May 13, 2020 -- The symptoms came suddenly but took a long time to leave.
Akhink Omer, 31, still remembers the exact date: March 9. One day she felt perfectly fine, and the next she was hit with fever, diarrhea, fatigue, coughing fits, severe body aches and “the worst headache of my life for the first few days.”
At that time, there were only two confirmed cases of COVID-19 in her home state of Tennessee.
By March 16, her condition had worsened. “The fatigue was intense, and the coughing was so bad, I felt like I was choking, like someone was grabbing me by the throat,” Omer says. By the time she went to the emergency room, her blood pressure was dangerously low, her heart rate was racing, and a chest X-ray showed pneumonia in both lungs. Omer was admitted to the hospital and tested for SARS-CoV-2, the virus that causes COVID-19. Her test came back positive 2 days later.
She spent 8 days in the hospital not only fighting to breathe, but also struggling with isolation, as masked hospital staff scurried in and out, some visibly afraid to be in the same room with her. Although her symptoms improved enough for her to go home on March 24, she left the hospital with abnormal liver tests likely caused by a medicine she received, low iron levels, a persistent cough with lots of phlegm, and continued weakness. Though she had survived her ordeal, she coughed for weeks after and struggled to get back to her previous level of activity.
Like Omer, more than 1.5 million people are somewhere along the road to recovery among the estimated 4.3 million people worldwide who have had confirmed infections.
Doctors are just starting to learn what recovery from COVID-19 looks like and whether it will cause long-term damage to its survivors -- both physically and mentally. Doctors are still trying to understand what long-term health effects may look like after recovery, what impacts may resolve, and what may linger.
Wide Range of Health Impacts, Wide Range of Illness
Doctors stress that most people who have COVID-19 are likely to recover without any long-term effects. “In most cases, over 80% of people don’t have severe disease, so most people are going to recover fully,” says Carlos del Rio, MD, an infectious disease specialist and professor of epidemiology at Emory University.
“It's going to be more of the small percentage of people with severe and critical symptoms where the concern arises about long-term impact on the lungs and other organs, but we don’t fully understand what that will look like,” he says.
Still, doctors are seeing a growing list of related health impacts beyond just respiratory problems, including the digestive system, heart, kidneys, liver, brain, nerves, skin, and blood vessels. For people with severe and critical disease, dangerous immune system and blood clotting responses can also cause a lot of damage throughout the body and may result in long-term health effects. For some, kidney damage may require long-term dialysis, strokes and blood clots may lead to disability, and scarred lungs may lead to permanently decreased lung function. Treatment itself -- whether it is time on a ventilator, in the intensive care unit, or certain drug therapies -- may also cause lasting harm. Whether these effects resolve or leave damage remains to be seen.
A study of hospitalized patients in Wuhan, China, found that survivors recovered after a host of complications: 42% had sepsis, 36% had respiratory failure, 12% had heart failure, and 7% had blood clotting problems. Though these patients survived, it’s not clear what recovery will look like for them.
Gregg Garfield of California was in the hospital for 64 days with a severe case of COVID-19. He had kidney damage, and his lungs collapsed in four places, his sister told local media. The avid skier, 54, was on a ventilator for 31 days. He had to relearn to walk and went home with a walker.
Brian Robinson, 53, also spent time on a ventilator and had kidney failure while hospitalized with COVID-19 for 42 days. The Pennsylvania man had to relearn how to talk, swallow, eat, and walk.
Though anyone can be at risk for severe illness, those who are hardest hit seem to be men, older people, and people with multiple health conditions like heart disease, diabetes, and obesity. In the U.S. and U.K., studies are also finding that minority groups, particularly African American and Latino people, have more severe disease. Scientists are still looking into things that make people more susceptible, including environmental, genetic, gender, hormone, and even gut microbiome differences.
Jessie Edwards, PhD, an epidemiologist at the University of North Carolina at Chapel Hill, worked with a team from Johns Hopkins University and Chinese researchers to study COVID-19 patients in Shenzhen, China. Every person who tested positive for the disease was isolated in a hospital regardless of whether they had mild or severe symptoms. The team published its findings as a preprint that is awaiting peer review.
Researchers have found that people with mild disease can have abnormal lab or imaging findings, even if they never progress to a more severe disease. According to Edwards’s study, 47% of people who had only a mild disease and 61% with a moderate disease had abnormal liver function tests, indicating injury to the liver, during their illness. Another small study found that 50% of people who didn’t have symptoms had abnormal findings on imaging tests showing damage in the lungs, even without lung symptoms.
Doctors are also learning that even otherwise healthy young children who may have had only a mild disease or one without symptoms can, weeks after, have a condition similar to Kawasaki disease, now being called pediatric inflammatory multisystem syndrome (PIMS). This condition may be due to a delayed immune system response that inflames multiple organ systems, including blood vessels, and can lead to severe complications. While most children recover from Kawasaki disease, it can cause long-term heart damage, and doctors still don’t know what effects this new syndrome will have.
When it comes to complications like PIMS from mild disease, del Rio says, “we don’t think it’s common, but we just don’t know.”
Even recovery has different definitions around the globe. In the United States, the CDC considers patients recovered 3 days after fevers and other symptoms end, along with a negative repeat test for the virus. Given shortages of testing, the CDC has recently updated its recommendations to extend self-isolation from 7 days to 10 days after symptoms first appear to lower the risk of infecting others in situations where testing is not available.
In China, the definition of recovery is stricter, with the extra requirements for lung imaging tests that show improvement in inflammation and two consecutive negative tests for the virus in the respiratory tract at least 24 hours apart.
In situations where people do require hospitalization, recovery is possible. In a large U.K. study, more than 49% of patients recovered and left the hospital. And one study in New York found that about 45% of severely ill people were able to leave the hospital. Though there are many limitations to these studies, they point to the need to develop care plans for survivors outside the hospital.
As hospital cases in New York City begin to trend downward, hospital systems are working to create care plans for people after discharge.
Viraj Patel, MD, a doctor caring for COVID-19 patients at the Montefiore Health Care System in the Bronx, says health care providers have begun to set up “COVID-19 discharge clinics” for patients who have recovered enough to leave the hospital. “Each institution is developing their own protocol or policy right now because there is no great data about what we need to monitor for when it comes to long-term effects. … Without data, we’re flying blind … [and] relying on expert opinion.”
After the patients are discharged, teams of providers are following up by telephone to ensure that people’s symptoms continue to improve. Patients are also brought in to follow up on lab test results that were abnormal in the hospital, like kidney and liver tests.
Patel says that because there's no data for any long-term monitoring for what may happen in the future, doctors are focused on helping people pull through in the present. Most of their assessments focus on breathing status and preventing blood clots.
Isaac Dapkins, MD, chief medical officer of Family Health Centers at NYU Langone, notes the similar focus for providers at NYU. “The two areas of greatest concern on discharge are pulmonary status … and there’s a striking amount of blood clotting,” he says.
The NYU system has put together regularly updated protocols to ensure that patients remain safe after discharge. Patients are sent home with an incentive spirometer (a device that helps guide patients to take slow deep breaths to expand their lungs); a pulse oximeter (which helps people monitor their blood oxygen levels); appropriate blood thinning medications; and a 24-hour follow-up call to monitor for improvement with a plan for quick readmission for worsening symptoms or bleeding.
Dapkins says mental health is one of the biggest concerns he’s seeing. Patients recovering after hospitalization, or those at home with milder cases of COVID-19, are seeking care for anxiety, stress, and fear. “Of all the services that we’re providing, behavioral health has gone through the roof. … We have more visits for behavioral health than we’ve ever had before.”
- Cytokines are proteins normally released by the immune system but, in some people, this reaction goes into overdrive, causing dangerous organ inflammation.
- Cytokine storm is being increasingly reported in COVID-19 patients several weeks after the initial infection and is linked to many deaths.
- Cytokine storm is similar to the immune response seen in people with Still's disease, a type of arthritis.
- Several anti-inflammatory drugs used to treat arthritis are being investigated as possible treatments for COVID-19.
From Survivor to Recovery
Omer says she couldn’t get around well after her hospitalization. It took her weeks to be as physically active as she had been before COVID-19. And the coughing took a long time to stop. “It was like my lungs were trying to expel everything that was left in there.” She used her incentive spirometer religiously, even though it was difficult, and credits those exercises for getting her lungs back in shape. Over time, her liver and iron lab test results returned to normal as well.
Beyond her medical recovery, she struggled with a sense of isolation after her hospitalization. Joshua Morganstein, MD, chair of the American Psychiatric Association Committee on the Psychiatric Dimensions of Disasters, says most people’s stress reactions are appropriate and will likely resolve over time.
“After a trauma, there are five essential elements to buffer against adverse effects,” he says. These are things that enhance a sense of safety, calming, social connectedness, self-reliance, and hope and optimism. He says selfless actions during this time can be a key to recovering from trauma. “Altruism is one of the most powerful tools against negative thinking and inward focus.”
Del Rio agrees. He says he has been stunned by the altruistic requests from the recovered patients he sees. They are clamoring to help other patients and to further research by donating their blood products. “The altruism that we are seeing in people who recover is really fantastic,” he says.
Omer says connection with her family absolutely helped her pull through recovery, but it still took her a full 6 weeks from her first symptoms before she was back to her usual self.
Five days after she fully recovered, she was on a flight to Boston, signed up as a travel nurse to care for COVID-19 patients in Massachusetts. “I just feel like I have this insider knowledge and I have to share it with other people to help them as well.”
“I know what it's like, and I just need to be there to help other people when they're going through it.” She recalls the gasps from a recent patient whose oxygen levels were dropping, as he began to beg hospital staff repeatedly to “call my son, call my son.” She completely understands that need for someone you love to know what you are going through.
Omer recounts sharing her own story with two patients. Both were around her age, and both asked her directly if she thought they would make it. That's when she shared that she had been through it and had gotten better. “It is absolutely possible to survive, it's absolutely possible to recover.”
- Reports suggests that the coronavirus can directly infect the nervous system in some people.
- Neurological complications of COVID-19 include stroke and inflammation of the brain (encephalitis).
- Loss of swell and taste is a confirmed COVID-19 symptom and may be linked to neurological changes, but more research is needed.