This story is part three of a series on long COVID that highlights the experiences of Black survivors of this virus who now advocate for equitable medical care and help fellow long COVID-19 survivors. Click here to read part one and part two.
Four surgeries. That’s how many procedures Charita Moore has had to repair the scar tissue build-up in her throat from being placed on a ventilator in December 2020.
Although nearly two years have passed, 55-year-old Moore is still recovering from the destructive toll COVID-19 had on her body. Throughout our interview in November, she coughed and had to take several moments to catch her breath to tell Word In Black what happened on that fateful night of Dec. 6, 2020.
She recalls having a high temperature and her son taking her to the emergency room in Virginia. After being admitted, she remembers chatting with the nurses about getting ice chips and Jell-O.
“That’s the last conversation I had until I woke up on Christmas Eve,” she says.
For nearly three weeks, Moore was in a medically induced coma and placed on a ventilator to breathe for her. Unbeknownst to her, during those weeks she lay in a coma, doctors and nurses called her family to help them prepare for the fact that she might not wake up.
“When I woke up, I could not talk. I could not move. They had me tied down to the bed,” she says. “The nurses told me I woke up at some point (during the coma), and I pulled my ventilator out, and they had to tie me down so that I would not pull my ventilator out for a second time.”
Despite eventually waking up from the coma, her journey to recovery was only beginning. Doctors tried several times to get Moore off the ventilator, but without it, she couldn’t breathe — so a decision was made to transfer her to a different hospital that could better support her recovery.
Several weeks passed when doctors performed a tracheostomy, a surgical procedure that cuts through the front of the neck and into the windpipe. A tube is then placed into the hole to support breathing. But doctors then realized it was doing more harm than good and removed it. Then on Jan. 19, 2021, doctors successfully removed Moore’s ventilator, and about a week later, she was released from the hospital.
What doctors know and don’t know
Typically, patients can be put in medically induced comas when they are in severe respiratory distress that requires a ventilator to breathe for them — when the body is in a comatose state, it allows someone to tolerate the breathing tube.
“In certain patients with COVID-19, the virus infection causes pneumonia and severe inflammation that cripples the lung’s function,” William Li, MD, told Health in an interview. “In these patients, having a ventilator available to support the patient can make the difference between life and certain death.”
The first variant of COVID-19 was causing people to have serious lower lung issues that could lead to low oxygen levels — one of the main reasons so many people were put on ventilators. But, as the virus has mutated into other variants, the Omicron variant causes folks to have upper airway issues like wheezing and coughing, which does not often require the use of a ventilator.
Al Richmond is the executive director of the Community Partnership for Health — an organization working to address the long-term impact of individuals living with long COVID. Two of their initiatives are the North Carolina Community Engagement Alliance and Recover COVID, aimed at researching and supporting the recovery of folks with long COVID.
“Because of the disproportionality in COVID within Black and brown communities, one could conclude that they will also be disproportionately impacted by long COVID,” he says. “I think the issue is that, in general, there is minimal understanding or knowledge of long COVID.”
Due to the relative newness of long COVID, many times people are getting their information from social media and trying to figure it out on their own, Richmond says. Part of the added strain of understanding these symptoms is distinguishing individuals with pre-existing conditions and how — or if — that contributes to long COVID symptoms.
“Long COVID, I think, represents new frontier health — chronic health issues in this country,” he says.
‘We can’t come back from death’
During her recovery and rehab in the hospital, Moore says there was a point where she insisted on writing, but all she could do was write squiggly lines. As an engineer, she says this was tough for her — not only having to learn how to write again, but how to walk, talk, and breathe on her own.
In early November, she had a fourth surgery on her throat to repair the scar tissue that grew around the tracheotomy she temporarily had. Yet, despite all her struggles, she is happy to be alive and credits prayer and her support system for helping her heal.
“We can’t come back from death, so I don’t complain,” she says.
But the toll COVID-19 had on Moore reverberated on her close friends and family.
She says her son was repeatedly told to prepare for her death. It was a long 38 days before he could see her again. But now, she says anytime she has a doctor’s appointment or has to go to the emergency room, “he freaks out completely,” out of fear she will not come home.
In addition — after weeks in the hospital, weeks in rehab, and multiple surgeries — after being discharged, her finances have taken a hit. The hospital bills completely wiped out her savings, she says — on top of that, 45 days after being discharged from the hospital, she no longer had a job. Virginia is an at-will state that allowed her employers to fire her for any reason and without any cause.
As a result, for a period of time after being released from the hospital, she didn’t have insurance — to get the coverage, she had to find a new job.
“Was my body ready to go back to work? Absolutely, positively not,” Moore says. “But the bills don’t stop coming — and the bills still have to be paid — and I had no insurance.”
A recent study by the Brookings Institution found that about 16 million working-age Americans have long COVID, and of those, two to four million are out of work because of it.
Shortly after being fired, she applied for disability insurance and was denied. Being denied disability has increasingly become all too common. Folks with long COVID symptoms face years-long wait times, having to prove their disability, and a lack of legal support. And for Black folks and people of color with long COVID, the struggle to get adequate governmental support has grown.
“I feel like we are a lost cause because nobody cares anymore. Nobody cares about us who caught COVID because we’re not celebrities,” Moore says. “Nobody cares about us as Black, African American people.”