One of the common themes heard over and over again from people who have experienced Post Intensive Care Syndrome is that they have wondered:
Am I the only one who feels like this?
The answer is simple - no. In fact, researchers in the BRAIN-ICU study found that 3 months post-ICU discharge, 40% of patients exhibited cognitive dysfunction consistent with what one would experience after suffering from a moderate traumatic brain injury (Jackson et al. The Lancet. Respiratory Medicine, 2(5), 369–379). And in a study done at Mayo Clinic, it was found that of the ICU patients reviewed, 86% of them had at least one risk factor for PICS. It is easy to see that potentially thousands of patients every year who survive critical illness are left to deal with the effects of PICS.
It is because of this that it is so important for those who may be or who are suffering from PICS to know that they are not alone. Day by day, more conversations are being had about what Post Intensive Care Syndrome is and the education initiative is growing strong. Collaboratives such as THRIVE through the Society of Critical Care Medicine are expanding. There are support groups, both in person and online, such as the ones highlighted on this site that are there to make sure people don't experience this recovery alone.
Below is some practical advice to help you step out of the isolation of dealing with this syndrome:
Send an email to invite people you know to join the Post Intensive Care Syndrome (PICS) page.