Surviving COVID-19: For some, getting the virus was just the beginning

Paul Naldrett is lucky to be alive.

Doctors patched up the holes in his lungs where COVID had ravaged them. He was hospitalized in March and spent four months being transferred from one hospital to the next.

At one point, his family was told to make arrangements for his death. He was in a medically induced coma for a couple of days, intubated. But he pushed through. After his left lung collapsed, an emergency surgery worked. He relied less and less on the tubes that ran through his chest and sides draining his lungs. He was sent home in June.

A little less than a year after being diagnosed with COVID-19, Naldrett is adjusting to his new life.

Despite many cases being shrugged off as “mild,” millions of Americans are dealing with lingering symptoms or life-changing disabilities due to COVID-19. For every death from COVID-19, there are countless survivors who have not gone unscathed by the virus.

COVID-19 can attack just about any part of the body, including the organ systems, from the heart to the lungs and the nerves to the brain. Each survivor might have a varying and lengthy list of symptoms or injuries to rehabilitate or treat for the rest of their lives.

With his limited lung function, Naldrett can no longer work.

He qualified for family medical leave at first and then applied for disability benefits when doctors helped him realize returning to work was out of the equation. That’s because his decreased lung capacity requires him to be connected to oxygen 24/7 to live. He uses an oxygen concentrator plugged into the wall with long tubes that enable him to get around his apartment while he’s at home.

When he’s out, he will use an oxygen tank he can either roll behind him or put in a backpack.

“I feel better physically but performance-wise, I would say I’m at 30 to 40% of what I used to be able to do, and that might be too generous,” Naldrett said.

Mentally, Naldrett is at 100%, but physically, even basic household chores pose challenges.

Taking out the trash is an ordeal that can take an hour sometimes, he said, because it takes a lot of lung capacity to get back up the stairs. He’s exhausted and fatigued after any sort of exertion. He qualifies for nearly 20 hours a week from a home health aide who can help him go grocery shopping, clean up around the house or cook.

Naldrett planned to get vaccinated. But his job for an industrial company that does preventive maintenance and cleanup in various facilities was an “essential” one, and he came down with COVID a few days after returning from a work trip to Oregon.

Naldrett is 55 years old, lives in Spokane and was healthy before he got the virus. He has Type 2 diabetes that he said had been in check before he got the virus. His work was physical and demanding, and during winter 2020, he was working up to 62 hours a week. He’d been careful the whole pandemic, he said. And then, just a month before he was eligible for a vaccine in Washington, he tested positive.

Relearning to walk

Connie Maden hasn’t given up hope.

She made a lucky investment four weeks before testing positive for COVID-19 that she didn’t expect to use so quickly. She had seen an advertisement for Life Flight, the helicopter emergency transport service, which people in rural areas often use if they have to be airlifted to a larger hospital. The company accepts insurance, but also offers memberships to cover costs beyond what insurance will pay.

Maden lives outside of Tonasket, near the Canadian border, and at the height of the delta surge in September, she came down with typical symptoms from a cough to fatigue that left her feeling like she’d been hit by a train. She sought treatment at a hospital and was sent home. Then she got worse. When she began to lose feeling in her feet and legs and eventually, her bowels, she went to the emergency room again.

COVID was attacking her spine. She had not been vaccinated, and her doctor had given her a medical exemption based on her previous adverse reactions to injections, including flu shots. This time at the emergency room, she was placed in a helicopter and flown to Holy Family Hospital in Spokane.

She remembers laying in the COVID ward there wondering if this would be the end.

She would hear crying, screaming and people saying, “I don’t want to die alone,” or, “Please, help me.”

“You are laying in there wondering if you’re going to die,” Maden said.

She started praying for the people around her and managed to stave off her depression that way, and her positivity has continued to fuel her recovery to this day.

Three weeks later, she was discharged in an orange taxi that drove her all the way home, 160 miles. She could barely walk, and her cab driver stopped at every rest area on the way, and graciously helped her walk to the bathroom.

From then on, it’s been self-determination to get better for Maden.

It took three months for Medicare to approve her request for physical therapy, which she began around Christmas .

This month she will finally get a full nerve study and a series of MRI scans in Spokane, hoping to pinpoint where her nerve damage is and determine a course of treatment for her.

She started a GoFundMe to help cover her medical bills, which she said are hard to pay for because her Medicare plan isn’t the best. Trying to access other support systems, like food stamps or health coverage from the state, has also been challenging, especially because there’s not a one-stop shop to access those resources.

Maden wants to return to the classroom to substitute teach one day, but she still struggles to walk normally. At home, she can balance and lean on walls and furniture to get around.

Elsewhere, she said her legs become like windsocks outside car dealerships, and she really has to focus her mind on telling her legs how to move.

‘Mild’ cases can persist too

Previously healthy people, some of whom had “mild” COVID sickness initially, continue to experience a range of symptoms for months and years after testing positive for the virus.

This is called post-acute sequelae of COVID-19, or more simply, long COVID.

Ear-splitting headaches. Persistent loss of taste or smell. Difficulty breathing. Brain fog and forgetfulness. Dizziness and inability to walk without assistance.

One study reviewing research about long COVID found that the presentations of long COVID are vast and varied.

“The dominant manifestations of post-COVID-19 syndrome are pulmonary, neuropsychiatric, cardiovascular and gastrointestinal,” researchers wrote recently in a Nature article.

A large study, which used patient data from the Department of Veterans Affairs, found people with COVID-19 are at an increased risk for cardiovascular disease even beyond the first 30 days after testing positive.

“Our results provide evidence that the risk and one-year burden of cardiovascular disease in survivors of acute COVID-19 are substantial,” says the research published this month in Nature.

These are all real symptoms experienced by some COVID patients. Despite consultation with medical professionals and in some cases, treatment in long COVID clinics, they do not get better.

Estimates range from 10% to 30% of people who’ve had COVID will experience symptoms beyond the 60-day mark.

While the research continues to ramp up to draw connections between symptoms, treatments or potential causes, survivors are left contemplating their futures, rethinking their lives and searching for camaraderie in the midst of daunting and disenchanting times.

It’s been through advocating for herself, pushing for referrals to specialists, that Mindy Jackson has been diagnosed with several conditions that are products of long COVID. Inflammation is a common COVID side effect, and long haulers are finding that if it lingers, that leads to more complications.

For Jackson, that has meant rheumatoid arthritis and most recently colitis. She also suffers from postural orthostatic tachycardia syndrome, called POTS, which makes her heart rate irregular and affects her balance.

In winter 2020, Jackson, who lives in Kennewick, went to the emergency room twice after being diagnosed with COVID-19 and pneumonia. She went home both times, however, and has since been trying to keep track of her symptoms.

By the seventh or eighth month, Jackson was tired of tracking her symptoms. She was tired generally and many of her symptoms were not improving, even with treatment. She still hasn’t returned to work full time. She’s been taking long weekends, using sick days and paid time off, which she said she’s thankful to have. Without it, she’d be in trouble.

The federal government recognizes long COVID as a potentially disabling condition, under both the Americans With Disabilities Act, parts of the Rehabilitation Act and the Affordable Care Act. They made this formal change in 2021, opening up pathways for people with long COVID who cannot return to work to apply for benefits and assistance.

For Jackson, who has a master’s degree in vocational therapy, she knows disability is just one step away for everyone, but she, like many people, expected that to come with age. Instead, her life changed dramatically in a matter of weeks.

“Disability is my business, and I think, what’s going to happen to our disability system with all these people like me?” Jackson said. “It’s kind of scary if you think about it because there are so many people.”

Jobi Karhu, who lives in the Seattle area, is deeply grateful for the UW Long COVID clinic, as well as multiple online advocacy groups where survivors share stories of their symptoms, new research and treatments prescribed by their own doctors.

Karhu ran out of unemployment when the CARES Act funding went away. Before she got sick, she was working as a receptionist at a medical clinic, but she can’t imagine doing her old job now with her various long COVID symptoms she’s fighting for a year.

She has to use sticky notes in the kitchen and on her bathroom mirror to remind herself what she has and hasn’t done during the day. If she leaves the kitchen midmeal preparation, she’s sure to forget about the stove or something in the oven, and she wouldn’t be able to smell if something was burning.

Her doctors have prescribed her an array of medications: an inhaler, asthma medication, beta blockers to keep her blood pressure lower and ideally regulate her erratic heart rate. Nothing helped with the headaches, which she describes as feeling like little explosions or something bursting inside her head. The frequency of these headaches has decreased, but it still happens, and it’s painful.

In recent months, doctors have found a tumor in Karhu’s brain. She said the doctors have not yet ruled out whether it is connected to the virus or her ongoing symptoms, but the tumor sits on the part of the brain that controls taste and smell – both senses that Karhu will never gain back due to the nerve damage. She was never hospitalized for her symptoms, which have become debilitating. Karhu can’t drive anymore and completely relies on her family for support.

She’s hired an attorney to help her go through the process of applying for disability benefits.

“I’m just a shell of who I used to be, but I’ve been very fortunate with the support and love from my husband and son. I’ve been fortunate that they’ve witnessed and understand what I’m going through,” Karhu said.

‘We have to listen’

The trouble with long COVID is that the symptoms are so broad and far-ranging that there isn’t a one-size-fits-all remedy. For patients experiencing neurological symptoms or fatigue, treatments are different than for those who experience inflammation. Headaches and insomnia are also treated differently. The list goes on.

If just 10% of 75.3 million people who’ve been diagnosed with COVID-19 in the United States experience lingering symptoms or other complications, that’s 7.5 million patients.

The Washington Department of Health does not have estimates of how many state residents have struggled with long-term effects of the virus.

A September CDC report found that among 300 recovered COVID patients in Long Beach, California, one in three adults reported post-acute sequelae two months after their positive test result, with higher rates reported among people older than 40, women, people with pre-existing conditions and Black people.

Long COVID is not limited to just older people, however. A small sample of a study from Norway found that half of COVID-positive patients they surveyed who were 16 to 30 years old were experiencing long COVID even six months after testing positive, including shortness of breath, impaired concentration and memory problems.

Long COVID clinics have popped up to begin tracking patients, enrolling some of them in studies and treating their symptoms. In Washington, the long COVID clinics are located primarily in the Puget Sound region.

The University of Washington’s Long COVID clinic is taking patients from around the state, not just in the Puget Sound region, although patients described long wait times to be seen there. The clinic is still busy, and patients should not expect to be seen right away.

Going forward much of COVID-19 care will play out in primary care and specialists’ offices, depending on a patient’s symptoms.

Dr. Peter Barkett, a Kaiser Permanente physician in Silverdale, Washington, said there is no single test to diagnose long COVID conditions and sometimes a blood test or others used on these patients may come back “normal” even if the patient is suffering.

“We have to listen to patients and acknowledge the condition, empathize with them,” Barkett said.

He usually tries to manage expectations because so far in his experience, long COVID is not something that can be fixed in one visit.

“It’s a really longitudinal approach to care because unlike a bacterial pneumonia or sinus infection where you can take a pill and be done with it, there’s not a single silver bullet,” he said.

Jackson sought out several specialists to treat her myriad side effects. She even went to see a dysautonomia specialist in the Puget Sound area. Naldrett sees a pulmonologist regularly to check on his lung function.

Barkett is working with other physicians throughout the Kaiser Permanente system to collaborate and ensure patients can get access to the most up-to-date studies, treatment information and specialists via virtual consultation.

The majority of patients with long COVID are showing steady improvement, Barkett said, although it may not happen overnight. The hope is that patients whose symptoms have persisted can continue to get good medical care and employ self-care techniques to improve their lives, he added.

Not all patients have access to providers as understanding as Barkett.

The silver linings

It’s been two years since Melissa Carpenter came down with what she assumed was COVID-19 in late February 2020.

Her doctor at the time didn’t believe her. A different physician and the UW Long COVID clinic confirmed her diagnosis much later. Testing was scarce at the beginning of the pandemic and reserved for people with a travel history to China or confirmed exposure, and she wasn’t eligible for it.

So she got sick at home in Spokane, with what have become known as hallmark COVID symptoms: the fever, the cough, the full body chills and nerve pain, severe headaches and a sickness that felt worse than bronchitis and pneumonia combined – the sickest she’d been in her adult life.

She waited for the symptoms to subside, but some never did, like the brain fog and her eye pain. Her eye pain got so bad that it was interfering with her daily life, and when she went to the optometrist, she was diagnosed with cataracts that required surgery.

“Their first question was if I’d had some blunt force trauma to the head, if I’d fallen,” Carpenter said. “The only thing I could think of was I’d had COVID – initially they laughed at me and said COVID doesn’t do that.”

Later, she found reports from other long-haul patients online that they’d had vision impairment since getting the virus. Physicians don’t know whether COVID played a role in Carpenter’s eyes rapidly deteriorating, and they likely won’t know for a while, she said.

It was hard experiencing a condition and feeling gaslit by providers, not in animosity, but just by having a condition that appeared so rapidly with no genetic or illness-based connection.

Such is life with long COVID. Some long COVID patients, especially ones like Carpenter, who couldn’t get access to a positive test in early 2020, faced challenges being believed by providers. It took months for the symptoms to “go away” for many patients.

Now two years into the pandemic, the standard has been set and more providers are aware of the problem than ever before.

At or around two to three months, many patients experiencing prolonged symptoms will see them begin to resolve, physicians and researchers say. During that time, people with ongoing symptoms should be doing more self-care and lower-risk things to help their bodies recover, Barkett said.

By the 12-week mark, if Barkett doesn’t see marked improvement, he expects a longer road to recovery for a patient.

A certain percentage of people – estimates range from about 10 to even 30% of those who test positive for the virus – will not improve at that mark, which is when treatment can become more specialized.

Previous coronaviruses, like SARS and MERS, have left patients with prolonged symptoms, Barkett said. The silver lining, is that patients who experienced prolonged symptoms after those respiratory viruses did show a steady amount of improvement, he added.

“That’s what I’m hoping for some of these persistent, lingering cases,” he said.

This time around, the coronavirus has caused a global pandemic, and the ripple effects are just beginning to be felt nationwide.

Research is coming

The federal government has put $1.25 billion into funding for long COVID research and treatment studies to search for answers about its cause and best treatment for patients.

Dr. Julie McElrath, a professor and researcher at the Fred Hutchinson Cancer Research Center, has been studying a cohort of patients who got COVID-19 since spring of 2020.

This enabled her and her team to identify early markers in the course of disease for these patients that might be helpful in predicting whether it might occur.

“There’s some reason to think they might do better if we can get an early start with treatment,” McElrath said.

McElrath’s team is collaborating with a group at Emory University to expand the size of the group they are examining, to look at potential similarities, from underlying health conditions to a person’s immune response.

McElrath’s team is researching the immune response’s role in long COVID and planning to publish results soon.

Long COVID appears to be more of an inflammatory process, which means there could still be virus present in some patients, McElrath said, adding in the future better drugs could help clear that virus.

Studies are underway and it’s possible another virus a person might already have is being activated by the coronavirus.

One study of about 300 patients with COVID-19, set to be published by Cell, found four similar risk factors in patients who have post-acute sequelae of COVID-19 which include: Type 2 diabetes, higher viral load, previous Epstein-Barr virus and specific autoantibodies. The study was limited by its small sample size, and researchers only studied these patients’ symptoms for two to three months after they were diagnosed.

McElrath expects that research into finding patterns to take time.

“(Long COVID) has such a diverse presentation that it’s hard to tell what the common denominator is because it may be more than one cause,” she said.

Researchers are hopeful that vaccinations will help blunt the impact of long COVID in patients, or at least mean it happens less frequently than for those patients who got COVID before they were vaccinated.

For that to be true, people need to get vaccinated.

“Our hope would be if we can get a handle on getting vaccines taken up sufficiently that we can eventually get control of the pandemic, as well as good antivirals to treat those who are infected that we won’t have to keep seeing this,” McElrath said.

Vaccines for people with long COVID can create an improvement in symptoms, but there’s no guarantee.

Josephine Keefe, who came down with COVID in the summer of 2020, and spoke with The Spokesman-Review that winter, has since been vaccinated. Her energy level and brain fog changed after her second dose, she said.

That doesn’t mean she’s completely back to normal. She still struggles with short-term memory loss, balance and digestion.

“Every day is an ongoing conscious effort to alleviate or assist in soothing those long haul symptoms,” she wrote in an email.

Long COVID advocacy groups have been organizing and advocating for more research, resources and recognition throughout the pandemic.

Many people experiencing these symptoms have found comfort and camaraderie on Facebook pages or support groups, like the Longhauler Advocacy Group, where people like Jackson and Karhu met and learned more about their symptoms. They also found they weren’t alone.

The Longhauler Advocacy Group wrote an open letter to President Joe Biden, asking him to address the millions of Americans who have survived but continue to be impacted by the virus. They are asking for assistance programs for long haulers who cannot go back to work as well as a national task force to address the needs of the millions of Americans who are still struggling.

In the interim, providers expect to continue treating long COVID patients for a long time.

“Our methods for treating them will get better and better, so when patients think they have long COVID symptoms, I encourage them to reach out to providers,” Barkett said.

Even for patients who saw a doctor three months to a year ago, he recommended reaching out again.

“There are things we know now that we didn’t then, and things we’ll know in the future that we don’t know now,” he added.