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COVID-19 Long Haulers: Surviving May Not Mean Thriving

Specialists in rehabilitation medicine, pulmonology, neuroscience and cardiology share early observations about post-COVID challenges patients may face.

Because it is such a new virus, COVID-19 and its long-term effects on patients after their recovery is unknown. But based on observation and limited early research, physicians are at least tentatively concerned.

Following several weeks on a ventilator in a hospital’s intensive care unit, severely stricken COVID-19 survivors may require several more weeks or months in a rehabilitation unit. One reason is that their muscles have atrophied due to extended underuse. Another is that their lungs need time to recover. They may even require a tracheostomy, a procedure in which a modified breathing tube is inserted through a cut in the neck below the vocal cords, enabling air to enter the lungs.

After several more weeks spent in rehab, a patient may finally be discharged–but not necessarily the way they formerly were.  These survivors are now being referred to as COVID-19 long haulers. Their road to recovery may take months, years or, they may not fully recover at all.

“Not many of the COVID-19 patients in rehabilitation that I’ve cared for since March have recovered completely,” says physical medicine and rehabilitation specialist Dr. Kimberly Heckert. “Many of them have life-altering changes to their bodies and will never be the same.”

Damage May Take Various Forms

Dr. Heckert has cared for patients in whom the virus has caused clots that have resulted in amputations, and in others, strokes that cause paralysis to one side of the body.

Dr. Kimberly Heckert

Dr. Kimberly Heckert

“Sometimes, the coronavirus causes sepsis, which drops the patient’s blood pressure so low that the limbs lose oxygen and the tissue dies,” says Dr. Heckert. She has referred some of these patients to Jefferson surgeons for lifesaving amputation. One of her patients, for example, lost a thumb, another, a leg.

The latter patient, adds Dr. Heckert, also experienced COVID-19-related delirium and has yet to regain normal mental function. Another has experienced cognitive dysfunction, leaving him unable to recall previous conversations she has had with him.

There are other patients who have had COVID-19-related pulmonary issues. One disregarded the warning signs during weeks of the pandemic. After three months as an inpatient, he went home on oxygen because of significant lung damage.

“Before he left,” recalls Dr. Heckert, “he told me, ‘I didn’t take COVID-19 seriously. I wish I had.’”

Uncertain But Concerning

As of early August, the Jane & Leonard Korman Respiratory Institute – Jefferson Health and National Jewish Health, home of a recently established Coronavirus Program for patients with COVID-19-related lung disease, had treated approximately 300 inpatients and 50 outpatients.

Dr. Jesse Roman

Dr. Jesse Roman

“Understanding COVID-19 and its implications is still evolving,” advises pulmonologist Dr. Jesse Roman. “We haven’t yet collected a sufficient number of patients or data to reach definite conclusions about COVID-19 and its long-term impact on the lungs.

“Thankfully, the majority of patients we’ve seen have recovered, are back to work and doing well.

“But based on what we have learned so far and from our experience with other viruses, we anticipate that COVID-19 could exacerbate asthma, COPD and interstitial lung diseases. It might also cause chronic problems such as bronchiolitis, an inflammatory respiratory condition that causes difficulty breathing and flu-like illness. Some have suggested that it might cause permanent lung scarring. But again, we don’t yet have enough data to know for sure.”

Problems Despite Regained Lung Function

Dr. Roman suggests, however, that some patients who recover from COVID-19 and regain normal lung function could experience some diminishment of muscular, cardio and/or cognitive function, making it difficult for them to work, exercise or even move without serious shortness of breath. He notes potential similarities between contemporary patients with COVID-19-triggered acute respiratory distress syndrome (ARDS) and ARDS patients in the pre-COVID 1990s.

“Data back then showed that after a long hospitalization in intensive care, some ARDS patients regained normal lung function, but nevertheless suffered exertional shortness of breath as well as loss of muscular and sometimes cognitive function,” says Dr. Roman.

“Similarly, some COVID-19 patients–especially those with severe respiratory conditions such as ARDS–could possibly end up with chronic abnormalities that we might not be able to attribute to their lungs, but rather to systemic effects to the body from prolonged stays in intensive care.

Again,” he cautions, “we have not yet accumulated enough data to really know.”  Jefferson is now participating in a study to learn more about the long-term effects of COVID, through a national initiative funded by the CDC.

One particularly perplexing case, Dr. Roman reports, is that of a 34-year-old woman. Prior to having COVID-19, she’d had no lung disease, exercised religiously and didn’t even need to be hospitalized. Yet, more than a month after a negative test indicating recovery, she continues to have chronic fatigue and joint pain, and cannot walk for long without having shortness of breath–leaving her unable to exercise or work.

“We cannot find objective evidence of disease,” says Dr. Roman. “Her tests show normal lung and heart function. It’s a mystery.”

Coronavirus In Red Background

Increased Risk of Stroke

Data may be limited, but Jefferson surgeons and collaborators have made some potentially vital, if preliminary, observations regarding post-COVID-19 stroke after studying 14 patients. The findings suggest that young patients–with no risk factors for stroke–may have an increased risk if they have contracted COVID-19, whether or not they’re showing symptoms.

“Observed strokes were unlike what we usually see,” says neurosurgeon Dr. Pascal M. Jabbour of the Vickie and Jack Farber Institute for Neuroscience.

“Eight of the patients we examined were male, and six were female. Fifty percent did not know they had the coronavirus, while the remainder were already being treated for other symptoms of the disease when they developed stroke.”

Some of the major findings of the research include:

  • Patients with signs of stroke were delaying coming to the hospital for fear of getting the coronavirus. There’s a small window of time in which strokes are treatable, so delays can be life-threatening.
  • The mortality rate in these COVID-19 stroke patients with large vessel occlusion, or blockage, who received mechanical thrombectomy, a procedure to remove a clot, was 42.8%. The typical mortality rate from stroke with large vessel occlusion is around 5 to 10%.
  • Forty-two percent of the stroke coronavirus positive patients studied were under the age of 50. More than 75% of all strokes in the U.S. occur in people over the age of 65.
  • The incidence of coronavirus in the stroke population was 31.5%, according to this sample of patients.
  • Some of the observed patients had stroke in large vessels, in both hemispheres of the brain, and in both arteries and veins of the brain.

All of these observations are unusual in stroke patients.

Why Higher Incidence of Stroke?

The coronavirus enters human cells via a very specific access point – a protein on human cells called receptor of the ACE2. But the coronavirus latches onto this protein, inhibits it and uses it as a gateway into the cell, where the virus can replicate. Not all cells have the same amount of ACE2 receptors. This protein is very abundant on cells that line blood vessels, the heart, kidney, and of course, the lungs.

Dr. Pascal Jabbour“We speculate that the coronavirus may be interfering with this receptor’s normal function, which controls blood flow in the brain, in addition to using it as an entry point to the cell,” explains Dr. Jabbour.

“In addition to that, COVID-19 creates a severe inflammatory state which causes the increase of a family of inflammation proteins in the blood called cytokines, which trigger and activate the coagulation cascade with clot formation.

“Another possible explanation for higher incidence is that the inflammation of the blood vessels causing vasculitis with injury to the cells that line the lumen of the vessel, called endothelium, is causing micro thrombosis in small vessels.

“Although preliminary, our observations can serve as a warning,” concludes Dr. Jabbour. “Stroke is occurring in people who don’t know they have COVID-19, as well as those who feel sick from their infections. We need to be vigilant and respond quickly to signs of stroke.”

Risks to the Heart as Well

Dr. Rene Alvarez

Dr. Rene Alvarez

Cardiologist Dr. Rene Alvarez says that the long-term effects of COVID-19 on the heart are still unknown, but they are something cardiologists are actively collecting data on and researching. “No one knew what was going to happen when those first responders went into the Twin Towers in New York City on 9/11,” he reflects. “But now we know many of them are dying or have died due to the consequences of inhaling the glass at ground zero. I don’t know what the consequences of COVID-19 are going to be except that there will be long-lasting cardiac effects.”

What cardiologists have witnessed so far is that COVID-19 causes a significant inflammatory response in the heart and that response can precipitate heart attacks, arrhythmias, myocarditis, acute decompression of the function of the heart, even sudden death, according to Dr. Alvarez. “Research coming out of New York and Italy after their surge suggests that people were dying suddenly at home, either because of acute covert inflection and the inflammatory response in the heart or heart failure caused by delay in treatment for established cardiovascular disease patients,” he says. “We see these trends from 911 calls placed at this time in comparison to 2019, as well as the number of admissions for non-COVID-19 related issues pertaining to the heart. It’s clear that the inflammatory response can affect the valves of the heart.”

Is anyone vulnerable to these cardiac symptoms/responses if they catch COVID-19? The short answer, according to Dr. Alvarez, is that they don’t yet know. “I think the answer to that is that it is certainly possible,” he explains. “But probably less likely to see this response in young, healthy people. The adage in medicine in the sicker you are, the sicker you will become, and the sicker you will be in the future.”

That point emphasizes how critical it is to adhere to precautions and CDC guidelines, including hand washing and practicing social distancing, as well as maintaining a healthy lifestyle. “Now is not the time to skip medications or stop taking them if you’re part of vulnerable populations, such as diabetic or high-blood-pressure patients,” says Dr. Alvarez. “Anything you can do to improve your risk factors and your co-morbidities will go a long way and decrease your chance of getting sick or having long-term consequences if you do contract COVID-19.”

The timeline tells our story.

This timeline offers a view into key decision points that have enabled Jefferson Health to deliver safe care to our patients while protecting our staff from the early days of the pandemic through to present day.

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COVID-19, From the Experts