Learning to Live Again: A Lazarus Story from the Covid Front Lines

The twinkle in his eyes, the joy in his smile, the joyful way he moved his sick body. They all delivered a single, powerful message: thankful to be alive!

“As my care team and family tell me, ‘You have been born again. You have to learn to live again, ”said Vicente Perez Castro. “I went through a very difficult time.”

Hell and back is more like that.

Perez, a 57-year-old chef from Long Beach, California, was barely breathing when he was admitted to Los Angeles County’s Harbor-UCLA Medical Center on June 5. He tested positive for Covid-19 and spent three months in intensive care. Almost everything was connected to a ventilator with a tube in its throat. Another tube carried nutrients into his stomach.

At one point, doctors told his family that he would not make it and that they should consider disconnecting the life-saving devices. But his 26-year-old daughter Janeth Honorato Perez, one of three children, said no.

And so he was here six months later on a bright February morning – an outpatient slowly moving around the perimeter of a high-ceilinged room at the Rancho Los Amigos National Rehabilitation Center in Downey, one of the LA Counties, on a walker four public hospitals and the only one whose main role is patient rehabilitation.

Perez walks across the room at the Rancho Los Amigos National Rehabilitation Center while a physical therapist intern schedules him.(Heidi de Marco / KHN)

Perez, who is 5-foot-5, had lost 72 pounds since he got sick. His legs were unsteady, his breathing labored as he trudged forward. But he kept moving for five or six minutes, “a huge improvement” from when he could only run 60 seconds late last year, said Bradley Tirador, one of his physical therapists.

Rancho Los Amigos has an interdisciplinary team of doctors, therapists and speech pathologists who provide medical and mental health care, as well as physical therapy, occupational therapy and recreational therapy. It serves a population that is disproportionately affected by the pandemic: 70% of the patients are Latinos, as well as 90% of the patients with Covid. Almost everyone is either uninsured or with Medi-Cal, the government’s insurance program for low-income people.

Rancho is one of more and more medical centers across the country with a program specifically designed for patients suffering from the symptoms that occur as a result of Covid. The Mount Sinai Health System Center in New York City, which opened last May, was one of the first. Yale University, the University of Pennsylvania, UC Davis Health, and more recently Cedars-Sinai Medical Center in Los Angeles are among the health systems with similar offerings.

The Rancho Los Amigos National Rehabilitation Center in Downey is one of four public hospitals in LA County and the only one devoted to rehabilitation. The hospital mainly serves low-income Latino patients.(Heidi de Marco / KHN)

Rancho Los Amigos only treats patients who are recovering from a serious illness and who remain in intensive care for a long time. Many of the other post-covid centers also tend towards those who have had milder cases of covid, were not hospitalized, and later had a variety of diffuse, difficult-to-diagnose but debilitating symptoms – sometimes referred to as “long covid”.

The most common symptoms are fatigue, muscle pain, shortness of breath, insomnia, memory problems, anxiety, and palpitations. Many healthcare providers say these symptoms are just as common, maybe even more common, in those with only moderate Covid.

A survey conducted by members of the Body Politic Covid-19 Support Group found that 91% of patients who had developed mild to moderate Covid still had some of these symptoms an average of 40 days after their first recovery.

Other studies estimate that around 10% of patients with Covid will develop some of these prolonged symptoms. With more than 28 million confirmed cases in the US, this post-Covid syndrome is a rapidly escalating problem.

“What we can say is that 2 [million] At least 3 million Americans will need long-term rehabilitation because of what has happened to date, and we are only just beginning, “said David Putrino, director of rehabilitation innovation at Mount Sinai Health.

Perez was a chef in a hotel restaurant before he fell ill, so his occupational therapy involves preparing meals.(Heidi de Marco / KHN)

Healthcare professionals appear cautiously optimistic that most of these patients will make a full recovery. They find that many of the symptoms are common in people with certain other viral diseases, including mononucleosis and cytomegalovirus, and tend to go away over time.

“People will recover and be able to live their normal lives again,” said Dr. Catherine Le, Co-Director of the Covid Recovery Program at Cedars-Sinai. But for the next year or two she said, “I think we’re going to see people who feel unable to go back to the jobs they did before.”

Rancho Los Amigos is discussing plans to take in patients who had a mild illness and later developed post-Covid syndrome, said Lilli Thompson, director of the rehab therapy department. Right now, the main effort is to include all severe cases transferred directly from the three sister public hospitals, she said.

The most seriously ill patients can have severe neurological, cardiopulmonary, and musculoskeletal damage. Most – like Perez – have lost a significant amount of muscle mass. They typically have “post-ICU syndrome,” a set of physical, mental, and emotional symptoms that can overlap with symptoms of long covid, making it difficult to figure out how much of their condition is a direct effect of the coronavirus is and how much is the more general impact of months in the intensive care unit.

Speech pathologist Katherine Chan checks Vicente Perez Castro’s throat. He had a tracheotomy in the hospital for Covid. (Heidi de Marco / KHN)

Perez uses a breathing trainer during his therapy. (Heidi de Marco / KHN)

The large, rectangular rehab room where Perez met his therapists earlier this month consists of half a gym and half a sitcom. Part of the space is taken up by weights, video-connected machines to strengthen hand controls, and high-tech treadmills, including one that reduces gravity and allows patients to walk unsteadily on their feet without falling. “We tell patients, ‘It’s like walking on the moon,” Thompson said.

At the other end of the room is a big screen TV and a low couch that people can use to practice standing and sitting without undue stress. In a sleeping area, patients relearn how to make and remove their beds. A few feet away, a small office space helps them work on computer and telephone skills that they may have lost.

Perez takes a break during therapy. He was barely breathing when he was admitted to Los Angeles County’s Harbor-UCLA Medical Center in early June last year.(Heidi de Marco / KHN)

Since Perez was a chef in a hotel restaurant before his illness, his occupational therapy involves preparing meals. He stood by the sink rinsing lettuce, carrots and cucumbers for a salad and took them to a table where he sat down and chopped them with a sharp knife. His knife hand was trembling dangerously, so occupational therapist Brenda Covarrubias wrapped a weighted ribbon around his wrist to support him.

“He’s working to regain the skills and stamina he needs for his job and only for routine everyday activities like walking the dogs and climbing stairs,” Covarrubias said.

Perez’s hands trembled when he tried to cut vegetables, so a weighted tape was wrapped around his wrist to keep him calm.(Heidi de Marco / KHN)

Perez, who immigrated to the United States from Guadalajara, Mexico, nearly two decades ago, was optimistic and optimistic, although his voice was weak and his body was still a shell of his former self.

When his speech therapist Katherine Chan took off his face mask for some breathing exercises, he pointed to the mustache he had recently sprouted and cheerfully exclaimed that he had cut it himself. And he said, “I can change now.”

Weeks earlier, Perez had mentioned how much he loved dancing before he got sick. So they made it part of his physical therapy.

“Vicente, are you ready for bail?” Kevin Mui, a student physiotherapist, asked him when another staff member was putting on a tune for the Colombian cumbia band La Sonora Dinamita.

Perez stood up slowly, trembling. He anchored himself in an upright position and then shuffled his feet front to back and side to side. The hips swayed with the rhythm. His face glowed with the joy of life.

Perez dances to cumbia music as part of his physiotherapy.(Heidi de Marco / KHN)

This story was produced by KHN publishing the California Healthline, an editorially independent service of the California Health Care Foundation.

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