‘We Are Looking For Answers’: Treating The COVID Long Haulers

https://www.wnpr.org/post/we-are-looking-answers-treating-covid-long-haulers

Vic Gara, 57, at his home in West Granby Dec. 10, 2020. Gara survived COVID-19 in a hospital ICU bed on a ventilator. Months later, he discovered he was experiencing long-term complications from the virus.

In early March, Vic Gara came down with severe muscle aches, headaches and a rising blood pressure, indicators of COVID-19 that weren’t well understood early on in the pandemic.

“Taking a shower, just the water hurt my body,” he said. “I couldn’t sleep. I slowly became hypoxic. I just couldn’t breathe.” 

Eventually, he was admitted to Hartford Hospital, where he was quarantined immediately and separated from his wife, Laura. 

“My wife was walking in from after parking the car, and I saw her from maybe 15, 20 feet away and I just barely raised my hand and said goodbye to her,” Gara recalled. “And I was there for a month.”

The 57-year-old was intubated and spent 11 days on a ventilator, which helped him breathe, before he regained consciousness. Like so many others who required intensive care, Gara was first transferred to a rehabilitation hospital for a short time before he could return to his home in West Granby.

He thought the worst was behind him. But by midsummer, Gara struggled with exhaustion, his headaches returned, he had poor balance and trouble speaking and “brain fog” had set in. Then he joined an online support group for COVID-19 survivors. 

“Not until I was contacted did I find out, ‘Oh my god, there’s other people like me that are suffering almost identical situations,’” he said.

There is an untold number of COVID-19 survivors worldwide who struggle with long-term symptoms and complications from the virus. Scientists don’t yet know how common this occurs, but what they do know is symptoms can be both physical and mental in nature, and they can delay people from making a full recovery.

As the phenomenon becomes more well-known and researched, health organizations across Connecticut and the country are creating and expanding dedicated COVID-19 recovery programs to help survivors.

“We’re now seeing patients that have had some of those symptoms for eight, nine months,” said Dr. Jerry Kaplan, outpatient medical director at Gaylord Hospital in Wallingford. He runs the organization’s new COVID-19 recovery and rehabilitation program.

The hospital created an online support group over the summer for former COVID-19 rehab patients like Gara. Kaplan said that’s when patients came forward with a wide range of lingering health issues.

Gaylord opened its specialized outpatient program in early fall, and it provides COVID-19 survivors with occupational and physical therapies, nutrition education, psychological treatment and other services.

“Even if you can’t do everything you were doing before, we can get you to the highest possible functional level,” Kaplan said, “and that’s really what the program is designed to do.”

The program has picked up in the last several months as long-term complications from COVID-19 illness become more well-known.

“As we see more patients hospitalized with COVID now, we will continue to see the need for COVID recovery programs in the future,” Kaplan said.

The Post-COVID-19 Recovery Program at Yale Medicine opened several months ago as a Friday clinic with a small patient roster. Dr. Denyse Lutchmansingh said it has now expanded to three days a week as more patients and medical clinicians discover the program.

“I think early on, people would say, give it a couple of weeks and you should feel better,” she said. “And now we’re well past that give-it-a-couple-of-weeks period and people are still having symptoms.”

Lutchmansingh, a pulmonary and critical care physician who leads the Yale recovery program, said she and her colleagues initially expected that patients who had had moderate to severe COVID-19 illness, like Gara, would be the ones needing long-term recovery services the most.

That’s only been partly true.

“Patients who were classified as mild disease have also had persistent symptoms almost as severe as a patient who was hospitalized in an intensive care unit, and that has been quite eye-opening,” she said.

Lutchmansingh said the clinic is also seeing a surprisingly young population. She has patients in their 30s and 40s who were runners, athletically inclined, or generally in good health prior to getting a mild case of COVID-19 “who now struggle to walk up a flight of stairs.”

It’s some of these patients that Lutchmansingh has seen struggle the most mentally with their persistent symptoms.

“Because they expected to recover very quickly and move on,” she said.  

Dr. Serena Spudich is the division chief of neurological infections and global neurology at Yale School of Medicine and leads a designated neuro-COVID clinic, which opened in October.

Her team collaborates with Lutchmansingh and other clinicians in the greater community to get referrals for COVID-19 survivors suffering with tingling and numbness, loss or impaired senses of smell, taste and hearing, headaches, cognitive impairment and other complications.

Many of these patients were never hospitalized or never required intensive care for COVID-19.             

This is where more research can help make sense of the trends that health providers are seeing in their COVID-19 “long hauler” patients, Spudich said.

“I think it’s really important to try to understand why some people get these neurologic issues, and many people don’t seem to,” she said. “I know lots of people who’ve recovered from COVID who seem completely fine.”

Scientists are still trying to estimate exactly how many people in the world ever had COVID-19, including those who never got tested or people who got false negative results — cases that have not been recorded.

Only then might health experts know how common or rare long-term complications are among survivors, Spudich said.

“I think it’s important to be aware of them, to understand them and of course provide treatment for them,” she said. “But I worry that it’s sort of a fire that can take off where all the social media, all the press attention will suddenly make a lot of people think, ‘Oh, I’m having post-COVID problems.’”

“What is really, really important is getting patients who are having symptoms to a provider who can really critically take care of them and try to understand clinically what’s happening with them.”

What patients often want to know is, when will their health get back to what it was prior to COVID-19? And health experts don’t yet have a good answer to that as scientists continue to follow survivors in their recovery.

“We always make it clear to the patients that we don’t have all the answers. We are looking for answers,” Lutchmansingh said. “We remain hopeful, we have seen patients improve and build back to baseline, but it is a long pathway and it is not necessarily an easy pathway.

For Gara, he continues recovery treatment at Gaylord on an outpatient basis. He tries to get outside more and build up his endurance with walks. For the most part, he takes it one day at a time.

“I went into it with an open mind and trying to stay positive,” he said. “I learned how to be more positive and look for the good rather than the bad. It helps.”

More Evidence Points to Role of Blood Type in COVID-19

Additional evidence continued to suggest blood type may not only play a role in COVID-19 susceptibility, but also severity of infection, according to two retrospective studies.

In Denmark, blood type O was associated with reduced risk of developing COVID-19 (RR 0.87, 95% CI 0.83-0.91), based on the proportion of those with type O blood who tested positive for SARS-CoV-2 compared with a reference population, reported Torben Barington, MD, of Odense University Hospital, and colleagues.

However, there was no increased risk for COVID-19 hospitalization or death associated with blood type, the authors wrote in Blood Advances.

Limitations to the data include that ABO blood group information was only available for 62% of individuals, and that the sex of the testing population was skewed, with women accounting for 71% who tested negative and 67% who tested positive.

They pointed to the recent research that blood type plays a role in infection, noting the lower than expected prevalence of blood group O individuals among COVID-19 patients. Researchers also observed how blood groups are “increasingly recognized to influence susceptibility to certain viruses,” among them SARS-CoV-1 and norovirus, adding that individuals with A, B, and AB blood types may be at “increased risk for thrombosis and cardiovascular diseases,” which are important comorbidities among patients hospitalized with COVID-19.

ABO and RhD blood group information was available for 473,654 individuals who were tested for SARS-CoV-2 from February 27 to July 30, as well as for 2,204,742 individuals not tested for SARS-CoV-2 as a reference.

Of the individuals tested, 7,422 tested positive for SARS-CoV-2. About a third of both those who tested positive and negative were men, and those with positive tests were slightly older (52 vs 50, respectively).

Among individuals testing positive for SARS-CoV-2, about 38% (95% CI 37.5-39.5%) belonged to blood group O versus about 42% of those in the reference population. There were significantly more group A and AB individuals in the positive testing group versus the reference population, though the difference was non-significant for group B. When group O individuals were removed, there was no difference between the remaining groups.

Blood Type Linked to COVID-19 Severity?

Meanwhile, a second, smaller study in Blood Advances did report a connection between blood type and COVID-19 severity.

Blood types A or AB in COVID-19 patients were associated with increased risk for mechanical ventilation, continuous renal replacement therapy, and prolonged ICU admission versus patients with blood type O or B, according to Mypinder Sekhon, MD, of the University of British Columbia in Vancouver, and colleagues. Inflammatory cytokines did not differ between groups, however.

These authors also cited research that found that blood groups were linked to virus susceptibility, but that the relationship between SARS-CoV-2 infection severity and blood groups remains “unresolved.” However, COVID-19 appears to be a multisystem disease with renal and hepatic manifestations.

“If ABO blood groups play a role in determining disease severity, these differences would be expected to manifest within multiple organ systems and hold relevance for multiple resource-intensive treatments, such as mechanical ventilation and continuous renal replacement therapy,” Sekhon and colleagues wrote.

They collected data from six metropolitan Vancouver hospitals from Feb. 21 to April 28, identifying 95 COVID-19 patients admitted to an ICU with known ABO blood type.

Among these patients, 57 were group O or B, while 38 were group A or AB. A significantly higher proportion of A/AB patients required mechanical ventilation versus O/B patients (84% vs 61%, respectively, P=0.02). Similar figures were seen for patients requiring continuous renal replacement therapy (32% vs 9%, P=0.04). Median ICU stay length was also longer for A or AB patients compared with O or B patients (13.5 days vs 9 days, P=0.03).

There was no difference in probability of ICU discharge, and eight patients died in the O/B group versus nine patients in the A/AB group. Not surprisingly, biomarkers of renal and hepatic dysfunction were higher in the A/AB group, as well.

“The unique part of our study is our focus on the severity effect of blood type on COVID-19. We observed this lung and kidney damage, and in future studies, we will want to tease out the effect of blood group and COVID-19 on other vital organs,” Sekhon said in a statement.

About 25% of patients were missing data on blood group, and the nature of the study makes it impossible to infer causality, the authors acknowledged. Ethnic ancestry and outcomes in patients with COVID-19 could be an unaddressed confounder. Additionally, anti-A antibody titers may affect COVID-19 severity, and these were not measured.