Marlon Meyer
Northwest Asia Weekly
Robin McNowski (Credit: Robin McNowski)
Working as a full-time caregiver at her mother’s hospice in a remote New Mexico town prepared Robin McNowski. The following year, she contracted a long-term infection with Covid-19 — and is still haunted by the disease.
McNofsky, 61,’s story highlights the emotional and physical complications of people living with this dire disease, as well as the limitations and promises of medical science.
As of last week, more than 460 million people worldwide have been infected with COVID-19. Of those with mild symptoms or no symptoms, studies have shown that a full 30 percent may face a long-term Covid-19 infection that stems from an initial infection that then evolves into other, often more frightening symptoms.
According to another study, more than 87 percent of people discharged from hospital after a more severe COVID-19 episode developed long-term symptoms of COVID-19.
“I think if only 10% of people with COVID-19 develop long-term COVID, that’s still millions, tens of millions,” McNofsky said.
stigmatized disease
In the early months of the pandemic and until recently in many places, long-term COVID was considered a psychosomatic disease. Patients are told they are experiencing panic attacks etc.
For Macnofsky, it started simple – headaches, fatigue, she chose to downplay her symptoms, she had just been caring for her mother for six months, and she was suffering to the end.
Macnofsky decided not to use nasal swabs early in the pandemic, when nasal swabs were scarce, and he thought other people with more severe symptoms could use it.
When she was finally tested, it came back negative as her symptoms worsened.
“Whatever this is,” she thought at the time, “at least it’s not COVID-19.”
a mysterious disease
One of the problems with not having a definition of the disease, let alone understanding how it works, is that no doctor can provide a patient with a diagnostic test to see if he or she has long-term COVID. Instead, doctors must first rule out any other diseases or health problems that may be causing the symptoms.
PhD. Eric Chow (Credit: University of Wisconsin School of Medicine)
“There are no laboratory tests that can confirm long-term COVID, and a big part of that is making sure we don’t miss alternative diagnoses that can be treated with medication,” said Eric Chow, respiratory virus epidemiologist and lead infectious disease investigator. University of Washington (UW) Medicine hospital. Zhou was also one of McNowski’s doctors.
Upinder Singh, one of the founders of Stanford’s Long-Term COVID Clinic, said it’s essential because other diseases can mimic long-term COVID.
“So if someone walks in, if I’m a primary care doctor, I’d make sure everything else, maintain their health, make sure they don’t have anemia, make sure their thyroid is normal, all the other things, make sure there’s nothing else wrong,” she said .
Dr. Urbind Singh. (Source: Stanford University)
In McNofsky’s case, she eventually got to the point where she couldn’t walk, think, or move. She lay in bed like a “zombie” for days. Eventually, her husband found her passed out on the bedroom floor for a day and took her to the hospital. Then more severe symptoms start to appear.
She lay on a stainless steel plate—the kind used in morgues, she thought—with blurry eyes and no glasses, watching a dozen or so surgeons walk around her. For this procedure, the patient must be fully awake. She felt a long needle pierce her heart and stopped abruptly so it could pump water from the bag around it. The nurse showed her a large plastic bag containing four cups of the pink serum they had taken out.
“I can’t accurately express my extreme anxiety, sleepless nights or general discomfort during my hospital stay,” she said.
A disease with no clear boundaries
One of the dangers of long-term COVID is that it triggers and weakens the immune system. The researchers believe this is why many people subsequently re-infected with the coronavirus and developed another case of COVID-19 on top of long-standing COVID symptoms.
Macnofsky suffered from fever, shortness of breath, confusion caused by language impairment, cognitive decline (“like a car that won’t change gears”), severe headache, insomnia, extreme fatigue (“like concrete in my veins instead of blood”), depression and anxiety, and, more recently, her concerns about short-term memory loss and loss of multitasking.
That’s why at clinics like Stanford, researchers are studying new studies and reports about the disease every day.
PhD. Linda Geng (Source: Stanford University)
Linda Geng, co-director of Stanford’s long-term COVID clinic, said: “Every day there are new papers, sometimes multiple papers, and then you have to discern: Is this going to affect how I practice? Is this going to affect how we think about long-term COVID? You have to make that judgment based on the rigor and context of the research, and of course the individual patients in front of you.”
signs of help
After the operation, McNofsky was isolated in a room with a drain attached to a bag around her heart.
One night, her mother appears to her in a dream, dressed in a quirky outfit but one that fits her life and personality. Her mother was an artist and mask maker before becoming a Jungian psychotherapist. She is very famous in San Diego, where she lives. At one point, she worked with the sister of Mark Hamill, who played Luke Skywalker, so she’s a Star Wars fan.
In the dream, McNofsky saw her mother come down from the clouds in the kind of starship Senator Palpatine used in a later movie. She was wearing a costume that looked similar to the protective suit nurses wore early in the pandemic, but was made of Japanese paper. And her face is barely visible because the mask is like a wolf mask.
“But I could see her in the eye, and she told me, ‘Here I am,'” said McNofsky, a former author, poet and editor of the Berkeley Poetry Review.
Acknowledging the breadth of the crisis, the government began devoting resources to increasing research into long-term COVID, starting with a four-year study aimed at enrolling 15,000 people nationwide.
Researchers like Chow say it is critical to assess data across the disease course.
Some pre-existing conditions or early signs that a person will have long-term COVID, appear only in the early stages. Zhou said some people may not show up if doctors try to test them later and a person is actually experiencing all the full-scale symptoms of long-term COVID.
To the surprise of clinicians and researchers, the disease can strike young people with few symptoms while bypassing older adults who might be expected to be susceptible.
McNofsky was surprised, too, because she eventually found a group of other people online who had endured prolonged COVID.
“Most of them are young, healthy people without any congenital diseases, in very good shape, some are training for marathons and biathlon, some are professional dancers,” she said. “Today, people with healthy lifestyles … think they have a strong immune system, so they’re not afraid, but it’s coming to get them — that’s not going to work with long-term COVID. Because You can have an asymptomatic or very mild case and it will recur again and again after a few weeks.”
Getting help is crucial
As McNofsky navigated the next few months and now years of a prolonged COVID-19 bout, she felt her mother was with her.
With so many people chronically infected with Covid-19, it’s critical to seek support. Even at a clinic with a large staff like Stanford, there are long waiting lists.
Experts recommend starting with a primary care physician. If you don’t have one, get it now. This doctor can then refer you to a long-term COVID clinic, such as the one at Stanford or the one at the University of Wisconsin.
Because disease has many manifestations, for example, the Stanford clinic has a team of experts representing infectious diseases, internal medicine, cardiology, neurology, autonomic neurology, headache clinics, pulmonology, gastroenterology, rheumatology, sleep medicine, Psychiatry, psychology, ENT, endocrinologist, etc.
“It was literally a list of all the specialists I saw in the hospital,” McNowski said. “I mean, seriously, they just come and go.”
People can also participate in studies, such as the RECOVER study by the National Institutes of Health (NIH).
New Horizons – or not?
McNowski is now able to articulate what was once unspeakable.
For example, she was paralyzed when Chow asked her to choose a new primary care physician in the UW system at the computer. She couldn’t explain that her brain was “broken”. She could barely continue the conversation.
Today, two years later, she has clearly recovered, but is still unable to go up the mountain.
But in a sense, McNowski is one of the luckiest people, if that word can be used to describe someone who has experienced what she has.
Thankfully, she has health insurance. And a caring husband with a steady job.
In that regard, many in her long-term cohort of COVID survivors are faring far worse and have lost hope.
“Many people lost their jobs, their savings ran out, their marriages fell apart, they lost their health insurance,” she said.
One of the most promising things that has emerged recently for those infected with COVID-19 is that new oral drugs may stop the progression of long-term COVID.
“It’s a million dollar question,” UCSF School of Medicine professor Anne Lutkemeier told Northwest Asia Weekly in a March 17 presentation sponsored by USC Annenberg Health. said a question. Journalism.
“It’s only natural,” Luetkemeyer said, that they would play a role in slowing or preventing the development of long-term COVID because, like other viral diseases, such drugs reduce the inflammation that appears to be responsible for long-term COVID-19.
Still, Aaron Carroll, Indiana University’s chief health officer, also said in the Annenberg presentation that few people currently have access to these antiviral drugs in time for them to work.
He said the U.S. health system was built to prevent people from getting care, which meant delaying access to drugs like Paxlovid or Molnupiravir. Unless these new oral medications are taken within a few days of symptoms appearing, it is too late for them to work.
He said that unless a person has significant resources and time, it is nearly impossible to see a doctor on the same day that a person asks for, making it impossible to get a drug prescription right away. Other than that, no pharmacy has been found where the pills are stored.
Moreover, most of the new drugs have to be taken in large quantities, 40 capsules in five days, and some are overwhelmed.
recover
Today, McNofsky celebrates that she can walk her dog for an hour, cook for her family, and clean the house.
“These feel like victories.”
At the same time, medical researchers have had their own breakthrough – now a vaccine has been found to greatly reduce the chances of developing long-term COVID.
“Based on the available data, the vaccine appears to protect against long-term COVID in two ways—one by preventing the infection itself, and the other by reducing the chance of persistent symptoms in the event of an infection occurring after vaccination,” Chow said.
McNofsky insists her condition has improved markedly with each vaccination.
“My walking stamina has improved, my fatigue has decreased, my headaches have decreased, and a range of symptoms has decreased. The daily fever is gone,” she says — even though six months later her booster is working. subsided, but the fever is slowly returning.
“I bought a really cool paddle board,” she said. “By the summer, even if I don’t get up, I’m going to hold on.”
To participate in the NIH RECOVER study, visit openredcap.nyumc.org/apps/redcap/surveys/?s=TYCLM7PE97
For UW’s long-term COVID clinic visit
uwmedicine.org/specialties/post-COVID-rehabilitation
For a list of COVID clinics across the country, visit survivorcorps.com/pccc
This health series is supported by funding from the Washington State Department of Health, which has no editorial input or oversight on this content.
Mahlon can reach info@nwasianweekly.com.
