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Jan 31

For COVID long-haulers, ‘recovery’ is just the start of chronic complications – The Providence Journal

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G. Wayne Miller|The Providence Journal

CRANSTON When Deb Crabtree contracted COVID-19 in November, she experienced several of the telltale afflictions of coronavirus disease: shortness of breath, nausea, dizziness, headaches and what she describes as vague confusion a feeling of being foggy.

Crabtree, 60, a registered nurse, did not require hospitalization, but she did miss several weeks of work. She returned at the end of December. Her symptoms had cleared.

All but the headaches.

She was not prone to them before, but now they are with her daily. And that places her among the so-called long haulers people who have recovered from the acute phase of the disease, but who for weeks or months afterward continue to have symptoms.

Known as long COVID-19or post-COVID-19 syndrome, its persistent symptoms includejoint, chest and muscle pain; depression; intermittent fever; fast-beating hearts; chronic and sometimes debilitating fatigue; difficulty concentrating or thinking, or brain fog; and headaches. Individuals may experience more than one of these maladies. Cardiovascular, lung, kidney, skin and sensory abnormalities also have been reported.

Employed by Bayada Home Health Care, Crabtree specializes in the care of special-needs children and adolescents. She had finished a shift and was driving home on Nov. 11 when her symptoms began.

I started to get this really bad headache, a banging and banging headache, all in the back of my neck, and a little bit of a sore throat, she recalled. I couldn't turn my head left or right without it hurting even more.

Soon, Crabtrees heart began to race and she was short of breath. She tested positive for COVID-19, and during a long period of self-quarantine during which family, friends and her company kept in touch, she said, I was sick as a dog. Very, very sick to my stomach. Her energy depleted, Crabtree subsisted on ginger ale and crackers as she waited to recover.

My motto was, One day at a time, slow and steady wins the race, she said.

deb_crabtree_video_final_cut

Deb Crabtree contracted COVID-19 in November. Today, she still suffers from headaches, placing her in category of long haulers

G. Wayne Miller, The Providence Journal

For long-haulers, the race is a marathon with no certain finish line. Reports of post-COVID-19 syndrome began to surface early in the pandemic, and while studies are underway, it is too soon for scientists to fully understand the physiological mechanisms that are involved, let alone predict an individuals course when and indeed whether normalcy will return.

The syndrome, like the disease itself, remains in its infancy. Unknowns abound.

One is the number of people who suffer from one or more of the symptoms associated with long COVID-19, a calculation made yet more difficult given the fact that health-care providers treating patients may not identify difficulties as coronavirus-related. Chronic fatigue, for example, may have many causes.

Nonetheless, early surveys have provided insight into severity and prevalence.A paper published in late December by the organization Patient Led Research for COVID-19 which is headed by science, public-policy, data and other researchers who contracted the disease showed that of the nearly 4,000 surveyed long-haul respondents from 56 countries, 96% had symptoms lasting longer than 90 days.

Patients with Long COVID report prolonged multisystem involvement and significant disability. Most had not returned to previous levels of work by 6 months. Many patients are not recovered by 7 months, and continue to experience significant symptom burden, concluded the paper, Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact, posted on the pre-print servermedRxiv, where researchers often present work for subsequent peer-reviewed publication.

Another study conducted by Kings College London researchers found that 10% of patients continued to experience symptoms after one month, with 1.5% to 2% still having them three months after the acute phase. Women were twice as likely as men to have long COVID-19and the median age was 45, according to the study.

Using the low 1.5% figure, a calculation can be made that nearly 400,000 of the 25.8million Americans who have contracted the disease as of Friday will have persistent symptoms at three months. That same calculation suggests that more than 1,700 Rhode Islanders belong to the three-month long-hauler category as of Friday; using the higher 2% figure, nearly 2,300 Rhode Islanders would be affected. The state Health Department told The Journal in an email that it does not have any numbers.

Dr. Rebecca Brown does not need hard numbers to confirm the prevalence and severity of post-COVID-19 syndrome. As the associate director of Roger Williams Medical Centers division of geriatric and palliative medicine, she has borne witness to it for months with the surviving elderly patients she and the hospital staff treat.

Some experience the fatigue, shortness of breath, mood issues and other lingering symptoms that younger people report. And some, Brown said, emerge from the acute phase having lost their appetites.

You pull them through COVID, get them off oxygen and breathing again, she said. You probably can get them walking again. But if you have somebody who has memory impairment and food doesn't taste like food anymore it's just cardboard in their mouth theyre not going to eat as much as they need to and they lose a lot of weight.

That can precipitate a cascade of negative effects, Brown said. Doses of medications to manage blood pressure, diabetes and other conditions that have worked for years could, with weight loss, suddenly become overdoses.

So with my post-COVID patients I'm following them super carefully and cutting everything way back. Because if you don't watch them really carefully, they could fall and break a hip because their blood pressures are too low or their sugars are too low. Even if you do pull back, their brains are just different. They can't think the way they did and they can't walk the way they did and they're not as careful, and they could trip and fall.

Elderly patients living with depression, schizophrenia and other mental illnesses present additional challenges with their psychiatric medications, according to Brown.

Their moods are not the same. Their personalities can change, she said. As with non-psychiatric patients, adjusting their medications can be fraught with peril, the doctor said.

Dr. Jennie E. Johnson is another practitioner on the front lines of post-COVID-19 syndrome.Associate Medical Director of theInfectious Diseases and Immunology Center atThe Miriam Hospital, Johnson told The Journal that a growing demand for treatment of long-haul patients prompted Miriam to open a specialized clinic late last year. Dozens of people so far have been treated.

We enlisted champions from other departments that could help us, so it's a multidisciplinary program, Johnson said. Cardiovascular, pulmonary, physical therapy and rehabilitation specialists are among those on the team, along with social workers and psychologists. So it's really a full range of services to cover a full range of conditions and symptoms, which is great, the doctor said.

In contrast to Roger Williams, the Miriam team is seeing a lot of younger patients, Johnson said. People who had a more mild course initially but have developed profound fatigue, have exercise intolerance. So whereas before they were college athletes, now they can barely run a mile without having to stop. And this has persisted despite repeated attempts and long attempts to recondition themselves after their initial illness.

Although the precise mechanisms of post-COVID syndrome remain largely a mystery, Johnsons reading of the literature has informed her of possibilities.

Obviously, the virus is gone, she said. But in the wake of SARS-CoV-2, there is all of this immune dysregulation and inflammatory response that the virus kind of stirs up. Is there some sort of low level of that that we don't detect and inflammatory markers that's causing these ongoing symptoms? Again, we don't know. We can just hypothesize.

Like her friend and fellow Bayada employee Deb Crabtree, Elizabeth Torres, 32, has embraced the motto of one day at a time, slow and steady wins the race. A Black Lives Matter activist and licensed practical nurse who is attending the Community College of Rhode Island to become an RN, Torres contracted COVID-19 in November.

As withCrabtree, a headache was among the first symptoms.

At first she thought, Its just a headache, and I went to work that day, but the headache got progressively worse, she said in a virtual interview. The following day, I started having body aches and I had a low-grade fever from there. Also, dizziness and shortness of breath.

Torres isolated but did not require hospitalization, but for about two weeks, she said she experienced overall malaise. … I was fatigued.I was probably sleeping 20 hours a day. I cant even exaggerate that even doing the dishes exhausted me.

Today, she is not experiencing long-haul symptoms, but she says she knows several people, like Crabtree, who are. And she is concernedthat some day she could, too.

You worry that there could be more effects later, she said. I feel like this virus has a mind of its own and does what it wants to whoever it wants.

With her persisting headaches, Crabtree shares that view.

Its a little scary to think that Wow, all of this caused me to have a headache for going on three months now, she said.

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For COVID long-haulers, 'recovery' is just the start of chronic complications - The Providence Journal

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