Surviving the Coronavirus is just the beginning

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Coronavirus covid-19 infected patient’s hand closeup

Many patients affected severely by Covid-19 has realized one sad truth. Life after defeating the virus is the most difficult part to deal with.

Those saved through extreme medical interventions, including being attached to mechanical ventilators for a week or two, often suffer long-term physical, mental and emotional issues, according to a staggering body of medical and scientific studies. Even a year after leaving the intensive care unit, many people experience post-traumatic stress disorder, Alzheimer’s-like cognitive deficits, depression, lost jobs and problems with daily activities such as bathing and eating.

The first thing Simon Farrell can remember, after being woken from a medically induced coma, is trying to tear off his oxygen mask.

He had been in intensive care for 10 days, reliant on a ventilator just to breathe.

“I was trying to pull the mask off my face, and the nurse kept putting it back on,” he recalls.

When doctors woke him up, his body had fought off the worst of Covid-19 but he still needed oxygen to support his damaged lungs. And the 46-year-old father-of-two was suffering from such severe delirium he was trying to deny himself the oxygen he required.

“Try to stop me,” he remembers saying when nurses at Birmingham’s Queen Elizabeth Hospital said they would have to put his hands in boxing glove-sized medical mittens unless he relaxed.

“In the end, they had to tape my hands up. I was trying to tear the mittens off, I managed to bite through them, and they had to put new mittens on.”

It is not an unfamiliar story for anyone working in intensive care. The assault Covid-19 mounts on the most severely ill means patients are ventilated for longer, and require a deeper level of sedation, than the typical ICU patient.

That has produced “a lot of delirium, confusion, and agitation”, explains Dr. Kulwant Dhadwal, a consultant who runs the intensive care unit at London’s Royal Free Hospital.

“Usually if you have a surgical procedure, or normal pneumonia patients come to ICU, you wake them up and they’re less confused and less disoriented than this.”

“This particular group of patients was a lot more difficult to wean off the ventilator.”

Even when that process is a success, it is only the beginning of a long process of physical and psychological recovery. And now the UK has moved past the peak of the virus, attention is turning to the huge challenge – both in the health service and in the community – of rehabilitating Covid-19 survivors.

“Often rehabilitation is seen as a Cinderella service and not a priority,” says Sally Singh, professor of pulmonary and cardiac rehabilitation at the University of Leicester.

“But because of COVID, and the number of people that it has affected, the need is pressing. It has become a national priority – to support people to get better.”

A long road

Tens of thousands of people around the UK are now setting out on that journey.

Some came close to death in intensive care units, others needed less intrusive hospital treatment to help them through the worst. All of them have had their lives changed by Covid-19.

But for the most seriously ill patients in intensive care, rehabilitation begins well before they are woken from a coma. Physical and psychological support has to be there from the start. Even when a patient is asleep, nurses and therapists will move their joints and their bodies to make sure they don’t get too stiff.

“For example, we have an in-bed bike,” explains Kate Tantam, a specialist rehabilitation sister in intensive care at University Hospital Plymouth NHS Trust.

“Even if a patient is on multiple organ support on a ventilator, and on lots of drugs to keep them alive, we will still put them on a bike.”

“We bring it to the bed, and we can put their feet into it, and the machine can then do the work for you.”

ICU staff will also talk constantly to patients while they are deeply sedated, telling them where they are, and what is happening to them, and reassuring them that they are safe. It’s all part of the process of preparing them for the moment when they are woken up.

“Some patients do wake up saying, ‘I remember your voice,'” says Kulwant Dhadwal. “They wake up with some kind of memory.”

But the process with Covid-19 has proved even more delicate and difficult than normal, partly because so many ICU patients were on mechanical ventilators for extraordinarily long periods of time.

Many of them woke up profoundly weak, although some regained strength unexpectedly quickly.

“Usually when somebody’s been asleep for 40 days or more, it takes six weeks or longer for them to be totally free of the ventilator, to be ready to even start walking or standing,” Kulwant Dhadwal says.

“But some of these patients were making progress within a week, which we found very unusual, very specific to this disease.”

Another challenge in the immediate recovery from critical illness with Covid-19 is the severe inflammation.

Many patients can’t cope with a breathing tube inserted through the mouth because the larynx and the area above the vocal cords are badly swollen as part of the illness. That means doctors have often had to often perform tracheostomies, creating an opening in the neck to gain access to the windpipe, in order to remove the breathing tube that connects patents to the ventilator.

“You’ve got to look after the tracheostomy, it’s a wound in the neck,” explains Carl Waldmann, a consultant in intensive care at the Royal Berkshire Hospital in Reading.

“So, it was a long, slow process getting them off the ventilator. It might take them a week or two weeks or even longer.”

“I was nearly a goner”

And behind every observation lies a human story.

Abraham Raskin’s family were told in late April that it was unlikely he would survive. But on 12 June he finally left the Royal London Hospital after more than 50 days in intensive care, a tracheostomy, and a month in a medically induced coma.

“The very fact that I’m alive now is a miracle,” he says, “I was nearly a goner.”

On a video call arranged by nurses on 18 May, his family saw his face for the first time since he was taken into hospital in early April. He wasn’t able to say anything, but he did raise an eyebrow.

Abraham was severely delirious for some time after waking up. “I was talking all kinds of rubbish,” he says.

“Afterwards when I heard about what I was saying, I felt like I was mad or something. It’s not pleasant.”

But he is now back at home, still very tired, and following a basic exercise program planned from him by a physiotherapist. With support from family members, he can get upstairs to sleep at night.

“Some people can’t really walk anymore when they come out of this,” he says, “and some take months to recover. I hope I’m not one of them.”

Delirium

As many as three-quarters of intensive care patients who need mechanical ventilation to help them breathe will suffer from delirium. And the observations of many doctors suggest that delirium has been particularly acute, and hallucinations unusually vivid, for people who fall critically ill with Covid-19.

Delirium can be caused by the infection itself, and the fevers which accompany it. But it is intensified by the strong sedative drugs that have to be used to keep patients comfortable, and the unsettling environment of intensive care they find themselves in.

While patients are in a coma, and after they wake up and begin withdrawing from these drugs, they often experience frightening hallucinations and cling to unsettling beliefs about what is going on.

“Delirium doesn’t have a dreamlike quality,” says Dorothy Wade, the principal health psychologist in intensive care at University College Hospital in London. “Patients always say ‘it was completely real – I was just living in this terrifying alternative reality.'”

Doctors think that chemical imbalances prompt the brain to create its own explanation for why the body can’t move and the patient can’t speak. Often people think they’ve been kidnapped or tortured, or they think they’re in a prison cell about to be put on trial.

“They tend to feel that the nurses and the doctors and the staff are all in some conspiracy,” says Dorothy Wade, “that this is all part of a conspiracy to make money out of them by selling their blood or their organs.”

It means that psychologists like Dr. Wade try to step in as early as possible. It’s important not to argue with delirious patients, she says, but instead to try to offer reassurance about what has really been happening.

Simon Farrell left hospital relatively quickly after being taken off a ventilator, but he still recalls the vivid nature of the delirium he experienced.

“I remember Elliott, my younger son, coming into the room in PPE,” he says. “Now, that clearly wasn’t right. No children were allowed on the ward. The hospital was locked down. It didn’t happen.”

In his head at the time, though, he believed it to be absolutely true.

“You just feel it is what’s happening,” he says. “And there was a lot worse than that. That was a simple one.”