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May 3, 2019 · Post ICU Nightmares / Hallucinations in Intensive Care (ICU)

I was just released from the hospital late Feb, and the things I’m hearing aren’t strong. They’re…like my neurologist said, echoes. It’s almost like something in the room triggers a memory and my brain brings up that audio clip, a word or a couple of indistinct words, yet because my brain isn’t fully healed from the trauma of being under yet, I can’t tell the difference between what’s coming from outside of my brain and inside. It freaked me out at first, but he assured me that it’s not altogether unheard of and that we’d reevaluate in a year. It doesn’t happen as often now, but in the first month post release it was all the time. He doesn’t expect it to get anything but better. And he’s an incredible doctor, so I’m not worried. He also attributed some of it to PTSD.

No, haven’t thought to research it. Honestly been struggling to figure out how life with what looks like SLE and two little ones is gonna look like, and then trying to recover without ongoing PT (had inpatient but we have no insurance so everything ended once I was released). I’m sorry to hear about your vascular disease. That sounds super painful!

May 1, 2019 · Post ICU Nightmares / Hallucinations in Intensive Care (ICU)

Oh honey, please don’t feel alone. I think there is a private message feature here somewhere and feel free to message me anytime. I understand completely, I really do—that feeling of wanting them to come be with you of their own volition. It’s awful. There’s something about the vulnerability of healing that simply strips us to our barest selves, and when we’ve done this with someone we’ve given our heart to, it’s such a fragile thing. There are no words for it. Or nearly none.

While I was under (coma, delirium, what have you), Hubby put headphones on my ears and played audiobooks for me. My mind did all manner of bizarre things with that, and then once I was ‘woken up,’ it took me several days to come to but I experienced delirium in the meantime and thus had all kinds of hallucinations, some of which were auditory. Now, while I’m doing housework or even lying down trying to rest or practicing my strength training, I’ll hear a voice or something that I know is either from an audiobook I heard, or some of the music that was played for me, and every now and then I’ll hear the ventilator. That’s the worst. That’s the sound that gives me the worst of the nightmares.

I’m so sorry this lead to separation for you. I’d love to talk to you more. It sounds like our experiences were at least somewhat similar. How are you sleeping right now? How long ago was your surgery?

May 1, 2019 · Post ICU Nightmares / Hallucinations in Intensive Care (ICU)

I understand completely what you mean by auditory hallucinations. I mentioned them to my neurologist and he said they were like echoes from the ICU and that it could take up to a year for my brain to heal from having been placed in a medically induced coma. Still doesn’t make them any less terrifying, lol. I had ICU delirium, so the oddest things will be triggers for me. I now stay home with my two very young sons (5&3) and it’s a battle. I feel like my husband just doesn’t get it. He says he does, but then his words and actions don’t match. I don’t want to be left alone in the evenings because my husband came at 6 at night at the hospital, then left about noon the next day. After he left, while I was paralyzed with Critical Care Myopathy, I was stuck for hours alone and they didn’t give me one of those buttons that you can bump up against to call a nurse until I was moved into the Special Care Unit a month later. So that left me scared and alone for hours without the ability to call for help. It sucked. Not to complain about him, it was my call to ask him to stay with me during the night instead of the daytime (I never slept at the hospital, and despite it being a Critical Care Unit, they didn’t mind him sleeping there). Oh, I guess I should note that I’d been flown to a hospital about four hours away from home by then. Anyway, point is I hate being alone now, but Hubby comes home from work and disappears to the sunroom for hours to “detox” from his day at work and I generally don’t see him until time to put the kids to bed. I’m only 9 weeks or so from discharge, I’m still coughing up phlegm from damaged lungs, and my arms and muscles still hurt with whatever autoimmune disorder they found while they were poking around doing tests (UAB is a teaching hospital and I was there forever and nearly died on them four times, thus I became a perfect guinea pig). Long story short, I also sort of understand the tension you must feel with your husband and I am so sorry. I did feel supported while I was in the hospital, but the second we got home, it was like I was dropped quicker than a sack of rotten potatoes, which hurt because I thought we’d had this bonding experience through this horrific thing we’d just been through. It just made it ten times worse to think back on being in the hospital.

Apr 26, 2019 · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@rosemarya @janegigi Thanks for responding! I think the hardest part for me, aside from the physical pain of whatever autoimmune disease I have (we don’t know for sure, and we don’t have insurance, so all we can do right now is wait and see), is the fact that the rest of the world moves on while I’m still reliving those hellish two months over and over and over. Don’t get me wrong, there were a couple of wonderful doctors who went above and beyond—who definitely searched past Critical Care Myopathy to determine why I got so sick so fast, why my body didn’t fight off the subsequent infections that came after the initial flu that landed me in the hospital to begin with and why I went septic. But having to learn how to walk, swallow, etc., was all extremely terrifying and yet my immediate family doesn’t quite get how traumatic it all was. I did see my neurologist (I had epilepsy prior to this, onset when my five year old son was just a year old) did warn me that it would take me at least a year before my brain was fully healed, and to expect things like memory loss, fogginess, impaired judgment at times, and so on. He said we’d reevaluate everything 12 months from my discharge (I was admitted in my hometown but after the first week I was flown out while in a coma to the trauma unit at UAB in Birmingham, AL).

Words and terms like klepsiella, blood transfusions, bowel management system, staff, delirium, encephalitis, chest tubes….keep rolling around my head like loose marbles. I want to scream them into my pillow. I’m still coughing up phlegm. I’m still breathing with damaged lungs. I wake up, heart racing, expecting to be unable to move even the tips of my fingers. All I could remember was going to the first hospital, waiting there while they did exams and said I had double pneumonia (how, I thought? I only have a low grade fever and no cough). Then they ran a blood cell count and panicked. White blood cell counts like that look like leukemia. There was no room at that hospital but the doctor suggested heavily to my father and husband that a bone marrow biopsy be done, and quickly. They transferred me then by ambulance to hospital number 2, and all I recall is being checked in, vaguely being wheeled to a room to meet my father, then being told that because I had a communicable disease, they were isolating me. It’s lights out from there. Next comes what feels like months. Bizarre happenings, weird things that I can’t begin to put into words. They were all related to being in a hospital so it had to be delirium. Then I slowly wake up and figure out I’m paralyzed and that none of it was real, and that the medically induced coma (the coma was about two to three weeks) wiped out two full days of me being conscious and aware—texting and talking to loved ones prior to the coma, just poof—gone from my memory, along with about two days after being “woken up.” I have no recollection of my parents’ visit, despite interacting with them in some fashion (dad says he knew no one was home). I read those text messages later horrified. Was I scared of possible intubation? I must have been. I’m haunted by this. Why didn’t the psychologist at UAB discuss PICS with me? Hyperventilating on a ventilator isn’t much fun, I can assure you of that. It’s like running up the down escalator. It gets you nowhere and everybody stares. And I did have a tracheostomy. That sucked. Suction was for the birds.

So, I’m long winded, but thank you for listening. Honestly. I would love to see a therapist but being that I am already going to have to claim bankruptcy, and now have no income (poor hubby the breadwinner), I don’t have that option at the moment. I’ve applied for disability, but gracious the forms are daunting. It’s like they don’t understand that my brain isn’t fully functional and therefore I’m not capable of filling out 900 pages. You’d think the three interviews would have been enough. But I digress. Thank you for listening.

Apr 25, 2019 · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

Does anyone still follow this thread? I’m 38 and just spent two months in the ICU, partly in a medically induced coma due to ARDS and sepsis, then was hooked to a ventilator and paralyzed with critical care myopathy. Wound up being diagnosed with an autoimmune disease after all was said and done, but the damage to my lungs, and muscle tissue is extensive. Not to mention the nightmares. I would love to find somewhere to talk to people who understand what I’m going through.