Heather-Elizabeth Brown is thankful she survived her battle with severe COVID-19. But more than two years after she tested positive for the virus, she is still managing the physical and mental toll.
“COVID has taken a lot from me,” Brown, 37, a business training consultant in Detroit who is a COVID long-distance runner, told “Good Morning America.” “I took for granted how much I was just ‘go, go go’ before I got sick in April 2020.”
Doctors have made strides in treating people with ongoing COVID-19 symptoms, although there is still much to learn about who is experiencing it and why. Without testing for long-term COVID, it can also be difficult to diagnose.
Studies to date estimate that as many as 13% to 30% of people who get COVID-19 may later develop long-term COVID-19, which usually includes fatigue, shortness of breath and “brain fog” for weeks, months or, as the case may be. from Brown, years after the initial infection.
“I’d be lying if I said my life hasn’t been irrevocably changed by this whole experience,” Brown said.
Recorded at the IC
Brown first started showing symptoms in April 2020, although she tested negative for COVID-19 twice, she said.
“I started having trouble breathing,” she said. “I was so tired. I was barely able to perform the basic functions of taking care of myself.”
As her systems deteriorated, she went to the emergency department three times before being admitted with symptoms such as a raised temperature.
An X-ray showed that Brown — who eventually tested positive for COVID — had COVID-induced pneumonia in both lungs, and she was put on the “highest oxygen level,” she said.
Within two days of admission, doctors told her that her lungs were failing. She was placed in a medically induced coma and placed on a ventilator on April 18, 2020, she said. She remained on a ventilator for 31 days.
“It was an experience that I don’t think I can properly explain,” Brown said. “I had a lot of vivid dreams and nightmares.”
When she woke up, she couldn’t speak because of a breathing tube and couldn’t walk.
“The whole left side of my body was so weak that I couldn’t even press the nurse call button,” she said.
Due to COVID-19 protocols, she was not allowed to see anyone besides hospital staff.
“I was able to FaceTime my mom, but no one could visit me in the hospital,” she said.
Life after COVID
According to Dr. Annas Aljassem, director of functional pain and rehabilitation at Beaumont Hospital in Royal Oak, who treated Brown, it is common for patients who have been on ventilators for extended periods to take drugs that can cause severe muscle weakness.
“A lot of their recovery after recovery is muscle retraining,” he told “Good Morning America.” “In addition, many of these long transporters will have weakened lungs.”
That could translate into a “longer recovery time for the things we take for granted, everyday things,” Aljassem said.
Brown said she had to rehabilitate for about seven weeks because of her lengthy ICU stay and has undergone months of physical, pulmonary and occupational therapy.
“You never think that at age 35 you’re going to relearn something so basic that we think of it as walking,” she said.
Brown said she should use a home health care company to help her do things around the house.
“I’m still limping. I’m still tackling the stairs, standing for a long time,” she said. “I haven’t started walking in high heels yet, but that’s on my list of things to do and I’m committed to it.”
In addition to recovering from an extended ICU stay, Brown is now also managing diabetes and high blood pressure — two health problems she didn’t have before she contracted COVID-19.
“I was on a lot of insulin for a while, but since I got it better under control,” she said of her diabetes.
Research has found that COVID-19 survivors are at increased risk of being newly diagnosed with diabetes up to a year after recovery. There are several theories as to why, although the exact cause has not yet been determined.
Brown said she also had issues with nerve pain and brain fog, although the latter has gotten “infinitely better.”
Common long-term COVID symptoms include severe fatigue and impact on thinking and breathing weeks or months after the initial infection, according to Dr. Jason Maley, the director of the Critical Illness and COVID-19 Survivorship Program at Beth Israel Deaconess Medical Center and an assistant professor of medicine at Harvard Medical School.
For cognitive effects, “We’re approaching it in a lot of ways that are similar to how we try to help patients who’ve had a traumatic brain injury or concussion to recover, because we see a lot of overlap in the symptoms and the way it affects people’s brain function.” affects,” Maley said.
Those who experience fatigue may suffer from what’s known as post-exertional malaise, he said.
“They feel a physical illness and make all their symptoms worse as a result of trying to be physically active, even if it’s just mild activity in the house,” Maley said. “That has been described in other post-acute infectious diseases prior to COVID-19.”
Other patients may feel fatigued and weak from an ICU stay and need to rebuild their muscles.
“That takes time and that is really a more intensive rehabilitation approach,” he said.
Also mental toll
Lung COVID has also been a mental battle for Brown, as she often wondered, “Why me?” and is frustrated by her extensive recovery. She said she also has post-traumatic stress disorder from her ICU experience.
“I want a normal week where I’m not constantly reminded of COVID in some way. Of the battle I’ve had with COVID and the trauma I’ve been through,” she said.
A study led by Maley published last month in Critical Care Explorations, the peer-reviewed journal of the Society of Critical Care Medicine, found that “significant symptoms” of post-traumatic stress were found in a third of ventilated patients at six months. after being released from the hospital.
Aljassem said he has seen COVID lung transporters experience mental trauma from the prolonged isolation they have experienced during their treatment and subsequent rehabilitation.
“Mentally they may be in one place and physically their bodies are in another place,” he said. “Mentally processing that is a very important part of your recovery.”
Maley said long haulers can also experience trauma if their illness is not recognized by their healthcare provider.
“It’s clear to us that this is a real disease and there’s a lot of scientific research on this, but it’s not always easy to see on an X-ray, or it’s not to be seen on a simple blood test,” he said. † “When you can’t think clearly and you’re exhausted all day and you were perfectly healthy before, it’s really traumatizing to look for answers and people largely ignore you.”
Finding Support and New Faith
As she continues to battle COVID-19 symptoms, Brown said she’s “coming back to the best parts of me” before she got sick. Part of it has to do with her faith.
“I definitely feel my faith has been strengthened,” said Brown, who is a pastor at her church. “I feel like I’ve had confirmation of the things I believed and professed in faith, but to then have a moment to see it manifest in real life is very different.”
Seeing a therapist trained in PTSD also helped Brown process the trauma she experienced and be patient in her healing journey, she said.
“She said you’ve been through so much, you have to be nice and you have to learn how to be gentle with yourself,” Brown said. “Something I had to remember and honor – I’m still on a healing journey and every day isn’t the same.”
Aljassem said comparing where Brown is now versus when he first met her is “miraculous.”
“There’s always that discrepancy in how you see yourself, especially how your healthcare team views you,” he said. “I specifically try to empower her by focusing every day on those small wins and not so much on what I can’t do anymore.”
Brown has also devoted much of her time and emotional energy to long-term advocacy and being a voice for the community. She is involved in several support and advocacy groups for COVID-19 survivors, including the Body Politic Covid-19 Support Group and the COVID-19 Longhauler Advocacy Project.
“I am a staunch advocate for the COVID-19 community of long-haul carriers and for people who have survived, and for families who are affected in any capacity,” she said. “I take the position I’ve been given seriously to just encourage people and let people know that even though it can be difficult and even though it can be scary, it’s definitely something people can overcome.”
She does feel that there is much more work to be done for the community and for understanding the protracted COVID.
†[We’re] keeping our feet on the gas when it comes to research and when it comes to education and when it comes to really being vocal advocates for people affected by COVID,” she said.
As more is learned about long-term COVID, doctors may be able to implement better treatment strategies, Aljassem said.
“It’s hard to develop treatments without understanding disease, but at the same time we as clinicians feel…the need and pressure to find things that help people feel better,” Maley said.
Brown said it remains a challenge to compare herself to who she was before COVID-19, but the fact that she has a long breath has made her more resilient and kind to herself.
“I’m still grateful and I’m still grateful for my life,” she said. “I’m hopeful for my future, but I just realized I have to take it day by day.”
Asher May-Corsini and Lauren Sher of ABC News contributed to this report.