I felt that transitioning home from the ICU was like going on a long, anxiety-filled trip without a roadmap. Now, 10 months later, that's probably what surprised me the most. My medical center considers itself state of the art, yet it discharged me with absolutely no printed PICS information so I had no idea what to expect going forward. Surprise! I didn't just bounce back after 2 or 3 weeks, as I assumed I would. There's a lot of work to do afterward both physically and mentally, and my hospital apparently thinks their job ends at discharge. Wrong, in my opinion.
So people in our shoes need to be proactive researching PICS, and finding chat groups like this, if they're to arrive at a thorough understanding of what they're going through and what they may expect going forward.
Another big surprise: my full medical situation. I was discharged with a list of conditions that put me in the ICU on a ventilator (uncontrolled seizures, respiratory failure and aspiration pneumonia, plus more).
But as is common, I could remember nothing of the ICU experience. So being curious about what I'd gone through, I requested my full hospital records, which were free in electronic form.
There I found Surprise #2: my discharge papers were woefully incomplete. Only by reading my hospital records did I discover I'd also suffered sepsis and septic shock, plus a couple of other serious conditions (that one ICU doc predicted would kill me). Getting the full picture helped me celebrate my survival...gratitude is important to healthy healing.
It also helped me understand why I was so weak, forgetful, fearful, confused, exhausted and in pain. And that was still going on months later! So it can be useful to recovery to get hold of your records.
Surprise #3: the length of time it takes to recover and the pitfalls of not understanding that.
I would have done better if I'd had PTSD counseling fairly early on. I didn't because I figured that any day I'd be recovered and wouldn't need it. I did, but I needed a reality check to understand that -- something I never got from my doctors.
Surprise #4: how clueless -- and frankly unconcerned -- doctors are about PICS. Post-discharge I saw 3 different specialists for different issues.
Doc #1 had never heard of PICS.
Doc #2 had heard of PICS and thought patients would be just fine if their ICU discharge doc simply explained PICS to them. My hospital memory was so impaired I can't remember any of the doctors who saw me. There's no way I could possibly remember what they told me.
Doc #3 was all into reassuring me. "You don't have PTSD," she gently told me after I described what I later learned were classic PTSD symptoms. So she was no help.
The bottom line: we really need to understand that we have to help ourselves. Most hospitals, mine included, don't have PICS clinics or support groups (and my entreaty that my hospital consider starting them has fallen on deaf ears). So it's up to us to self-educate and heal our psyches.
I found talking with family and close friends extremely valuable in processing what I went through. I also found writing a journal...something I'd never done before...very, very helpful. Just seeing my feelings on paper made me feel better. Not "cured" but clearer about my conditions and my recovery.