COVID-19 'Long Haulers' Have Been Sick for Months. In N.H., More Care May Be On The Way
Jeff Lightizer had no plans of slowing down anytime soon. Aside from getting into a few bad car accidents, he was a perfectly healthy 59-year-old man who says he never smoked, and only indulged in the occasional beer. He was happy with his life as it was, crossing the border each morning from his home in Plaistow, to work at a manufacturing company in Massachusetts.
When the pandemic hit, Lightizer did everything the experts recommended.
He wore a mask everywhere, stayed 6 feet apart from those outside his household, and even wore gloves at work.
That’s why, he says, it doesn’t make much sense what happened to him this summer.
“I thought that maybe I was starting with a sinus infection because I was getting congested worse. My doctor’s office wanted me to get a COVID test first, and turns out they were right,” Lightizer said.
Lightizer tested positive on July 8. A couple weeks after that, he was rushed to the emergency room with COVID-19 pneumonia.
Not long after he got out of the hospital, he tested negative. But six months later, many of his symptoms have never gone away.
“If I go out and I try to do anything that causes my heart rate to go up, or my respiration to go up, it does cause my chest pain to worsen. I start to struggle for breath even talking,” he said. “Even just talking to you, it causes my breathing to become harder, you know, I almost get this wheeze.”
His doctors say the virus left him with lung damage and Myocarditis, a thickening of the heart walls. He says now, he doesn’t know if he will ever go back to work. He just finished applying for Social Security disability benefits.
Some people with long-term impacts of COVID-19, like Lightizer, have started referring to themselves as “long haulers.” There’s a lot of them, and they’re not just people who got very sick with COVID-19, or had preexisting health issues.
There are heart and lung complications like Lightizer has, abnormal blood clotting, “...the loss of smell and taste. And together with that is the difficulty with concentration or brain fog as well as memory problems.”
In one study, which has not yet been peer reviewed, about 15 percent of COVID-19 patients who hadn’t been hospitalized for the virus had at least one symptom three months after their initial diagnosis. Of those who were more initially sick with COVID-19, over 20 percent experienced symptoms in that same time period.
Doctors are calling it “post-acute COVID-19 syndrome.” As Dr. Jose Mercado, an assistant professor of medicine at Dartmouth, explains, those lasting effects can vary widely. There are heart and lung complications like Lightizer has, abnormal blood clotting, “...the loss of smell and taste. And together with that is the difficulty with concentration or brain fog as well as memory problems.”
Doctors are also seeing mental health issues like depression and anxiety.
Medical researchers still don’t know why it happens to some people, and not to others, or how long it lasts. But some institutions are creating post-COVID care clinics, where people with lasting effects can go to get help from a variety of doctors.
The most important thing about treating these patients, Mercado says, is that care needs to be decentralized so that doctors and researchers can better understand the range of impacts.
According to the nonprofit SurvivorCorps, an organization of people who have survived COVID-19, 29 states have post-COVID care centers.
Mercado says he and others at Dartmouth-Hitchcock Health are looking at creating one in New Hampshire. But for now, the closest one is in Boston, out of the Spaulding Rehabilitation Hospital. What began as twice weekly Zoom calls among specialists became a COVID rehab program as doctors soon realized that it took some people longer than others to recover.
Jeffrey Schneider is a physical medicine and rehabilitation specialist there.
“We’re still learning about it. But I think I’d like to say that we are able to help a lot of these people who have persistent symptoms,” he said.
Spaulding’s rehabilitation program is focused on people with lasting neurological and physical issues that have stemmed from COVID-19. The team is made up of case managers, occupational therapists, speech language pathologists, and other specialists.
Schneider says despite all the terrible things brought on by this pandemic, it’s leading to huge strides in medicine.
“There have also been a lot of new research that is coming out that a lot of us are working on to try to learn about this to meet the needs of this population, so I think in spite of all the challenges that people have faced, in some ways this has brought out the best in health care and the dynamism of the health care industry here,” he said.
Schneider hopes the clinic will be temporary, but it’s still too early to tell.
Lightizer is trying to get into Schneider’s clinic for treatment soon, but it’s been a while since he’s heard back from them. These days, with the exception of running a few errands during the day, he spends a lot of his time resting.
He says he wishes people understood that getting COVID-19 isn’t just about getting sick. It can transform your life. For him, it’s not only transformed his health, but also his political views: Lightizer says he was a life-long Republican who only rarely crossed party lines for down-ballot races. This year, he says, was the first election in which he voted for a Democrat for President.
“I just don’t think Donald Trump is doing his job, especially when it comes to COVID,” Lightizer said.
He can’t believe some people are still going out without a mask.
“It’s a gamble, you know? You’re gambling with the lives around you, and the long-term health of the people around you. I don’t know what’s going to happen to me long term, but...I think there’s just so many people out there who don’t take this serious,” he said.
Lightizer does have hope, though, that doctors will come to understand why people like him are still sick, and find ways to help them recover.