Denise Gregarek’s illness started with an itchy throat back in March. Then came the fevers, chills and shortness of breath. At one point, the Peachtree Corners resident couldn’t stand up straight and started vomiting. Her husband Ken rushed her to the hospital, where she was diagnosed with COVID-19 and pneumonia and treated for five days.
Months later, COVID-19 is still affecting them. Ken, 50, who also tested positive, has not fully regained his sense of smell. Denise, 54, sometimes can’t taste food, not even salty crackers. The film and television publicist suffers from anxiety and sleeplessness and can’t see or breathe as well as she once did, problems she ties to her battle with COVID-19.
The Gregareks are “long-haulers” ― COVID-19 survivors who struggle with symptoms many weeks or months after getting sick. As the pandemic stretches on, doctors and scientists are learning the disease is far more unpredictable than a simple respiratory virus.
COVID-19 often attacks the lungs. But it can strike other organs in the body, including the heart, kidneys and brain. Lingering problems can include nerve damage ― which can harm a person’s ability to walk or smell — debilitating fatigue, mental fogginess, night sweats, hair loss and blurry vision.
Dr. Robert Salata is a professor of medicine, epidemiology and international health at Case Western Reserve University. About 30% of COVID-19 patients he and other doctors have seen at hospitals affiliated with the university have experienced lingering symptoms lasting four to six weeks, with some even longer, he said.
Meanwhile, a recent Centers for Disease Control and Prevention study of COVID-19 patients who were never sick enough to be hospitalized found 35% were not back to their usual health 14 to 21 days after testing positive. One in five of those who were between 18-34 and who had no chronic medical conditions had not completely recovered.
There is reason for hope. The vast majority of long-haulers will recover, several doctors told The Atlanta Journal-Constitution, although it can take months.
“I was a healthy beast of a person before this,” Denise Gregarek said. “I just don’t feel like the same person anymore.”
‘A feeling of dread’
Most people with COVID-19 develop only mild symptoms and can recover at home without medical care, typically within two weeks, according to the CDC. A tiny percentage die. But this is only part of the picture.
“Even though there is a low chance of dying, you can still experience things that could potentially affect your life forever,” said Juan Banda, an assistant professor of computer science at Georgia State University who is using social media data to document the experiences of long-haulers.
Tens of thousands of COVID-19 survivors are sharing their experiences in online support groups. A recent survey of more than 1,500 posted by the grassroots group Survivor Corps identified some 50 lingering symptoms — 27% of which respondents said were painful.
Raymond Dodson, 73, of Woodstock lost more than 30 pounds as he battled COVID-19. His illness, which began in February, caused him to suffer from a dry cough, a fever and dizzy spells. He was eventually hospitalized and hooked up to a ventilator. A Vietnam War veteran, Dodson emerged from a nursing home in April. Today, he still suffers from fatigue.
“I just can’t get my strength back,” he said. “I can do a little bit and then I have to sit down.”
His wife, Penny, 71, suspects she also contracted COVID-19, though she never tested for it. She got sick at about the same time as her husband and lost 18 pounds. Penny said she and her husband are still suffering from body aches and dizziness.
“For a while, we just didn’t even want to get up in the morning,” said Penny, a retired postal clerk. “It was a feeling of dread. We now are getting over the dread part, but we are still just so tired.”
Hearing and hair loss
Linny Dew, 68, of Cartersville spent five days recovering from COVID-19 in the hospital back in March. A benefits advisor for an insurance company, he suffered from a fever, hives and shortness of breath. He believes he contracted his illness attending a Feb. 29 banquet and choir rehearsal at the Church at Liberty Square in Cartersville.
Dew has seen a doctor for substantial hearing loss he believes is connected to his illness and now uses hearing aids. Dew’s wife, Carlotta, 70, tested positive for the antibodies for COVID-19 and is losing her hair. Fellow churchgoers who have survived the disease, Dew said, are experiencing similar long-lasting symptoms.
“COVID-19 is not a joke,” he said. “It is serious. I don’t necessarily feel like we have by any means seen the end of it.”
Experts believe lingering health problems from COVID-19 may be connected to people’s immune systems, which can exhaust themselves by mounting runaway responses to viruses. Even so, they said, COVID-19 usually goes away completely over time, and inflammation abates, allowing the body to heal and repair itself.
Dr. Andrew Reisman, a Gainesville doctor and president of the Medical Association of Georgia, said his long-hauler patients are recovering. Two, he said, struggled for months, including a middle-aged woman with well-controlled diabetes. She first showed symptoms of COVID-19 in March, Reisman said, and suffered from headaches, trouble concentrating, and low energy. Almost six months later, he said, she has finally recovered and is returning to work.
“Everything was profoundly off,” Reisman said of his patient.
Dr. Aneesh Mehta, an infectious disease doctor and associate professor of medicine at Emory University, is also seeing long-haulers get better. But the road to recovery can be hard to predict. For example, a couple was hospitalized earlier this year. The husband bounced back quickly. But his wife, who was in better health, struggled with symptoms for several weeks, Mehta said.
“What I have been telling my patients is the vast majority do get better and fully recover,” he said. “Everyone is on a different timeline.”
Anxiety and paranoia
COVID-19 can also profoundly affect mental health, according to doctors, who say there is a strong connection between chronic pain and depression. Many COVID-19 patients are living in isolation, separated from family and friends. At the same time, they are wrestling with an illness with odd symptoms and wondering when they will be healthy again. Some research suggests the symptoms of depression and anxiety indicate the virus affects the central nervous system.
There is no specific treatment yet for long-haulers. Doctors are prescribing sedatives and antidepressants as well as medication to help relax lungs. Good nutrition and rest are key.
Alanteo “Henry” Hutchinson, 40, of West Point has been suffering from a loss of energy since his struggle with COVID-19. A West Point city councilman, he tested positive for the disease back in June and experienced chills and a fever that drenched him in sweat. Hutchinson, who also serves as West Point’s mayor pro tem, said he is grappling with “paranoia” that he will contract COVID-19 again. Just sneezing from his seasonal allergies causes him to worry.
Credit: HYOSUB SHIN / AJC
Credit: HYOSUB SHIN / AJC
“Now, it is almost like any little thing that goes on, you are thinking like, ‘Man, I hope this isn’t this again,’” he said. “It plays on your mind. It has you walking on eggshells every day.”
Teresa Sardine, 62, of Fayetteville, has suffered from similar problems since she tested positive for COVID-19 in July. Initially, she coughed, ran a fever, endured pneumonia and body aches and struggled to breathe. In all, she was hospitalized for five days. COVID-19 has not left her alone since. Worried she will contract the disease again, Sardine, who works from home in the legal services industry, takes sedatives for her anxiety and sleeplessness.
“The doctor says to me, ‘You need to try to go out and walk. You need to try to get out there,’” she said. “But when I get out there, people are around me and I am like, ‘Oh my God. Is that person sick? Am I going to get this again?’”
Like Hutchinson, Sardine does not have the same level of energy she once possessed.
“I could be in the house and all of a sudden I’m exhausted,” she said. “So I go to bed. Sometimes I sleep. Sometimes I don’t. I just need to lay there.”
Tentacles that embed into the body, mind
Denise Gregarek, the publicist from Peachtree Corners, said her illness was complicated by a perforation in her bowel that she believes was caused by COVID-19 interacting with her diverticulitis.
“If you have some sort of issue with your body,” she said, “it is going to be tenfold, if you get COVID.”
Her doctor treated her with hydroxychloroquine, a drug touted by President Donald Trump. She said it caused her to have an arrhythmia, or an irregular heart rhythm. On a scale of one to 10, she said, her pain with COVID-19 was a “15.”
“It was that bad because it was so prolonged. Now I have a new bar (for pain). It is not childbirth. It is COVID,” said Gregarek, who has a teenage daughter.
Her husband, Ken, still struggles to smell fragrant things, such as soap and deodorant. He usually enjoys coffee but it smells unpleasant to him now.
“It is a little disturbing because what if something is burning in the house?” said Ken, who works for a power tool manufacturer. “Or what if there is a gas leak from the stove or something like that?”
Denise is regaining her sense of smell. And the sharp pain she felt while taking deep breaths during her hospitalization has disappeared. But she still grapples with fatigue, bowel pain and other lingering symptoms. And that makes her worry.
“This is something that has these tentacles that embed into your body and your mind and wherever it can, and I don’t know how to get it out,” she said. “I don’t know if it is ever going to go away.”
Credit: HYOSUB SHIN / AJC
Credit: HYOSUB SHIN / AJC
Online Support Groups for Long-Haulers
Survivor Corps
Survivor Corps is a large grassroots group mobilizing COVID-19 survivors and connecting them with the medical, scientific, and academic research community. The Facebook group is also a place to share symptoms and look for support. Website: www.SurvivorCorps.com Close to 100,000 are members of the Facebook group: https://www.facebook.com/groups/COVID19survivorcorps/
The Body Politic COVID-19 Support Group
Body Politic started the COVID-19 support group after Founder and EIC Fiona Lowenstein, and Creative Director Sabrina Bleich became sick with coronavirus in early March. Since their launch, several thousand people have signed up to join the group which includes forums for people who have been symptomatic for more than 30 days, people struggling with complications from the disease, and those with mental health concerns. For more information about joining, go to wearebodypolitic.com/covid19
Long Haul COVID Fighters
Long Haul COVID Fighters is a private Facebook group for people who have been recovering from COVID and who have been sick for at least 30 days. The group says it’s “a safe place to share symptoms, test results, and offer support to one another in this healing journey.”
