Some days are hell – nj.com

Skent

The nurse stared in the rearview mirror and tried to make peace with her life.

Margaret Fleming-Keane thought she was getting better, six months into this nightmare.

But the fatigue had washed over her once again, falling like an endless black curtain during her shift. As she studied her reflection in the car, she noticed she could see through her once thick, blond hair.

Then her voice dropped, as if making a confession.

“I only worked four hours today,” Fleming-Keane told NJ Advance Media just after work last month at Hackensack University Medical Center. “I’m exhausted. I am going home. And I’m — I know I’ll fall right asleep.”

Magie is a COVID-19 long-hauler. And this is what a “not so good day” looks like.

On bad days, she can’t even get out of bed.

“I felt like I was getting better,” she said, sitting in her white BMW X5 and mourning the vibrant life she once led. “I felt like I was moving in the right direction, which I still think overall I am.”

But she never knows when another bad day is coming.

Magie, 63, is among the cursed patients who contracted the coronavirus and never recovered. Long-haulers are haunted by an array of vague and mysterious symptoms long after the acute infection has passed, leaving them with debilitating fatigue, foggy thinking and a host of other infernal symptoms.

Their cases continue to baffle experts, who do not know the exact cause of the syndrome or have proven treatments to offer.

As new coronavirus cases and hospitalizations plummet in New Jersey and 3.5 million adults have been fully vaccinated, many long-haulers feel even further left behind. They’re desperate to reclaim their lives as the rest of the state reopens.

Magie shared her struggles with NJ Advance Media in a series of interviews and meetings over the past month, describing the good days, the bad days and the hope that eventually the COVID-19 pandemic will end for her too.

She suffers from crushing fatigue. Shortness of breath. A rapid heartbeat. Body aches. The loss of her ability to smell and taste. And occasional hair loss.

Magie fondly remembers making her bed without getting tired. Walking across a room without her heart racing. Tasting her morning coffee and smelling the roses her devoted husband gives her.

“These are all things that we take for granted,” the New Milford resident said with earnestness in her voice.

The advanced practice nurse has taken nothing for granted since Nov. 6, when she tested positive for the coronavirus after being infected on the job.

Margaret Fleming-Keane in Alaska in 2015. She used to travel the world. But after contracting COVID-19 in November 2020, she became what is known as a long-hauler, someone who has never fully recovered from the coronavirus.  Courtesy of Margaret Fleming-Keane

She lives in a viral purgatory. The mysteries of long-hauler syndrome — also known as long COVID or acute post-COVID syndrome — are nearly as vexing as the symptoms that have lingered for months.

A growing number of studies suggest inflammation caused by the virus is triggering an overly aggressive immune response in sufferers. But doctors don’t know why.

“We don’t understand it completely,” said Dr. Laurie Jacobs, chair of the department of internal medicine at Hackensack University Medical Center and head of the health system’s COVID-19 Recovery Center.

Magie knows she’s not the same person who was always on her feet, traveling and working marathon shifts at the hospital. Her body reminds her of that nearly every day.

“It’s definitely different than the sister I had,” said Patricia Murphy, Magie’s sibling. “But we’re all being optimistic and hoping for a full recovery, even though with COVID you’re not sure. There’s so many unknowns.”

The coronavirus changed most aspects of Magie’s existence, from how she eats to what she wears to how she works.

Before the pandemic, she hiked, traveled and made time for friends. Now, she works only 20 hours a week. Taking a walk feels like running a marathon. She doesn’t get the same pleasure out of food. And she turns down invites from friends, because she doesn’t want to be a burden when she inevitably wears out.

“Prior to this, I used to exercise, work out on a regular basis,” said Magie, the mother of a 27-year-old daughter. “I no longer do that. I mean, the socialization, the meeting friends, the travel — these are things that I really and truly love doing.”

She now struggles just taking off her shoes.

Magie, blessed with a sharp sense of humor and a smile that makes her look younger than her years, recently wore black leather boots with a silver zipper running down the side. The boots were stylish. But the zipper is why she wore them, allowing her to slip them on and off without her husband’s help.

Magie resents having to do it. Just like she resents every nap she needs to get through the day. Every invite she has to decline. Every meal she can’t taste.

And every other piece of her life the coronavirus has stolen.

Margaret Fleming-Keane, an advanced practice nurse at Hackensack University Medical Center, leaves an exam room after meeting with a patient.  Patti Sapone | NJ Advance Media

A life of limitations

The virus found her at work.

It somehow slipped through Magie’s mask and other precautions as she handled employee-related injuries and illnesses at the hospital. She developed a low-grade fever, chills, general malaise and body aches.

“It kind of felt like a bad flu,” she said.

Magie was hospitalized for four days as the second wave of the pandemic roared. But she thought she was lucky. She received convalescent plasma and an antiviral infusion and overcame the initial infection.

But many of her symptoms have never gone away.

In the first weeks after catching COVID-19, she felt like a different person — anxious and indecisive.

“I was just afraid of everything,” Magie said. “And I didn’t really want to talk to anyone. People would call me, and I didn’t want to talk to them. I didn’t know if I was getting depressed. …

“I remember the first time I drove, I had to drive to an appointment, and I was really — I was frightened. People were beeping at me.”

Magie also felt fuzzy — a commonly reported symptom among long-haulers known as brain fog. There were times early on when she would lose her train of thought or forget why she went downstairs.

She implemented strategies that have helped.

“I do jigsaw puzzles. I do crossword puzzles. I do all sorts of word games — Sudoku, and all of those, and push myself to get at the expert level,” she said, chuckling.

Her lowest moment came early on. She realized her life had changed, replaced by an existence filled with complications, limitations and strategies just to get through the day.

There’s before COVID. And there’s now. There is no after — at least, not yet.

Murphy has seen her sister weighed down since she got sick. Magie is often exhausted. Out of breath. Unable to walk just a few blocks when out on the town.

“Even weekends she would work the ER,” Murphy said, “she was always on her feet, very active… She was always traveling the world, and now she can’t even go to the grocery store, or even walking down the hall in her house, (it) just takes her breath away.”

There has been an emotional toll as well. She’s missing out on things in her normally rich life. Magie wasn’t even sure she would attend a Mother’s Day gathering today with her sister in Chester.

“She’s not sure that she wants to come out because of the drive and just, you know, things like that,” Murphy said.

Magie oscillates between hope and frustration, optimism and exhaustion.

Most days, she maintains a tough façade. She’s genuinely grateful she doesn’t have a case as bad as some long-haulers, who have been driven to suicide by tortuous symptoms. And as an independent woman who has spent her life caring for others, she loathes to be a complainer.

Magie recently sat on a small, wooden bench in a courtyard at Hackensack University Medical Center, soaking up a warm spring day.

She was smiling and laughing. On good days, she feels like her old self, wielding her sense of humor to take the rough edges off her illness. But she sometimes overexerts herself, forgetting she now has limits.

Her heart rate spiked just walking across a parking lot and up a small hill to the bench. Simply bending over sets her pulse racing.

“If I wash dishes, (if) I make my bed, if I walk from the parking garage to my office — my heart rate goes up,” Magie said. “And when that happens, I get very fatigued at the same time.”

And when she overdoes it, the bad days come. She attended a CPR class recently and was “useless” the next day.

“I just — I couldn’t do anything,” Magie said. “I had — it was a bad day. I’ll just call it a bad day. It was just — I couldn’t do anything. Nothing.”

She is part of a study at Hackensack Meridian Health’s COVID Recovery Center, trying to find answers. The hospital system opened the center in July, investigating cases that linger at least two months after patients contracted the virus.

“They’re all probably linked by some underlying cause,” Jacobs said. “And thus far, that isn’t well understood.”

Margaret Fleming-Keane riding a camel on a trip to Morocco in 2018.  Courtesy of Margaret Fleming-Keane

‘You won’t understand’

Magie didn’t understand, not then. Not yet.

The mysterious symptoms didn’t make sense. Magie listened as a colleague described a series of debilitating ailments in the spring of 2020, at the beginning of the COVID-19 pandemic in New Jersey.

Her fellow nurse had contracted the coronavirus and recovered from her acute infection. But she still did not feel better.

And her frustration was boiling over.

“You won’t understand this because you haven’t had it,” the nurse told her.

A year later, Magie understands all too well. The daily frustration. Feeling misunderstood. Not knowing what is wrong or when she will make a full recovery.

Magie understands it now, sitting where that nurse once did.

She never had heart issues before COVID-19. But she recently took an EKG reading on her smartwatch. She was confused. It showed atrial fibrillation, an irregular heartbeat that increases the risk of stroke and heart disease.

Magie thought the reading must be wrong, so she repeated it.

“And it still showed AFib,” she said, “so my husband called an ambulance. They brought me into Hackensack emergency department, where my own diagnosis was confirmed.”

She’s on a blood thinner for the first time in her life.

As a health care worker, Magie reads all the medical literature published on long-haulers. But “the research changes all the time,” she said.

“If I look at something that I read in November, that may have changed,” she said. “There could be another research study done in April that will negate that one.”

As many as 10% to 30% of people infected with the coronavirus experience some long-term symptoms, according to a National Institutes of Health workshop in December. With nearly 33 million cases of COVID-19 in the U.S. and 157 million worldwide, the global impact could be staggering.

Experts do not know why some develop persistent issues and others do not. They don’t know if they’re caused by undetected levels of the virus in the body or an immune system malfunction.

The NIH will spend more than $1.1 billion over four years to study long COVID, it announced in February.

Hackensack Meridian Health’s recovery center is trying an array of treatments, including medications and physical therapy, Jacobs says. As new findings emerge, it offers emerging trials and therapies.

But each patient’s story is different.

They present unique experiences and different symptoms. Those symptoms can change from one day to the next, disappear, reappear or be replaced by completely new ailments. Some patients have even reported that they improved after receiving the coronavirus vaccine. Magie, who is fully vaccinated, was not one of them.

The seemingly random nature of long-hauler syndrome makes the enigma even more difficult to crack. The list of recognized symptoms is as long as it is frightening.

“The shortness of breath on exertion and fatigue are the primary symptoms,” said Dr. Jonathan Shammash, an internal medicine specialist at the recovery center.

But there is hope.

Magie has improved since her symptoms first arose, although not as much as she had hoped. She always feels better in the mornings than in afternoons and evenings, when she’s usually wiped. She often needs help from her husband, who chose not to participate in this story.

Toward the end of our chat in the hospital courtyard, Magie’s husband called. He was checking up on her.

“Honey, I’m gonna call you back in about 10 minutes, OK? Bye,” she said and hung up.

Then she smiled. She’s grateful for him.

“I mean, I was married 35 years this (April),” she said, smiling playfully, “and you sort of take your partner, spouse, whatever, for granted. And it just made me realize what a good man he is.”

He bought her flowers the other day. But even this tender moment was ruined by long-hauler syndrome.

“They just didn’t smell like how they should smell,” Magie said. “I didn’t tell him that.

“I told him they were beautiful.”

Margaret Fleming-Keane has improved, but still suffers from long COVID. Courtesy of Margaret Fleming-Keane

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Spencer Kent may be reached at skent@njadvancemedia.com.


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