Three months since falling ill, Makadia still can’t shake extreme exhaustion. Even going up and down the stairs in her home leaves her winded. Then there’s the leg soreness, dizziness and gastrointestinal bleeding.
Still early in the pandemic, doctors are just beginning to learn what recovery from COVID-19 looks like. While some of the medical issues from the coronavirus resolve over time, others can linger and cause lasting damage, such as permanently decreased lung function. But COVID-19 is not just a respiratory disease, as many people initially thought. Experts say the coronavirus is proving to be a full-body assault.
“There have been days when I can’t breathe well lying down, so I have to sit up. And I’ve been so scared to fall asleep because I thought my breathing would stop,” said Makadia, who has twice gone to the emergency room and is now seeing a cardiologist and gastrointestinal specialist.
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Doctors are seeing a growing list of related health impacts, including blood clotting complications that can cause lung blockages, strokes and heart attacks; kidney damage that requires long-term dialysis; and cognitive impairments such as confusion and anxiety. An estimated 20% to 50% of COVID-19 patients continue to face health challenges after being discharged from the hospital, according to an estimate from Yale Medicine physicians.
“While it may feel like an eternity, we had our first patients in the ICU in early March, and we don’t have a full sense of what recovery is like,” said Dr. Craig Coopersmith, director of Emory University’s Critical Care Center.
Often, the patients who become dangerously ill are older or have other risk factors, including obesity, diabetes, heart or lung disease, cancer and other immune problems. And, while the prognosis is generally better for younger patients without preexisting health conditions, Coopersmith said it still can be hard to predict who will make a full recovery and who will never be the same.
The Centers for Disease Control and Prevention says most people with COVID-19 develop only mild symptoms and can recover at home without medical care, typically within two weeks.
But COVID-19 patients who end up in intensive care units for extended periods often develop post-intensive-care syndrome, which is a collection of physical, mental and emotional symptoms that persist after a patient is discharged.
Even some patients with seemingly more mild cases have been stunned by a wide range of symptoms that continue for weeks, even months.
“I’ve seen healthy people pretty sick,” said Dr. Andrew Reisman, a Gainesville doctor and president of the Medical Association of Georgia. “Not ICU sick, but really sick, like persistent aches and pains and chest pains for six weeks.”
Not over the coronavirus
Chris Riley, a lobbyist and former chief of staff to Gov. Nathan Deal, started feeling achy in mid-March, a few days after learning about state legislators testing positive for the coronavirus.
At first, he noticed a loss of taste and smell. Then, he said, he developed fatigue and a “hard headache” that couldn’t be dulled by Advil or Tylenol. Little by little, the 51-year-old’s headaches started to dissipate, his fever broke, and he was better. Or so he thought.
“I started training for an Ironman (triathlon) again,” said Riley, who lives in Gainesville.
But his running pace was way off. He felt anxious and was having trouble sleeping. His blood pressure was unusually high. And, all of a sudden, he depended on reading glasses. Even so, he dismissed the symptoms as part of life or the aging process. Maybe, he thought to himself, he just needed to train harder.
But his physician, Dr. Reisman, knew better. Reisman kept in close touch with Riley, monitoring his vitals and overall health. Riley’s blood pressure, usually about 125 over 60, was around 180 over 100.
Riley didn’t need to go the hospital, but Reisman knew his patient was not over the coronavirus.
For COVID-19 patients who are not sick enough to be hospitalized, there is no specific drug or treatment, other than rest, fluids and fever-reducing medicine, such as Tylenol. Primary doctors monitor for red flags, such as trouble breathing, which would trigger an ER visit.
Reisman knew about a post-COVID trial for survivors of mild to moderate COVID-19 symptoms. Riley enrolled in the clinical trial for leronlimab, a drug that was originally developed to treat HIV, but is showing promise in the coronavirus fight. He had four injections in his stomach over two weeks.
Riley said he immediately felt better. He returned to a faster pace, his blood pressure returned to normal and the other symptoms – the anxiety, the insomnia — faded.
It’s possible he was given a placebo or perhaps it was time that helped him heal, but Riley is confident that it was the leronlimab.
Doctor who was also COVID-19 patient
Dr. Chris Recknor, a Gainesville internist who runs one of the six sites for the leronlimab clinical trial, is also a COVID-19 survivor.
He first got sick in April, starting with an intense headache. Then, he started bumping into things and saw floaters in his eyes. Those aren’t the most common coronavirus symptoms, but he knew something wasn’t right and decided to get tested to, if nothing else, rule out the infectious virus. The test was positive.
His condition worsened to the point where he thought he might have a heart attack. He ended up in ER at Northeast Georgia Medical Center three times and was twice admitted for overnight stays.
“I felt like my heart was pumping so hard, it felt like it was coming out of my ears,” he said.
His physician at the hospital obtained “compassionate use” permission from the Food and Drug Administration to prescribe leronlimab.
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Researchers think that the drug may work by calming the aggressive immune response called the “cytokine storm,” which occurs in ill COVID-19 patients.
Recknor said he felt better within two days after getting the medication and has fully recovered.
“The only way I can explain it is, it was like it felt like I had 1,000 cups of coffee,” said Recknor. “And then after the medicine, it was like a relaxing time on the beach. A couple days after the medicine, I was back to doing everything normal. I knew there were other people like me having crazy symptoms.”
So Recknor, who is a clinical trialist and founder of the Center for Advanced Research & Education, contacted the drug company and offered to run one of the country’s clinical trial sites. Those in the trial are post-COVID survivors looking for relief after several weeks of battling the illness.
Results from the Phase II clinical trial are expected in July.
‘Hoping I get better’
Makadia said her doctors think the coronavirus may have triggered an autoimmune disorder. She now plans to see rheumatologist.
A part-time optometrist, Makadia has not been able to go back to work. She said even going for a walk with her with children ages 2 to 6, can be overly taxing.
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She said she realizes people have the impression COVID-19 is a brief illness, but her personal experience with the virus shows it can take time — in her case, a long time to recover.
“I urge people to take this more seriously, to wear masks and be more careful until this calms down,” she said.
For now, she said she is mostly staying indoors at home.
“Overall, I am a little anxious because I am not getting better and I have never been sick before,” she said. “I am taking it day by day and hoping I get better.”
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. After falling ill, they couldn't find enough online content or resources dedicated to people struggling with coronavirus, so they decided to start an online resource themselves. Since their launch, more than 4,000 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 to go to wearebodypolitic.com/covid19