‘I Just Can’t Keep Going’: Long Haulers Wonder When Or If They'll Recover
It took the fear of having a stroke to get Christa Hines to finally accept what she had known all along: Despite what doctors had been telling her, she was not OK.
Hines had been recovering from an April coronavirus infection and, by June, felt well enough to try a light version of her typically vigorous pre-COVID-19 activities, including yoga and yard work. But that much exertion threw her into a tailspin.
After that weekend, her heart rate started spiking, she would feel dizzy and she began to find herself struggling to remember words.
“I never returned from that,” Hines, 50, said.
About eight months after she tested positive for the coronavirus, Hines is slowly getting better with the help of multiple doctors, support from other people facing long-term coronavirus symptoms and her own self-help.
But the Portland psychotherapist is just one of potentially thousands of “long hauler” Oregonians who are struggling or will struggle for months, if not longer, with a variety of symptoms following a coronavirus infection.
And those symptoms can be debilitating.
For Hines, the virus’s aftermath left her unable to walk two houses down the street to deliver a gift to her neighbor. For another, chronic exhaustion made one load of laundry become a two-day affair. Another said her joints left her feeling like a 90-year-old.
Three Oregon long haulers shared their experiences with The Oregonian/OregonLive, describing confusion and fear as they faced doctors skeptical of their symptoms, not knowing when – or if – they’ll get better.
The general public knows by now what to expect from an initial coronavirus infection and the dangers that come with it: the persistent cough, fatigue and shortness of breath that can fade away or, in worst-case scenarios, land people in a hospital or even kill them.
Less familiar are the long-term problems that can follow a COVID-19 infection. For long haulers, the disease’s initial symptoms can linger for months, including body aches and difficulty breathing. They can also experience symptoms that are altogether different, such as a racing heart for no apparent reason, dizziness, rapid drops in blood pressure and brain fog.
As many as 10% of coronavirus patients struggle with long-term symptoms after a coronavirus infection, Oregon Health & Science University doctor Eric Herman said, meaning that as of today, as many as 10,000 Oregonians could already have or may develop ailments.
Perhaps one of the biggest challenges for long haulers is the fight to be recognized and understood, among not only those who quickly recovered from COVID-19 but also the millions of Americans who have never been infected.
Hines said her trust in doctors clashed with her awareness that her body was malfunctioning. Over the course of a month, she said she called her doctor about five times to recite her symptoms, only to be told to keep monitoring – or to never get a call back at all.
One July morning, for the first time in her 25-year-career as a psychotherapist, Hines slept through an appointment with a patient. Soon after awakening, her right arm felt heavy and the right side of her face was drooping. She had trouble finding words when she spoke, she said, and she felt dizzy.
Hines called her doctor again. This time, the office told her to go to the emergency room. That’s when she finally came to the conclusion she didn’t need to doubt herself.
“I’m not going to keep putting up with this anymore,” Hines said she thought at the time. “Because I know I’m really, really not OK.”
That validation was key. She later met with a neurologist who said she had poor blood flow and her body was failing to regulate automatic functions like body temperature, heart rate and blood pressure – Hines’s first official diagnoses that matched what she felt.
Hines said she feels much better now, though she’s far from out of the woods.
Just a few weeks ago, Hines ate a bowl of oatmeal, went to scrub some dirt out of a comforter and suddenly felt her heart drumming inside her chest. Her Apple Watch said her heart was beating at 150 beats per minute.
It took 45 minutes of lying in bed for her body to calm down.
“I don’t know,” she said, “if I will ever be able to function like I did prior to having COVID.”
In less than a year, scientists across the globe have raced to develop and distribute a vaccine to halt the coronavirus, which has infected 17.4 million Americans and killed 313,000, including, as of Thursday, 1,283 Oregonians.
Despite the medical advancements to battle the disease, little is certain about long-term symptoms of COVID-19, including how many patients become long haulers, what can prevent the condition and what can be done to help.
The phenomenon first started to gain attention in late spring, as long haulers banded together in Facebook groups and news accounts described their struggles. Since then, studies have confirmed that some coronavirus patients stay sick for months.
According to one study, 125 of 143 patients in Italy had symptoms two months after their first COVID-19 symptoms. Another study, from the United Kingdom, estimated that one in 10 coronavirus patients has prolonged symptoms.
But in what is a sign of hope, the condition has clearly caught the attention of some of the highest placed scientists in the U.S., even if they do not yet have a lot to offer beyond recognition of long haulers’ plight.
“Little is known about what causes the persistence of symptoms, what is impeding full recovery, or how to help the long-haulers,” Dr. Francis Collins, the director of the National Institutes of Health, recently wrote.
Michele Finicle and her 10-year-old daughter, Ellie, got sick with the coronavirus in early spring.
Both coughed, felt exhausted and had fevers over 100 degrees, Finicle said.
But the symptoms passed in less than a month. “We thought, ‘Oh, we survived,’” Finicle, 44, said.
Finicle tested positive for antibodies in late April. Her daughter wasn’t tested for the coronavirus or antibodies, Finicle said, because tests were scarce at the time.
But soon after symptoms subsided, Finicle and Ellie seemed to get sick again.
During the day, Ellie would feel exhausted, then at night her stomachaches were so severe she would writhe in agony. Finicle, meanwhile, had chest pains, an extremely fast pulse and constantly felt tired.
For Finicle, her condition reached a crisis point in May when her blood pressure dropped so low that she passed out. She said one attendant at the Silverton emergency room laughed when she said she believed it could have been connected to her case of the coronavirus.
“In the beginning, it was a terrible experience,” Finicle said of her attempts to get help. “They were very disbelieving. Which is bizarre. It’s a novel virus, right?”
Finicle and her daughter finally got help through an infectious disease pediatrician at OHSU, who Finicle said told them they both had dysautonomia. That’s a condition when the part of the nervous system responsible for automatic functions, such as managing temperature and blood pressure, starts to go haywire.
“She was the first real person who believed us,” Finicle said.
Michele Finicle, 44, and her 10-year-old daughter, Ellie, of Silverton, OR were each infected with the novel coronavirus in March of 2020. They both saw their symptoms initially pass in about a month, but then seemed to get sick again. Ellie experienced stomachaches and exhaustion, while Michele has chest pains and a rapid pulse. In the months since, their symptoms have come and gone, with improvements repeatedly undercut by a return to square one. "It reminds you who's in charge," Finicle says. The Oregonian
Finicle tried to rest as much as she could during the summer, and by the beginning of the school year, she felt better. So, she went back to work as a teacher. With every week, however, her exhaustion grew until she felt as if she was 90 years old and could hardly get out of bed to instruct fifth- and sixth-graders over online classes.
Her doctor told Finicle she had to stop working, and she’s been on family leave ever since. Her symptoms have since subsided, but Finicle said she’s afraid of what might happen if she goes back to teaching next year.
Like everyone else Finicle has talked to, there are times she feels like she’s getting better. Then, suddenly, it’s back to square one.
“It reminds you who’s in charge,” she said.
One of Oregon’s chief medical research institutes is planning to help long haulers heal, focusing first and foremost on patients’ need to be understood.
OHSU hopes to launch a clinic early next year devoted to people struggling with long hauler syndrome. One of its key goals will be to validate patients’ experience, said Herman, the OHSU physician leading the project.
From what he has learned of the syndrome, it’s vital for people to find support and understanding.
“When patients feel heard and validated, they feel empowered, and they feel that they can develop a trusting partnership with their physicians,” Herman said. That, he said, is “the key piece for accelerating the healing process.”
The clinic will also aim to improve people’s quality of life so they can go back, as much as possible, to their pre-infection days. That might mean setting up a specialized exercise regimen, for example, or telling people to stop pushing themselves and rest.
But given how little is still known about long hauler syndrome, Herman said he also hopes the clinic will help doctors figure out exactly what patients need. One of the first steps will be to understand all the symptoms people experience, he said, as well as the treatment and support that make them feel better.
And Herman recognized the frustration patients are going through trying to get help from providers who don’t know much about long-term symptoms of the coronavirus.
“We’ve heard that patients are frustrated, and understandably frustrated, because we’re sort of in a learning curve right now,” Herman said. “And we’re trying to get up to speed as quickly as we can.”
For some people, help can’t come soon enough.
Jess Christian-Roth, 47, said she has had coronavirus symptoms ever since March, when she tested positive for the virus.
She could barely walk the distance from her bedroom to the kitchen and had hardly enough breath to hold a conversation.
The symptoms persisted and, in June, her doctors recommended that she move somewhere with drier air. Christian-Roth pulled money out of her retirement account and moved from Kent, Washington, to live in a travel trailer near Prineville with her wife.
Jess Christian-Roth, 47, has suffered with persistent coronavirus symptoms ever first she first got sick in March. One load of laundry takes two days, she said, and she doesn't have the strength to wrap Christmas gifts for her grandchildren.
She hasn’t worked since March. Even if she had a job, she’d only have enough energy to work for one hour a day, she said. As she spoke, Christian-Roth paused to cough.
“Sorry, talking still kind of makes me winded,” she said. “Even all these months later.”
But what’s been particularly frustrating, Christian-Roth said, is the dismissal of her condition by friends and family and her requests that they take the virus seriously.
A relative wrote a post on Facebook saying people shouldn’t wear masks. When she pushed back in a comment, he blocked her, Christian-Roth said, and they haven’t talked since. And a friend blocked her after Christian-Roth commented under a post lamenting the need to wear protective equipment to work.
“I told them a little bit of frustration could save lives,” Christian-Roth said. “And then we weren’t friends anymore.”
Since moving to central Oregon’s high desert, Christian-Roth said it became easier to breathe. But she believes she has relapsed.
She’s back to using an inhaler. She has body aches. She can barely taste anything, she said, and she constantly smells burnt toast.
Even sitting down to wrap gifts for her grandchildren is exhausting. She gave up this week, Christian-Roth said, telling them they’ll get gifts after Christmas.
“I just can’t keep going,” she said.
Christian-Roth urged Oregonians to take appropriate precautions to protect themselves from the sometimes long-lasting consequences of the coronavirus.
“This isn’t something you just get over in two weeks,” she said. “You don’t necessarily get over it.”
-- Fedor Zarkhin
This story is part of a collaboration of stories showing #thehumantoll of the pandemic in Oregon by more than a dozen media outlets.
Dec 21 2020