Patients' and Families Shared ICU Experiences
Post Intensive Care Syndrome
December 30, 2016 Submission:
My name is Rob Rainer. At the time of my ICU experience I was 52 years old, a husband and father of 3 adult children. In 2015, I spent two consecutive months in ICUs, at two different New Hampshire hospitals, with a rare and often deadly strain of pneumonia. While a patient in these two ICUs, I was in a medically induced coma for approximately one month. I experienced horrific hallucinations during my ICU experience: (1) while in a coma, (2) while being weaned out of the coma and (2) after awakening.
TWO MONTHS IN THE ICU
While on a ventilator, I experienced what can best be described as an alternate reality. For example, one of my clear and vivid memories is that my father had bought the hospital with a dishonest business partner who was abusing the patients and trying to defraud my family. I was also convinced that I was being sexually molested by the nursing staff.
My hallucinations, which I still vividly recall, locked me in a strange alternative reality, it was so real—much different from a dream. Mainly because I rarely remember dreams and eventually forget them within a day or two.
TWO YEARS POST ICU, HALLUCINATIONS REMAIN VIVID
Almost two years after my ICU experience, I can recount in detail most of my hallucinations. Some of my hallucinations can be easily discarded, because they were ridiculous. However there are delusions that I think of as hybrid because they feel like experiences that really took place while I was in the ICU.
BLURRY LINE BETWEEN REALITY AND HALLUCINATIONS
I do not know if some of my hybrid memories are real or hallucinations. However my family tells me that most of these hybrid memories that include them, are not accurate. These hybrid memories remain difficult for me to resolve.
It is this blurry line between reality and delusions that is the most frustrating aspect of my ICU experience, because these hybrid memories can never be truly resolved.
DIFFICULTY LETTING GO OF HALLUCINATIONS
The first few months post ICU, I persiverated constantly about my hallucinations. Over time I have learned to stop focusing so intensely on my delusions and instead to focus on my good fortune in having survived a deadly disease that most people die from.
HEAVY PRICE PAID FOR SURVIVING ICU EXPERIENCE
But, ICU survival has come at a price to me and my family. My ICU experience has left me with a number of medical conditions including: scarred lungs (I have recently become oxygen dependent during physical exertion), hemi-paralysis to my diaphragm, cataracts, diabetes, some cognitive deficits, peripheral neuropathy in my feet, thyroid cancer (resulting in a thyroidectomy), muscle atrophy and hearing loss, among other problems.
PHYSICAL INJURY CAUSED DUE TO HALLUCINATIONS
I was told, but have no recollection, that I acted out when doctors began to wean me out of my coma. As a result, I had to be "strapped down" to keep me from ripping out my tubes and to "protect" nursing staff. Given that I had lost 60 pounds and was barely able to move due to muscle atrophy, I find this hard to accept as true.
Being strapped down as a result of my hallucinations caused injuries to my neck and shoulders. The injuries were caused by me fighting against the straps that held me down. Prior to my ICU stay, I suffered from no neck or shoulder pain.
Since my ICU stay, I have had eight epidural and transforaminal injections over a two year period of time. In October of 2016, I had a cervical anterior laminectomy and I am scheduled to have a cervical foraminotomy in January of 2017.