My ‘Long Covid’ Nightmare: Still Sick After 6 Months
A Times reporter caught the coronavirus during the New York City outbreak last April. But the acute phase of the illness was just the beginning.
Laura M. HolsonCredit…Adam Ferguson for The New York Times
I remember the second time I thought I would die.
The first time was April 17, 2020, when, after finding out I had Covid-19 nine days earlier with aches and a cough, my fever shot up to 101.8, I could barely breathe, and my family doctor told me I had bacterial pneumonia.
It was a perilous time for New Yorkers. About one in three patients admitted to hospitals with Covid were dying alone in their beds, while refrigerated trucks stood sentry outside to hold the bodies. Some nights I heard as many as seven ambulances an hour on the streets below my Upper West Side apartment. My doctor, who called daily, diagnosed my pneumonia after hearing me breathe over the telephone. She vowed to keep me out of the hospital and prescribed a potent antibiotic that left me weak-kneed and dizzy. Within a few days the pneumonia began to clear, but I was left with a cough, nausea, fever and chest pressure that was so severe at times that it felt as if an anvil had been placed on my rib cage and I couldn’t catch my breath.
The second time I thought I would die was different, yet eerily the same. It was June 22, nearly three months after the initial diagnosis. By then the cough had softened, and I was well past the acute phase of Covid-19, having tested negative twice. The chest tightness had passed, supplanted by a nagging ache. I had lost eight pounds as nausea tamped my appetite, and my heart seemed to race without reason. I was so tired I sometimes fell asleep upright in my chair. And my fever persisted, too.
On that cloudless day in June, the temperature outside hovered at a pleasant 85. I was seated on the couch, working on my laptop when, at about 4 p.m., the crushing chest pain I experienced during Covid’s earliest days suddenly returned. My pulse began to quicken, and a shawl of heat gathered around my shoulders, crept up my neck and swallowed my head. I began to sweat. It felt as if the air was being squeezed out of my lungs. Breathe, I told myself. BREATHE. I stood up, gasping, and walked to the window to look outside.
Could this really be happening again? I did what I did during my worst days with Covid: I lay face down on my bed and took deep breaths until the pressure passed. I called my family doctor, who gave me the name of an infectious-disease specialist. A few days later, I was in the specialist’s office, and he was examining my chest.
As we talked, I flipped through a little black notebook where I scribbled daily symptoms:
June 16: Tired. Chest pain on left side.
June 19: Exhausted. Fever 100.1.
June 21: Mild chest pain. Felt OK. Took a walk.
I read my notes, and a worried look crossed his face. He swiveled in his chair, picked up his phone and put it back down again. “I don’t want to send you to the emergency room,” he said.
Uh-oh, I thought to myself.
He said one of his other Covid patients had similar symptoms. “I’m worried you might have a pulmonary embolism. We need to get you tested.” A blood clot could have traveled to my lung from another part of my body. I waited 30 minutes for my insurance to approve a CT angiography, for which technicians would inject dye into my veins to produce pictures of my heart and the blood vessels in my lungs.
“This is a new virus,” the specialist said. “And we are just figuring out what it is.”
I nodded. “We are all science experiments, aren’t we, Doc?” I said, probably more for my benefit than his. I didn’t want to admit how scared I was. My symptoms were so seemingly random that I was in a state of high alert. Everyone was grappling with the coronavirus: the doctors trying to understand something they had never seen before, the scientists racing to come up with a vaccine and people like me who didn’t know if a high fever and cough were merely an annoyance or the beginning of their demise.
Almost 23.5 million people in the United States have come down with Covid-19 as of mid-January, according to Johns Hopkins University, and the number of deaths is a staggering 391,081. What has been discussed less is that for some of us, months of lingering symptoms make you wonder if you will ever be OK again. Among those with the virus, doctors estimated early on that tens of thousands of people experienced Covid’s wrath long after the virus left their bodies. Fever. Fatigue. Heart palpitations and “brain fog.” These are some of the common long-term symptoms. For other people, the experience is much worse, including inflammation of the heart, stroke, kidney damage, an inability to focus and depression.
Despite those early estimates, no one really knows how many people suffer from “long Covid.” Researchers are just beginning to dig into the science, guided by the legions of sick who were hospitalized early on or mobilized in online forums to share stories and offer support. A new study of 1,733 Covid-19 patients who were discharged from a hospital in Wuhan, China, the original epicenter of the pandemic, suggests that three-quarters of those patients had at least one symptom, like fatigue, muscle weakness or diminished lung function, after six months. And it is not just the severely ill who suffer. A U.S. study showed that symptoms even persisted among some people with mild cases, including young adults.
The coronavirus affects each person differently, and what I’ve learned these past nine months is that my recovery is singularly my own. I live alone and, after lockdown began, worked from my home at my job as a visual editor at The New York Times. I left my apartment only a few times before I got sick to go to the grocery store and to the Post Office. Five days after my trip to the Post Office (where I was wearing a mask but few others were), I had a fever, and my body shook with chills. Initially, my doctor expected I would have a quick recovery given that I was in my 50s and in good health and had no pre-existing conditions. I regularly walked four miles a day and swam laps at the gym. But few people truly grasped the invasiveness of Covid last spring. It would be seven weeks before I returned to work, and when I did, I still didn’t feel right. I assumed the fatigue, cough and chest pain that lingered would fade. I just needed time to mend. Medical tests showed that the markers of inflammation in my body were elevated, which meant I was still fighting leftover remnants of the virus. And my D-dimer level, which measured the possibility of a blood clot, was elevated, too. Some people have inflammation after a virus, which can present itself as fatigue, chills, memory issues and headaches. But Covid has other unique attributes. Recently, a study by the National Institutes of Health linked Covid and the body’s inflammatory response to microvascular blood-vessel damage in the brain. This idea — that Covid affects small blood vessels — could explain why many parts of the body are impacted by the virus.
The issue with D-dimer levels was related, but distinct. New York hospital doctors had seen a spike in D-dimer levels among their sickest patients. In April, for example, two doctors from the Icahn School of Medicine at Mount Sinai wrote in The New Yorker about patients who died from strokes or suffered from overactive blood clotting. My D-dimer level was infinitesimal compared with those patients. But the research was disturbing. So when my chest pain returned the week after I began working again in May — this time, as a stabbing pain under my left breast, followed by a fever of 100.5 — my doctor investigated further.
She ordered a scan of my lungs to see if ground-glass opacities, or light-colored patches, appeared, a sign that Covid had affected my lungs. She also ordered an electrocardiogram of my heart and an ultrasound of my lower extremities for blood clots.
My family doctor recognized the perniciousness of this new virus early on. And her attentiveness to my symptoms was a medical advantage that many others lacked during the pandemic. Black and Hispanic Americans who have contracted Covid have fared worse than white people because of social and environmental factors, according to recent studies. I am white and have generous health insurance, a supportive family and a doctor who has known me for 12 years and is connected within the medical community. I realized early on that if I just followed her advice, I had a good chance of recovery. But when the results from my tests appeared normal, I still felt uneasy. Two months after contracting the virus, I couldn’t predict which part of my body would go haywire next.
In early June, my hair began falling out a few strands at a time. I thought that I was combing it too vigorously or that the change in weather brought with it a spring shedding. But every morning after a shower, I would find wisps of wet blond hair stuck to the bottom of the tub. Using a blow dryer hastened the loss, and larger clumps would cling to my fingers, which I tossed like airy cotton into the garbage. My doctor thought it was because of stress due to the virus. Other women who contracted the coronavirus posted photos on Facebook of their hair loss, too. All I knew was I had less hair after Covid than before.
More vexing was the brain fog that, for Covid survivors, can include memory loss, confusion, difficulty focusing and dizziness. When I returned to work, I found myself losing my train of thought midsentence. On some days it felt as if words were swirling in my mind like letters in a bowl of alphabet soup being stirred with a spoon. I could see words forming, but I wasn’t sure what order they should be in. One afternoon in mid-June, it took 20 minutes to write a paragraph that, on a typical day, took me a quarter of that time. What followed was downright bizarre: An electric current — or what felt like one — traveled from the left side of my chest, skipped up my neck and stopped at a spot on the right side of my skull.
The sensation vanished as quickly as it appeared, so I went back to writing. I talked about it with my doctor, and neither of us could come up with an explanation. All I can say is that I was exhausted that week. Just bone tired.
A few days later I thought I would die for the second time and found myself in the office of the infectious-diseases specialist. On June 26, he called with the results of my CT angiography. The test detected no pulmonary embolism. Whatever had happened seemed to have resolved itself, he said. The markers of inflammation in my body and D-dimer levels remained elevated, though, even as they had improved from previous tests. This was another hallmark of recovery: The gains were incremental. The good thing, the specialist said, was that the numbers were coming down.
He ordered a six-week leave from work so I could rest. When I had more good days in a row than bad ones, I would be on the mend, he said. But he warned me that it could take months.
Having long Covid imposed a certain order over life. And by July, I had my routine down. I slept 10 hours a day or more. Upon waking, I took my temperature. Next, I would measure the amount of oxygen in my blood using a pulse oximeter. I would repeat this three times a day, sometimes more, depending on how I felt. Back in April, when I tested positive for Covid, I had a blood-oxygen level of 95 percent. That was low for me, but not unexpected given I was sick. It improved significantly after I recovered from pneumonia, hovering near 99 percent.
My temperature was a different story. Before Covid, it was a steady 97.9. But after I got the virus, it would climb to 99.5 by 7 p.m. most days and hang there until bedtime. It was a puzzling development and continued for months. The specialist said it was most likely due to inflammation. My body needed time to heal.
To stave off deconditioning after months of inactivity, I walked the grassy fields of Central Park at least three times a week. Sometimes I made it a mile, other times barely four blocks, followed by a two-hour nap. Exercise was welcome because it was a change of disposition. Since lockdown, my apartment had served as my home, a workplace and an infirmary.
July 9 started out like any other day in post-Covid life. My temperature was 98.3 in the morning and rose to 99.7 by 7 p.m. I didn’t think much about it when I called my brother; I was accustomed to the temperature fluctuations by then. But at about 11 p.m., as he and I commiserated over the state of California’s wildfires, I started to feel faint. Then, what felt like a warm ball gathered at the top of my shoulders and started to rise, until my whole head was engulfed in heat. I panicked and got off the phone, because I didn’t want to alarm my brother.
Beads of perspiration formed on my forehead. My hair was saturated at the roots with sweat. Within a few minutes, my whole body was sopping. The backs of my knees. My forearms and shins. Even the fold of skin where my hip and thigh met. It was as if my internal thermostat had gone berserk and every inch of my body was overheating at once. I took my temperature at midnight — it was 100.1 and rising — and I packed my head in ice to cool off. I lay down, hoping the fever would subside. When it didn’t, I called a close friend and asked her to text me in the morning. If I didn’t answer, she should call me. If I didn’t pick up, she should send for an ambulance. I was terrified I wouldn’t wake up. I took two Advil and crawled into bed.
In the morning, the fever was gone. But it had been replaced by a wave of convulsive chills that persisted for two hours. I took a tepid shower, and some more Advil and drank a quart of water, concerned I would be dehydrated. My temperature hovered at 99, and I was exhausted. I crawled back into bed and stayed there all day, drifting in and out of sleep while watching episodes of “Game of Thrones.” I was refreshed when I awoke, not surprising given that I had slept most of the past 24 hours. I took a walk. At 7 p.m., as I expected, my temperature rose again, only this time it was accompanied by chills and body heat. My face was flush and, as they did two nights earlier, beads of sweat covered my forehead.
No, no, no, I said to myself. This can’t be happening. Maybe through the force of my will, I could make my fever go away. I put ice packs on my back, mostly because it felt good, and called my friend again. Tonight was going to be rough, I told her. I drank water and crawled into bed, overcome with fatigue. There, I fell asleep at 11 p.m. and didn’t wake up until noon. As quickly as the chills, fever and fatigue appeared, they were gone. Like the movie “Groundhog Day,” I would relive the worst of Covid over and over until, one day, hopefully, I would not.
But dealing with the physical repercussions of Covid was only half the battle. I ached to see close friends, most of whom lived far away. Other friends projected their fears and concerns onto me at the same time I was dealing with my own. One friend recounted the story of an athlete, a longtime runner, who had contracted the virus and could barely walk a few blocks after five months. She had breathing problems. And she wasn’t getting better despite attentive medical care.
“Isn’t that awful?” my friend said.
Yes, it was. It scared me, too. I tried to change the subject, but my friend continued.
“Please, stop,” I said. “This isn’t helping me.”
Another person wanted to discuss what having Covid felt like. I indulged these requests, mostly because there was so much misinformation that I saw it as an opportunity to educate. The person asked how and where I caught it. She explored the extent of my body aches and what tests were performed. She was unusually curious about my prognosis. Then, it dawned on me. I was the car crash people slowed down to ogle on the side the highway and are glad they missed.
When I finished, she asked, “Can’t you take anything for that?”
“There’s no cure for Covid,” I said. “Trust me. If I could take something, I would have already.”
Encounters like these left me drained. So I began to avoid them altogether. Instead, I focused on things that gave me joy: reading and friends from the Box Sessions, a creativity festival I founded and hosted earlier in the year. I was captivated by Central Park bird watchers on Twitter. (I spent a lot of time online.) My circle of contacts became smaller, and with it, the conversations more meaningful. Less became more: I gave myself the space I needed to get better. In that way, the virus was a shrewd teacher.
In August, a week before I was to go back to work again, a cardiologist published an Op-Ed piece in The Times that described the danger for athletes who experienced Covid-19-associated myocarditis, or inflammation of the heart. I had taken to reading anything — news articles, medical reports, even online Covid support groups — that might explain my symptoms. Maybe inflammation would explain the pain in my chest. I emailed my doctor. “In the realm of ‘patients should stay off the internet’ (ha!) I read this piece in The Times about Covid and heart disease,” I wrote. “Is this something that I should be thoughtful of?” She suggested I see a cardiologist.
On Sept. 3, the day of my appointment, I could barely move I was so tired. But I did not want to miss it. The cardiologist nodded from behind his desk as I described my heart flutters, the fatigue and occasional shortness of breath. He said he had seen hundreds of patients with Covid since March and many had erratic symptoms like mine. He scheduled an echocardiogram in three weeks. That night, my temperature climbed to 100, and I crawled into bed to watch a replay of Felix Auger-Aliassime defeat Andy Murray at the U.S. Open.
The next morning, the Friday before Labor Day, I didn’t feel much better. I hadn’t experienced fatigue this severe since April. Getting well was always a one step forward, two steps back proposition. But this felt like no steps forward, five months back. I resigned myself to rest for the weekend so I could visit the Metropolitan Museum of Art on Sunday with a friend, but when the morning rolled around, I was not only tired; I was dizzy too. I was determined to go, though, if only to feel some semblance of normalcy.
It was a labor from the start. A small hill I easily walked up two weeks earlier left me breathless. Twice I stumbled on a set of stairs. The walk, normally a brisk 20 minutes, took twice that. Inside the museum, I was overwhelmed by the heat mixed with dizziness and spent most of the time on a bench on the roof. I lasted barely 45 minutes and had to take a cab home. That afternoon I slept three hours. And I stayed in bed the next two days. This felt like a significant setback. But I had nothing to pin it on. Nothing in my routine had changed. I just couldn’t make my body do what it didn’t want to do. It would heal in its own time.
A few weeks later, the echocardiogram showed no heart inflammation. The news was welcome, but something bothered me: If I couldn’t figure out what was causing my symptoms, how could I treat them? I wasn’t the only person thinking about this. Since March, research studies and treatment centers had been popping up across the country to help unravel Covid’s long-term mystery.
One of those is at the University of California, San Francisco. There, Michael Peluso, an infectious-diseases doctor and co-principal investigator of a study of Covid’s long-term impact, and his team have been interviewing about 250 Covid-19 survivors since April. In early interviews with subjects, Peluso told me recently, he would tick off a list of possible symptoms from the Centers for Disease Control and Prevention. He quickly found out that some people’s symptoms diverged from the C.D.C.’s initial list. Patients described phantom smells, like burning cigarettes or burned meat, he said. Others complained about low blood pressure that resulted in fainting. “I never knew what people were going to say,” he said. “People would periodically have heart palpitations or shortness of breath out of nowhere.” Peluso said he and his team were the first point of contact many participants had with a doctor since they got sick. “It highlighted the challenge of access to good health care in America,” he said.
He said it was too early to draw conclusions about how to prevent or treat long Covid. Some researchers are exploring the vascular system, including abnormal blood clotting. “If scientists can understand the biological process, we can hopefully devise a way to treat it,” he said. Some study participants, he said, began to feel better only eight months after the first diagnosis. “The hard part is there is not a standard answer for everybody,” Peluso said, adding that “it will take a while for us to understand what we have collectively been through.”
On Tuesday, Nov. 3, two months after my September setback, I visited my doctor for a follow-up exam. It had been nearly seven months since I came down with Covid, and I could tell from the creases around her eyes that she was smiling beneath her mask.
“You look pretty good,” she said. “How are you feeling?”
“My hair is growing back!” I said, holding up a tangle of short bangs.
For the past month, I had been living in a cottage on Cape Cod that a friend offered to me. There, I had hoped to jump-start my recovery. I focused on exercises to strengthen my lungs and increase my stamina. I started each morning with breathing exercises, which I would repeat later in the day. I took 30-minute walks to increase blood circulation and, on weekends, longer hikes along the shore. I did yoga to improve my posture, and I simplified my diet, eating mostly fruit, vegetables and fresh fish. When I wasn’t working, I relaxed in the calm and slept with a window open, breathing in the cool, salt air. As the weeks passed, the chest pain and fever became less palpable. The random chills and night sweats largely stopped.
And yet the specter of infection was never far from my mind. Pleased with my progress, at that Nov. 3 appointment my doctor gave me a vaccine for tetanus, diphtheria and whooping cough because I was overdue. The next day my fever shot up to 101.8, and my body shuddered with chills. I chalked up the fever to the vaccine, but the next day, my fever soared again, and I had a pounding headache. Neither the fever nor the headache would budge. I texted my doctor. “I’m drinking water,” I wrote. “I can hold my breath to 10 or longer. I have a stuffy nose. I have taste. I’m not sure what to do, but I knew I should check in given everything that is going on.”
My mind was reeling. “I have only been out twice in the last week,” I wrote, adding, “other than that, I’ve been by myself.” I waited for her reply.
Probably a reaction to the vaccine, she wrote.
Intellectually, I knew she was right. I was sheepish when she called the next morning. “I knew what you were thinking,” she said, with a knowing voice. “But you don’t have Covid.”
A few days later she got back the tests from my appointment: My markers of inflammation had returned to normal. I tested positive for antibodies too, which meant I had some level of immunity. I can’t pinpoint exactly when I felt “better.” By Thanksgiving, though, I noticed my fevers had subsided. My breathing was less labored. I was still fatigued, sometimes spending half of Saturday in bed recovering from the week. But I seemed to have more good days in a row than bad ones. Life was edging closer to normal.
In early December, the National Institutes of Health held its first workshop on long Covid, saying it posed a looming crisis and needed to be taken seriously as a syndrome. Dr. Anthony S. Fauci, the nation’s top infectious-diseases expert, told a crowd of medical researchers, doctors and public-health officials that even if long Covid affected a small proportion of the millions of people infected with the virus, it is “going to represent a significant public-health issue.”
Earlier this year I heard an interview with Craig Spencer, the director of global health in emergency medicine at NewYork-Presbyterian/Columbia University Medical Center. Spencer was on the front lines of the Covid crisis when hospitals were overwhelmed in the spring. As important, he is one of a handful of Americans who survived after he contracted the Ebola virus in 2014 while working with infected patients in Guinea.
I called and asked if there were any lessons Covid patients could learn from his experience. Spencer said he recovered but still had minor issues from the virus. His memory, for one, was not as sharp as it used to be, he said, although most people wouldn’t notice. He and his wife just had a baby, their second child. “I’m grateful to be alive,” he said. “And if this is the long-term impact, I’m doing pretty good.”
For me, life is slowly getting back to what it was in pre-Covid days, even as I’ve accepted that nothing will feel natural during this pandemic. I still tire and sleep more than I want, but I don’t text my doctor as much, and the ice in my freezer is used for drinks, not cold packs. As my doctor would say, I’m moving in the right direction. But my thermometer and pulse oximeter remain on the dresser by my bed so that I can use them every morning. Maybe it’s just for the sense of security they provide, but I’m not ready to move them to the bathroom cabinet yet. I don’t think I will be ready to do that for a long time.