For COVID-19 ’long-haulers’ in the North Bay, virus fallout lingers on

New COVID-19 cases and hospitalizations were surging across the nation in mid-November last year. That was about when Santa Rosa resident Madi Baer realized the virus had taken her sense of smell.

A few days into quarantine, Baer, 21, slipped into the kitchen of her parents’ home while they and her siblings were out, to avoid the risk of passing on the infection. She grabbed a bag of coffee from the cupboard above the fridge, inhaled and immediately knew something was off.

“I opened the container and there was nothing,” she said. “That’s kind of when I figured I had lost it.”

Baer, a nursing student at Azuza Pacific University who returned home in November after finishing clinical rotations in the hospital, found the experience “kind of cool” at first. A month in, those feelings shifted to fear and isolation. By March, nearly 140 days after her first symptoms, she finds it somewhat laughable, she said.

“Everything just doesn’t taste as strong as it used to, but after four months I feel like I’m used to it,” she said.

The cause of Baer’s diminished sense of smell and taste, and how best to treat it, is one of the most mysterious of several long-term effects that some COVID-19 survivors experience for weeks or even months after initial infection. Across the globe and in the North Bay, COVID “long-haulers,” as they’re called, are seeking answers from doctors and scientists, who are grasping for information about the long-term implications of a virus that remains novel even as it continues to sicken and kill people a year into the pandemic in the U.S.

Several months in, the Centers for Disease Control and Prevention began exploring these long-term afflictions as more patients reported them, and several universities around the U.S. are helping lead the charge to learn more, said Dr. Gary Green, infectious disease specialist with Sutter Health in Santa Rosa. He keeps apprised of developments by participating in calls with the CDC and other partners on the topic as researchers continue to seek insight on the recovery process.

“I think we have most of the pieces to help patients in our traditional medical system,” Green said. “We probably need to coordinate them. But how do you coordinate something when you’re just understanding it at the same time? That’s a million-dollar question.”

The lingering symptoms can range in severity from mild inconveniences to serious hindrances that impede people’s ability to return to their work and normal routines. For Lower Lake resident Yvonne Sosa and her two daughters, the effect of lingering COVID symptoms has constrained much of their lives outside home.

Angela Shaffer, 21, Sosa’s elder daughter, tested positive in early December, though Sosa believes she passed the infection to her daughter after being exposed at work. More than 100 days later, neither of the two had returned to full-time work.

Sosa, 40, logged her first day back on the job since January on Friday. She said she was worried about being replaced or dismissed if she continued her leave.

She had more than just her own symptoms to worry about in that time. She also is looking after her elderly father, who survived COVID-19 but spent six weeks in the hospital, during which time he lost the ability to walk and care for himself.

During the few weeks when she did return to her job as a cook at a local preschool, Sosa said she experienced a cognitive haze that made it difficult to concentrate, to speak coherently and to perform tasks.

“I broke down and told my boss, ‘I don’t know if I can do this,’” she said. “I couldn’t remember where anything was. I couldn’t remember what I was supposed to do with the food.”

Sosa visited the emergency room once, when the shortness of breath that she still experiences was most severe and her doctor told her that her blood work showed she was at risk for blood clots. That was three weeks after her initial infection. But during her initial sickness, her symptoms had mostly been manageable: a fever and body aches that faded within a couple of weeks. She quarantined in her bedroom and thought she had recovered before the onset of the cough, shortness of breath and brain fog.

‘I’m not back to how I used to be’

Researchers in the earlier months of the pandemic focused largely on long-haulers who had severe cases of COVID-19 and were hospitalized. More recently, attention is being turned toward long-haulers who were not hospitalized or who had no initial symptoms at all, such as Sosa and her daughters.

Nichtehaa Sosa, 14, is also struggling with fatigue and cognitive difficulties after being sick with COVID-19. An A student, she had to drop a class because of difficulties completing her work.

Shaffer, her oldere sister, remains on leave from her job as a preschool teacher. She’s been dealing with severe shortness of breath and rapid heartbeat, which affects her ability to do her job. She spends a lot of time at work running after small children.

“If I didn’t have the breathing problems, I would have thought I was perfectly fine to go back to work,” Shaffer said. Her doctor with Lake County Tribal Health ordered blood work to be done and the results came back normal. So far, she’s gotten few answers as to what’s causing the issues.

She’ll see a cardiologist next at the recommendation of her doctor, to see if they can offer any information about what is contributing to her rapid pulse.

“Basically I’m on my own until I have that appointment done,” Shaffer said. “This feeling is really weird, to say I’m not back to how I used to be and I don’t know when I will be back.”

It’s not uncommon, Green said, for tests to come back normal when patients nevertheless report ongoing difficulty breathing and rapid heartbeat. That can happen with other chronic diseases, as well.

Though the normal tests can add to patients’ frustration about the lack of answers, Green said that in fact, it can bode well for their recovery prognosis.

“Knowing that their lung function and heart function is good means that they’re going to make a meaningful recovery,” he said. “It’s just going to take a little more time.”

While patients focus on recovery and healing, Green said, it can be helpful to set small goals for themselves, especially around physical activity.

Beyond the physical impacts, persistent complications also take a mental and emotional toll that Green said is equally important to monitor.

“I think that period of healing is at a level of body, mind and soul,” he said. “They’re not just getting the strength back in their legs, but their sense of well-being.”

Some people dealing with persistent loss of smell and taste reporting lose interest in eating, even feeling a sense of isolation and dissociation.

‘You actually need your sense of smell for safety’

Baer, the nursing student, said her appetite hasn’t changed much, but she has felt frustrated about not getting to enjoy food the way she used to.

Cooking Thanksgiving dinner with the family was one of the times it bothered her the most.

“I was really really not happy,” she said. “I couldn’t smell anything and I felt left out because everyone was walking around and saying it smells so good.”

But her inability to smell can also have broader implications for her health and safety.

Once, someone in the house accidentally left one of the gas burners running on the stove. Baer was the only one home, and even standing in the kitchen, she didn’t notice anything was amiss. Her mother entered the room, immediately noticed a strong scent of gas and rushed to turn off the stove.

“That was kind of a reality check,” Baer said. “That you actually need your sense of smell for safety.”

Baer’s doctor recommended she try “smell training,” a 12-week program to try to help her regain some of the sense she once had. Each day, twice a day, Baer gathers the five scents she picked to sniff: minced garlic, lavender oil, vanilla extract, ground cloves and Vicks Vaporub.

Rather than improving her sense, so far the smell of garlic has begun to emerge dominant; Baer said she smells it whenever any strong scent hits her nose. Parosmia, or distorted smelling, also is a commonly reported long-hauler experience.

Health officials and researchers are now exploring the potential impact of COVID-19 vaccinations in improving long-hauler symptoms. A small study from the United Kingdom recently showed that a majority participants with long-hauler symptoms reported improvement after receiving their vaccine.

Green noted that the paper had not been peer-reviewed, but called the results “encouraging” and “another reason to get vaccinated even if you have previously recovered from COVID infection.”

The extent of the uncertainty around the timeline of healing, however, makes it hard for Yvonne Sosa and Shaffer to know what’s the near future will hold for them.

Shaffer has been able to receive disability payments while on leave from her job, which help to cover her bills. She doesn’t expect to return until the start of the next school year.

Sosa relied mostly on savings during her time off the job she said. She managed to receive some pay through a family medical leave claim, but through this week, she had only received one paycheck since first falling ill.

In the past, Sosa sought some sense of affirmation, along with answers, through Facebook groups like the 161,000-member Survivor Corps. The volume and details of the stories there overwhelmed her, however, and she now avoids it.

She still doesn’t feel like she knows where to go for straight answers about how to keep healing.

“I feel like I’m having to pick and choose different advice from articles,” Sosa said.

Mother and daughter said they hope sharing their experience can help remind people of the risks involved with even surviving COVID-19 — to not assume that life will go on as before.

“It’s hard when I hear people say it’s a ‘plandemic,’ or it's not real,” Sosa said. “It’s very much real.”

“I just wish people would start taking it more seriously,” Shaffer said. “Sometimes it’s too late to take it seriously.”

You can reach Staff Writer Kaylee Tornay at 707-521-5250 or kaylee.tornay@pressdemocrat.com. On Twitter @ka_tornay.