Long-haulers wonder ‘Is this as good as it gets?’
Gloria Vettese of Warren is haunted by the 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 now among the nearly 200,000 Michiganders considered recovered so far in the coronavirus pandemic.
But the only criteria to be included in the state’s recovery statistics is 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 pandemic that’s killing about 2,500 Americans a day as case numbers soar from coast to coast.
Those who survive COVID-19 are 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 injure blood vessels and lead to blood clots and organ damage.
To long-haulers like Vettese, the story of this pandemic isn’t only about who lives and who dies. It’s also about the people whose recoveries are slow and uncertain, who wonder whether 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 a night, 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 it like, ‘OK, do you think I’m making it up?’ “
When coronavirus knocked down 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 been no 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 clots because 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. “If I’m sitting in complete quiet, it dominates.”
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-A’s 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, like something that needs to pop so you can get connected with reality.”
She has post-traumatic stress disorder, too, re-living 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,” Vettese said.
New research published in November in the Annals of Internal Medicine provides evidence that COVID-19 does have a long-term impact for some people.
“It was sobering” to see the outcome of the study of 1,648 patients 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 re-admitted to a hospital for ongoing health problems.
Among the 488 survivors who participated in the follow-up surveys in the MI-COVID19 Initiative registry two months after they were discharged, the number who said they were back to normal and free of lingering health effects was “vanishingly small,” said Chopra, who is chief of hospital medicine at Michigan Medicine at the University of Michigan.
Thirty-nine percent reported persistent health problems that kept them from doing normal 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 devastation post COVID, which was around not being 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 going grocery shopping because of persistent weakness, irritability or fatigue overall,” Chopra said.
More than half r
eported that they were emotionally affected by their health conditions two months into recovery, and 33% reported seeking mental health care because of it.
About 40% reported they couldn’t return to work within two months of being discharged from the hospital because they weren’t well enough or had lost their jobs. About 26% reported only being able to work a reduced schedule.
“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 have wiped out our savings as a result of COVID’ or ‘We were rationing food or rationing medications as a way to kind of make ends meet.’ “
The research shows there is much work to be done to ensure people who are considered recovered from COVID-19 are getting the care they need to manage their lives in the months that follow the initial illness, he said.
“In our medical dogma … we often think 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.”
Detroiter’s final will on dry-erase board
Nicole Vaughn, 50, of Detroit remembers eating corned beef and cabbage for St. Patrick’s Day dinner. It was her last big meal before COVID-19 stole her appetite and brought her to her knees.
“I had to give the duties of cooking to my eldest son because I’m burning food. … I couldn’t smell things and I’m cooking with onions and garlic,” said Vaughn, the single mother of five adopted children, who works as a counselor in the Detroit 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 cellphone. And I say, ‘Please come and get me. Take me to the hospital.’ My eyes are burning as if hot 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. Vaughn needed ventilator support.
“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 artist Bill 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 testament on that dry-erase board.
“I wasn’t sure what the outcome was going to be,” Vaughn said. “I had written out everything I wanted each one of my children to have.”
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 as night sweats, so it’s almost like where my 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 degrees — but 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. Managing her 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 see
ms 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 is something that you do not want. You definitely don’t want it.”
COVID-19 damages more than lungs
For people who survive COVID-19 hospitalization, Chopra said “the physical toll this takes on you is profound.”
He has seen it in the patients he has treated at Michigan Medicine, and he has 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 weak and 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 barely get 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 affects more than the lungs.
“This COVID fog that patients describe where they have trouble with memory, trouble recollecting events — and it’s not just around the time they were in the hospital with COVID — it’s remote memories, almost like a 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 deconditioning that’s important to keep in mind. The other thing that I 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 with the monoclonal antibodies now, too.”
Family gatherings lead to infection
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 feet apart, 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.
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 became uncharacteristically tired, and achy. And by the Fourth of July, she had a fever. She began to cough and had difficulty breathing.
A few days after that, she said, “I couldn’t function at 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 a spasm.
“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 on July 9. Lewellen had none of the major risk factors that experts warn would 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 it felt physically. I will never forget how it felt emotionally. I will never forget sobbing while my 3-year-old tried to climb on my lap and asked me to read him a story, and I couldn’t even do that.”
She was on steroids and blood thinners in the hospital and slowly began to improve. Lewellen was well enough to go home July 13. Her mother had a more severe case of the virus, was hospitalized longer and also now suffers some of the long-hauler aftereffects 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 midsummer, when Michigan’s coronavirus case counts had bottomed out, and fewer people were being treated in hospitals for it. Lewellen sometimes wonders whether her mom would have survived if they’d have contracted the virus during the March surge, when metro Detroit’s health care systems were in crisis.
“I don’t know if my mom’s outcome would have been different just 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.’ Like yeah, you might be fine, but somebody that you love might not be fine. And that’s guilt that no one … could live with.”
The virus took a toll on Lewellen, too.
< p class="gnt_ar_b_p">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 point that 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 still losing her hair and has brain fog from time to time. She’s concerned 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 about the 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 become my preexisting condition.”
Post-COVID-19 care must improve
Although the last year has led to much new understanding about this novel coronavirus, so much remains 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 obesity are really at risk leads 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 pregnancy went 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 seem to be that sick, I don’t think that makes it OK. … Nobody should be having this virus, if possible. And so surviving and just not dying really is not good enough.”
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’s gut-wrenching in 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 see specialized post-COVID care clinics where physicians would do full assessments, and target patient care to what they people most need. Those who’ve had blood clots from COVID-19, for example, would be assessed to be sure they’re on the right anti-coagulants. Patients who have memory deficits would get follow-up to be sure they aren’t living alone and have help to keep them safe.
“All of that takes resources,” he said. “It takes planning. It takes sort of a focused eye on care beyond the hospital. … We certainly need to think about structural aspects to better care for these patients with COVID after discharge. .. I think this has been one of our most shortsighted aspects of caring for people with COVID is that we haven’t thought about life beyond the hospital. And we really need to do that. Now.”
Even though there’s an urgent need, Chopra acknowledged that the latest surge in cases and hospitalizations could force delays.
“When you look at what’s happening right now with hospitals across the state, across the country, where they’re back in crisis mode, caring for these intensely sick patients right now who have active infections, it makes it even more challenging to do the kind of care that folks who have supposedly recovered from the virus still need,” he said.
‘… Another old man with the COVID’
Craige Doyle, 68, is a retired engineer who worked for General Motors for 40 years. In late March, he said he thought he might have the flu.
He had body aches and fever. Uncontrollable shakes followed, and Doyle who lives in Warren with his wife, Karen, was sick enough on March 25 to go to a nearby hospital.
“They turned me away … because my blood-oxygen level was good,” he said. “They filled me up with fluid because I was pretty dehydrated, and sent me home.”
But there was a strange odor that permeated his nose, and he couldn’t escape it.
“It’s was kind of a sweet death smell,” Doyle said. “Like something that’s about ready to decay but it’s got a sweetness about it. … It was nauseating, and I couldn’t get away from it. You know, I would brush my teeth. I would shower, everything else, and I couldn’t get away from that smell.”
And then, suddenly, it was gone. Doyle said he hasn’t smelled anything else — except for hints of the telltale aroma from a skunk that had sprayed the neighborhood — since then. Food lost its appeal as his sense of taste disappeared, too.
Time passed, but Doyle’s symptoms didn’t go away. He said for a period of a few days, he couldn’t feel his feet.
“It was really weird,” he said. “It was like they were two dead weights on the ends of my legs.”
Twice more, Doyle said he went to metro Detroit hospitals on the advice of his doctor, who told him, “If this thing gets away from you, things will happen fast,” but he was never admitted.
“They tossed me out,” Doyle said, “which was was pretty bizarre. I mean, it was like a nightmare, the whole thing. … People look at you say, ‘Oh, there’s another old man with the COVID,’ you know? You can see it in their eyes.
“There was a few days there that I didn’t know if I was going to make it or not.”
By mid-May, Doyle said, the worst of it had passed. But even all these months later, he still hasn’t fully healed.
“I’m still tired a lot. I don’t have the energy,” he said. “… My heart arrhythmia got a little bit worse and my cardiologist had to up my medication for my arrhythmia, but it’s under control right now.”
And even though he’s tired, Doyle says he’s got insomnia. Some nights, “I’m up and stirring at 3:30 in the morning,” he said, and “there was a time when I was only getting like three hours sleep.”
He lost about 25 pounds through the ordeal and has gained some of it back. But Doyle is still about 10 pounds lighter than he was when he contracted the virus. Without the ability to taste or smell, food isn’t all that appealing. He still gets cravings, and he tries to eat the food he craves and remember what it tasted like.
“I can tell the difference in in the texture … but I really can’t taste it.”
The coronavirus is not a hoax, he said.
“A lot of people wouldn’t believe what you’re telling them because it sounds pretty bizarre, right?” he said, “but when you have it, you know you’ve got it.”
Contact Kristen Jordan Shamus: [email protected]. Follow her on Twitter @kristenshamus.
Detroit Free Press, Bridge Michigan and Michigan Radio have teamed up to report on Michigan hospitals during the coronavirus pandemic. If you work in a Michigan hospital, we would love to hear from you. You can contact Kristen Jordan Shamus at [email protected], Robin Erb at [email protected] or Kate Wells at [email protected].
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