I can say that fortunately, except for when I was coming out of surgery, I was conscious and awake the whole time. As a patient, what I value the most is bedside manner. And a sense of humor. The ICU nurses I’ve had, both at home and on vacation, all had excellent bedside manner and senses of humor, and that kept me calm, believe it or not, even when I was in severe pain. Explanations of everything that was happening and of each drug (one of which turned out to make my headaches worse) were very helpful to me. And when I got up to walk around the neuro floor in the middle of the night, the nurses all smiled and said hello. It made me feel much better than if I had encountered a nursing station where no one paid attention to me.

If any nurse from a neuro ICU can offer tips they would give for a “recognize the signs of stroke” public service announcement for radio, I am planning to tape one and make it available to small community stations around the country free of charge. Permission to use a portion or all of your submission for broadcast is implied. Please email me directly with the subject STROKE PSA

Thanks.

The hardest part for me was the few days when I was half awake and half asleep. I didn’t know where I was, I still couldn’t see because of the edema in my eyes, I was restrained so I couldn’t move my hands, (I could kick my feet and I did). I could hear the vent, but I thought it was a dishwasher. I thought I was in a kitchen somewhere, and somebody had made a horrible mistake and had thrown me away, and I couldn’t wake up or tell anyone that I was still alive. I could hear the TV, and I could hear people talking from far away. I was terrified. I would kick and kick, trying to get someone to come help me. Then there would be this male voice that would say, “Melissa you have to slow down your breathing.” OH I HATED that voice! Don’t tell me to slow down my breathing! Tell me where I am! Tell me what you are doing to me! Tell me why I can’t move, why I can’t see, why I can’t talk, why I hurt all over, tell me what is happening to me! Let me know you are actually here, not just a disembodied voice somewhere.

When I was able to see, I would look out of my room at the nursing station, and watch the room rotate. I wondered how they got the furniture to stay on the ceiling when the room rotated. I also watched the dome lights on my ceiling and saw faces drip out of them.

After I was transferred to a regular unit (the same day they took me off the vent) I felt tape on my throat. It was itchy. I started to scratch it. I was alone in the room. I wasn’t trying to pull anything out, I just wanted to scratch what was itching. I looked at my hands, saw blood, and pressed the call button. The nurse came in, started screaming at me that I had pulled out my dialysis line, pressed her hands into my neck so hard that I thought i couldn’t breathe, and started screaming for other nurses. I was immediately put into restraints. I begged them not to. I wasn’t trying to pull out the tube. Nobody had told me there was a tube there.

I was not combative. I just could not remember new information because I still had the ICU medicine in my system. The restraints stayed on all night all for the next 36 hours. They only came off when my mother was in the room with me, which was only a couple of hours around dinner time. That was totally degrading and humiliating, and unnecessary. I used to be a nursing assistant, and I worked with people like myself — people who weren’t combative, but who had to have someone with them or they would pull tubes. If I had had a sitter, I would not have needed the restraints. I was not let up every few hours, I was not even given the call button within reach. I had to ask my roommate to call the nurses for me when I needed them.

Because pancreatitis and ARDS can happen again, I now have advanced directives, and a list of things that I want to have in case I am ever in the hospital again. I want to be called by my name. I want to be told where I am and what is happening to me. I want someone in my room if the only reason I am in restraints is because I am not able to remember new information. I want my own favorite music playing. I have a whole list of stuff.

It has been a year. I am discharged from OT and speech therapy, but I am still in PT. I had to relearn a lot. I still have seizures, and some aphasia and anomia. I carry a dayplanner everywhere I go, because my memory is not good. The holidays are freaking me out. Everywhere I look, memories of the hospital are in my face. I also have post traumatic stress, which I am told is normal for anyone who spent so much time in an ICU.

Well, there is a patient’s point of view for you. I will answer any questions you have.

Melissa