Josh Wortman had been battling the coronavirus for over a week in the intensive care unit of Peconic Bay Medical Center in Riverhead, N.Y., when his mind descended into terror.
Nurses for Wortman, who was unable to receive visits from his wife and 6-year-old son, had posted a sign on his door with information so they could help make him feel at home. “Josh does yoga, he loves Pink Floyd,” the sign read. One night, hoping to cheer him up, the nurses decided to turn on some of the band’s hits. But the well-intentioned move backfired.
“At first I thought, ‘cool music,’” Wortman tells Yahoo Life. “But then I was just in this delirium ... this dystopian world.” He’d been rushed to the hospital on March 20 and had endured an ice blanket to lower his temperature and intubation to improve his breathing. But despite what he now recognizes as “exceptional medical care,” he couldn’t fight the feeling that he was slipping away. “I’m in the dark ... in restraints and ‘Dark Side of the Moon’ is playing,” he says. “And I thought, “I need to get this [tube] out.’”
Confusion, he says looking back now, had been mounting for days. At many points, Wortman couldn’t figure out what state he was in; he came to believe (wrongly) that he had a roommate. He felt that he was “fighting demons or Mordar”; that he was in a sci-fi movie or stuck in a spaceship. But now, with Pink Floyd playing, he felt sure he was going to choke to death. So over the course of three hours, he painstakingly freed his arms from the Velcro restraints, reached his tube and did the unthinkable. “I ripped it out,” he says.
Unbeknownst to him at the time, Wortman — who is now recovering at home — was experiencing what’s known as ICU delirium. Characterized as “a serious disturbance in mental abilities,” it is a terrifying suspension of reality that as many as 80 percent of patients put on mechanical ventilation experience. Loss of memory, decreased awareness of surroundings, paranoia and hallucinations are just a few of the many ways the condition manifests.
Little research exists thus far on how many coronavirus patients have experienced it, but anecdotal evidence paints a dark picture. In a short documentary on the topic, multiple COVID-19 survivors told the Atlantic they felt like they were living in a nightmare. One woman, while getting an MRI, became convinced the nurses were putting her into an oven; another hallucinated that he was attending his own funeral.
Dr. Lakshmana Swamy, a physician in the ICU of Boston Medical Center, is one of many doctors who has seen delirium in COVID-19 patients firsthand. “It’s especially common for people who are on the ventilator and people who are in the ICU for a long time, which is of course why it’s so relevant for COVID,” Swamy tells Yahoo Life. “These are some of the sickest patients. ... So in many ways, that’s a setup for delirium.”
As I reflect on my week on COVID service, I did not expect so much delirium in these patients. Is it a function of the disease or the lack of SATs for fear of extubation when we cant get in the room quickly? #COVID19 #ICULiberation
— Anita Reddy (@AnitaJReddy) May 18, 2020
Swamy says there are typically two ways that delirium manifests — a patient appears either hyperactive (e.g., agitated, thrashing, restless) or more passive (withdrawn, apathetic, dissociated). Doctors have found that the most effective way to reduce the confusion and fear that’s fueling both is to have family and friends visit and reassure the patient that things are fine. Not having that option, he says, has made delirium in COVID-19 patients worse. “Family is the best medicine, and it’s not possible,” he says. “FaceTime is not the same.”
Typically, he says that patients with pneumonia who need a ventilator for a few days may not experience delirium. But at this point, he assumes “pretty much every COVID patient” will experience it. It’s not difficult to understand why, says Swamy. “You’re sedated, you’ve lost all control of your body,” he says. “Strangers are coming in who are wearing all kinds of equipment and putting needles in you and doing all kinds of things, and you have no say in it.” For patients’ brains, he says, it’s akin to abuse. “It’s like they’re being tortured except that it’s for their own good,” says Swamy. “But they don’t know that.”
Dr. Ahmad Ramadan, a neurologist in the Neuro Intensive Care Unit at Henry Ford Hospital in Detroit, is studying the cause of this condition. “It is believed that SARS-CoV-2, the virus responsible for COVID-19, can access the brain via the nasal mucosa and then spread from neuron to neuron via synaptic transmission,” Ramadan tells Yahoo Life. “The virus can therefore theoretically invade the limbic system, that part of the brain that is involved in behavior, memory and emotions. This can cause patients to have memory deficits, become delirious or experience behavioral changes.”
Ramadan says other viruses have proved capable of invading nerve tissue (a phenomenon known as neurotropism) — including not only other coronaviruses such as SARS but also herpes virus, West Nile virus, HIV and rabies virus. Although these viruses may trigger delirium, experts have found that environmental and medical aspects of ICU stays — such as sedation, lack of sleep and ventilation — can all contribute as well.
Amanda Grow, a mom of three in Salt Lake City, says she believes all three contributed to the delirium she experienced while in the ICU due to an amniotic fluid embolism (a rare pregnancy complication in which the amniotic fluid enters the bloodstream). Although it’s unrelated to the coronavirus, she says she sympathizes with the stories she’s seeing of those experiencing it now.
“It’s different than COVID-19 because mine involved a new baby, but I think there is just that terror of like, I don’t really know where I am. I didn’t plan to become ill,” she says. “I think the combination of the trauma and the drugs really does reduce your memory.”
Grow, who spent three weeks in the hospital, says her time there is punctured by feelings of shame about her confusion. “My first memories are just kind of this dark place,” she tells Yahoo Life. “I felt like I was trying to wake up from a bad dream, and I couldn’t wake up.” Intubated shortly after giving birth to her son (who is now 2), she says she felt sure that the tube was going to kill her and was “thrashing about” trying to remove it.
Over the course of her time there, the delirium got progressively worse. When asked if she’d just had a baby, Grow said no (“I couldn’t even remember being pregnant”). When told that her family had created a Facebook page for people to track her progress, she assumed it meant she was being followed “by millions.” After a friend came to visit and discussed her new cat, she saw “cats lurking in the corner” all night, followed by swarms of mosquitoes. “My brain was spinning at a thousand miles an hour,” she says.
At one point, a respiratory therapist helped coach her on breathing, after which she imagined that if she didn’t do it right, the medical staff there would kill her. “I had this intense fear every time that blood pressure cuff inflated, that if I didn’t keep my heart rate under control, they were just going to get rid of me,” she says.
One of the things that helped Grow most was having her family to reassure her that things were OK. She worries about coronavirus patients who don’t have the same. “You have this trusted, recognizable face to say you’re safe: Everyone here is trying to save your life, and nobody’s trying to kill you,” she says. “If you don’t have that and it’s only strangers, then I think the delirium of patients currently in the hospital is going to be so much more terrifying.”
Katarzyna Kotfis, an assistant professor at Pomeranian Medical University in Szczecin, Poland, who studies the phenomenon, wrote a paper in late April arguing just that. “Human isolation, extended time away from family and other loved ones, and other elements of care all form what could be construed as a delirium factory that medical teams must address,” she writes. Kotfis has urged medical professionals to make “delirium prevention” a priority.
In an email with Yahoo Life, Kotfis elaborates on her concerns. “[Since] the medical staff is dressed in PPE, patients cannot see their faces and hear their normal voices. The normal staff-patient interaction that orientates them and puts the situation and the hallucinations into perspective is limited,” she tells Yahoo Life. “Additionally, patients experience a greater degree of isolation as care is clustered and movement in and out of the patients’ rooms is minimized. The visitors, family and friends are not allowed to come to see the patient and comfort them during this severe time.”
Kotfis notes that the condition can occur in individuals with no previous neurological problems and that it has the potential to cause “Alzheimer’s-type dementia” once a patient is released from the hospital. Other research has shown that the trauma of the experience can prompt mental health issues through a condition known as post-intensive-care syndrome. Some of the symptoms of delirium can linger even after the ICU. In a now-viral tweet, one professor shared an example — losing his secondary language fluency after the ICU.
I am a college professor recovering from COVID and am struggling with sudden loss of secondary language fluency.
If anyone knows someone studying cognitive impairments related to language deficits after COVID, can you let me know? Looking to read up on stress and language too— Alepo 🏳️🌈 (@Sciencing_Bi) April 22, 2020
The good news, Kotfis says, is that the condition is treatable. “If delirium is recognized early and treated effectively by mainly non-pharmacological interventions, such as providing comfort, friendly environment, pain control, orientation and physiotherapy, it is reversible and leaves the patient’s brain in a normal condition,” she says.
Swamy agrees. “Delirium is almost by definition a reversible thing,” he says. “People come out of delirium. It gets better.” He recommends that any loved ones currently concerned about their own family members ask nurses, who are most pivotal to delirium prevention, how you can help.
For Grow, who experienced both posttraumatic stress disorder and depression following her experience, she says that for survivors, patience is key. “It’s a lonely feeling, but you’re not alone in it,” she says. “So much of what you feel in recovery has been felt by so many others. It takes a long time to process trauma. Give yourself time, reach out for help. Just accept and feel every emotion as it comes.”
For the latest coronavirus news and updates, follow along at https://news.yahoo.com/coronavirus. According to experts, people over 60 and those who are immunocompromised continue to be the most at risk. If you have questions, please refer to the CDC’s and WHO’s resource guides.
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