hayley cagan kamis
Moving Beyond Sepsis
Updated: Mar 28, 2020
Based on the original article published in "Faces of Sepsis" for Sepsis Alliance
On a Monday in Boston, I mentioned to my sister and my best friend that I could feel myself getting sick — REALLY sick — but couldn't identify any specific symptoms other than extreme fatigue and a sense of impending doom.
After returning to New Jersey later that week, I visited my Rabbi on Thursday to tell him that I felt something "big" was going to happen, but I didn’t know what – if anything - to do about it. After much discussion, I decided to send my intentions out into the universe: "Whatever it is you need me to do, I’m ready." I think I might have actually said, “Bring it on."
Friday night, in the less-than-comfort of my own home, the epigastric pain began, and per the Universe, it most definitely was on.
Saturday I found myself in the ER with gallstones, potentially one stuck in my bile duct (the pancreas and gallbladder share such a duct - Sepsis and Gallstones). After two days of pain management, I was transferred for a specialized endoscopy to confirm that the stone had moved through. Rather than proceeding to the surgery suite from there, pancreatitis took hold instead, and that’s when my body began to shut down and enter septic shock.
I happen to be somewhat well versed in sepsis. Not only do I work in health care, as well as at the hospital in which I was admitted, but I also have an uncle who died from the fast-moving killer that is septic shock. I don’t remember much about my transfer to the ICU that followed, the two-week stay in a window-lined end unit, or having been intubated and attached to a ventilator. The thing is, my advanced directive clearly states my wishes declining tube-dependence at all costs. Everyone – my family, my friends – are well aware of my feelings and thoughts on the subject, as well as my stubborn “no means no” stance. Apparently I was clear-headed enough to make the decision, given support and input from my husband, my mother, the doctors and the nurses whom I do indeed trust with my life. Although I don’t remember making the decision, these folks prepared for if, and when, I woke up, by gathering multiple witnesses willing to confirm that the choice was indeed mine…and I am most grateful.
What little I do remember revolved around the visual characteristics of my visitors: who wore what, if my vision was distorted (at times my view seemed to be through the bottom of a glass bottle, in black-and-white, sepia colored, and at other moments more clear), and where these visitors stood or sat in the room. It’s strange what the brain will do to cope in traumatic situations, and what senses it anchors to for encoding information into memory. For example, I was aware that I was unable to speak, but could still problem-solve as the speech-language pathologist that I am, trying alternative means of communication that I might suggest for patients in my situation. Nevertheless, the reason for my inability to communicate remained a mystery which I never considered solving. I believed I was just too tired to respond or interact, but I suspect my brain was maintaining strong, protective distractions from the reality of literally living my worst nightmare.
And then, of course, there were the odd story lines my mind created to fill the void of “why”: I was on a Vietnamese reality show. I must have moved to a Jewish Community Center apartment complex (do such places exist?). There was a food court just outside of my room (specifically to the right). I was at the library, or maybe it was a cruise ship? But the irritating, continuous blast of light and sound from the television was uncontrollable, and the only logical reason was that I must have lost remote. For the most part, the closest I came to comprehending that I was in a medical environment was the belief that I was a patient in a hospital on an American army base in a Latin American country.
In stark contrast, my healthcare ethos were in full swing. I recall a band of residents standing in my doorway, discussing their detailed assessment of the previous patient visit – completely unaware that such talk was agitating and anxiety-provoking. In a brief moment of clarity, I wondered why they were so insensitive, as well as questioned how they would blatantly violate HIPPA (healthcare privacy laws) right here in the middle of a hospital floor (hence, one of the rare instances I understood where I was).
On another occasion, a grey-haired doctor felt the need to position himself directly in front of me and declare, “she’s obese — what do you expect?”; that certainly caught my attention and lodged itself in my temporal lobes. Even a nursing assistant hid in the corner of my room, out of sight of the nursing station, using her cell phone to call prospective landlords to search for a new apartment. Not to mention the aide who was constantly irritated when I moved or flinched or breathed in a way that didn’t make her job easy. Even the speech therapist who assessed my swallowing safety the previous day had a strong dose of attitude: I had no recollection of ever having met her (keep in mind I was slowly awakening from an induced coma), yet the next day lectured me about the dangers of drinking thin liquids, such as the cup of water directly in front of me, and that I "should know better." It was humiliating and condescending as both a patient and a professional.
Still, for every terrifying and crazy thought, there were many that were reassuring. My co-workers in Integrative Medicine visited me at least daily, and their gentle support and caring touch were more soothing than I previously understood being on the other side of that equation. There were nurses who gently washed my body and brushed my hair, reassuring me that I wasn’t alone. And the first person whom I truly remember by sight and name, John the radiology technician (whom I would get to know very well over the coming months), treated me with such respect, kindness and support that I can never imagine having endured or surviving the experience without him.
This first of three hospitalizations lasted one month. My department held a daily moment of prayer while I was unconscious in Intensive Care, as well as other random prayer groups — so many lists of people I didn’t know — who included me in their hearts and healing thoughts. Friends and colleagues from nursing, medicine, and even the head chef checked in regularly. I couldn’t have asked for a better team of doctors or supportive family and friends. After awakening from the Twilight Zone with a few extra tubes, drains and mechanical devices, I definitely felt the gentle, comforting "bubble" of the people who carried me through - a state of being for which I still haven't found words to fully describe.
I am most thankful for having lived through what the doctors warned my family was a 50-50 chance of survival. I realize how truly blessed I am that my caregivers had the insight to implement a sepsis protocol long before it was too late for improvement, that my body was able to hold on and allow itself to heal, and that I always had a loving presence by my side, be it those dear to me, strangers, clergy from a variety of faiths, healthcare professionals, and without a doubt a Higher Power. That being said, I haven’t survived unscathed.
The PTSD I experienced was unexpected, and I was completely unprepared for its presence (Sepsis and Post-Traumatic Stress Disorder). Whereas my family and friends were eager to put this adventure in medicine behind them, I was still trying to wrap my head around what had happened. Two weeks of my life were, for all intents and purposes, unaccounted for - a loss of awareness that had the most profound effect on my being. I felt as if I was the only one absent from the most impactful experience of my life. Those around me didn’t want to talk about my time warp, rather wishing to move on and avoid revisiting their respective nightmares. But I needed to know the details so that I could accept it and put it behind me as well.
Despite my observations and concerns, the cognitive changes that followed were frequently discounted or dismissed by my doctors, friends and family. As a speech pathologist and cognitive rehabilitation therapist for many years, I've worked with individuals whose traumatic brain injuries (TBI), mild head injuries/concussions, or anoxic events led to changes in their thought processes. Now I could truly empathize with their descriptions, knowing first hand what it was like to confusingly trudge through brain fog in activities that had only a few months before been completely effortless. In addition, I understand all too well that neuropsychological testing is an unreliable indicator of cognitive changes without a baseline comparison: despite falling within a “normal” (albeit low-normal) range of functioning, my attention and memory and executive function skills were not the same as my previous normal – a common situation that continues to challenge neuropsychologists, cognitive therapists, rehabilitation specialists and educators.
In addition, I began having auditory hallucinations - best described as a radio receiver stuck between stations (for those of us old enough to remember what that sounds like). It can be triggered while sitting near ceiling fans, exhaust systems, air conditioners, or the complex and noisy backgrounds of large crowds in small spaces. Now that I've learned about the quirky neurological behavior that can follow anoxia as well as trauma, it barely registers in my conscience. Still, whereas I fully understand that I’m not “hearing voices”, it can catch me off guard at times.
It’s been six years since my septic event, and I still live with many of these symptoms. I’ve accepted that my current status is, indeed, my new normal, and I no longer mourn the loss of the person I once was, either physically or cognitively. Luckily I came into this situation with compensatory cognitive and language strategies that have served me well not only as a professional, but now as a survivor, too. The same is true of the reverse: understanding the first-hand benefits of such strategies, I have a greater appreciation for the process of finding appropriate and effective approaches for the clients I serve. I generally have good days and bad days like everybody else, but overall I’m appreciative of having “days” at all.
In retrospect, I believe the transition home would have been less stressful if my healthcare providers had considered the potential changes in the quality and rhythm of life following sepsis. I have no doubt that clinical education regarding post-septic challenges would do much to improve outcomes, compliance with discharge instructions and follow-through, patient satisfaction, and professional understanding. If emotional and psychological supports are systematically incorporated during physical recovery, as well as honest, frank conversations during the more acute phases of rehabilitation, many families and patients could avoid much of the unexpected heartache and fear that coexists with survival. As an Integrative Medicine Practitioner, I also understand the importance of allowing emotions to come and go, and that stress-management and relaxation tools are invaluable for healing through trauma. When we accept where we are at any given moment, trusting that time allows for growth and recovery, complementary and alternative approaches to healing can help us do so with ease and minimal suffering.
I was lucky enough to begin, traverse through, and move beyond sepsis as my defining moment in life. Not everyone does. Nonetheless, having actually experienced the uncertainties and challenges of being a patient with sepsis, I understand that it’s hard to truly feel understood. Because of this I share my story. You are not alone. You are not crazy. And you will get through this, one way or another. There are so many of us who do get it, and supporting each other is the most meaningful way we can use our "septic wisdom" to assist fellow survivors, their families, and the professionals who treat us.