Hayley K.

Survivor

Posted on January 5th, 2018

Monday I told my sister and best friend that I could feel myself getting sick — REALLY sick — but didn’t have any symptoms I could pin down. Thursday I visited my Rabbi to tell him that something big was coming, and I didn’t know what to do. So I just put it out there to the universe: whatever it is you need me to do, I’m ready. Friday night the epigastric pain began.

Saturday I was in the ER with gallstones, potentially one stuck in my bile duct (the pancreas and gallbladder share such a duct). (Sepsis and Gallstones) After managing my pain for two days, I had a specialized endoscopy to clarify if the stone was still in my duct, after which I was scheduled for a surgery that wouldn’t take place for another 5 months. 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 the hospital in which I was admitted, but I have a close relative who died from the fast-moving killing machine that is sepsis. I don’t remember much about the two weeks in ICU, and have no recollection of being intubated or put on a ventilator. I have a very clear living will indicating my desire for no tube-dependence if unable to make my own health decisions. Everyone – my family, my friends – all know my feelings and thoughts on the subject. Apparently I was clear-headed enough to make the decision, given support and input from my husband, my mother, and doctors and nurses that I do indeed trust with my life. Although I don’t remember making the decision, these folks know me well enough to have multiple witnesses attest to the fact that the choice was indeed mine…and I am most grateful.

What little I do remember revolved around people and visual cues: who wore what when they visited, 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 other terms more clear). It’s strange what a brain will do to cope in such traumatic situations. Although I was aware that I was unable to speak, and I was even able to problem-solve as the speech-language pathologist that I am in regards how I might assist patients, the reason for this inability to communicate rarely came to my attention. At times I assumed I was just too tired to respond or interact.

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 was on a cruise ship. I must have moved to a Jewish Community Center (JCC) apartment complex (do such places exist?), or just a JCC in general, and there was a food court right outside of my room. I was at the library. And the constant blast of light and sound from the television was uncontrollable because I couldn’t find the remote, because I would never choose to have it on just for background noise. 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, I can most clearly remember the group of residents standing outside of my room, in my doorway, within full earshot of their assessment of the previous patient they had just visited. The conversation made me increasingly agitated, probably because I didn’t want to know that I was in the ICU. I also remember a grey-haired doctor standing in my room saying, “she’s obese — what do you expect?” There was a nursing assistant who hid behind the corner of my room, making phone calls in an attempt to find a new apartment. And there was another tech who was constantly angry with me for moving or resisting or breathing in a way that didn’t make her job easy. There was even a speech therapist who apparently completed a swallowing evaluation with me that I did not recall in the least, and the next day lectured me about how I wasn’t allowed to drink thin liquids such as the water that was put in front of me on my tray.

But 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 ever understood being on the other side of that equation. There were nurses who gently washed my body, who reassured that I wasn’t alone. And the first person whom I truly remember by sight and name, a radiology tech, treated me with such care and support that I can never imagine having endured and survived the experience without his setting the tone of my awakening.

That hospitalization lasted one month, the next only one week, and then finally I was stable enough to have the surgery that brought me to the medical center in the first place. During that time, I was overwhelmed to learn about the daily moment of prayer that my department held for me while sedated and unconscious, as well as the prayer lists — of people I didn’t even know — that included me in their hearts and healing thoughts. Some nurses were rough and gruff, others were sweet and kind. And I couldn’t have asked for a better team of doctors or supportive family and friends. My worst nightmare had come true, and they all carried me through it in a way I never imagined possible.

I am grateful for having survived. 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 maintain a status quo and allow itself to heal, and that I always had a loving presence by my side, be it those dear to me, strangers, clergy, 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. I lost two weeks of my life, time that had the most profound effect on my being but one in which I felt like I hadn’t participated. There came a time when those around me didn’t want to answer my questions out of concern for my emotional well-being, but I needed to know the answers so I could put it behind me as well.

In addition, the cognitive changes that followed were frequently dismissed by experts and laymen alike. As a speech-therapist for many years, I had worked with a large population of individuals who had experienced traumatic brain injuries (TBI), mild head injuries or concussions, and those whose anoxic events led to changes in their thought processes. For the first time in my life, I could empathize with their symptoms, because I now knew first hand what it was like to trudge through brain fog in activities that had only a few months before been completely effortless. In addition, I understand all too well that a neuropsychological battery would not prove a good indicator of cognitive changes, because despite likely falling within a “normal” range of functioning, my attention, memory, and problem-solving skills would never be the same as my previous normal. I’ve also been left with some auditory hallucinations in the presence of ceiling fans, exhaust systems, or even complex noise backgrounds. Whereas I’m confident and comfortable in that I’m not “hearing voices”, it can still be unsettling at times.

It’s been almost five years since my septic event, and I still live with many of these symptoms. I’ve accepted that current status is, indeed, my new normal, and I no longer mourn the loss of the person I once was, either physically or cognitively. I have good days and bad days, but overall am appreciative of having “days” at all. The transition back to my daily life would have been much smoother and less stressful if my healthcare providers were either more educated in the potential changes in quality of life following sepsis, rather than preoccupation of a perceived lack of appreciation on my part for having my physical life preserved. If emotional and psychological supports had been initiated during my physical recovery, and honest, frank conversations were had during the more acute phase of my rehabilitation, it could have saved a lot of heartache and fear for myself and my family. As an integrative medicine practitioner, I have the luxury of also understanding how important it is to allow emotions to come and go, that stress-management and peaceful resolution tools are invaluable in times of anxiety, and that we can only heal when we accept where we are at any given time. Because of this I share my story. You are not alone. You are not crazy. And you will get through, one way or another.