Cardiac Arrest Survivors: Research Participants Needed!

My experience with NYU's Quality of Life study

Hi everyone!

We sudden cardiac arrest (SCA) survivors love to find ways to give back and help others after their own near death/temporary death experiences. One way I chose to give back was to participate in NYU Langone’s “Cardiac Arrest Awareness and Long-Term Quality of Life: A Mixed Methods Study of the Experiences and Psychological Consequences of Adult Cardiac Arrest.”

There’s a sad dearth of information on long-term consequences of cardiac arrest and its impact on mental health and wellbeing. As of yet, this is the only study I could find that is focused on the mental/emotional impacts. My dream is that one day, the lucky survivors who are discharged from the hospital after an SCA will be given better and more timely information/resources than I was given.

I had the opportunity during an hour-long interview with researchers today to give advice. I suggested, for instance, that memory difficulties be taken into account when choosing how and when to give information/resources to survivors. I had next to no short-term memory when I left the ICU in February 2023, and any warnings about PTSD or depression were lost on me (if they were ever given). A better time to follow up and check in on survivors’ mental health would be a few weeks and then months down the road, when we’ve recovered enough to fully grasp what’s happened to us and how it’s changing our lives. The exact timeline will differ for every survivor, but mental health information and resources offered at discharge are probably next to useless for most of us. I, for one, was more concerned with re-learning how to swallow and speak, trying to stay awake, and building the strength to walk around a little, at that point.

For more, go to NYU Langone Health’s website

It was also gratifying to be asked how my post-SCA care has been, during the study. I was given the opportunity to share that my primary care NP has been most open to complaints about life impacts and mental health, whereas my cardiologist (albeit friendly) seems completely uninterested in anything but my heart’s measured ejection fraction. It’s improving, so he’s thrilled. When I’ve mentioned how I’m feeling, such as how difficult it is to live with the uncertainty of what caused my event and whether or not I’ll experience further loss of consciousness or SCA, he’s had nothing to say.

Lastly, I was able to share that my cardiac rehabilitation at my local hospital completely failed me emotionally. Despite horrific scores on mental health screening questionnaires and several attempts to voice my concerns about suicidal ideation in the six months post-SCA, nurses in the cardiac rehabilitation program ignored me. I felt for many months that I was screaming for help and nobody cared. It was almost as if everyone was so impressed that I was alive and that my heart was gradually improving that they couldn’t even hear or process what I tried to tell them about my internal experience. “But you’re a miracle…”

Surviving SCA was the single most isolating experience of my life. It’s comforting to know there are researchers who understand that, and who are looking into how to make it less isolating for others in the future. I highly recommend this study to other survivors who are interested in raising awareness for what it’s truly like after SCA. I hope you’ll participate, and I hope you find it as healing as I did. Just click on this link to read more and fill out the pre-screening questionnaire.