Health and wellness touch each of us differently. This is one person’s story.
In 2015, just a few days after I started feeling sick, I was admitted to the hospital and received a diagnosis of septic shock. It’s a life-threatening condition with more than a 50 percent mortality rate.
I’d never heard of sepsis or septic shock before I ended up spending a week in the hospital, but it nearly killed me. I was lucky to have gotten treatment when I did.
I survived septic shock and fully recovered. Or so I was told.
The emotional trauma of the hospitalization lingered long after I got the all-clear from the doctors who cared for me while I was in the hospital.
It took some time, but I learned that the depression and anxiety, along with other symptoms I experienced upon regaining my physical health, were symptomatic of post-traumatic stress disorder (PTSD) and were related to my near-death experience.
Post-intensive care syndrome (PICS), or the set of health issues that arise after critical conditions, isn’t something I’d heard about until two years into my battle with it.
But of the more than 5.7 million people admitted to intensive care units (ICU) each year in the United States, my experience isn’t unusual. According to the Society of Critical Care Medicine, PICS affects:
- 33 percent of all patients on ventilators
- up to 50 percent of patients who stay in the ICU for at least one week
- 50 percent of patients admitted with sepsis (like me)
Symptoms of PICS include:
- muscle weakness and balance issues
- cognitive issues and memory loss
I experienced every symptom on this list in the months following my ICU stay.
And yet, while my hospital discharge papers included a list of follow-up appointments to specialists for my heart, kidneys, and lungs, my aftercare didn’t include any discussion of my mental health.
I was told by every healthcare professional who saw me (and there were many) how lucky I was to have survived sepsis and recover so quickly.
Not one of them ever told me I had more than a 1-in-3 chance of experiencing PTSD symptoms once I left the hospital.
Though I was physically well enough to be discharged, I wasn’t completely well.
At home, I obsessively researched sepsis, trying to pinpoint for myself what I could’ve done differently to prevent my illness. I felt lethargic and depressed.
Though physical weakness could be attributed to having been so sick, the morbid thoughts of death and the nightmares that left me feeling anxious for hours after I woke up didn’t make any sense to me.
I had survived a near-death experience! I was supposed to feel lucky, happy, like a superwoman! Instead, I felt scared and grim.
Immediately after I was discharged from the hospital, it was easy to dismiss my PICS symptoms as side effects from my illness.
I was mentally foggy and forgetful, as if I was sleep-deprived, even when I had slept for 8 to 10 hours. I had balance issues in the shower and on escalators, becoming dizzy and feeling panicked as a result.
I was anxious and quick to anger. A lighthearted joke meant to make me feel better would result in feelings of rage. I chalked it up to the fact that I don’t like feeling helpless and weak.
Hearing “It takes time to recover from septic shock” from one medical professional only to be told by another “You recovered so quickly! You’re lucky!” was confusing and disorienting. Was I better or not?
Some days, I was convinced I’d gotten through septic shock unscathed. Other days, I felt like I’d never be well again.
Lingering health problems caused by coming so close to death
But even after my physical strength returned, the emotional side effects lingered.
A hospital room scene in a movie could trigger feelings of anxiety and cause a tightness in my chest like a panic attack. Routine things like taking my asthma medication would make my heart race. There was a constant sense of underlying dread to my day-to-day routine.
I don’t know if my PICS improved or I simply got used to it, but life was busy and full and I tried not to think about how I almost died.
In June 2017, I felt ill and recognized the telltale signs of pneumonia. I immediately went to the hospital and was diagnosed and given antibiotics.
Six days later I saw a burst of black in my eye, like a flock of birds in my field of vision. Completely unrelated to my pneumonia, I had a tear in my retina that warranted immediate treatment.
Retinal surgery is unpleasant and not without complications, but it’s generally not life-threatening. And yet, my fight-or-flight instinct was pushed all the way to flight mode when I was strapped to an operating table. I was agitated and asking several questions during the surgery, even while I was under twilight anesthesia.
Still, my retinal surgery went well, and I was discharged the same day. But I couldn’t stop thinking about pain, injury, and death.
My distress in the days after surgery was so extreme that I couldn’t sleep. I’d lie awake thinking about dying just as I had after my actual near-death experience.
Though those thoughts had decreased and I’d gotten used to the “new normal” of contemplating my death when I did things like get routine blood work, death was suddenly all I could think about.
It made no sense, until I started researching PICS.
Getting help for PICS
PICS doesn’t have a time limitation and can be triggered by almost anything.
I was suddenly anxious every time I was outside my house, whether I was driving or not. I had no reason to be anxious, but there I was, making excuses to my kids for not going out to dinner or to the neighborhood pool.
Shortly after my retinal surgery — and for the first time in my life — I asked my primary care physician about getting a prescription to help me manage my anxiety.
I explained how anxious I was feeling, how I couldn’t sleep, how I felt like I was drowning.
Talking through my anxiety with a doctor I trusted certainly helped, and she was sympathetic to my anxiety.
“Everyone has a problem with ‘eye stuff,’” she said, prescribing me Xanax to take as needed.
Just having a prescription gave me some peace of mind when anxiety would wake me up in the middle of the night, but it felt like a stopgap measure instead of a true resolution.
It’s been a year since my retinal surgery and three years since I was in the ICU with septic shock.
Thankfully, my PICS symptoms are minimal these days, in large part because I’ve been fairly healthy in the last year and because I know the cause of my anxiety.
I try to be proactive with positive visualization and disrupting those dark thoughts when they pop into my head. When that doesn’t work, I have a prescription as backup.
Patients need more support from our healthcare system after ICU stays
In terms of living with PICS, I consider myself lucky. My symptoms are generally manageable. But just because my symptoms aren’t crippling doesn’t mean I’m not affected.
I put off routine medical appointments, including my mammogram. And though I moved in 2016, I still drive two hours each way to see my primary care doctor every six months. Why? Because the idea of finding a new doctor fills me with dread.
I can’t live my life waiting for the next emergency before I see a new doctor, but I also can’t seem to get past the anxiety that keeps me from managing my healthcare properly.
Which makes me wonder: If doctors know a high number of patients are likely to experience PICS, with the crippling anxiety and depression that often goes along with it, following an ICU stay, then why isn’t mental health part of the aftercare discussion?
After my ICU stay, I went home with antibiotics and a list of follow-up appointments with several doctors. No one ever told me when I was discharged from the hospital that I might experience PTSD-like symptoms.
Everything I know about PICS I’ve learned through my own research and self-advocacy.
In the three years since my near-death experience, I’ve talked to other people who’ve also experienced emotional trauma following an ICU stay, and not one of them was warned or prepared for PICS.
Yet articles and journal studies discuss the importance of recognizing the risk of PICS in both patients and their families.
An article on PICS in American Nurse Today recommends that ICU team members make follow-up phone calls to patients and families. I received no follow-up phone calls after my ICU experience in 2015 despite presenting with sepsis, which has an even higher likelihood of PICS than other ICU conditions.
There’s a disconnect in the healthcare system between what we know about PICS and how it’s managed in the days, weeks, and months following an ICU stay.
Research points to a need for support and resources after hospital discharge. But making sure the patient has access to those things is lacking.
Likewise, people who’ve experienced PICS need to be informed about the risk of their symptoms being triggered by future medical procedures.
I’m lucky. I can say that even now. I survived septic shock, educated myself about PICS, and sought the help I needed when a medical procedure triggered PICS symptoms a second time.
But as lucky as I am, I’ve never been ahead of the anxiety, depression, nightmares, and emotional distress. I’ve felt very much alone as I’ve played catch-up with my own mental health.
Awareness, education, and support would’ve made the difference for me between being able to fully focus on my healing process and being plagued by symptoms that undermined my recovery.
As awareness about PICS continues to grow, my hope is that more people will get the mental health support they need after they’re discharged from the hospital.
Kristina Wright lives in Virginia with her husband, their two sons, a dog, two cats, and a parrot. Her work has appeared in a variety of print and digital publications, including The Washington Post, USA Today, Narratively, Mental Floss, Cosmopolitan, and others. She loves reading thrillers, baking bread, and planning family trips where everyone has fun and no one complains. Oh, and she really loves coffee. When she’s not walking the dog, pushing the kids on the swing, or catching up on “The Crown” with her husband, you can find her on Twitter.