Anthony Lavergne of Gardena, California, wears a T-shirt that says, “I survived COVID-19. I’m still kicking.” The shirt has a picture of him from his stay at Cedars-Sinai Medical Center in Los Angeles, during which he was in a coma from late March until mid-May 2020. Lavergne believes he contracted COVID-19 through his long-time job in the air freight business.
Lavergne says it’s a miracle that he’s alive today. He lost 50 pounds and had to learn to walk again. He almost died. His Cedars-Sinai hospital stay was followed by a month at a specialized respiratory hospital.
Yet Lavergne’s struggle against COVID-19 didn’t stop with his hospital stays. He fights depression, brain fog and post-traumatic stress disorder. He attends physical therapy and is learning how to reuse his right hand, which had nerve damage after a stroke while in the hospital. He has continuing lung and heart issues, and he hasn’t been able to return to work.
The Struggle of Long COVID
An estimated 10% to 30% of people who have had coronavirus continue to have symptoms in the weeks and months after. Those with these symptoms are called long haulers, and the health issue itself is referred to as long COVID, post-COVID syndrome or post-acute sequelae of SARS-CoV-2.
Because COVID-19 can affect many organs of the body, the symptoms that long haulers experience span a wide range and can include:
— Brain fog and difficulty concentrating.
— Continued problems with a sense of smell or taste.
— Continued shortness of breath.
— Gastrointestinal issues such as diarrhea.
— Heart problems such as palpitations.
— Mental health issues including anxiety and depression.
— New onset of health conditions such as diabetes or lupus.
It’s not clear yet why some people and not others experience long COVID, how long these symptoms will last or if some of the health issues will be chronic. Long COVID appears to be more common in women and in those who are relatively healthy and younger.
Health experts are still trying to determine why these groups are more vulnerable to long COVID. One theory is founded on the difference in immune response between men versus women. Younger and middle-aged women are already more prone to autoimmune diseases such as lupus and fibromyalgia, which have some overlapping symptoms — like fatigue — with long COVID.
The Role of Post-COVID Care Clinics
With the large influx of long haulers entering the medical system, some hospitals and medical groups have created specialized post-COVID care clinics. These clinics aim to offer care for the broad range of problems a person with long COVID might experience.
Post-COVID clinics have emerged for a few reasons, according to Dr. Catherine N. Le, an infectious disease specialist with the Cedars-Sinai Medical Center and co-director of the Cedars-Sinai COVID-19 Recovery Program:
— Long haulers have not always seen their doctor in person for symptoms because they were afraid to or the physician’s office wasn’t open during the pandemic. “Things were falling through the cracks,” Le says.
— Some patients who did seek medical attention felt their providers didn’t believe in or take an interest in their symptoms. Or, they would see their doctor but get immediately farmed out to several different specialists.
— Medical providers realized there was a huge opportunity to capture data about long COVID and answer research questions about it. Some patients want to be part of research related to long COVID and any treatment advances, says Dr. Sritha Rajupet, director of population-based health initiatives and primary care lead for the Post-COVID Clinic at Stony Brook Medicine, and deputy division head of graduate medical education at Stony Brook University in Stony Brook, New York.
There are 40 states so far with post-COVID care clinics, according to Survivor Corps, a group geared toward helping those with long COVID. Many, but not all, post-COVID care clinics are at large teaching hospitals in major cities, says Diana Berrent, founder of Survivor Corps.
How Post-COVID Care Clinics Work
Each post-COVID care clinic may operate a little differently, but the general idea is to receive an initial assessment, perhaps by a primary care provider, to get an overall sense of the health issues a long hauler faces.
Because the symptoms can be so diverse and complex, Dr. Kathleen Haggerty, an internal medicine specialist with the Watson Clinic’s post-COVID clinic in Lakeland, Florida, says that she spends an hour with each new patient — an extraordinary amount of one-on-one time with a doctor in many medical practices.
After that, the person then sees other specialists within the same health system depending on their health issues. At the Stony Brook Medicine Post-COVID Clinic, they will try to set several follow-ups on the same day for convenience, Rajupet says. The clinic location includes radiology and a lab, as well as several specialists, so “one-stop” visits are easier.
Specialists who are part of a post-COVID care clinic may include:
— Cardiologists, or heart doctors.
— ENTs, or ear, nose and throat specialists.
— Infectious disease specialists.
— Nephrologists, or kidney doctors.
— Neurologists, who treat brain and nerve disorders.
— Neuropsychiatrists, who treat nervous system disorders that affect mental health.
— Physical medicine and rehabilitation specialists.
— Physical, occupational and speech therapists.
— Pulmonologists, or lung doctors.
Treatments Offered at Post-COVID Care Clinics
The treatments offered at post-COVID care clinics will vary depending on the problem, but examples of the treatments offered include:
— Medications or rehabilitation treatments for those with new heart issues.
— Physical or occupational therapy. Physical therapy helps with physical function and chronic fatigue. Occupational therapy helps people to complete everyday tasks of daily living, such as getting dressed or using the bathroom.
— Pulmonary rehabilitation for those with shortness of breath or other breathing problems.
— Smell training for those with a continued loss of smell.
— Therapy or medications for anxiety or depression.
Tests and treatments can pinpoint how well a person can function so they can build back up any areas that are currently causing difficulty, Haggerty says.
Patients at post-COVID care clinics also like having a reliable point person they can lean on for questions, such as how much exercise is realistic based on their fatigue level, Rajupet says.
Clinics can also get to the bottom of what’s really happening with a patient’s symptoms, as Daria Fahrenkrug of Middle Island, New York, discovered. After having COVID in January 2021, she continued to have heart palpitations and a fever that hovered around 100.7 degrees but sometimes spiked to more than 101 degrees. Because of the fever, the New York Department of Health wouldn’t clear her to return to work as a manager at a veterinary hospital. She was home for several weeks and wondered if she would have to avoid work over the long term due to her chronic fever. A visit to an urgent care center provided no answers.
After finding the Stony Brook Post-COVID Clinic, tests revealed that she had mononucleosis, also called Epstein-Barr virus, that was reactivated by the coronavirus. She wasn’t aware that she had mono in the past. She followed the home-based treatments for mono — rest, fluids and ibuprofen for fever — and was able to return to work in late April. Discovering the cause of her persistent fever provided relief, Fahrenkrug says.
Are the Treatments for Long COVID Effective?
Overall, health providers see progress in their post-COVID clinic patients. “Anecdotally, a fair amount of patients improve over time, but it’s slow and steady,” Rajupet says. “Others haven’t seen the improvement they’d like to see.”
Ideally, getting patients back to what they consider normal is the goal, but that’s not always possible, Le says. However, clues from other post-infectious inflammatory or fatigue syndromes indicate that patients do get better over time, she explains.
The inability to offer concrete answers on when improvement might occur is a challenge but also a bonding point between providers and patients, Rajupet says.
Lavergne, who was in a coma for six weeks, has made progress but still continues various treatments a year later.
Going Forward With Post-COVID Care
One concern for Berrent is the sheer number of patients who may require help with long COVID in the future. As of mid-May 2021, 33 million people in the U.S. have been infected with the coronavirus, according to Johns Hopkins University. It’s estimated that 10% to 30% of those infected go on to develop long COVID; that means anywhere from 3.3 million to 10 million may need the resources of a post-COVID-19 clinic.
Some people may not even be aware of how COVID affects their health; effects can include tooth loss and dental problems, vision changes and hearing loss, Berrent says. “If you think of this as a war, then these are our veterans. We need to take care of them. It’s hitting people in the prime of their life who are often the economic backbone to families,” she says.
Berrent would like to see multidisciplinary clinics where providers communicate with each other about patients, take a whole-body approach and offer access regardless of where someone lives or their insurance status. There can be different expectations for a post-COVID care clinic at, say, a small community health system versus a teaching hospital in a big city. She also would like to see effective long COVID guidance for children, some of whom are also experiencing post-COVID symptoms.
4 Tips If You’re a Long Hauler
There’s no magic pill that will cure long COVID. However, there are things you can do to make life a little more bearable as you try to get better, health experts say.
Here are a few tips:
1. Seek out a post-COVID care clinic if you can, but find out which specialties it has and their timeline.
“Everyone wants to add ‘post-COVID’ to their name now,” Berrent says. Some of them, especially at smaller medical groups, may not have the specialists that you need. Clinics like the one at Cedars-Sinai ask for referrals from a primary care provider and evidence of a positive COVID-19 test. They also focus on patients who still have symptoms three months after having coronavirus. That’s because many post-virus symptoms may resolve on their own within that time period. Those who were hospitalized can be seen four to six weeks after having the virus.
If you don’t live near a post-COVID care clinic, ask about telehealth options, Rajupet says. Stony Brook doctors worked with some patients from upstate New York via telehealth, but there can be restrictions on treating patients from out of state, she adds.
If a post-COVID care clinic isn’t available to you, find a primary care doctor who is motivated to help you get better and who will listen to your concerns.
A good primary care doctor can make sure you don’t have underlying heart or lung issues and can screen and treat mood disorders like depression or anxiety, Le says. Also, ask if you need pulmonary rehabilitation, as this is something that has helped post-COVID patients across the board improve, Le adds.
2. Follow some common-sense healthy living practices.
Many of Rajupet’s patients who are motivated to get better follow common-sense health advice.
— Getting regular exercise. Talk to your health provider about what suits you best, depending on your health, where you are in your virus recovery and fatigue level. If you have heart or breathing issues, you’ll want specific guidance from your doctor on when you can safely exercise after having COVID-19 again. Some of Rajupet’s fatigued patients are doing tai chi and chair yoga.
— Sleeping adequately. Most adults need seven to nine hours of sleep.
— Eating healthy. This includes vegetables, lean protein sources, whole grains and getting enough water.
3. Stay positive.
It’s hard to stay upbeat when you don’t know what’s happening to your health or how long you’ll have certain problems. Still, good things still happen, Lavergne says. He finds it refreshing even just to see his health providers in person versus doing telehealth. Find your own way to stay positive.
“People do get better, and there is light at the end of the tunnel,” Le says.
4. Talk with your doctor about when you should get the COVID vaccine if you haven’t received it already.
This can help protect you against reinfections and keep others around you safe. Some people with long COVID find their symptoms improve after getting the COVID-19 vaccine. Researchers at Yale University in New Haven, Connecticut, are currently studying the effects of the COVID vaccine on long haulers.
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Update 10/26/21: This story was previously published at an earlier date and has been updated with new information.