Surviving the edge of life: My journey with ICU recovery

“The ICU is full.”

The COVID-19 pandemic has made this phrase familiar to us all and evokes significant anxiety.

This became a personal reality for me when I had my own intensive care unit admission in 2018 following unexpected complications from a surgery, resulting in sepsis and respiratory failure—collapsed/compressed lungs, pulmonary edema and bilateral pulmonary embolisms. The ICU was full, but fortunately my medical team triaged other patients and found an ICU bed for me.

Just before I was sedated and placed on a ventilator, the fear was like no other—not knowing when I would wake up, what was to come, or worse, if I would even wake up.

I am a clinical psychologist at St. Jude Children’s Research Hospital, and I am also the ICU psychology liaison, a role that allows me to help improve the psychosocial well-being of our ICU patients. I also have the lens of being an ICU survivor myself. This perspective allows me to fully appreciate the physical and emotional experience of surviving the edge of life, as well as the long and hard road to full recovery.

My personal and professional experiences have taught me the importance of addressing the comprehensive needs of our critically ill patients during and after ICU hospitalization.\

Rehabilitation during and after the ICU

ICU recovery begins immediately.

The first morning after I was taken off the ventilator, my physical therapist’s goal was for me to sit up in the chair, a common goal for many post-surgery and ICU patients. As soon as I was able, I was encouraged to walk as much as I could, particularly for my respiratory recovery. Despite the pain, I knew I had to participate in physical therapy and move as much as I could.

Recovery can be unimaginably long and painful but can come with unexpected successes.

My recovery took over a year after my ICU stay. At times, looking ahead seemed nearly impossible. I had lost independence and was forced into a mindset of getting through daily goals and regaining basic skills. Several months after my hospitalization, I gradually began to gain my independence back and was able to walk and dress myself without assistance. I experienced—what may seem to others like minor progress, but felt like a huge success—being able to put my own socks on. It took longer for me to resume eating normally, and breathing is still sometimes a challenge.    

A healthy mindset

Six months post-ICU my goals started to shift. I could finally start to focus on the future and not be trapped in a mindset of thinking anything could go wrong at any minute. I started to see that I could live again and get back into the things that I loved to do.

After everything my body had been through, I never imagined having the physical capability to get back into sports. I began running again, cycling, and training for a triathlon. I even challenged myself to catch waves while surfing in Costa Rica and San Diego – all unexpected successes.

Every run and bike ride gives me emotional and physical freedom, reminding me that remarkable progress is possible and how fortunate I am to be alive and have my health back—all thanks to early mobilization of physical therapy.    

Recovery requires mental effort and perseverance

It was easy to become deeply discouraged throughout recovery. I sometimes doubted how I was going to live and cope with the longer-term pain and physical changes.

I grappled with existential issues of why I survived and questioned my place in the world. At one point, after a night in the ER because of more serious complications and difficulty breathing, I ended up back in the hospital again.

For several months after my time in the ICU, my lungs were fragile. I was at risk for infections and more complications, so I had an ongoing worry of returning to the hospital. During this era of COVID-19, I continue to worry about landing back in the ICU.

The mental endurance was often just as challenging as the physical recovery. Focusing on my progress was a huge help. Running and cycling also provided me motivation and goals to persevere. I also thought about our patients; their resilience inspired me to keep going.

Psychosocial care in the ICU

Since returning to work, I have refocused my efforts on our critically ill patients in the ICU. Anxiety, depression and PTSD are common following ICU admissions. Delirium is also common for patients coming off sedation and ventilators.

In collaboration with our Psychiatry service and ICU staff, we started screening for delirium and educating caregivers about this issue.

We began ICU Psychosocial Rounds to address patients’ psychosocial needs. Also, I’m part of the BRAVE (Beginning Restorative Activities Very Early) early mobilization program, a multidisciplinary collaboration to improve patient outcomes in the ICU. I am fortunate to have a recovery beyond what I imagined. My ICU recovery has given me unique insight into the experiences of critically ill patients, making me a better psychologist and advocate for mental health care and early rehabilitation. Like many ICU survivors, I still wonder why I survived the edge of life. But I know one thing is for certain—being an ICU survivor has highlighted the importance of rehabilitation and emotional health in recovery for critically ill patients.