Getting Answers: long-haul COVID-19 takes heavy toll on patients

(WGGB/WSHM) - According to the CDC, among survivors of COVID-19, one in five continue to have symptoms. “Long COVID” is a growing concern because so little is known about what causes it and how to treat it

In April 2020, the coronavirus invaded the Amherst nursing home where Jodee Pineau-Chaisson worked. She’s assigned to the COVID-19 unit and did Factetime calls with the families of those dying from the virus and delivered devastating news.

“You just make that call and say, ‘I’m sorry, your family member is gone,’ it’s probably one of the hardest conversations to have,” Pineau-Chaisson said.

Soon, it was Pineau-Chaisson who would end up in a COVID-19 unit as a patient this time in the ICU.

“It was just a very scary situation and I’m sure it was very scary for the nursing staff because I would tell them that I caught it on a unit,” Pineau-Chaisson added.

She had respiratory failure, double lung pneumonia, and was put on oxygen as she struggled to breathe. After six days, she was sent home in bad shape.

“My wife had to help me shower. I was just so weak, palpitations walking up and down the stairs, out of breath,” Pineau-Chaisson explained.

She has never fully recovered. The body aches, fatigue, and brain fog linger to this day.

“I was thinking ‘I’d be better. I’d be back to work,’ that kind of stuff and I just didn’t have the strength to be able to,” Pineau-Chaisson said.

When her 12 weeks of medical leave ran out and after being denied part-time or remote work, she was fired.

Dr. Jason Maley, an instructor at Harvard Medical School, said that long COVID-19 can be debilitating and job loss is often a side effect.

“They may be exhausted during the day, so they have trouble doing work at home or doing activities around the house…They can’t multi-task. Even just getting through, comprehending emails or documents is difficult and they have to keep re-reading,” Maley explained.

In addition, memory loss is something that Pineau-Chaisson finds most troubling.

“My brain just kind of stops and I can’t think or process,” Pineau-Chaisson noted.

Prior to the pandemic, Maley said this cognitive impairment had been described after other infections.

“In people who had sepsis or people who were in the intensive care unit, I think what’s striking is that we’re seeing it in people who had no pre-existing cognitive issues and had mild viral infections,” Maley said.

He noted that cognitive rehab can help to recover some functions of brain while teaching skills to help you stay on task and at work. Pineau-Chaisson has now opened her own counseling practice, but continues to struggle with bouts of extreme fatigue.

“I think you always worry that it’s going to get worse and the tiredness when it hits, it’s a different type of tiredness. People say work through it. It’s just exhausting, it’s to your bones,” Pineau-Chaisson said.

“Often, people describe feeling like they’re weighed down, like they’re carrying around a weight all day long,” Maley added.

Maley said there are some rehab and medication treatments, but number one is pacing the amount of energy you use.

“Recognizing that pushing too hard can cause people to crash and feel the next day, they’re in bed and can’t get up physically or they’re feeling sick or having achiness,” Maley explained.

Pineau-Chaisson is doing just that by taking more breaks and fewer clients, but she sometimes wonders where she’d be if she never got COVID-19.

“I would be able to take more clients in my practice, I would have been able to wean out of that job and not have the income loss I had,” Pineau-Chaisson said.

Pineau-Chaisson has been vaccinated and received two boosters. She’s slowly recovering.

Maley said that in his clinic, about one-third of patients said getting vaccinated helped symptoms of long COVID-19, but the majority saw no major change.

“It’s really mixed. A small portion say it got even worse,” Maley noted.

Maley said there’s hope on the horizon for those suffering from the effects of long COVID-19.

“What we’re really eager to get started is clinical trials that will test treatments,” Maley added.

He said in the second half of this year, clinical trials will be begin on some of the treatments he’s already been using in his clinic, as well as brand new ones.

“We’re hopeful that some of these new treatments and some of the ones that we plan to test will prove effective and will really help people recover quickly,” Maley said.

Those clinical trials are part of a $1 billion study run by the National Institutes of Health called “Recover” to get answers on treating and preventing the effects of long COVID-19.

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