I spent 12 days on a ventilator in 2015. There’s a post-COVID crisis on the horizon.
“Most of my patients don’t walk back with me,” said the nurse leading my wife and me to the neuro ICU of a Birmingham, Alabama, hospital. Indeed, I had no mobility issues at all, but rather was being admitted for an infusion therapy to hopefully reverse the onset of myasthenia gravis symptoms I was experiencing a few weeks after surgery to remove a thymoma.
It was February 2015. I could not swallow, and could only speak a few words before a severe lisp and slur took over. The neurologist said the IVIg treatment and observation would take a few days to complete.
It would be almost seven weeks before I walked out.
Most of that time I was in ICU. More significantly, I spent 12 days on a ventilator as a myasthenic crisis kicked into overdrive. Five years later I still deal with the fallout.
That is why I’m concerned about the thousands of COVID-19 survivors who, while thankful to be alive, will face ongoing issues related to the delirium they experienced in the hospital. I’m encouraged by the increased reporting on the experiences of survivors, and hopeful it sheds light on this complication that can understandably be overlooked in the fight to save a patient’s life.
ICU delirium is most easily described as confusion, a state in which the patient is unable to discern what is real in the world surrounding them. I often describe it as being unmoored from reality with no way of distinguishing between what the eyes see and what the mind conjures. The stories may seem far-fetched and obviously unrealistic to those who hear them later, but those experiences are very real to the patient in the moment.
To this day I can recall some of those experiences as clearly as I can events that have actually taken place. Perspective is the only way I know the difference. Following are a few of the scenarios I “lived through” while hospitalized:
- The ICU wing was turned into an event space one night, with members of the public walking through to watch movies and socialize.
- I and other patients were part of an elaborate museum exhibit. My room featured a life-sized WWII pilot figure, along with a couple of country music legends.
- A family that owned a Mexican restaurant kidnapped me and was holding me in a room (in my hospital bed, of course) above the kitchen. They took good care of me.
- At night the entire wing was disassembled like a movie set, with the nurses’ station carted off to storage. I was fearful they were forgetting about me and leaving me there alone.
- A local attorney’s wife (who is indeed a nurse in real life) didn’t like the care I was being given so she orchestrated an escape and brought me back home. She and others took care of me in an upside-down house.
The upside-down house story is the most vivid one. It has lots of details, many of them linked to actual people and events from my life. This episode and others underscore the power of the mind and what it’s capable of under extreme stress. In his excellent book The Storytelling Animal: How Stories Make Us Human, author Jonathan Gottschall says, “We are, as a species, addicted to story. Even when the body goes to sleep, the mind stays up all night, telling itself stories.”
These are not dreams. Discounting these experiences as such is like saying riding a roller coaster is the same as being thrown from one at its peak in a free fall that doesn’t end.
I’ve learned from reading some of the solid research on delirium that there are ways to recognize it and treat for it both during hospitalization and after. However, the circumstances surrounding COVID-19 make this extremely difficult.
- Contact with family is an important part of keeping a patient grounded in reality, but families are isolated from their loved ones during the hospital stay.
- Health care providers are fighting a pandemic. I’m sure it’s hard to look for signs of delirium when you are trying to keep so many people alive in the face of overwhelming odds.
- Families are reunited with loved ones they haven’t seen in many days, often weeks, and therefore have little understanding of what the patient experienced in the hospital.
- With so much focus on surviving the physical, patients themselves don’t fully understand the mental repercussions of what they endured. (I know I didn’t.)
This is a perfect storm of circumstances that could very well have an enormous impact on our society for years to come. I believe we’ll see this manifested in strained relationships, increased drug and alcohol abuse, a drop in productivity, and a general struggle for many to return to the life they knew pre-COVID.
I’m no public health expert, but I think we have reason to be alarmed. The wave of post-traumatic stress disorder (and that’s really what it is) coming in the pandemic’s wake has the potential to leave lasting scars on individuals, families and communities. And that ripples to a national impact we could be dealing with for a generation.
I’m thankful for the reporting surrounding this issue, and hope it continues. I know it’s difficult to have yet another national dialogue when there is so much for us to be concerned with already, but this one merits the attention of a national crisis in the making.
Originally published at https://medium.com on June 24, 2020.