Crippling fatigue, headaches, chest pain. Blood clots, memory problems, racing heartbeat and shortness of breath.
Hair loss, leg weakness and even in some cases temporary paralysis: These are just a few of the mysterious, lingering symptoms experienced by COVID-19 survivors.
Over 430,000 have died from COVID-19 in the U.S. as of this writing and more than 25.6 million people have been infected.
Months after many have recovered, survivors are plagued with new, debilitating issues that vary from person to person. Dr. Wes Shepherd, director of interventional pulmonology at VCU Health, has been watching the long-term effects of COVID-19.
“I think it’s more common by far than we first realized,” Shepherd said. “Even for those with mild disease and those who do not require hospitalization, the studies vary widely, but some estimate up to 50% of patients may have some degree of chronic symptoms. Given the magnitude of the many million that have been infected, some experts speculate these long-term symptoms could equate to its own public health problem.”
Initially, the experience was called “chronic COVID” or those who had it were “long haulers.” But as of last week, the accepted term is “long COVID.”
“It is literally evolving week to week in terms of what we’re learning,” Shepherd said.
Dwayne Carpenter, 45, contracted COVID-19 during the first week of April. At first, it seemed like a normal illness. He was knocked out for a day and a half, but his energy quickly returned and he felt fine.
But that changed by the end of the week, when he had spiking fevers, followed by extreme exhaustion and loss of appetite that resulted in losing 20 pounds in seven days. The next week, it felt like the blood in his hands and feet were boiling. The following week, debilitating headaches set in.
Carpenter, an operations manager at the Richmond Times-Dispatch, had never been sick like this before. He had no pre-existing conditions. He exercised, ate healthy and was a new dad with an 18-month-old son at home.
By week five, his symptoms started to dissipate, and he thought the worst was behind him. He was wrong.
His son, Ezra, loves to be carried outside when they take the dog out. About a week after feeling better, Carpenter found it harder and harder to walk up the back steps carrying Ezra. With each day, he got weaker and weaker. He could barely walk and fell several times. Then he couldn’t pick up his son or even hold a pencil. Carpenter and his wife, Carrie, who also works in the creative services department of The Times-Dispatch, were terrified. So much was wrong and no one knew why.
He went to the emergency room, but they couldn’t find anything wrong with him. Weeks later, as Carpenter’s condition continued to deteriorate, his wife’s sister told a doctor friend of hers who works at VCU about Carpenter’s symptoms. The friend helped facilitate a visit with a neurologist at VCU.
Finally in late May, almost two months after he contracted COVID-19, Carpenter received a diagnosis. Three, really, as Carpenter was experiencing some symptoms from Guillain-Barre syndrome — a rare neurological disorder that’s been linked to COVID-19 — plus two other syndromes.
Because of COVID-19, he now suffers from a form of neuropathy and requires monthly IV plasma treatments. The purified plasma helps heal the nerve damage he has from having the virus.
Even though he contracted the disease in early April, 10 months later, he’s still dealing with the aftermath and says he feels about 90%. He will continue the IV treatments until at least March.
His doctor hopes he’ll be one of the lucky 40% who will fully recover. But he might not. Carpenter’s doctor told him that 60% require ongoing treatment.
“I’m keeping my fingers crossed,” he said.
Carpenter isn’t alone. A new study out of Wuhan, China, published this month in the medical journal The Lancet is the most comprehensive of long COVID and suggests that many survivors will experience lingering problems like fatigue, insomnia, depression or diminished lung function.
The study of 1,733 patients discharged from a Wuhan hospital found that more than three-quarters of them had at least one symptom six months later.
The most common problem seems to be fatigue and muscle weakness, experienced by 63% of the patients at six months; 25% had trouble breathing, 26% had trouble sleeping, 23% had anxiety or depression, and 40% had abnormal X-rays of their lungs.
The study did not assess patients’ cognitive or neurological functions.
Another survey involved 3,762 participants, mostly women, from 56 countries. Nearly two-thirds reported experiencing symptoms for at least six months. More than half of those with symptoms said they experienced cognitive problems such as brain fog, difficulty thinking or concentrating. That report has not been peer-reviewed.
Rita Johnson, 52, a manager for pathology support services at VCU Health, contracted COVID-19 in July.
The illness came on hard, with Johnson experiencing nausea, vomiting, high fevers and fatigue. She also lost her sense of taste and smell.
“Just walking up the four steps to my house was draining,” she said.
When she developed shortness of breath and breathing problems, she was hospitalized and put on oxygen for 11 days. She has high blood pressure, a pre-existing condition that can exacerbate COVID-19.
At the hospital, she took a five-day dose of remdesivir, used to shorten the duration of COVID-19. She was thankful that she never had to go on a ventilator.
When she returned home, she still had a cough, fatigue and memory problems.
“At the hospital, they called it ‘COVID brain,’” Johnson said. “My husband noticed that I’d repeat myself or ask the same questions.”
The fatigue took its toll, and she was out of work for nearly two months.
“Mostly I was just tired. You don’t have the energy. They said the fatigue might be the last symptom,” Johnson said.
But then in October, her hair began to fall out. She didn’t notice it at first, until she started to see a handful of hair coming out at once. She was told she had a condition that often happens to pregnant women who have experienced a traumatic event or health crisis. She was told it could take six months to a year for her hair to grow back.
Now, several months later, “it’s slowly started to come back,” Johnson said.
She returned to work in September and still has some memory lapses, but she keeps sticky notes all over her desk to help manage her 40 employees. But the biggest thing she continues to deal with is the fatigue.
“Sometimes at the end of the day, I’m just exhausted. When I leave work, all I want to do is go home, get a quick bite to eat and then lie down,” she said.
Fatigue has been a common complaint from many patients with long COVID.
“Sometimes they get over it, sometimes they don’t. There are so many unknowns. No one really knows,” she said.
Ben and Guadalupe Blevins, both 52, owners of AlterNatives boutique in Carytown, contracted COVID-19 in late April and closed the store temporarily.
Both experienced cough, fever, chills and a sore throat. But Ben seemed to have it worse. He lost his sense of taste and felt like he was smelling cigarette smoke all the time.
“Everything tasted like an ashtray,” Blevins said. Now, he still hasn’t fully recovered his sense of taste. He eats spicier foods, especially chili and stews.
Like Johnson, he’s also been experiencing cognitive problems. He’s completing a master’s program where he studies community organizing and often writes scholarly papers.
“Now, I have a harder time trying to recall words or think of the proper semantics,” he said.
Like many other post-COVID survivors, Ben continues to suffer from lingering fatigue. Before he contracted the virus, he would work out daily. Now, he finds it difficult to get up and get motivated to go to the gym. Before COVID-19, post-workout, he would feel refreshed and full of energy.
“Now, if I go for a walk at the river, I want to come home and take a nap,” Blevins said.
The key time frame for defining long COVID happens around the 12-week mark, according to the National Institute for Health and Care Excellence in the United Kingdom.
“They felt like people who had COVID, most of their symptoms would resolve by 12 weeks. People who had symptoms persisting after 12 weeks would be the group you would think of as long COVID,” said Shepherd, the interventional pulmonologist.
As for how long these long-term symptoms will last, no one knows for certain. It could be months or years. It’s all too soon to say.
Shepherd is particularly worried about those patients who experience inflammation of the lungs or heart and if the consequences could be prolonged or lifelong.
Long COVID clinics are starting to open up around the world. Roughly 40 to 50 clinics focused on long COVID have opened worldwide to study the long-term effects of the virus and conduct research.
In the U.S., post-COVID facilities are opening or in the process of opening at Mount Sinai Hospital in New York, Yale and the University of Iowa, to name a few.
“It’s not very reassuring, but we have to tell patients, this is so new, we’re figuring it out as we go,” Shepherd said.
For those who have experienced long COVID, many are sharing their stories in hopes of educating people of the long-term dangers of the disease.
“I see myself as a success story,” Johnson said. “Maybe something I say will encourage people to understand the importance of social distancing and safety measures.”
“The virus affects every person differently,” Carpenter said. “I want people to realize that there is a real danger. Even if you get COVID-19 and don’t die, there is still a possibility that you will end up with other health problems. I want to show people that this is more than just life and death.”