I cannot tell you how happy I am to discover this online support group. It's been 5 months since I was intubated, in a coma, in the ICU. The cause: a series of seizures that were completely unexpected and put me on the brink of multi-organ failure. I very nearly died. Now I've learned that it's true that you enter the ICU as one person and leave as someone different. I know I can never get my old life back...for one thing, repeat seizures could kill me (the preferred outcome) or leave me severely brain damaged (the not preferred outcome) and that could happen at any time despite the heavy medication I now take. I find that terrifying.
Alas no one at my hospital (a large medical center in the Northwest) mentioned post ICU syndrome or told me and my family what I might experience once home. So I naively thought I'd bounce back in a couple of weeks. I had no idea how long-lasting my physical weakness would be, nor how exhausted I'd be, nor how much continuing pain I'd experience from a broken back caused by my seizures and undiagnosed for two weeks. Then there's the mental aspect -- the brain fog, forgetfulness, confusion. I've self-diagnosed myself with a brain injury. How significant or long-lasting it is I don't know.
However I do feel like I'm improving thanks to time and the Internet. There are no Post ICU support groups where I live and no therapists I can use (under my health plan) who have experience counseling PICU survivors. So I'm working to piece together my own recovery by finding information and help online. It's been a hit or miss process.

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