Life as a ‘long-hauler’: The burden of long COVID

On the surface, 44-year-old Jamie Vinyard and 72-year-old Marilyn Pitini may not seem like they have much in common. Vinyard is a certified medical assistant in neurosurgery at MultiCare who, until the fall of 2021, spent her free time moonlighting at a dude ranch. Pitini is a retired mental health therapist who enjoys travelling with her family and tending to her garden.

What the two women share: lives upended by COVID-19.

Vinyard and Pitini are among the estimated millions around the world living with long COVID-19 — people, sometimes referred to as “long-haulers,” who experience lingering health problems following their initial infection. Long COVID symptoms are wide-ranging, and for many they are debilitating.

“It’s been almost a year since I first got infected, yet there are still days where I can’t do anything but lay in bed,” Vinyard says. “Sometimes I have a hard time seeing the light at the end of the tunnel.”

In the first of this two-part series, find out what we know about long COVID, who’s at risk and how it’s affecting people.

When COVID struck

Both Vinyard and Pitini’s experiences with COVID began in 2021. Vinyard was sharing a meal with friends one Friday evening when her head started pounding. The headache was so excruciating that she left dinner early. Within 24 hours, she had a fever. Her whole body ached. Her chest burned and she couldn’t stop coughing. Her symptoms were so severe that she visited the emergency department three times over the course of three weeks.

“The virus was attacking pretty much every organ I had, from my lungs to my kidneys,” Vinyard says. “I ended up being out of work for over a month.”

Similar to Vinyard, Pitini first realized something was amiss when she experienced a throbbing pain, but in her back rather than her head.

“I felt like I had been carrying around 500-pound bags, and no amount of rest seemed to help,” Pitini says.

Pitini soon learned that not only did she have COVID, but the virus had also triggered pneumonia and led to blood clots in her lungs. Pitini spent 16 days recuperating in the hospital.

While Pitini and Vinyard have recovered from their initial infections, they are still dealing with the long-term effects of COVID. Adding to that problem is the fact that there are more questions than answers about what qualifies as long COVID, why it happens and when people can expect symptoms to resolve.

What we know about long COVID

According to the Centers for Disease Control and Prevention (CDC), a person may have long COVID if they are experiencing new or ongoing symptoms at least four weeks after their original infection. However, there isn’t yet full consensus on this timeline. For example, the World Health Organization starts the clock for long COVID at three months following the onset of infection.

Diagnosing long COVID can also be tricky.

“There isn’t really one particular test that we can use to diagnose long COVID,” says Mary Fairchok, MD, a pediatric infectious disease specialist at Mary Bridge Children’s Hospital.  “Although there are some inflammatory markers that can appear abnormal in a blood panel, diagnosing long COVID is more about a process of exclusion — first ruling out other possibilities and putting the picture together from there.”

To understand why long COVID symptoms occur, it can be helpful to divide them into three categories. The first category includes symptoms that are a result of damage sustained to the body — for example, where the virus has attacked the heart, kidneys, lungs or other organs.

The second category includes symptoms related to the effects of hospitalization.

“It can take weeks for a patient who was hospitalized with COVID to recover,” says Ben Arthurs, MD, a pulmonary and critical care physician at MultiCare Rockwood Clinic. “And for patients in the intensive care unit, we commonly tell them that the expected recovery period is two or three times the duration of their hospital stay.”

The third category of long COVID symptoms is both the least understood and the most troubling.

“This group includes people who had mild to moderate COVID-19 infections, were never hospitalized and yet go on to experience long COVID symptoms, and no one really understands why,” Dr. Fairchok says.

Dr. Arthurs receives referrals for patients who experience persistent respiratory symptoms from COVID-19, and sometimes they fall into this mysterious third group.

“I see people who report shortness of breath and fatigue, yet their X-rays and breathing function tests don’t reveal anything abnormal,” he says. “These are the tough ones, and we don’t have a great explanation as to why these symptoms are happening.”

Researchers are still trying to understand who may be most at risk for long COVID, yet preliminary studies show that some people are more likely to develop long COVID than others.

“It seems to be more common in those who were severely sick with COVID and those who lost their sense of taste or smell during their initial infection,” Dr. Fairchok says. “Advanced age is a risk factor, and it does seem to be affecting women more than men.”

As for the symptoms associated with long COVID, the list includes fatigue, shortness of breath, headaches, fever, gastrointestinal issues, heart palpitations, muscle pains, memory problems and many more. In fact, one study published in the Lancet identified 203 different symptoms associated with long COVID spanning 10 organ systems throughout the body.

The new normal

Nearly a year after being diagnosed with COVID-19, Vinyard is plagued with many of these symptoms. She experiences recurrent ocular migraines and dizziness. She has difficulty hearing out of her right ear. Pain shoots through her legs and feet. Her heart races with minimal exertion, and she struggles with exhaustion and breathlessness on a daily basis.

Despite seeing multiple specialists and undergoing a number of diagnostic tests, solutions are scarce — there’s no one-size-fits all treatment available for long COVID.

In some cases, medications, pulmonary rehabilitation or physical or occupational therapy can help. Vaccines may also play a role.

“There have been reports that getting an mRNA vaccine can alleviate some long COVID symptoms for those who are unvaccinated, though it’s not clear exactly why,” says Dr. Arthurs. “What’s tough as a doctor is that sometimes there just is no easy fix. For some people, these symptoms are devastating — they can’t exercise, they can’t work. The quality-of-life implications are huge.”

For Vinyard, the abundance of unknowns surrounding her ongoing symptoms are a constant strain both mentally and physically.

“I know what I was capable of a year ago,” she says. “I was a person who would wrap up my shift at the clinic and then drive three hours to work my second job at the dude ranch and think nothing of it. I don’t have the strength, the energy or the breath to do that anymore. Just walking across the parking lot to get to work in the morning feels like running a marathon. There are a lot of days where I just feel awful, and I can’t explain why.”

Like Vinyard, Pitini’s path to recovery has not been smooth. For months after she was released from the hospital, she was on oxygen, and at one point she learned that her pneumonia had rebounded. While her breathing levels have now returned to normal and antibiotics vanquished the pneumonia, she still experiences backaches. And she finds that her stamina is not what it once was.

“I don’t have the energy that I used to have,” Pitini says. “Before all this, I could easily go out and work in my yard for hours, for several days in a row, but not now. I just keep trying to get back to normal, but it’s hard to know what normal is anymore.”

What to do if you have long COVID symptoms

If you’re concerned that you may have long COVID, don’t dismiss your symptoms.

“Visiting a primary care provider is a good place to start,” Dr. Fairchok says. “Some long COVID symptoms can mimic other conditions like lupus or cancer, so it’s important to get checked out. Long COVID can also take a toll on mental health — don’t hesitate to seek support.”

While there is much we still don’t know about long COVID, studies to better understand this condition are underway all over the world. In the next of this two-part series, learn about research that is taking place right here at MultiCare.