(New York Times) – Hundreds of thousands of severely ill coronavirus patients who survive and leave the hospital face a difficult new challenge: recovery. Many struggle to overcome a series of troublesome residual symptoms, and some problems can persist for months, years, or even the rest of their lives.
Patients who return home after being hospitalized for severe respiratory failure from the virus face physical, neurological, cognitive, and emotional problems.
And they must navigate their recovery process as the pandemic continues, with all the stress and depleted resources it has brought.
“It’s not just, ‘Oh, I had a terrible time in the hospital, but thank God I’m home and everything is back to normal,'” said Dr. David Putrino, director of rehabilitation innovation at Mount Health System. Sinai in New York City. “It is, ‘I just had a terrible time in the hospital and guess what? The world is still burning. I need to address that as I try to catch up on what used to be my old life. ‘”
It is still too early to say how the recovery of these patients will develop. But here is a look at what they are experiencing so far, what we can learn from former patients with similar medical experiences and the challenges that are likely to come.
What problems do patients experience after leaving the hospital?
There are many. Patients may leave the hospital with scars, damage, or inflammation that still needs to heal in the lungs, heart, kidneys, liver, or other organs. This can cause a variety of problems, including metabolic and urinary problems.
Dr. Zijian Chen, medical director of the new Post-Covid Care Center at the Mount Sinai Health System, said the biggest physical problem the center saw was shortness of breath, which may be the result of lung or heart problems. or a blood. clotting problem
“Some have an intermittent cough that doesn’t go away, making it hard for them to breathe,” he said. Some even get nasal oxygen at home, but it’s not helping them enough.
Some patients who were on ventilators report difficulty swallowing or speaking above a whisper, a generally temporary result of bruising or inflammation of a breathing tube that passes through the vocal cords.
Many patients experience muscle weakness after lying in a hospital bed for so long, said Dr. Dale Needham, a critical care physician at Johns Hopkins School of Medicine and a leader in the field of intensive care recovery. As a result, they may have trouble walking, climbing stairs, or lifting objects.
Nerve damage or weakness can also reduce muscle strength, Dr. Needham said. Neurological problems can also cause other symptoms. Dr. Chen said that the Mount Sinai post-Covid center has referred nearly 40 percent of patients to neurologists for problems such as fatigue, confusion and mental confusion.
“Some of it is very debilitating,” he said. “We have patients come in and tell us, ‘I can’t focus on work. I have recovered, I have no breathing problems, I have no chest pain, but I cannot return to work because I cannot concentrate. “
The center also refers some of these patients for psychological consultations, said Dr. Chen.
“It is very common for patients to have PTSD after going through this: nightmares, depression and anxiety because they have flashbacks and remember what happened,” said Dr. Lauren Ferrante, a pulmonary and critical care physician at Yale Medical School. who studies Post ICU recovery results.
Experts say emotional problems may increase for Covid-19 patients due to their hospital days without visits from family and friends.
“This experience of being extremely ill and extremely lonely really amplifies the trauma,” said Dr. Putrino, adding that many patients contacted his program to request telemedicine psychology services. “They say, ‘Listen, I’m not really myself and I need to talk to someone.'”
To describe the wide variety of recovery challenges, experts often use a general term, coined about a decade ago: post-intensive care syndrome, or PICS, which can include any of the physical, cognitive, and emotional symptoms that patients face.
What makes someone more likely to face recovery challenges?
Studies of people hospitalized for respiratory failure from other causes suggest that recovery is more likely to be more difficult for people who were frail beforehand and for people who needed longer hospitalizations, Dr. Ferrante said.
But many other coronavirus patients, not just those who are older or who have other medical conditions, spend weeks on ventilators and extra weeks in hospital after their breathing tubes are removed, making their recovery steeper. to upload.
“You have a long stay in a ventilator and in the ICU which are now longer than we’ve seen before,” said Dr. Ferrante. “You are concerned that this has repercussions for physical function and that we will see more people who are not recovering.”
Another factor that can extend or hinder recovery is a phenomenon called hospital delirium, a condition that can involve paranoid hallucinations and anxious confusion. It is more likely to occur in patients who experience prolonged sedation, have limited social interaction, and are unable to move, common among Covid-19 patients.
Studies, including one by a team at Vanderbilt University Medical Center, have found that ICU patients who experience hospital delirium are more likely to have cognitive decline in the months following their discharge from the hospital.
What is the recovery path?
Ups and downs are common. “It is not absolutely a linear process, and it is very individualized,” said Dr. Needham.
Perseverance is important. “What we don’t want is for patients to go home and lie in bed all day,” said Dr. Ferrante. “That will not help with recovery and will probably make things worse.”
Patients and their families must realize that fluctuations in progress are normal.
“There will be days when everything will be fine with the lungs, but the joints feel so sore that you cannot get up and do pulmonary rehabilitation and you have some setbacks,” said Dr. Putrino. “Or his lung attention is working well, but his cognitive fog is causing him anxiety and spiraling him, so he must drop everything and work intensively with his neuropsychologist.”
“It really feels like one step forward, two steps back,” he added, “and that’s fine.”
How long do these problems last?
For many people, the lungs are likely to recover, often within months. But other problems may persist, and some people will never fully recover, experts say.
A benchmark is a 2011 New England Journal of Medicine study of 109 patients in Canada who had been treated for acute respiratory distress syndrome or ARDS, the type of lung failure that affects many Covid-19 patients. Five years later, most had regained normal or near-normal lung function, but still struggled with persistent physical and emotional problems.
In a crucial test, how far patients could walk in six minutes, their median distance was approximately 477 yards, just three-fourths of the distance the researchers had predicted. The patients ranged in age from 35 to 57, and although younger patients had a higher physical recovery rate than older patients, “none of the groups returned to predictable normal levels of physical function at five years” , the authors wrote.
Patients in the study had ARDS from a variety of causes, including pneumonia, sepsis, pancreatitis, or burns. They had an average stay of 49 days in the hospital, including 26 days in the ICU and 24 days on a ventilator.
Research led by Johns Hopkins Dr. Needham found that “patients have prolonged muscle weakness that lasts for months or more and that muscle weakness is not only limited to their arms and legs, but also to their respiratory muscles,” he said.
Another study by Dr. Needham and colleagues found that approximately two-thirds of ARDS patients had significant fatigue one year later.
Psychological and cognitive symptoms may also persist. About half of the patients in the 2011 Canadian study reported at least one episode of “depression, anxiety, or both diagnosed by a doctor between two and five years of follow-up.” And a study of patients treated in the 2003 SARS outbreak, another type of coronavirus, found that a year later, many had “worrying levels of depression, anxiety, and post-traumatic symptoms.”
What are the consequences?
Among other things, patients may have trouble getting back to work. A team led by Dr. Needham found that nearly a third of the 64 ARDS patients who followed for five years never returned to work.
Some tried but found they couldn’t do their job and stopped working entirely, Dr. Needham said, and others “had to change their occupation, specifically for a job that is less challenging and probably less paid.”
Dr. Chen said he was concerned that the long-term consequences of Covid-19 could resemble the chronic health effects of the AIDS epidemic or the September 11 attack in New York City. “A new disease that is severe or a catastrophic event causes symptoms that last a long time,” he said. “This is shaping up to be something that can be worse than both.”
There may be “hundreds of thousands of people who will be affected by these chronic syndromes that can take a long time to heal, and that will be a great health problem and also a great economic problem if we do not deal with them,” said Dr. Chen .
What do hospitals do to help patients when they return home?
Covid-19 patient recovery programs are springing up at Mount Sinai, Yale, Johns Hopkins and elsewhere, offering telemedicine consultations to patients and sometimes in-person appointments.
Some patients require medications to help with shortness of breath, heart problems, or blood clotting. Dr. Ferrante said that people should discuss medications with their doctors because some medications given to them in the hospital may not be appropriate for patients to continue at home.
But medication may not be necessary, or it may not work, for many problems. Practice breathing exercises and use a spirometer, a device that measures how much air a person can breathe and how fast it can improve breathing problems. Physical therapy can help restore muscle strength, movement, and flexibility. Occupational therapy can help people regain the ability to do everyday tasks, such as shopping for groceries and cooking. Speech therapy can help with swallowing and vocal cord problems.
According to experts, physiatrists, doctors who specialize in physical rehabilitation, are increasingly in demand. Also neurologists and mental health therapists.
“I think the main conclusion here is that post-Covid care is complex,” said Dr. Putrino. “It’s hard enough rehabilitating someone with a broken leg where one thing is wrong.”
“But with post-Covid care,” he said, “these are people with some cognitive, physical, lung, heart, kidney, trauma, and all of these things have to be managed properly.”
