My name is Steve Edmonson, this is my experience after sepsis, which means, it is also about post-ICU Syndrome, or PICS as it has come to be known, something that I’ve had for the past 15 years. I’m always a bit surprised that so many people are unaware of its existence, or think that this condition is rare, because it is estimated that out of the 5 million patients that leave the ICU each year in the U.S. alone, 2.5 million of them will have PICS.
I have spent many years with profound symptoms related to all three of the following: Cognitive function issues, Post Traumatic Stress Disorder/Depression, and Physical damage that occurred while in the ICU.
Back in 2010 I was hospitalized for a Gall Bladder infection which turned into peritonitis post-surgery and then became sepsis. I was in a coma in the ICU for a month, during which time I was vented for about a week. I was in delirium for my entire hospitalization and was never aware that I was in the hospital.
My wife was told by doctors that it was highly unlikely that I would survive, and one doctor told her that if I lived, I would certainly be in a vegetative state for the remainder of my life.
The following description of my experience only scratches the of the surface of my journey, omitting most of the gory details and the terrifying labyrinthian rabbit-hole of nightmarish psychological trauma, and loss of self that that occurred both in the ICU and afterward. I sometimes say that I have been broken by the experience, in the way that one might break a horse. I would describe my delirium as being in a surreal world in which I believed that my body was being mutilated during extended torture while I was being hung by my arms, all of which I can remember in vivid detail. It often felt as though I were in a Hieronymus Bosch painting. Rather than talk about the delirium itself, I would like to share a bit of what life has been like for me post-ICU.
When I got home, with no follow up or rehab of any kind, I was very confused, unable to focus on anything. I literally had to relearn everything, as none of it seemed more than vaguely familiar. I learned how to bathe myself, soap first, rinse last. It took me some time to learn how to tie my shoes, and brushing my teeth was so confusing that to this day I am still afraid to try my electric toothbrush, which I had been using for decades.
For the first few years, I had severe pain in my arms and shoulders, and couldn’t lift a cup to my mouth without dropping it. I could no longer play the guitar, which had been my livelihood for that past forty years (it would later be revealed that while pulling against my restraints, I had severed many of the tendons in my arms, ruptured a bicep muscle, and completely destroyed the bursa and rotator cuffs in both shoulders.) After eight years, my HMO finally agreed to do the imaging that revealed the extent of my injuries, (most of which could no longer be repaired.) I also suffer from a few other physical issues that seem to be almost universal among patients with PICS, including muscle weakness, dysphagia, or difficulty swallowing, often choking when eating, and a loss of stability or balance.
As I slowly became more aware, I felt like I was now a very different person. Many of my likes and dislikes had changed. Music had always been a huge part of my daily life. Now, I find that music can no longer hold my interest or attention, and that I can no longer find comfort, joy, or solace from listening to it.
I still have trouble concentrating, and tasks that require multiple steps, or multi-tasking, are daunting, and often nearly impossible. My short-term memory is unreliable. It is very difficult for me to read fiction in particular. I have only read one book in 15 years, as opposed to before, when I was always reading something. My problem seems to be a memory issue, as I have to read each sentence and paragraph repeatedly in order to keep the story line alive in my head. I am also sometimes unable to think of the correct word to describe a common object, or I will sometimes substitute a completely unrelated word in place of the correct one.
I used to be a very outgoing and social person with many close friends. For the first seven years post-ICU, I would only leave my house for medical appointments, and would not attend social gatherings because even the thought of being around others would cause me extreme anxiety. In the ensuing years, perhaps due to my having avoided them, most of my friends have quit calling, and I am only in touch with a couple of them now. Covid provided me with a great excuse for my self-isolation, but I’m still somewhat anti-social to this day.
I found that I was much quicker to anger than I had been before, and would often lash out at those around me. I only later learned that my, as yet undiagnosed PTSD, was likely the cause of my anger as well as my almost constant state of anxiety. It took me some years to realize that though my PTSD can become “triggered,” or exacerbated by certain situations or stimuli, I am also perpetually in a state of anxiety, feeling as though there were an existential threat looming at all times.
All of these changes, along with the confusion from the cognitive impairment can often lead to depression. Like most PICS patients, I have struggled a great deal with guilt and self-loathing. Guilt over what we have put our loved ones through during the course of our illness, guilt for being unable to recover no matter how hard we try, and self-loathing because we inevitably blame ourselves both for getting ill, and for being unable to recover.
I would like to thank Dr. Wes Ely (who I understand is being honored at this conference,) and others at Vanderbilt University for helping me to understand what had happened to me after eight years of being told it was all in my head, it absolutely saved my life! Thanks to Dr. Ely, and others like him, there are now protocols like early mobility and the A through F bundle that can be implemented in the ICU that will lower the incidence of PICS, though some will still get it.
I have yet to have a primary care physician who has ever heard of PICS, and I have had six just since 2020. There is an urgent need for more understanding of what PICS is, not only in critical care, but in the entire medical community, as well as among the general public. There is still no International Classification of Disease (ICD) code for PICS, meaning that cases of PICS aren’t reported or tracked, and that if a doctor wants to recommend treatment for any of its symptoms, they must diagnose it as something else in order to refer a patient for treatment (in part because without the code, no insurance will cover it.) According to the NIH, not having a code also severely limits study of the condition as there are no global statistics. Long-COVID, which has been around for a fraction of the time that PICS has, already has an ICD code.
I have faced severe illness and serious injury before in my life, but this experience has been the most difficult by far due to its multi-faceted nature, involving cognition, mental health and injury all at the same time. Perhaps I should mention here that my HMO still denies that anything happened to me while I was in their ICU, and one of their neuropsychologists told me that she doesn’t believe PICS is real. Whenever the opportunity presents itself, I speak publicly to advocate for more awareness of PICS because I want to spare others what I have gone through, or at least make things less difficult for future PICS patients. In telling my story, I am not seeking anyone’s pity or sympathy, only more awareness.