Do they get to a point where they're like, this is as much as we can do for you guys? I don't know. Do they keep studying until they find answers? I don't know."

Related topics