Former HIMSS employee and board member Frank Cutitta is a survivor of COVID-19.
He recently marked his 100th day in care which has been spent first at Massachusetts General Hospital and now in the Spaulding Hospital for Continuing Medical Care in Cambridge. He finally has plans to go home, though the "Godzilla of pneumonia" that infected his lungs continues to plague his health.
Luckily, Cutitta said, the fog of the "milk of amnesia" that is the result of the drug propofol, has cleared. Unlike some other COVID-19 victims who have been given the drug when placed in an induced coma, he is thinking clearly again.
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Cutitta spent 45 days in a coma, on a ventilator and intubated.
"When I started closing my eyes, and the doctor said, 'We're going to put you under with propofol and we're not quite sure when we're going to wake you up,' that was the harsh reality," Cutitta said.
While the figures have fluctuated since the early days of the pandemic in the United States, the numbers of those surviving what Cutitta has been through were at one time, frighteningly low.
When he left Massachusetts General for post-acute care at Spaulding, about 30 physicians, nurses and staff lined up and applauded him in a "clap-out."
"They take pride in bringing somebody back to life," Cutitta said.
Cutitta views his experience through the lens of a healthcare professional who thought he knew about patient experience, interoperability and how the healthcare system works.
COVID-19 changed all of the expectations.
The biggest thing he learned, he said, was the mental despair of loneliness, both on his part, and that of his healthcare providers.
COVID-19 prevented staff from spending too much time with one patient, both due to their harried schedules and because they needed to limit their exposure to the virus.
"Dealing with the isolation ... the shocker for me was seeing how prevalent it is," Cutitta said. "When you see how the patient has to be treated differently than other patients mainly due to the contagious nature of the disease."
Plus, all were behind the anonymity of a face mask.
He suggested they wear a selfie photo on their masks. One did.
"When you have to ask somebody who they are who is coming in doing intimate things for your care, it's frustrating," he said.
Providers told him they were also suffering from the isolation. Some doctors were brought in from other departments and practices, such as oncology, into the COVID-19 environment.
Occasionally he would get about 10 minutes to speak with them.
"They take their life in their hands," he said. "They're used to working in a cancer unit, they're used to having an intimate relationship with the patient. I would talk to doctors, (who said) 'You think you're lonely? We're used to being engaged with patients.'"
There were nurses who told him they had lost all of their friends because no one wanted to see them due to the fear of contagion.
"Isolation and loneliness has been institutionalized in many providers," Cutitta said. "It's an epidemic of loneliness. I spent 23 hours a day with no one to talk to, other than someone who came in to change my tubes."
Healthcare providers need to look at the anonymity and loneliness aspect as one would look at chemotherapy for a cancer patient. The workflow has yet to permit staff to talk and listen to patients for any length of time.
"Loneliness is up there for a cause of death," Cutitta said, "especially for older people."
As of late June, over 10 million people worldwide have been infected by the coronavirus. Over half a million have died.
In the United States, 2.5 million have become infected and over 125,000 people have died, according to the Johns Hopkins COVID-19 dashboard.
The numbers continue to climb in some regions of the country, with no immediate end to the pandemic that kills one person while leaving another individual asymptomatic.
The elderly and those with chronic conditions are considered especially vulnerable. The Centers for Disease Control and Prevention reports a death rate for individuals who have underlying health problems as 12 times greater than that of people with no such preexisting conditions.
Cutitta, 68, said he could have lost a few pounds, but other than that, considered himself healthy: physically, mentally and emotionally.
Over the 100 days, he has lost 40 pounds.
It's hard to remember now, but back in late February and the very early days of March, the coronavirus had yet to become central to our daily lives in the United States.
In late January, Health and Human Services Secretary Alex Azar declared the coronavirus a public health emergency, though by February 7 there were only 12 confirmed cases in the U.S., a number that remained relatively static for two-to-three weeks. As late as February 25, Azar said the threat to the U.S. remained low.
The Trump Administration said the situation was under control, though Dr. Nancy Messonnier, director of the CDC's National Center for Immunization and Respiratory Diseases was at odds with the Administration in her warning that, "Ultimately, we expect we will see community spread in this country."
After that, the situation ramped up daily as New York became the epicenter for the spreading virus.
But in early March, Cutitta was getting ready to attend the HIMSS20 global conference. When he began to feel ill, COVID-19 didn't immediately come to mind. He blamed his shortness of breath on a cold, or allergies.
"No one was required to wear a mask yet," he said.
On a Thursday night, his wife dropped him off at Newton-Wellesley Hospital and went to park the car. Cutitta was taken into the emergency area and was told he had something serious that later was confirmed as COVID-19.
He was sent to Massachusetts General Hospital where he began his 100-day journey.
He believes he got the virus from travelling on an airplane, when he flew to visit his mother for her 90th birthday party. He thinks he spread it to members of the family, who also tested positive for the virus, but none were as seriously sick as Cutitta and all are now healthy.
His immediate family, he said, has served as his "warriors and angels." He believes they got him through the worst of his sickness when he was in a coma.
"The support of family is important," he said. "They would put on the Beach Boys and Pavarotti. I don't remember anything."
Since he has been at Spaulding, the self-admitted foodie said he has had the good fortune to have a social worker and other staff there who have sat down and talked with him about subjects unrelated to his health, such as area restaurants.
"It's about as low tech as you can get," Cutitta said of the conversational therapy.
The tech of FaceTime, television, the computer and digital books, cannot replace in-person contact.
"Telemedicine creates the illusion of having an intimate relationship," he said.
Cutitta plans to write a book about his experience.
In his previous life, he said, he wrote about healthcare technology and neuroscience.
In the hospital, he saw aspects of interoperability that seemed daunting. The longer written records of patient engagements got read the least.
"People don't want to plod through detailed notes," he said.
This affected him personally, when he would have traded filet mignon just to get an ice chip. It took two to three weeks for someone to read the medical notes that gave the OK for him to get ice chips.
It's those kinds of things that affect care on a day-to-day basis, when the pipeline goes from the doctor, who writes a change of medication, to the worker bees who must get it, he said.
"In terms of technology, the tech is pretty straight-forward," Cutitta said. "I'm sure some of the doctors are using AI around the world."
But AI is based on history and the coronavirus is only months old.
"They don't have a data baseline," he said. "The doctors are open in saying, 'We just don't know. We're hoping you'll tell us.'"
He wonders how rural hospitals are doing, now that COVID-19 has spread to those areas. He wonders about the physicians and nurses who treated him in the intensive care unit whom he never got to meet.
"They put their lives at risk, they still ask about me," he said. "I still have no idea who they are."
And he has one last word of advice for all: "Wear a mask."
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