The long haul: After COVID-19 infections, some struggle with prolonged recoveries
Lingering and sometimes debilitating symptoms are making it hard for some to get back on with their lives
After catching the coronavirus last March, Dana Gosnell figured she’d be feeling better by now, not worse. Instead, she said she finds herself still facing a confusing and scary array of symptoms.
Gosnell, who lives in Vail, said she was in bed for about 10 days with her initial COVID-19 infection. She had headaches and body aches and “felt crappy,” but started to recover. That changed in early June, when a host of strange symptoms and health problems surfaced and have persisted to this day.
Gosnell, hoping to help others by sharing her story, said she has had difficulty breathing, fatigue, dizziness, a thick mental fog, headaches, neck and shoulder pain, even sight problems, mouth ulcers and heart troubles, and is “starting to freak out a bit.”
The formerly active, athletic woman is now seeking treatment at the Center for Post-COVID-19 Care and Recovery at National Jewish Health in Denver. It’s one of a growing number of clinics forming to help people struggling to fully recover from coronavirus infections weeks and even months later.
That’s because Gosnell is not alone. She and other long-haul COVID patients around the country say they are trying to resume their lives, but finding themselves struggling or unable to, still facing a wide range of mysterious and lingering symptoms.
William Allstetter, director of media and external relations for National Jewish Health, said the post-COVID center is seeing dozens of patients a week and has seen about 1,000 patients so far. It started seeing patients early in the pandemic, knowing people with severe COVID-19 infections would require post-hospitalization care.
Today, patients at the center range from people who were severely ill, who were hospitalized and often put on ventilators and now require physical and occupational rehabilitation that can last for months, to patients with far less severe COVID-19 infections who seemed to recover, but then developed a constellation of symptoms including severe fatigue, brain fog and rapid heartbeat. “These cases are a bit mysterious both in what causes them and how long they will persist,” Allstetter said. “We are conducting research to try to better understand and treat them.”
Gosnell said her nearly year-long struggle to regain her health has been physically, mentally and financially challenging, and left her, a single mother, unable to return to work. Answers to what is ailing her and other long-haul COVID patients are elusive, with researchers not certain what is causing their symptoms to persist. “I’m willing to try anything at this point,” Gosnell said.
With millions of Americans already infected by the coronavirus, the growing recognition of long-haul cases is raising questions for patients and their individual recoveries, as well as about the virus’s longer-term impacts on public health.
While COVID-19 infections have been trending downward in recent weeks, the virus is still infecting hundreds of Coloradans and tens of thousands of Americans each day. Officials continue to stress the importance of prevention to a pandemic-fatigued people, while also trying to distribute limited vaccine supplies to eventually end a pandemic that over the past year has infected more than 409,000 Coloradans and killed 5,500. Nationwide, more than 27 million people have been infected, with about 470,000 killed.
“While the number of people affected isn’t yet known, if even a small proportion of the vast numbers of people infected with COVID-19 develop Long COVID syndrome, it represents a significant public health concern,” Dr. Francis Collins, the director of the National Institutes of Health, wrote on his blog in January.
Some studies estimate as many as 10% of COVID-19 patients go on to become long-haulers, exhibiting a wide range of symptoms of varying severity more than 12 weeks after their initial infections.
“We can’t think of COVID as just 10 days and done,” said Robert Lam, a practicing emergency physician for UCHealth and assistant professor at University of Colorado School of Medicine. “And as the number of cases grows, tragically, so does the number of patients looking at long-haul symptoms.”
Lam and medical students undertook a transition of care study last year that looked at the recoveries of people hospitalized for the virus from March to September at UCHealth’s two main hospitals. “We wanted to know how they were doing once they got home. We rapidly learned that a lot of these patients were not recovering,” Lam said.
That study was recently published in the Journal of Investigative Medicine. It found that about a third of the hospitalized patients had lingering symptoms beyond six weeks of their release.
Lam said long-haul patients can seemingly be split into two groups: People with organ damage caused by the coronavirus, which has a unique ability to infiltrate multiple types of cells, and people with no organ damage from their infections, but persistent symptoms nonetheless.
While some people struggling with persistent long-haul symptoms appear to be older, with two or more underlying medical conditions, such as diabetes or heart or kidney disease, others are younger and otherwise healthy, Lam said. “It is weird, some people with very mild illness also develop this long-haul journey.”
‘Thru-hike across the unknown’
Miles Griffis, an independent journalist in Los Angeles County, California, with ties to Eagle County, said he is one of those people on a long-haul journey. “It has completely changed my life,” he said.
Griffis, in his 20s, thinks he was infected with the coronavirus last February, though he could not get tested in that stage of the pandemic. A year later, Griffis said he’s still struggling with health troubles, including headaches, debilitating fatigue, lightheadedness, various neurological issues and nausea. The symptoms have kept him from working as much as he used to and from recreating with anything near the same vigor as before.
In an essay for Adventure Journal, Griffis describes his long-haul COVID as a “thru-hike across the unknown.” He said he’s been to the doctor more than ever before and been tested for a wide range of possible ailments, all of which have come back normal.
Many long-haulers are struggling to get doctors to take their health complaints seriously, and are having their symptoms written off as anxiety, Griffis said. And while more post-COVID clinics are opening around the country, many require people to have a positive test, something that’s problematic for those who couldn’t get tested early in the pandemic.
Griffis said he and many other long-haulers are connecting with each other on the Body Politic COVID-19 Support Group, as well as other groups on Facebook and Reddit. His case is now being considered by a post-COVID clinic in his area, after being referred by his new physician.
“She believes me and has diagnosed me with long COVID. We’ve ruled out pretty much everything else, and the timeline fits with COVID, so hopefully I’m accepted into the post-COVID clinic,” Griffis said.
For now, Griffis said he’s one of a growing number of long-haulers looking for help and for answers that are difficult, if not impossible, to find. “It’s a despairing place to be in,” Griffis said. “There’s so much attention on the really critical cases, as there should be. However, we also need to be helping patients who have quote-unquote recovered, because many of us haven’t recovered at all.”
‘You’re not crazy, you’re not alone’
Dr. Mindy Cooper at Colorado Mountain Medical said she has seen several local patients with long-haul COVID symptoms. “If I were going to say one thing you could convey, it’s that these people are not crazy. This is a real syndrome. We don’t understand it completely, but it is real,” Cooper said.
Cooper said in her own practice she’s not seeing the same prevalence of long-haul COVID cases being reported nationally. But she encourages any local residents who may be suffering from ongoing, persistent symptoms to focus on good sleep hygiene, staying hydrated, and taking care of themselves.
She also encourages people to see a physician, and to make sure that their physician is listening to them, and seek out counseling services if they are needed. The pandemic has taken a heavy toll on mental health, and lingering symptoms and difficulties weeks or even months after a COVID-19 infection only compound that.
“It’s not in your head, you’re not crazy, and you’re not alone,” Cooper said about long-haulers, encouraging people still struggling with symptoms to seek out help and not give up hope.
‘It’s not slowing down’
In the town of Fruita, in Mesa County, Family Health West recently started a Post-COVID Recovery Team. The area saw a surge in infections last fall, and the health care provider started hearing about people who got over their initial COVID-19 infections but are still having a wide range of lingering effects.
With the varied long-haul symptoms people are reporting — ranging from fatigue and respiratory complaints to neurological, psychological and speech problems and joint pains — treating people required more than a one-doctor’s-office kind of approach, said Stacey Mascarenas, director of communications for Family Health West.
“We’re fortunate that we’re a large enough system, it was easy to collaborate and to bring people together to talk about case studies, and it was like, let’s create a clinic where we can bring all these specialists together, and that was what we did,” Mascarenas said.
In a month and a half, the clinic has over 100 patients. “It’s not slowing down. We’re getting inquiries daily. They go through an assessment process because everyone is unique. Everyone who has COVID or got COVID reacts differently,” Mascarenas said.
In addition to seeing a doctor or seeing a counselor, Mascarenas also encouraged people facing long-haul symptoms to jot down notes about what symptoms they’re experiencing and when to share with their physician or mental health counselor.
While the federal and state governments try to roll out vaccines to eventually end the COVID-19 pandemic, Griffis said he encourages people who have not yet been infected by the virus to continue to be vigilant in avoiding it.
“This condition could be completely life changing, it could take a year of your life or more. And it’s not just affecting elderly people. A lot of the long-haulers I’ve talked to are young people in their 20s, 30s and 40s who were in super good shape before this,” Griffis said.
Tom Lotshaw can be reached at firstname.lastname@example.org.