Bill and Carol Yates are both workout fanatics. Married nearly 50 years, they have both competed in triathlons. For two years, they sailed together from New England to the Caribbean.
Last August, they both caught COVID-19 at a meeting of their bible study group.
Now, more than three months later, they both have been diagnosed with long COVID.
In the initial infection, Bill, 78, had little more than body aches and fatigue. Carol Yates, 79, developed a terrible cough and ended up hospitalized for nearly three weeks. She had gone by ambulance Aug. 27 after fainting, her fall broken by the bathroom door when she fell against it and slid to the floor – the door stop poked a hole in the wall.
Bill called a neighbor who was a nurse; she rushed over to take Carol’s oxygen level. It was 70 percent. Normal is around 95 or above.
Today, three months later, both Bill and Carol are fighting the mysterious syndrome known as long COVID. At first, Bill’s only obvious symptoms following the achy fatigue of initial COVID were weight loss and depression triggered by missing Carol – he wasn’t allowed to see Carol over those three weeks she was hospitalized. Instead, he baked brownies and brought her Sonic milkshakes every day, waiting in the lobby to make sure someone took them up to her.
But silently, as the weeks passed after Carol’s release, his blood pressure began to climb and his resting pulse was faster, up from 50 to 60 beats per minute to 70 to 80. Bill went to his cardiologist, Dr. Brian Deonarine, for a workup. It turned out his atrial fibrillation, discovered and brought under control in 2019, had returned. Deonarine diagnosed long COVID.
Carol had it too, and worse. After weeks of feeling “like every breath was my last breath,” she remembers being wheeled out to the hospital’s portico to Bill’s waiting car one day. She can recall thinking to herself in a fog of confusion: “Oh, OK. I guess this means I’m well.” But she felt anything but well. That was in mid-September.
It was November before she was able to brush her teeth without gasping for air. Finally, a couple of weeks ago, she was weaned from an ever-present oxygen machine. And she can walk around the neighborhood without Bill trailing her with the portable oxygen tank.
Thanksgiving Day marked a milestone. Invited to a neighbor’s house for dinner, Carol was able to socialize standing up.
“People told me, Carol, sit down, and I said, no, I have got to get strong.”
She is just getting back to lifting weights again, though “sometimes only doing one set.” She is walking 15 to 20 minutes a day. Bill is still tracking her stats every day – her blood pressure, which for some reason has lowered, and her oxygen level, which has steadily improved. One day she even got to 100 percent.
But the cough from COVID has never cleared completely; it interrupts her speech every minute or two. And her mind is still foggy, she says. It was hard for her to pin down the time frame of her illness – and no wonder. It’s been going on for almost four months.
As the Delta surge retreats and a new variant threatens, several thousand COVID-19 patients infected during the Delta surge in Indian River County may be living in the limbo of long COVID, out of the woods of an active infection, but plagued with symptoms that have not resolved.
That estimate, up to one-third of the 10,000 people infected here since late July, comes out of a new study released earlier this month on long COVID syndrome.
Applied over the course of the pandemic, the study’s finding would mean up to one-third of Indian River County’s 22,000 reported cases – more than 7,000 people – took months to transition back to their former health.
The rate for hospitalized patients is much higher. One study examined records of a quarter-million COVID survivors, 79 percent of them hospitalized. Of those, more than half suffered physical or mental symptoms for two to six months. Topping the list of complaints were trouble getting around to manage daily life, either due to muscle pain or fatigue; breathing problems; and mental health disorders including difficulty concentrating and generalized anxiety syndrome.
Among COVID-19 patients who aren’t hospitalized but go on to develop long COVID, one-third never had a single symptom when they were first infected, according to one recent analysis.
Vero pulmonologist Dr. Diego Maldonado saw firsthand the recent ravages of acute COVID in the ICU at Cleveland Clinic Indian River Hospital. He feels the Delta variant is bound to generate more long COVID cases than previous surges since it produced more severe disease, a red flag that long COVID is more likely to develop.
Delta cases began receding in early September and had dipped to 2020 levels by mid-October.
But long COVID diagnoses resulting from delta infections will likely continue to show up for another month or so and could stick around well into the new year.
Beyond Delta, this county may see many more long COVID cases than its neighbors to the south, Maldonado said. That’s because Indian River County has a disproportionately high number of older residents.
“We are seeing much more long COVID here than in other counties, and probably more than other states,” Maldonado said. “The age of our population here and in Florida is very advanced.”
With the odds of developing long COVID increasing with the severity of the initial infection, and that the risk of severe infection increasing with age, Maldonado says it stands to reason that an area with a large retirement population will see more long COVID patients than elsewhere.
“We probably have more than 70 percent of (hospitalized COVID patients) that are over 65 years old. If you extrapolate that patients over 65 with comorbidities are at risk of long COVID, then you have your answer. Dozens, hundreds? Yes, we do have it. I’m seeing it every single day.”
That appointment-book barometer – and a raft of retrospective studies – are for now all that is available to quantify long COVID locally.
“We do not have an actual prevalence yet. I wish we would, but this is an ongoing problem. We are living it,” said Maldonado.
“Hopefully we get to a point where we have more accurate numbers and percentages to understand better the natural course of this disease.”
As a pulmonologist, Maldonado has a lead role in referring long COVID patients to specialists for treatment. He said he communicates regularly with them as a team, much the same as long COVID clinics that have popped up at major health care centers and universities around the world. At the corporate level, Cleveland Clinic has mounted a multi-discipline response against long COVID called the reCOVer clinic.
“Some people are miserable for long periods after recovery,” said Dr. Gerald Pierone, an infectious disease doctor who has just begun to find time in the lull of active covid cases to begin treating people with long covid.
Pierone described a spectrum of disease that is as broad as for the acute phase of COVID.
“On the severe end, there are people who are profoundly disabled after ventilator ICU stays.
On the milder end, some people have loss of taste and smell and fatigue that lasts for a few weeks,” said Pierone.
In between are people with “varying degrees of diverse symptoms,” including brain fog, insomnia, decreased exercise tolerance, unstable blood pressure, shortness of breath, racing heart, and scarring of the lungs.
Other common problems in long COVID are insomnia and obstructive sleep apnea.
Maldonado said Cleveland Clinic’s team is talking with Pierone about doing a study of sleep disorders in long COVID.
Deonarine, the Yates’ cardiologist, is working on a January conference on long COVID with Dr. Leslie Cooper, the Jacksonville-based chair of the department of cardiovascular medicine at Mayo Clinic Enterprise.
As physicians work together to stay in the loop on long COVID treatment and research, awareness of the syndrome has come largely from patient-based groups, beginning in May 2020 when it was first named on Twitter by a U.K. archaeologist suffering from symptoms herself.
Since then it has been largely self-reported to a registry, though Medicare has now assigned long COVID symptoms separate diagnostic codes. And before hospitalized patients are discharged, doctors at Indian River are educating them about the possibility of developing long COVID, according to Maldonado.
At the one-week follow-up visit, often by telehealth, doctors – typically pulmonologists or infectious disease doctors – check to see if the patient is continuing to improve.
“We start with that. Then, after two months, if those patients are progressively improving, they don’t usually require a significant workup,” said Maldonado. “The problems start when after two to three months, instead of improvement, the patient is persistently short of breath, and you notice on the chest imaging that those shadows in the lungs are improving.
“What you’re wondering is, is this patient developing complications of post-COVID? At that point, we’re not just observing, we start treating this patient differently. We start addressing the problems with antibiotics or we restart steroids.”
Depending on symptoms, other treatments may help improve the patients’ condition. Many patients are discharged directly into rehab centers. Doctors may order physical therapy for those with muscle deconditioning. They may refer patients to sleep specialists for insomnia; order medication to bring blood pressure into a normal range; or request psychiatric treatment for post-COVID mental disorders like anxiety.
While long COVID patients are no longer infectious, the ripple effect of their incapacitation – whatever the degree – spreads throughout the community, more markedly post-delta, which saw younger, sicker patients than in prior surges.
Today, co-workers are covering for long COVID patients’ reduced workloads, and family members take over parenting or household chores, as an estimated 3,000 Delta-related long COVID patients in the county try to get back on their feet.
That translates to a significant loss of productivity not only in the workforce, where employees are already scarce, but in families, where the toll of a parent’s illness extends beyond the fear of contagion to an inability to fully participate in family life as covid recovery drags on, sometimes as long as a year.
“There are case reports saying more than 50 percent of post-COVID patients are manifesting some degree of worsening quality of life,” said Maldonado. “That means it might affect different areas of their daily lives. That involves how they function at work, and how they function in their own homes as parents. You name it: It definitely is going to affect the economy and the society in general.”
In mid-November, one study not yet peer reviewed showed COVID-19 vaccination may increase the odds of escaping long COVID, even if people get vaccinated after they have already contracted the disease.
Maldonado stresses that vaccination against COVID-19 is a strong preventive of long COVID simply by reducing the viral load in the event of a breakthrough infection, the same way the vaccine greatly lessens the risk of severe disease.
Exactly why people develop long covid is still a mystery, one the National Institutes of Health has pegged with research dollars to try to solve. So far, the NIH has dedicated more than $1 billion in research funding to hone in on the syndrome’s root cause.
So far, there is no formal test for long COVID. Scientists are working to establish levels of anti-viral immunity in long COVID sufferers, looking for “a signature of changes that could be definitively tested in a small blood test,” as one expert put it during a conference last week at Imperial College London.
The expert, Danny Altmann, is looking at immune response differences in people who get well within a couple of weeks after COVID infection, and those whose symptoms linger for months.
He thinks the difference may have to do with autoimmunity, in which antibodies attack the body’s own cells.
There may be a new hurdle to getting out of long COVID limbo. As of last week, some scientists feared it may pose a greater risk of reinfection, including in those with natural immunity imparted from a COVID-19 infection. Tests are underway to see how effective current vaccines are against omicron, and companies are already working on a specific vaccine that targets the new variant.
All that news is not weighing heavily on Bill and Carol Yates, at least not yet. Although six of their eight friends infected that night at bible study were not vaccinated, they still aren’t interested in getting the shot. “I think it’s government controlled,” said Bill Yates. “They should focus more on, if you get the virus, treating it right away.”
Maldonado is full-throated in urging people to get vaccinated. While there isn’t enough data yet on the typically mild or asymptomatic breakthrough cases still turning into long COVID – it appears that may happen in about a third of breakthrough cases – that number is small since vaccination does prevent severe disease and hospitalization, the greatest risk factors for long COVID.
“Vaccination is extremely essential,” he said.
As concerned as he is for long COVID patients, he remembers the patients that didn’t make it out of the ICU.
“This is beyond anything I have lived in my whole career, especially this last wave,” said Maldonado. “Unfortunately we saw hundreds of patients that were critically ill and dying and we were very limited in what we could do for them. We saw a lot of patients dying in their 20s, 30s, and 40s.
“Those things are preventable,” he said. “I wish we had done a much better job as a society to prevent that, and of course, that means education. Prevention means the use of masks, social distancing and most important vaccinations.”