Post-Intensive Care Syndrome (PICS) - Let's talk

So I'm dropping back in to give you all a bit of the back story.

I was in my late 40s at the time and had always been a relatively healthy person. I'd never been really sick, to where I'd needed to be hospitalized.

I had a very stressful spring and summer in 2014. I took on a new job, and it didn't work out. I went back to working part-time, but I had a hard time at that too. In the fall, I went to visit a good friend of mine. Her son has emotional problems, and my visit was rough on me, because he was acting out quite a bit while I was there. When I flew home, I got a sinus infection. It got worse, to where everything just smelled... bad. I went to a doctor, and he agreed that I had a sinus infection, but thought it was too early to give antibiotics, and he advised me to make another appointment if the infection didn't go away. That was Monday, I think. By Friday, I was really quite sick, and on Saturday, after talking to a consulting nurse, I called my brother on his cell phone and asked him to come home and take me to the ER.

I was diagnosed with pneumonia, and the ER doctor was considering sending me home, but decided to keep me overnight for observation. But while I was in the ER, I asked to lie flat because my back hurt. (Not a good idea, in hindsight.) Then I got a wave of nausea, and I vomited, and I aspirated some of the vomit.

I remember leaving the ER for a regular hospital room. I don't really remember arriving at the room, but a nurse I talked with later told me she remembered I only take pills with food, and I did have a suggestion of a memory of that. I also remember talking with my good friend on my cell phone, but only after she reminded me that she and I had talked.

When my brother dropped in to visit me Sunday evening, he found me to be, in his words, "completely out of it." He called in the nursing staff, and they began to take my pneumonia seriously.

On Monday morning, they transferred me to the ICU and sometime that day they put me on the ventilator. I was in some kind of a bed where I was face-down for ten hours, then face-up for two hours. This pushed the framework of the ventilator into my face and left flat scars, one on each cheek. They also put some kind of a device that monitors blood pressure and some other things in my carotid artery. I had a blood transfusion for that. I also had some kind of procedure where the lung doctor went in and... well, I know it's not called vacuuming out the lungs, but that's what it reminded me of when I was reading the bill for my hospitalization later. I didn't remember any of that, though. My brother had to tell me all this, or I discovered it months later on the bill (which was very long).

The hallucinations were terrifying. I was trapped in some kind of a world with rather triangular dimensions, and it was short, so I couldn't stand upright. It would flip, and I would think I had escaped. But no; I was still there. This happened over and over.

When I woke up (sort of) on the following Monday, my brother (who had been there every day when I was out) had reached the end of his emotional strength and stayed home that day. It was the worst day he could have had such a thing happen. The first nurse I remember told me I was in the hospital and that I'd been sick. She was gruff. She obviously didn't like me. She was wearing very heavy, orange-ish makeup, and she scared me. I was instantly convinced that I was being held prisoner. The other nursing staff were pleasant, but the damage was done. I tried, in my drug-induced state, to figure out how to escape. I somehow worked off the "puffer stockings" that are supposed to keep blood clots from forming. I don't know how I thought I was going to get free of all the tubes, but I was really out of it, so I thought I could wait until nobody was paying attention and crawl away.

Then the next day my brother showed up. I wasn't being held prisoner after all.

Then I had to get on with the reality of healing.

Wow, that was long and detailed. If you read through it all the way, I give you 5 brownie points!

🙂

@spottedcat83 Hello and welcome to Mayo Connect. It sounds as if you have been through an incredible trauma and your frustration with your current situation is very understandable. You do not mention where you live, however, in Michigan we have Hope Network which is a Rehabilitation facility that specializes in neurocognitive rehab. This type of rehab would be very helpful to you. Perhaps you could use your computer and google the term, "neruocognitive rehab" in your locale and see what facilities might be available near you and then see if they can help you. If you are comfortable sharing more, let us know how you ended up in ICU. Was it the result of an accident or stroke? We look forward to getting to know you better. Teresa

@spottedcat83 Hello and welcome to Mayo Connect. It sounds as if you have been through an incredible trauma and your frustration with your current situation is very understandable. You do not mention where you live, however, in Michigan we have Hope Network which is a Rehabilitation facility that specializes in neurocognitive rehab. This type of rehab would be very helpful to you. Perhaps you could use your computer and google the term, "neruocognitive rehab" in your locale and see what facilities might be available near you and then see if they can help you. If you are comfortable sharing more, let us know how you ended up in ICU. Was it the result of an accident or stroke? We look forward to getting to know you better. Teresa

@spottedcat83 Hello and welcome to Mayo Connect. It sounds as if you have been through an incredible trauma and your frustration with your current situation is very understandable. You do not mention where you live, however, in Michigan we have Hope Network which is a Rehabilitation facility that specializes in neurocognitive rehab. This type of rehab would be very helpful to you. Perhaps you could use your computer and google the term, "neruocognitive rehab" in your locale and see what facilities might be available near you and then see if they can help you. If you are comfortable sharing more, let us know how you ended up in ICU. Was it the result of an accident or stroke? We look forward to getting to know you better. Teresa

I'm having a desperate time of it right now. Well, actually all the time, not just right now. I was in the ICU in 2014, on a respirator for eight days, I think. I had vivid hallucinations while I was on it. When I was coming out from under the anesthesia, my brother wasn't there that day and I believed for over 24 hours of terrified semi-wakefulness that I was being held prisoner somewhere. I make jokes about it now, but it was no joke then.

When I started recovering, I couldn't walk. I'm right handed, and my right hand wouldn't function. I lost so much muscle, my thigh looked like it had a cute little waist.

I couldn't remember the date, or even the year, for several days while I was recovering.

What's causing the desperation now is the shape my brain is in. I've had significant memory loss. I had neuropsychological testing done twice, in 2015 and just this spring in 2017. Both tests showed mild cognitive impairment. I am working part-time, and the only reason I can do that job is because it's twelve hours a week and very flexible. The depression monster and its friend the anxiety monster are constant companions for me. My brain won't work for me anymore, but adding to the problem is that...

I
look
so
normal.

I know that I am disabled. I know that I ought to be on disability. But Iook so nicely normal, and I sound normal much of the time. I need help, and I know it. But getting help is almost impossible. I'm supposed to be seeing either a... what's it called? Occupational therapist. And a speech therapist too. But how am I supposed to do that when my insurance sent me a letter saying that all but one of the therapies was denied? I'm supposed to call them back and see if they were approved. Then I can maybe do something if they're not approved. But I can't remember to call them back most of the time. And even if I did, the mental fatigue is making me want to crawl back into bed, fall asleep, and just not wake up. No, I'm not suicidal; I mean literally, I don't want to wake up. I just want to sleep, where I don't have to deal with all this overwhelming stuff.

I need help with disability stuff, but since I look normal, or maybe because social workers don't have time for people who look normal on the outside, or something, nobody is offering to help me. I don't even know who to ask anymore.

Are there specialists somewhere to help people like this? My life has been pretty much ruined, and yet I'm supposed to just get myself together and get myself a full-time job so I won't be worrying about living on $600 per month or less.

I feel like I'm being pulled under. I have a very few friends, but they're not close enough to help. I share a house with my brother, but he has his own set of problems. (We come from a family with at least one depression monster, or one anxiety monster, or one PTSD monster, and often multiple monsters, which complicates anything that comes our way.)

Help?

So I'm dropping back in to give you all a bit of the back story.

I was in my late 40s at the time and had always been a relatively healthy person. I'd never been really sick, to where I'd needed to be hospitalized.

I had a very stressful spring and summer in 2014. I took on a new job, and it didn't work out. I went back to working part-time, but I had a hard time at that too. In the fall, I went to visit a good friend of mine. Her son has emotional problems, and my visit was rough on me, because he was acting out quite a bit while I was there. When I flew home, I got a sinus infection. It got worse, to where everything just smelled... bad. I went to a doctor, and he agreed that I had a sinus infection, but thought it was too early to give antibiotics, and he advised me to make another appointment if the infection didn't go away. That was Monday, I think. By Friday, I was really quite sick, and on Saturday, after talking to a consulting nurse, I called my brother on his cell phone and asked him to come home and take me to the ER.

I was diagnosed with pneumonia, and the ER doctor was considering sending me home, but decided to keep me overnight for observation. But while I was in the ER, I asked to lie flat because my back hurt. (Not a good idea, in hindsight.) Then I got a wave of nausea, and I vomited, and I aspirated some of the vomit.

I remember leaving the ER for a regular hospital room. I don't really remember arriving at the room, but a nurse I talked with later told me she remembered I only take pills with food, and I did have a suggestion of a memory of that. I also remember talking with my good friend on my cell phone, but only after she reminded me that she and I had talked.

When my brother dropped in to visit me Sunday evening, he found me to be, in his words, "completely out of it." He called in the nursing staff, and they began to take my pneumonia seriously.

On Monday morning, they transferred me to the ICU and sometime that day they put me on the ventilator. I was in some kind of a bed where I was face-down for ten hours, then face-up for two hours. This pushed the framework of the ventilator into my face and left flat scars, one on each cheek. They also put some kind of a device that monitors blood pressure and some other things in my carotid artery. I had a blood transfusion for that. I also had some kind of procedure where the lung doctor went in and... well, I know it's not called vacuuming out the lungs, but that's what it reminded me of when I was reading the bill for my hospitalization later. I didn't remember any of that, though. My brother had to tell me all this, or I discovered it months later on the bill (which was very long).

The hallucinations were terrifying. I was trapped in some kind of a world with rather triangular dimensions, and it was short, so I couldn't stand upright. It would flip, and I would think I had escaped. But no; I was still there. This happened over and over.

When I woke up (sort of) on the following Monday, my brother (who had been there every day when I was out) had reached the end of his emotional strength and stayed home that day. It was the worst day he could have had such a thing happen. The first nurse I remember told me I was in the hospital and that I'd been sick. She was gruff. She obviously didn't like me. She was wearing very heavy, orange-ish makeup, and she scared me. I was instantly convinced that I was being held prisoner. The other nursing staff were pleasant, but the damage was done. I tried, in my drug-induced state, to figure out how to escape. I somehow worked off the "puffer stockings" that are supposed to keep blood clots from forming. I don't know how I thought I was going to get free of all the tubes, but I was really out of it, so I thought I could wait until nobody was paying attention and crawl away.

Then the next day my brother showed up. I wasn't being held prisoner after all.

Then I had to get on with the reality of healing.

Wow, that was long and detailed. If you read through it all the way, I give you 5 brownie points!

🙂