A Long, Dark Road

Susan Taylor knows she’s one of the lucky ones. She feels blessed to have survived COVID-19, but she also acknowledges that the ordeal is far from over.

She’s back at home after long weeks on a COVID-19 ward at Bon Secours St. Mary’s Hospital, followed by inpatient rehabilitation services at Encompass Health Rehabilitation Hospital of Richmond, but the Glen Allen resident has yet to regain full health.

“I have foggy moments like you wouldn’t believe,” she says by phone in early September, almost five months after she contracted the virus. She’s back at work as volunteer coordinator with AT Home Care & Hospice, but only part time. Her stamina is awful, she says: Sometimes she’s in bed at 7:30 p.m., but her sleep patterns are erratic, and at times she’s up half the night.  

“I attribute it all to my COVID,” she says.

Taylor is not alone in coping with COVID-19 months after she was first infected. Such patients are being described as long-haulers. Beyond these individual patients, the virus is taking a toll on their families, society and the economy. As the pandemic approaches a year since its onset, COVID-19’s long-term impacts and implications are only now coming into focus.

RECOVERY AND REHAB

As Taylor discovered, the course of the disease for the profoundly ill can be measured in weeks, and it can extend onward for months, maybe years for the especially unfortunate. Some may spend multiple weeks in an intensive care unit, followed by days on a regular ward. Months of hospitalization leave patients weak and debilitated and in need of rehabilitation services, including speech and physical therapy. Many recover at home, but some need inpatient rehab, followed by outpatient care.

Therapies begin while patients are at the height of their battles with COVID-19, helping to allay breathing difficulties, says Dr. Jessica Hupe, medical director of multispecialty rehabilitation at the Sheltering Arms Institute and associate program director for physical medicine and rehabilitation residency at VCU School of Medicine. She is also an assistant professor in physical medicine and rehabilitation at the medical school.

Later, COVID-19 patients need help to regain lost bodily functions and to cope with damages caused by the infection, Hupe says. About half of patients who were in intensive care units need inpatient rehabilitation to deal with issues such as peripheral muscle weakness and posture disorders, in addition to help coping with cognitive and mental health issues.

After discharge, many may need continued therapies, possibly on a long-term basis. “By no means is their fight over,” Hupe says. “Some of these things can affect patients years down the road. It can take some time for them to fully recover, if ever.”

A novel virus necessitates creative treatments: Facilities have had to craft care plans and procedures as they go in “an evolving field we’re trying to make,” says Jason Seltzer, a physical therapist with Sheltering Arms.

People with severe COVID-19 infections who have spent weeks in induced comas on ventilators and in intensive care units may have even longer roads back to full health. They may experience post-intensive-care syndrome, which can impair thinking, emotions and various bodily functions.

The Society of Critical Care Medicine reports that muscle weakness occurs in half of people who have been in intensive care for at least a week and in a third of people who have been placed on ventilators. In people with post-intensive-care syndrome, about 40% have returned to full health after two years, and 66% are fully recovered after five years, according to Seltzer.

Some may experience weakness and cognitive decline comparable to Alzheimer’s disease. Even some people whose COVID-19 symptoms were not severe enough to require hospitalization and who stayed at home are showing syndrome-like symptoms, Seltzer says. They may experience stress and mental health issues even after recovery.

SYSTEM OVERLOAD

As of mid September, nearly 200,000 deaths were attributed to COVID-19 in the United States, including more than 2,700 in Virginia. The toll is likely much higher and is an undercount, says Dr. Steven Woolf, director emeritus of the Center on Society and Health at Virginia Commonwealth University.

Woolf coauthored a study in August in the Journal of the American Medical Association that looked at excess deaths at the beginning of the pandemic, in March and April. Excess deaths are lives lost beyond what would be expected during a particular time period in an average, pre-pandemic year.  

A follow-up look at COVID-19-related deaths from March through July is set for publication in JAMA in October. That data shows a continued undercount of virus-related fatalities, Woolf says. In Virginia, the coronavirus accounts for about half of the excess deaths from March through July, compared with about 35% nationally.

“There will be more delayed mortality effects that will start to appear in the months and years to follow,” he says. In addition to deaths directly attributed to COVID-19, the pandemic affects the numbers in several other ways: People who may be having a heart attack or stroke may not seek help immediately out of fear of COVID-19, cancer patients may postpone chemotherapy, women may put off having a mammogram. Stress and isolation may exacerbate mental health complications and may lead to suicides and drug overdose fatalities.

THE LONG VIEW

Overall life expectancy has been trending downward in the United States for several years, and the pandemic may send it further downward. Woolf notes that since the 1980s, the life expectancy rate of Americans has lagged behind the rate in other developed countries and declined from 2014 through 2017, according to reports from November 2019.

Woolf says the initial thinking was that the pandemic would have similar impacts across the developed world in terms of mortality and affecting life expectancy rates, but he says that the “horrible mismanagement of the pandemic” in the United States likely will cause a further drop in life expectancy that’s “going to put the U.S. back even further.”

The pandemic may have one positive aspect: bringing focus to the problems facing the nation in fixing its health care system and addressing health inequities. What were once abstract issues affecting strangers have been brought home, says Woolf. Flaws have become evident in the American way of health care, a hodgepodge of federal, state and private insurance and health care bureaucracies, he says.

“We’re seeing on display the inefficiency of our model,” Woolf says. “I hold out hope that some good can come out of this, to jolt the American public into some awareness of what it needs to do.”  

RECOVERY ROAD

Taylor, the recovering COVID-19 patient, thinks she may have been exposed to the coronavirus in early April when she was at a rehab facility where, she says, another patient spiked a high fever and then tested positive for the virus.

By mid-April, she was set for a surgery to repair an incision that had reopened on her leg from a previous surgery in March. She felt fine when she checked in, but soon after, her temperature and blood pressure spiked, and she tested positive for the coronavirus. She was admitted to the COVID-19 ward at St. Mary’s Hospital for about three weeks.  

She was placed on oxygen and was so sick that doctors discussed a ventilator with her family, but she was able to continue to breathe sufficiently without the device. She continued to need oxygen post-discharge, though, until she was weaned off during rehab.

She was also still dealing with the aftermath of the March leg surgery and required inpatient rehab services at Encompass Health Rehabilitation Hospital of Richmond, where she received therapies for her breathing and for her leg (she couldn’t bear weight on it for four months).

The virus has strengthened her spiritual life, but she says it taxes you in every way — physically, mentally, spiritually and emotionally.

“I don’t consider myself recovered,” she says. “I feel like this is going to be a long journey. Any bit of improvement is a miracle. I appreciate and I’m grateful for any little bit of improvement that I may get.”

Life on Hold

Months after contracting COVID-19, a mother battles fatigue and weakness

As a healthy 30-year-old with a business, Hawkeye Signs and Racing Graphics in Richmond, a husband who is a partner in both business and life, and two young children, Corrine Townsend was enjoying her life.

But in June, the New Kent resident contracted COVID-19. She was young and otherwise healthy, without any chronic conditions, and statistically she was at little risk for complications. But her bout with the coronavirus didn’t follow the script, and she ended up on a ventilator at VCU Medical Center for a week.

“COVID is impacting everyone so differently,” she says.

Townsend was released from in-patient rehabilitation care on Aug. 21, recuperating sufficiently to resume her her day-to-day life, but she’s still far from her pre-COVID-19 capabilities. She’s lost strength, and the virus attacked her lungs. It’s still harder for her to breathe, and her oxygen levels dip when she stands or tries to walk. She’s still rehabbing and working to walk farther on her own, but “stamina is not there anymore,” she says. “It just tires me out so bad.”

Townsend says the virus first kicked in on June 8, while she was playing with her 1-year-old and 3-year old. “I felt exhausted,” she says, and Townsend remembers thinking, “Why do I feel like they weigh 1,000 pounds?” She developed a cough, then a gag, and she couldn’t catch her breath. That night, she tried to make her way to the bathroom and passed out. Her husband heard her as she hit the floor. Her eyes were rolled back into her head.

She was taken to Henrico Doctors’ Hospital and later to VCU Medical Center. Her blood oxygen saturation reading when she was first hospitalized was 84%, which is low. Over the course of her treatment, it dipped into the upper 70s, which is life-threatening.

The virus raged inside her. Her breathing was so compromised, she needed a ventilator. Her heart stopped, a lung collapsed. Tests revealed so much acid in her blood from the coronavirus that doctors didn’t know how she could stay alive. A trach tube was inserted, and she was on a ventilator for a week.

Eventually, Townsend was weaned off it, and “my lungs were able to hold their own,” she says. After two weeks in the ICU, she was moved to a general ward.

Pandemic protocols preclude visitors. Virtual visits were traumatic; her 3-year-old knew Mommy was sick and was “freaked out” by the various tubes plugged into her body, Townsend says.  “The scariest part is that you’re alone.”

She lost 30 pounds and is battling to regain stamina and strength. “You don’t realize how fast you lose things,” she says.

She says she has few memories of what happened while she was hospitalized, but that she’s had nightmares since leaving the ventilator. She says she also has dealt with brain fog.

They may be virus-free, but many people post-COVID-19 experience a mental fog that makes it hard to deal with everyday life. Fuzzy thinking and a lack of mental acuity may impair many people’s ability to return to work.

“It’s really hard for them to sit in front of a computer for a prolonged time,” says Jason Seltzer, a physical therapist with Sheltering Arms.

For Townsend, rehab began in the hospital with virtual sessions, then she spent 10 days at Sheltering Arms. Through early September, the rehabilitation center provided post-COVID-19 rehab for 21 patients.

Physical therapy and occupational therapy helped Townsend regain her range of motion to cope with everyday life, and therapists worked with her on lifting weights to rebuild body strength. She’s improved, she says, but more needs to be done.

On the verge of her discharge from Sheltering Arms, she was glad to be headed home and was optimistic about her outlook. “I feel good,” she says. “This is the first time I felt like myself in a long time.”

She’s thankful to have survived and hopes her experience serves as a cautionary tale. She’s also concerned about contracting COVID-19 a second time. Before, she was healthy, with no preexisting conditions. Now she has weak, scarred lungs.

Where Townsend contracted the virus is a mystery, but her husband, Hayden, and all the workers in their business also tested positive for COVID-19. They had to shut down for a while as they quarantined and did a deep clean. She was the only one to develop severe symptoms; the others were asymptomatic.

“That’s been the scariest,” Townsend says. “You can have it and have no idea, and get it, and don’t know how.”

Coming Home

COVID-19 rehabilitation therapy helps a Navy veteran retain his independence

Respiratory symptoms are the most common indication of a COVID-19 infection, so 73-year-old Frank Riebschlager thought he was dealing with a stomach bug when he became sick in March. He was contending with severe diarrhea, a condition that wasn’t added to the list of common COVID-19 infection symptoms by the U.S. Centers for Disease Control and Prevention until weeks later, in late June.

“Fortunately for me, it was bad, but not as bad as for most people,” he says.

Riebschlager is unsure where he may have been exposed to the virus. He masks up on his rare excursions, even now after his recovery, as does his sister Marilyn and her husband, Joel.

He’s on his own and cares for himself at an apartment in Blackstone. Marilyn and Joel live nearby. Joel went to check on him a couple days into his illness. He looked at him and saw that it seemed to be more than a mere stomach bug. Riebschlager was so debilitated and drained that he couldn’t walk.

They called an ambulance, which took him to Centra Southside Community Hospital in Farmville, where he tested positive for COVID-19. Riebschlager has chronic conditions that are often associated with a more severe response to the virus: high blood pressure, kidney issues and Type 2 diabetes.

The physicians and family were puzzled about what was wrong.

It was the early days in the pandemic, and reports showed cases and deaths soaring. Riebschlager was scared. The first couple of days, he says, he worried that he was going to die, that he would never again see his surviving family, including Marilyn and a brother who lives in New Jersey. “I lost a lot of people in my lifetime, I didn’t want to lose any more,” he says.

He was weak and dehydrated, too weak to get out of bed. “I was so dehydrated, it was pathetic,” he says. Other symptoms ensued. He developed pneumonia, but not severe enough to need a ventilator. His feet became swollen, so much so that it was too painful to put them on the floor.

He never gave up: “All I know is that I wanted to get better and get out [of the hospital],” he says.

His symptoms slowly subsided. He was treated at Centra Southside and then transferred to Encompass Health Rehabilitation Hospital in Richmond, where he received physical therapy and other rehabilitation services that allowed him to go back home.

“I lost a lot of people in my lifetime, I didn’t want to lose any more.” —Frank Riebschlager

Many people who have been hospitalized for severe COVID-19 need an intermediate step in their care before they can safely go home, says Vivian White, CEO of Encompass.

The hospital dedicated a unit to working with COVID-19 patients early in the pandemic. The treatment is function-focused, says Adam Litvin, chief nursing officer for Encompass. “[Patients] come to our facility with the mission of going home and resuming their lives,” he says.

As of early September, Encompass continues to work with people recovering from COVID-19, dealing with its aftermath of cardiac, pulmonary and neurologic conditions, White says.

The staff works with the mindset that everyone they encounter may have the virus and that everyone is at risk, unless proven otherwise. Precautions include testing all patients for the virus as they enter and keeping them in a “mini quarantine” until results come back negative. Some patients had no symptoms and didn’t know that they had COVID-19 until they tested positive.

It’s a virus like no other, White notes, and it leaves some people with impairments similar to those experienced after a stroke. Encompass staff has had to work with patients on basics: how to swallow food, regaining balance and walking, making word connections and cognition.

“I don’t think you can underestimate the effects,” White says.

Riebschlager is pleased with his progress and says he is blessed to have family nearby. His sister says that her older brother is now reluctant to go to other medical appointments, but that she encourages and reassures him and gets him to go.

“I was very lucky to have people to care about me,” he says.

Riebschlager can take care of his basic needs on his own, from personal grooming to light housework. He’s mobile, thanks to a walker with a built-in seat that allows him to rest as needed. “It’s like my friend,” he says, smiling.

Marshaling Resources

A Glen Allen resident draws on his jiujitsu training and a team of health professionals in his recovery from COVID-19

The first wave of the coronavirus pandemic was beginning to creep upward in March when Cherud Wilkerson fell ill.

For a week, the Glen Allen resident’s temperature spiked at 103 degrees. He went to an ER, but he was otherwise asymptomatic and was told to go back home. By the seventh day, he took a turn for the worse. He developed a cough and told his wife that he couldn’t breathe. She told him that he was either going to the hospital or the undertaker.

He went to Bon Secours St. Mary’s Hospital. As he was getting out of the car, his wife, Natacha Kinsey-Wilkerson, told him, “You better not,” leaving it unsaid but understood as to what he better not do.

The last thing Wilkerson remembers of his early days in the hospital was nurses telling him they would have to intubate him. He was placed on a ventilator. The treatment team induced a coma.

Wilkerson, compliance risk management director for Citizens Bank, says he had always enjoyed good health. A Navy veteran and a black belt in jiujitsu, he says his only chronic conditions include mild kidney disease and “a little” hypertension.

COVID-19 escalated its assault on his body. Respiratory struggles were compounded by COVID-19-caused kidney failure that led to Wilkerson being placed on dialysis. His pancreas malfunctioned, and he aspirated fluid, resulting in pneumonia.

He was on a ventilator for two weeks and later learned that his wife was afraid to answer the phone during his ICU stay. “It was touch-and-go,” he says.  

But he improved. It took several days to wean him from the coma medications. He was one of the first COVID-19 patients at St. Mary’s to come off the ventilator alive. Staff, he says, called him a miracle.

Strange, vivid visions and thoughts had engulfed him during the coma — and afterward. At one time, he thought there was a half-man/half-beast as big as a mountain that he was chasing, with an angel over Wilkerson, who felt as if he had one foot in heaven, another on earth. The beast was running away with Wilkerson’s destiny in its grasp, but with help from the heavenly power, it failed.  

Wilkerson wanted out of the hospital and to go back to his wife and 5-year-old daughter, Natalie. “I wasn’t going to a nursing home,” he says. “I thought that would be the end of me.”

It feels as if I “lived my funeral and basically woke up from the dead.” —Cherud Wilkerson

Still on dialysis, he got up and moved, requiring a walker initially. Wilkerson pushed himself to get better. “Every night after [rehab staff] left me, I would work out,” he says.

One day, the physical therapist challenged him to pick up a glove from the floor. He easily bent down on one knee and retrieved the glove. The therapist deemed him ready for discharge.

At home, Wilkerson continued to strengthen his body and speed his recovery. A physical therapist visited him once at home, and Wilkerson showed that he could navigate the 16 steps of his residence, and that was the end of the rehab therapy.

The disease dropped Wilkerson’s weight from 218 to 175 pounds. It also apparently lingered: He was still testing positive for COVID-19 for two months following his diagnosis, though he was symptom-free. It eventually cleared. His wife also developed COVID-19 but had a mild encounter, and their daughter has remained virus-free.

He’s thankful for the care he received from the St. Mary’s staff, and especially for his wife. A New Jersey native, he has no family locally, and without his wife, there would have been no one around to care for their daughter during his hospital stay.

Physically, he’s still working to regain full health. The ICU time, the coma and the toll taken by the disease are traumatic, and Wilkerson says that lingers: “I have some good days and some bad days,” he says.  

The whole experience has been moving, emotional: You can’t see family, there’s no opportunity to say goodbye. “I did break down,” he says, adding that it feels as if he “lived my funeral and basically woke up from the dead.” As he talks about his experience on a rainy day in early August, he notes that he’s got his weight back up to 198 pounds. He’s still exercising and working on running, though he gets winded. “I’m feeling really good,” he says. “I’m thankful, and I’m blessed.”

But he also wants people to take precautions in dealing with COVID-19. “It’s no joke,” he says. “We have to pay attention.”