Nearly four years after being hospitalized with COVID-19, Liany Santos continues to suffer from the effects of long COVID.
“The big famous cough that just doesn’t go,” said Santos from her home in Providence. “Body pains that were not there from before. Literally, they did come right after the COVID.”
While many have tried to forget about the pandemic, Santos said she’s reminded daily how it’s upended her life.
“It’s like the constant soreness throughout my body. It’s like I can feel it in my back. I can feel it in my knees,” Santos said. “It’s just pushing through the pain on a daily basis.”
Ti Dinh is also dealing with the symptoms of long COVID.
“The most debilitating symptoms continue to be that I just can’t even stand without issue,” Dinh said.
She tested positive for COVID-19 last July. She said soon after she began experiencing an onslaught of symptoms.
Dinh said, “About a week after I had recovered, I got a debilitating light intolerance where I would just get really dizzy and faint if I saw any light.”
The light intolerance is so severe, Dinh said, that she constantly wears sunglasses – even at home with the shades drawn. She said her symptoms have changed over time, making life more difficult.
“For a while, it was more the light and some breathing issues,” Dinh said. “And then I started getting kind of muscle issues where I just was not able to really walk. Standing was always an issue. I would fall.”
Treating People with Long COVID
The causes of long COVID are still being investigated. According to the Centers for Disease Control and Prevention, studies have shown some groups of people are more likely to develop long COVID than others, including women, Hispanics and Latinos, and people who’ve experienced more severe COVID-19 illness.
Brandon Theroux is a physical therapist at Spaulding Outpatient Center of Kent Hospital in East Greenwich. He said he understands the challenges many long COVID patients experience, especially since there’s no way to test if a person’s symptoms are caused by long COVID.
“A lot of times we’ll go through a lot of testing and for a long period of time that may ultimately not give them any specific results or might not give them any more information than they had before,” Theroux said.
He works with patients who have long COVID. Many of them were referred by their primary care physicians. Theroux said on a patient’s first day “We’ll do a little more exploring and try to make a more specific diagnosis … try to identify what limitations or impairments they might have and ask them what their goals are and what their hope is to return to or what we can do to make their life a little easier or better.”
From there, Theroux will measure different baselines like motion and strength and help patients establish a plan to return to their prior level.
When asked about the most challenging part of treating patients with long COVID, Theroux said, “I think the most challenging thing, especially for the individuals, is that a lot of times it takes a long time.”
Santos received physical therapy several years ago and said it helped her regain her strength. She recently went back for treatment.
“I want to get better physically, but it’s just so tough. The breathing and pairing with the knee problems, it is really tough,” Santos said.
Hospitalized with COVID-19
It’s been a struggle since April of 2021 when Santos was placed in a medically induced coma at Rhode Island Hospital with COVID-19. At the time, she was five months pregnant.
“Doctors wanted to take me off of the life support,” Santos said. “They did not believe I would survive. They did not think that I would make it through it. My family completely opposed it. My husband definitely opposed it. And thank God they held on longer because I did. I pulled through.”
Santos was in a coma for a month and a half. When she woke up, she learned she had given birth to her daughter, Charlotte – she lived for eight days and passed away while Santos was still in a coma.
“I feel like she gave up her spot so that I would still be here and we just need to take care of ourselves a lot better. And I’m sorry, I still get emotional over that, but she was a trooper and she fought as hard as she could and she allowed me to be here,” Santos said. “She allowed my body to heal. She allowed it. And if she was there, it (would have) made it harder because my body would’ve been fighting for two as opposed to one.”
Emotional Toll of Long COVID
For Dinh, long COVID has been crippling. She’s currently on medical leave and said physical therapy would make her symptoms worse. Her sedentary lifestyle is a different reality from what life was like before getting COVID. At the time, Dinh was working in a metal shop and shaping it into different items. These days, Dinh said she is completely dependent on care.
“Sometimes I have to call specialists to see if they have cancellations that day to try to get in any sooner because some of their wait lists are like 10 months long, and right now my watch is telling me that my heart rate is freaking out, which happens even when I’m knitting or just laying sometimes,” Dinh said.
Dinh sees several specialists and is part of a digital long COVID support group. She said it’s frustrating how some doctors have treated her.
“I’ve had those doctors too where they’re like, ‘This is just anxiety. If you take these anxiety meds, you’ll stand again. You’ll walk again,’ which is just not true,” she said.
Dinh said she’s grateful to have a supportive partner and group of friends. Still, every day is a challenge.
“I’m getting emotional because I was supposed to go on my first home-going trip to Vietnam with my family at the end of (February). And … just a lot of plans this year that we’ve had to cancel. And a lot of people are like, ‘Don’t worry, you can reschedule a flight for a year later.’ And then I don’t know how long this is going to last,” Dinh said.
According to the World Health Organization, long COVID symptoms typically improve after four to nine months. About 15 in 100 people still have symptoms at 12 months. As for Santos, she’s not dwelling on the difficult years she’s endured. She’s focused on her recovery.
Santos said, “Life does go on. Can’t stay stuck in the same place. We got to move forward. That’s how I feel about it. Will I physically be the same? Absolutely not. Will I be the same mentally? Absolutely not. But we have to just keep moving forward.”
