Months after COVID-19, many with long-term symptoms wonder if they’ll ever feel the same – Detroit Free Press

President Donald Trump after his release from the hospital for treatment of coronavirus told Americans to not "be afraid of it." But for those who are suffering the effects of the illness after getting sick, it's tough not to be dominated by it. (Oct. 9) AP Domestic

Gloria Vettese of Warren ishaunted bythe terror she felt in late March and early April, when she lay awake night after night, waiting and wondering whether COVID-19 would kill her and make her only child an orphan.

She managed to survive the virus, and is nowamong the nearly 200,000 Michiganders considered recovered so far in the coronavirus pandemic.

But the only criteria to beincluded in the state's recovery statisticsis to be alive 30 days after symptoms began. It doesn't mean life is back to the way it was before the virus struck.

For 56-year-old Vettese and a growing number of other survivors,nothing about life post-COVID is normal.

They're what's come to be known as long-haulers in a pandemicthat's killing about2,500 Americans a day as case numbers soar from coast to coast.

Those whosurvive COVID-19are often left with puzzling and sometimes debilitating conditions months after they are considered recovered from the infectious part of the disease.

Research now suggests that although SARS-CoV-2 is a respiratory virus, it can cause inflammation and changes to the vascular system that can injureblood vessels and leadto blood clots and organ damage.

Gloria Vettese was diagnosed with COVID-19 in the Spring but is still experiencing health issues. She is losing hair and has had cognitive changes along with a constant ringing in her ears. Vettese's son managed to avoid the virus despite being around his mom when she was diagnosed. She likes to take walks during the day to get fresh air.(Photo: Antranik Tavitian, Detroit Free Press)

To long-haulers like Vettese,the story of this pandemicisn't onlyabout who lives andwho dies. It's also about thepeoplewhose recoveriesareslow and uncertain, who wonder if what they're feeling in this moment will be as good as it gets for as long as they live.

"I have friends and close family members who are anti-maskers and who go to five bars anight, and are pretty much, you know, just, 'I need to live my life' " Vettese said. "I feel disrespected by that and I feel hurt by that.When the people who know you ... don't take it seriously, it makes itlike, OK, do you think I'm making it up?"

When coronavirus knockeddown Vettese, she wasn't sure she'd get through it."It was just 10 days of living hell," she said.

"I couldn't take a whole breath in, and so I would force myself to breathe." She knew she probably should have gone to the hospital, but Vettese said if she did, there would have beenno one to care for Aaron, her 13-year-old son.

She had a debilitating headache, fever, and body pain. Her appetite disappeared. Her vision had gone fuzzy, too.

"I would just sit here and I would be thinking,'My brain is gonna blow. I'm going to have an aneurysm. I'm going to have stroke. I'm going to have an embolism," she said. "I was worried about blood clotsbecause I couldn't move. ... At that point, I almost didn't even care if I died because it just hurt, and ... you just feel so bad that it just didn't matter.' "

But when Easter Sunday dawned, Vettese said the headache vanished. An incessant ringing in Vettese's ears replaced the headache, and that still hasn't gone away.

Now, she leaves the television on low most of the time "to try to muffle the sounds in my head," she said. "IfI'm sitting incomplete quiet, itdominates."

She's working toward a bachelor's degree, but said the brain fog and cognitive changes are so pronounced, it's been hard to get the straight-As she used to have.

"Timed online tests and quizzes aren't new to me and I'm not a slow learner and I'm not a slow test taker," Vettese said. But post-COVID,"I couldn't finish my work.I couldn't finish my quizzes.

"I've described it as like almost feeling kind of like a bubble around your head, likesomething that needs to pop so you can get connected with reality."

She has PTSD, too, reliving what it felt like when the virus had her in its grips.

"I would lay down at night and I would feel like ... it's going to get me because I'm going to let my guard down and close my eyes and go to sleep, and it's going to come and kill me in my sleep," Vettesesaid.

New researchpublishedin November in theAnnals of Internal Medicineprovides evidence that COVID-19does have a long-term impact for some people.

"It was sobering"to see the outcome of the study of 1,648patients treated at 38 Michigan hospitals from March to early July, said Dr. Vineet Chopra, who led the research.

Of them, 25% died while hospitalized. Another 7% died within two months of being discharged and 15% had to be readmitted to ahospital for ongoing health problems.

Among the488survivors who participated in thefollow-up surveysin theMI-COVID19 Initiativeregistry two monthsafter they were discharged, the number who saidthey were back to normal and free of lingering health effects was "vanishingly small," said Chopra, who ischief of hospital medicine at Michigan Medicine at theUniversity of Michigan.

Thirty-nine percent reported persistent health problems that kept them from doingnormal activities and 12% said they couldn't even do basic things to care for themselves.

"I think the part that really affected me the most was just the whole devastationpost COVID, which was around notbeing able to get back to work, for example, because of physical ailments, not being able to really do the things they needed to do for their daily living, like breathing and going to the bathroom and cleaning up the house and goinggrocery shopping because of persistentweakness, irritabilityor fatigue overall," Chopra said.

More than half reported that they were emotionally affected by their health conditions two months into recovery, and33% reportedseeking mental health care because of it.

About40% reported they couldn't return to work within two months of being discharged from the hospitalbecause they weren't well enough or had lost their jobs. About 26% reported only being able to work a reduced schedule.

University of Michigan Dr. Veneet Chopra, left, talks with hospital staff as he oversees Michigan Medicine's emergency response team to the COVID-19 outbreak.(Photo: Michigan Medicine)

"The financial toll of this," Chopra said, "was so closely intertwined to the emotional and mental health concerns, where a lot of patients said, 'We havewiped out our savings as a result of COVID' or 'We were rationing food or rationing medications as a way to kind of makeends meet.' "

The research shows there is much work to be done to ensurepeople who are consideredrecoveredfrom COVID-19 are getting the care they need tomanage their lives in the months that follow the initial illness, he said.

"In our medical dogma, ... we oftenthink about a treatment and a cure, but I think that the cure here isn't just resolution of the actual illness," Chopra said. "There's a lot more beyond it. And so it is time to start thinking about survivorship, which is not dissimilar to how we think about cancer survivorship, right?

"You're never done with it. You kind of put the beast in its cage for a while, perhaps, and you're in remission, and you hope you will stay in remission. But you really need help dealing with all of the challenges of being the patient in that situation. And I think a similar model is really needed for COVID patients."

Nicole Vaughn, 50, of Detroit remembers eatingcorned beef and cabbage for St. Patrick's Day dinner. It was her last big mealbefore COVID-19 stole her appetite and brought her to her knees.

"I had to give the duties of cooking to my eldest sonbecause I'm burning food. ...I couldn't smell things andI'm cooking with onions and garlic," said Vaughn,the single mother of five adopted children, who works asa counselor in theDetroit Public Schools.

She was sick to her stomach. Fatigue and exhaustion took hold, and by March 27, everything, including breathing, became a struggle.

"I'm weak," she said."I could ... barely get out of bed.I go to the bathroom to take my shower, and ... feeling as though I'm going to collapse, faint. So I get back to my room, and I text my sister on my cell phone. And I say, 'Please come and get me. Take me to the hospital.'My eyes areburning as ifhot sauce or something had been poured in my eyes."

Her 14-year-old daughter, Leah, helped her put on her shoes, and Vaughn's sister took her to the University of Michigan in Ann Arbor, where tests confirmed that she had double pneumonia and COVID-19.

She was given supplemental oxygen, but the day after she was admitted, it became clear she needed more help. Vaughnneeded ventilator support.

Nicole Vaughn, a 50-year-old single mom of five adopted kids, had COVID-19 in March. She was hospitalized at the University of Michigan in Ann Arbor and put on a ventilator. Vaughn is a counselor for the Detroit Public Schools and says she's having ongoing problems months after she contracted the virus. She has insomnia now, and night sweats. She also has brain fog, difficulty controlling her blood sugar, and worries about what her COVID-19 infection means for her long-term health and survival.(Photo: Ryan Garza, Detroit Free Press)

"I took a nap is what I call it," Vaughn said. "My sister said I was in a coma. ... When I came out of sedation, it was April 1."

Waking up was an unsettling experience. She couldn't speak because the tube from the ventilator was still in place, making her feel like she was choking. Her nurse gave her a dry-erase board so she could ask questions and write messages.

Grammy-Award winning soul artistBill Withers had died while Vaughn was unconscious, so when she learned the news, she listened to some of his biggest hits, like"Ain't No Sunshine" and "Lean on Me," and wrote out her final will and testamenton that dry-erase board.

"I wasn't sure what the outcome was going to be," Vaughn said. "I hadwritten out everything I wanted each one of my children to have."

Nicole Vaughn, 50, is a single mom of five adopted kids. When she came down with COVID-19 in March and was hospitalized and put on a ventilator, she remembers writing out her final will and testament on a dry-erase board in the ICU so she could be sure her final wishes were known. Happily, she never needed it.(Photo: Ryan Garza, Detroit Free Press)

But she never needed that will scrawled in dry-erase marker. Vaughn went home on April 6, still feeling tired and weak, but grateful.

As the months passed, she improved, but some symptoms lingered, and continue to nag at her even now.

"I do have the fatigue," she said. "I also have what I'm referring to asnight sweats, so it's almost like wheremy body can't regulate the temperature like it should.

"And from time to time, I'll have what is called brain fog."

Vaughn is highly educated she has four master's degreesbut said every now and then, "I'll forget a particular word and I know what I want to say, and it takes me a minute for it to come back to me." At times, simple math can stump her.

Vaughn didn't have high blood pressure before she contracted the virus, but her cardiologist is now considering putting her on medicine to help control it. Managingher blood sugar is also harder than it ever was before she contracted coronavirus.

"That's the one thing I recognized with COVID, it impacts everyone differently," Vaughn said. "So even if there are underlying health conditions or underlying hereditary conditions, it seems like it exacerbates those things.

"That's why I don't understand people not wanting to wear their mask. You know, COVID is not the flu.I've had the flu before. This issomething that you do not want. You definitely don't want it."

For people who survive COVID-19 hospitalization, Chopra said "the physical toll this takes on you is profound."

He's seen it in the patients he's treated at Michigan Medicine, and he's seen it through the lens of the broader study of how patients around the state have fared 60 days after being discharged from hospitals.

"It's not an acute sort of illness where you feel weakand then you come right back to normal. There's a persistent weakness and debility," Chopra explained. "And I've seen it in healthy 25-year-olds who run marathons, who got COVID, came in and within a day or two, could barelyget out of bed and use the bathroom without support. All the way to older patients who are obviously more at risk of adverse disease, and also more at risk of physical instability and deconditioning."

The disease affectsmore than the lungs.

"This COVID fog that patientsdescribe where they have trouble with memory, trouble recollecting events and it's not justaround the time they were in the hospital with COVID it's remote memories, almost likea vascular dementia-like syndrome," Chopra said.

"There's the laying in bed, there's the circulatory changes, but there's probably something also with muscles and deconditioningthat's important to keep in mind.The other thing thatI think is important to link this to and to think about is just the toll of a condition called sepsis, which is, in many ways, very similar to COVID.

"COVID is a viral illness that basically causes a sepsis-like syndrome, where the body's immune system kind of goes haywire, which is our current understanding of sepsis."

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Sepsis is defined as the body's over-reaction to an infection. It triggers a massive inflammatory response that can cause tissue damage, organ failure and death, according to the U.S. Centers for Disease Control and Prevention.

"It's one of the reasons why we give steroids now to these patients," Chopra said."We think they get better because we help the immune system kind of not get so dysregulated.

"But I think the clue there for us moving forward is that the therapeutics that we're likely to see the most benefit from are likely going to have some degree of overlap with managing patients who have severe sepsis. And that's where a lot of the work on the anticoagulants, the anti-inflammatories, and some of the immune-modulating sort of drugs I hope it will lead us to. We've seen glimmers of hope there withthe monoclonal antibodies now, too."

Nina Lewellen admits she got a little lax in the summer about following the recommendations to avoid large gatherings.In late June, she and her mom went to a baptism and first birthday party for an extended family member.

"We all wore masks and the tables were 6 feetapart, and we stayed at tables with members of our immediate family," she said. But soon after,both she and her mom developed coronavirus symptoms headache, fatigue, and congestion.

Nina Lewellen, 30, of Lincoln Park had COVID-19 in July. She says she's mostly recovered, but is still losing her hair.(Photo: Lewellen Family)

Lewellen, 30,a single mother who works for DTE Energy,went to an urgent care center near her home in Lincoln Park and got a coronavirus test.The result was negative, so Lewellen tried not to worry about it.She thought it might be a summertime cold or sinus infection.

But the more time passed, the sicker Lewellen grew. She becameuncharacteristically tired, and achy. And by Independence Day, she had a fever.She began to cough and had difficulty breathing.

A few days after that, she said, "I couldn't functionat all. I mean, the burning in my lungs had gotten so bad that I couldn't even stand up. ... I just remember gasping, just gasping and gasping for air and taking short shallow breaths because really any movement just caused it to trigger aspasm.

"The point when I realized I needed to go to the hospital is when I would stand up and my hearing started to fade and my vision started to fade," Lewellen said.

She was admitted to Henry Ford Wyandotte Hospital July 9.Lewellenhad none of the major risk factors that experts warnwould put someone at high risk for severe illness from COVID-19.

"I am that young and healthy" person, she said, who's supposed to only have minor illness when infected by this novel coronavirus.

"But I'll never forget ... how itfelt physically. I will never forget how it felt emotionally. I will never forget sobbing whilemy 3-year-oldtried to climb on my lap and asked me to read him a story, and I couldn'teven do that."

She was on steroids and blood thinners in the hospital and slowly began to improve. Lewellenwas well enough to go home July 13. Her mother had a more severe case of the virus, was hospitalized longer and alsonow suffers some of the long-hauler after-effects of COVID-19.

"My mom was in really bad shape," Lewellen said."She was on oxygen. She came home with oxygen. She just wasn't good."

They were both hospitalized in mid-summer, when Michigan's coronavirus case counts hadbottomed out, and fewer people were being treated in hospitals for it. Lewellen sometimeswonders whether her momwould have survived if they'd have contracted the virus during theMarch surge, when metro Detroit's health care systems were in crisis.

"I don't know if my mom's outcome would have been differentjust because of the overload in the hospitals and all of that," Lewellen said. "There's a lot of guilt associated with that and I think about that every time people claim, 'I'm not living in fear.I'm gonna go live my life.' Likeyeah, you might be fine, but somebody that you love might not be fine. And that's guiltthat no one ... could live with."

The virus took atoll on Lewellen, too.

For weeks after she came home from the hospital, her muscles felt weak. Straightforward things were somehow confusing, and insomnia taunted her, keeping her awake even though her body desperately needed rest.

"I couldn't sleep for days. I would sleep maybe for 20 minutes, and then wake up," Lewellen said. "And I got to the pointthat I was delirious from the lack of sleep.

"I could not take care of kids. ...I could barely take care of myself. Just the fatigue. ... I couldn't make it one block down the street with my son before I had to turn around and come home and that's something that really gives you pause and really gives you a lot of frustration and anger.

"I'm healthy and I'm young and people count on me and I can't. I just can't. And that's really hard to come to terms with emotionally."

While many of those problems have improved, Lewellen said she is stilllosing her hair and has brain fog from time to time. She'sconcerned not only about the unknowns and about what having COVID-19 might mean for her health long-term in 5 years, 10 years or even 50 years from now.

"I don't want anybody else to go through what I went through. ...We know now about all of these long-term issues that people are having, and there's still so much that we don't know," Lewellen said.

And if the political winds shift in the future, she thinks about what her history with coronavirus might mean for her insurability.

"I'm concerned aboutthe Affordable Care Act getting reversed," Lewellen said. "I had COVID. Is my health care not going to be covered? Are there certain things in the future that won't be covered? I know that's just speculation, ... but COVID's becomemy pre-existing condition."

Although the last year has led to much new understanding about this novel coronavirus, so muchremains unknown, said Dr. Dawn Misra, department chair and professor of epidemiology and biostatistics at the Michigan State University College of Human Medicine.

"This idea that only the elderly and only those with chronic conditions or obesityare really at riskleads people to not fully appreciate their own risk," Misra said. "We have tracked numerous cases of people who don't fit any of those criteria and still die. We also don't know long-term what's going to happen."

Research from the 1918 flu pandemic, she said, showed that children born to women who had the Spanish flu during pregnancywent on to have more chronic conditions and a shorter life expectancy than those whose mothers didn't contract the flu while pregnant.

It could be decades before we have a more complete picture about just what this virus can do.

"We are just scratching the surface of understanding what it is," Misra said. "So for those who are getting it and do not seemto be that sick, I don't think that makes it OK. ... Nobody should be having this virus, if possible. And so survivingand just notdyingreally is not good enough."

Dr. Dawn Misra, department chair and professor of epidemiology and biostatistics at the Michigan State University College of Human Medicine.(Photo: Michigan State University)

What's been evident even this early on in the pandemic, Chopra said, is that there are gaps in the social safety net for helping people recover long-term from severe COVID-19 illness physically, mentally and financially.

"You can't help but get emotional, especially when there's people that you care for, and you call them after a while and you hear their stories," he said."It'sgut-wrenchingin many ways.

"But I'm hopeful that the silver lining here is that by shining a spotlight on this, and then pointing to all the challenges beyond just the acute state that we'll come up with a way to kind of help these people, because I do think we need a better way to do it."

Ideally, Chopra said he'd like to seespecialized post-COVID care clinics where physicians would do fullassessments, and target patient care to what they people most need.Thosewho'vehad blood clots from COVID-19, for example, wouldbe assessed to be sure they're on theright anti-coagulants. Patients who havememory deficits wouldgetfollow-up to be sure they aren't living alone and have help to keep them safe.

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Months after COVID-19, many with long-term symptoms wonder if they'll ever feel the same - Detroit Free Press