Long COVID Survivors Share How Their Lives Have Changed 2 Years Later

0
99


It’s been exactly two years since the coronavirus was declared a pandemic, and yet many of those first infected with the virus continue to wonder if they’ll ever feel normal again.

There have been an estimated 23.5 million cases of so-called long COVID in the U.S. since the pandemic began, with recent studies finding that up to 30% of those with COVID-19 will develop symptoms that last four weeks or more.

These long COVID symptoms vary widely, with the virus today known to not just cause respiratory symptoms but also have effects on multiple organ systems, such as the kidneys, skin, gastrointestinal tract, heart and brain.

Why some people may develop long-term symptoms while others may stay asymptomatic or recover quickly is not entirely clear. It also remains unknown whether any issues ― such as neurological damage that’s believed to be triggered by an overactive immune response ― will resolve with time or lead to a more persistent or chronic disorder, according to the National Institutes of Health.

“I really wonder if some of these things are going to be with me for the rest of my life,” said Stephanie Joyner, 54, who has been battling the effects of her COVID infection since early 2020.

Joyner was one of four long COVID survivors who spoke with HuffPost in October 2020 about her ongoing battle. Here are some of their stories, two years after infection.

David Lat, 46, New Jersey

David Lat, who moved from New York to New Jersey during the pandemic, says he has generally recovered from having long COVID but does continue to experience a higher-than-usual heart rate when exercising as well as some breathing difficulty.
David Lat, who moved from New York to New Jersey during the pandemic, says he has generally recovered from having long COVID but does continue to experience a higher-than-usual heart rate when exercising as well as some breathing difficulty.

Lat was hospitalized for 17 days in March 2020 ― six of those days were on a ventilator. Today he mostly feels back to his old self, though with a “greater appreciation for life.”

Lat considers himself “very lucky,” twice over. He not only survived being hospitalized with COVID-19, an experience that left him on a ventilator and barely able to walk, but he has also overcome a yearlong battle with long COVID with few lasting health effects from it.

“I consider myself very lucky when I read the accounts of people struggling with long COVID. I don’t have brain fog or fatigue or many of the other issues that are affecting so many,” he said. “The one thing I would say that I still have is my heart rate gets very high during exercise, higher than I think it used to pre-COVID, but that has been slowly and steadily improving.”

“I didn’t really think I could come this close to death as I did a few years ago.”

– David Lat

The former lawyer, now a legal writer, had been able to run for miles with no problems before infection. Now he still cannot run as long and as fast as he could before. Though his heart rate has improved ― with a cardiologist last May scrapping plans to put him on beta blockers to help lower it after seeing improvement ― he says his lungs have not completely recovered. He still uses an inhaler prescribed for him after his COVID infection, but instead of using the “maintenance” one every day, he now only uses a “rescue” one before exercising.

“I don’t know if they’ll ever be exactly the way they were before,” he said of his lungs, “but again, I feel very lucky that I can exercise again, not pre-COVID, but I can go about my day and work and I don’t have any problems.”

Lat, seen here with his 4-year-old son, said he considers himself extremely lucky. He was hospitalized for nearly three weeks in early 2020 due to COVID-19. He began to see large improvements in his health last spring.
Lat, seen here with his 4-year-old son, said he considers himself extremely lucky. He was hospitalized for nearly three weeks in early 2020 due to COVID-19. He began to see large improvements in his health last spring.

Mentally, he no longer worries about getting sick as he did before. He is fully vaccinated and got a booster shot in November. In February he said a test found that his antibodies “were literally off the charts,” giving him confidence that he’d be able to fight off illness if infected again.

The entire experience has also “given me a sense of the fragility of life,” he said.

“Being a relatively young, relatively healthy person, I didn’t really think I could come this close to death as I did a few years ago, so I think it’s just given me a greater appreciation for life. My thoughts are with all the people who are still struggling with the effects of long COVID. Hopefully the pandemic will be behind us at some point, but I suspect there will be millions of people who will have aftereffects for years.”

Stephanie Joyner, 54, Now Living In Dubai

Stephanie Joyner, seen here in the United Arab Emirates, continues to deal with a number of long COVID issues but remains hopeful that she will overcome them all.
Stephanie Joyner, seen here in the United Arab Emirates, continues to deal with a number of long COVID issues but remains hopeful that she will overcome them all.

The former Maryland high school science teacher continues to endure long COVID health issues but sees progress in her recovery. She is currently working abroad, where she feels safer from re-infection.

It’s been a whirlwind two years for Joyner.

The high school science teacher and cross-country coach has gone from fearing she was on her COVID deathbed to getting laid off from teaching biology in Maryland and then to abruptly moving to Dubai last August as part of a two-year teaching contract.

“Getting sacked ended up being the right thing at the right time,” she said of her last-minute decision to “pull the ripcord” and fulfill a longtime goal of teaching overseas. “I considered seeking new employment in Maryland and was like, but I won’t be safe, and I know I’ll be safer in another country.”

Joyner said she continues to endure a number of health issues from long COVID, including a more fragile immune system and post-traumatic stress disorder (PTSD), which has been documented in other COVID survivors. But she’s found a haven in teaching in the United Arab Emirates, she said. The country only recently began to roll back some of its mask requirements, and nearly 100% of the population has been fully vaccinated, according to Johns Hopkins University. In the U.S., the full vaccination rate is 66%.

“In Maryland, just a few days ago, they said no more masks in schools. That, to me, is terrifying. I know the day will come, but I prefer our gradual rollout,” she said of the UAE’s handling of the pandemic, which she said has given her peace of mind.

Joyner also says she feels safer due to the inaccessibility of guns in the country. She didn’t realize it until leaving, but the shooter lockdown drills she endured as a teacher in the U.S. also gave her PTSD. It was like “being away from an abusive relationship,” she said.

“We had to redefine almost every aspect of our lives,” she said of those living with long COVID. “And for me, a big part of that was literally moving halfway around the world in order to feel safe.”

Joyner’s long COVID symptoms today ― some of which she’s had since the start of her illness ― include neuropathy in her hands, disrupted sleep, body temperature fluctuations and photosensitivity. There have also been changes to her digestive tract, so she’s no longer able to eat dairy, processed sugar or gluten. Her eyeglass prescription changed as well, something she said her optometrist in Maryland said occurred in all of his patients who had COVID.

She’s also lost a lot of stamina and needs to use an inhaler before going on runs.

“I had to mourn the person I was before COVID, and I had to accept the fact that I may never be at that place again physically. That doesn’t mean I’m not going to keep trying. I have to keep trying. That’s actually the key to my sanity: to keep trying.”

She’s also said she’s no longer taking anyone’s crap.

“Surviving COVID, it was like I finally got permission to put myself first, for the first time in my life.”

– Stephanie Joyner

“I’m a better advocate for myself than I’ve ever been in my life. Surviving COVID, it was like I finally got permission to put myself first, for the first time in my life,” she said of her attitude today.

As for the future, Joyner said she has “a hunch” that a lot of her “long-COVID souvenirs” are going to stay with her for the rest of her life. But if that’s the case, “that’s OK because I’ve made other gains.”

“We all had those times during our illness where we weren’t sure if we were going to make it,” she said while fighting back tears. “And you know what? Even with neuropathy in these hands and temperature dysregulation and all this other wacko shit I deal with, I’m still here, damn it, and I’m living in another country, and I’m seeing all kinds of cool shit, and I drive on the highway and I see camels,” she said, laughing.

“It’s been a great experience,” she said of her move to Dubai. “There have been challenges, of course, but that’s life and I’m living it.”

Laura Long, 33, Nevada

Laura Long with her husband in February, during what she called "one of my good days." At right she's with her youngest son on Christmas Day.
Laura Long with her husband in February, during what she called “one of my good days.” At right she’s with her youngest son on Christmas Day.

The mother of two has continued to experience an irregular heartbeat and fatigue, as well as issues with her thyroid and autoimmune system. She continues to undergo testing.

Long’s recovery from long COVID continues to hold a lot of mysteries.

Doctors had been unable to find anything wrong with the former runner when we spoke with her in 2020, despite her routinely experiencing extreme exhaustion, heart palpitations and an inability to exercise. Curiously, the moment she started to feel better last summer was when she said doctors started to find issues.

“There really wasn’t any reason to it that I could make sense of,” she said of her feeling of improvement, which misaligned with her medical tests.

Her annual physical in July 2020 ― four months after contracting COVID-19 ― determined that her heart and lungs were actually healthier than they were a year prior. In contrast, she said a physical in July 2021 uncovered red flags.

She had an irregular heartbeat, called sinus arrhythmia, in which the heart beats either too fast or too slow. She also had developed hyperthyroidism, which can accelerate metabolism and cause irregular heartbeat and weight loss, according to the Mayo Clinic. It was also suspected that she had developed the autoimmune disease Hashimoto’s, which studies suggest can be triggered by COVID-19.

The mother of two, seen here with her mother and oldest son, continues to undergo testing to better understand her long COVID struggle
The mother of two, seen here with her mother and oldest son, continues to undergo testing to better understand her long COVID struggle

With her doctor’s referral she went to the Mayo Clinic’s cardiology department in Arizona for further testing.

Last December, those tests concluded that she had postural orthostatic tachycardia syndrome (POTS), a disorder of the autonomic nervous system, the part that regulates heart rate, blood pressure, sweating and body temperature, according to Johns Hopkins Medicine. It can cause headaches, fatigue, brain fog, insomnia and difficulty thinking or concentrating, and, like Hashimoto’s, experts believe it can be triggered by COVID-19.

Long said she feels POTS effects mostly in her heart, which jumps to about 50 beats per minute (bpm) when she stands.

“I’m able to take longer walks than I could in October 2020, but I’m not really able to exercise at all aside from walking and yoga,” she said. “Any sort of jumping makes my heart rate spike, and my walking heart rate is still pretty high for me [120-130 bpm], especially considering I used to run half marathons and now I’m walking at a 2.5 mile per hour pace.”

Today, she said, she continues to have memory issues and now headaches every morning upon waking ― something that started in January. She has a daily “buzzing” sensation throughout her body, which she likened to being plugged into an electric guitar amplifier. Then there are weekly body tremors, a sensation that recently increased from once every month or so.

A video she posted on Twitter earlier this month shows one of her hands quivering during one such episode.

“My hands are where it is the most noticeable when it happens. Sometimes it’s my arms as well,” she said.

She said she has a brain MRI scheduled in April with the Mayo Clinic and will also meet with an endocrinologist about her thyroid.

As for her two young sons, who she suspects caught the virus around the time she did, the oldest, Gage, 10, continues to have heart palpitations and occasional breathing issues, including a lingering cough.

“For the last six months, he’s been doing breathing treatments like they do for kids with asthma, but it’s hit or miss if they help him day to day.”

“I now know firsthand that in an instant life can change in so many ways, so I make an effort to practice gratitude every single day for where I am right now.”

– Laura Long

Long said she has largely adapted to long COVID’s effects on her and her family, but she remains hopeful that this won’t be permanent.

“The dysfunction that happens on a regular basis has been happening for a while, so I’ve kind of adjusted my life around it. I’m still hopeful that doctors will figure this out and maybe someday I will enjoy pieces of my ‘old life’ again, but I’m not defined by it either way. I’ve done the best I can to make an enjoyable life in the current state I’m in, and I have good days and bad days ― mentally, physically and emotionally.”

She said she keeps her focus on all the things she can do rather than what she can’t. There are times when it can be hard, but ultimately she gives thanks.

“I now know firsthand that in an instant life can change in so many ways, so I make an effort to practice gratitude every single day for where I am right now,” she said.

Reporter’s note: Jillian Reed, who was interviewed back in 2020 as part of our first long-COVID story, declined to be interviewed again as she continues her recovery.



LEAVE A REPLY

Please enter your comment!
Please enter your name here