This entry pretty much defines the reason why I started this site. It’s a very intriguing read. My comments will be at the end.
Melissa writes:
I was an ICU patient also, from Thanksgiving day 2002 to about a week before Christmas. I originally had acute pancreatitis, then developed ARDS and renal failure. I was intubated and put in a drug induced coma, but when the drugs were stopped, from what I can piece together, I stayed in the coma, non-responsive, even to pain. Nobody knew if I would wake up, be vegetative forever, or if I did wake up whether I would be blind, or how impaired I would be. They told my family that I would not be home before Easter at the minimum.
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 ventilator, 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 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 occupational therapy and speech therapy, but I am still in physical therapy. 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.
At my hospital, we routinely use sitters to sit with patients that are confused, so that we don’t need to restrain them (but only on the medical floors; ICU does not get sitters. We nurses are the sitters, but we certainly can’t always be in the room, especially when we have another patient. This is why restraint use is so prevalent in ICUs.) The fact that she could not remember instructions due to short-term memory loss is something that is usually completely lost on some (most?) nurses, including myself. Of course it seems perfectly normal to want to itch at something, and maybe she *had* already been told a zillion times not to touch it, but if she can’t remember, she can’t remember! This submission has really opened my eyes to several aspects of my personal practice (I usually tell patients who are half asleep/half awake what is going on, but I don’t take into account that they might not remember an hour later what I’ve said. Seems silly not to know that, but that’s how it is.)
I have taken care of extremely agitated patients who will calm down somewhat after I have explained thoroughly what is happening. The problem is that I have to keep telling them, and it can be frustrating. Sometimes I am simply too busy to do this repeatedly. But after reading this, I will try harder to be more diligent in explaining things.
I am Gina. I have been an Intensive Care nurse for 14 years. This blog is about my experiences as a nurse, and the experiences of others in the healthcare system - patients, nurses, doctors, paramedics. We all have stories!
Comments
The patients perspective is always something that opens my eyes.
Those of us in healthcare tend to forget that patients are not just pieces of meat sometimes. I always try to remember to have empathy, but much like you say, sometimes it just gets frustrating or we forget things like memory loss.
Its always good to be reminded what the person on the stretcher/bed is feeling.
added by Doc on 01.25.04 7:35 am | Permalink
Thank you so much for posting this. It’s excellent.
I’m reminded of what I need to do in advance of going into hospital. Also what I wish I’d said while my sister was in critical care and intubated. This is invaluable information.
I hope I have a nurse like you one day.
added by Carrie on 01.25.04 8:27 am | Permalink
I am doing much better now. I am getting close to being discharged from PT, and that scares the daylights out of me, because I don’t know where I am going from here. My entire life for the last 14 months has been hospitals, doctors, rehab, etc. I can’t go back to the way things were, that isn’t an option, but I don’t know where to go forward to either. Kind of a scary place to be.
I have right brain damage, problems with visual spatial reasoning. Also I have Central Auditory Processing Disorder. I can’t filter sounds in a noisy environment, or concentrate on tasks in a busy or noisy environment. Which makes returning to my previous career as a Day Care Center owner impossible. I take 18 different meds a day now. My SSD should be open any time now, and then I will have more resources to work with. I would like to do some somputer work part time, if I can afford to financially without losing medical coverage.
I just want my life back!
added by Melissa on 01.25.04 12:55 pm | Permalink
Great site!!!! My cousin forwarded it to me and as a student I’m glad that she did!!! Keep up the good work.
added by keni on 01.28.04 9:17 pm | Permalink
When my mother spent 2 months in ICU in general anasthesia after a car accident, the nurses really impressed me:
Everytime someone approached her bed they would introduce themselves and tell her what they were going to do and why.
At least 3 times a day a nurse would tell her where she was, why, the reason for pain, itch or discomfort and what was making the strange sounds. And all this while she was “out cold”!
It was a big eye-opener for me, a nursing student!
The patients viewpoint is always important!
Thanks Melissa for sharing this,
Linn
added by Linn on 01.29.04 2:21 am | Permalink
Thank you for validating the approach I always used with patient care when I was working bedside. I would always introduce myself, give the date, time – where they were etc. I used to work CCU and also Oncology. I would go on and “talk about whatever came to mind” – weather, etc etc. I would always tell them what treatment was being done – etc etc. I would always try to establishy responsiveness. Ask they sqeeze my hand. – - I would not leave a TV on – - due to concern re how this would be perceived. I know work within an office setting. Hope you recover fully. You have a great role ahead of a patient educator/advocate. God Bless
Martha
added by Martha on 02.01.04 4:14 pm | Permalink
About the TV – my ICU nurses DID leave the TV on. At least for the period that I was in and out, and trying to wake up. It was right before Christmas, and some of my favorite movies were on TV. I could hear everything. When I woke up, I was able to tell everyone which movies had been on TV, and I asked why it was on all the time. They said it was on to stimulate me. It might not have stimulated me so much if it hadn’t been some of my most favorite movies, but it did work. I would definitely recommend playing favorite music or favorite movies or TV shows for the person even if you don’t think they can hear it. I have a CD case of my favorite CD’s, and I would hope that if I am ever sick again, and agitated, that someone would have the kindness and creativity to think of playing one of my relaxation CD’s for me. I DO have that written in my advance directives, and music even works better than medicine sometimes.
Actually, I thought I had been moved to another hospital, because of what I was hearing. There was a door to the ICU that opened to the hallway, and the temperature was colder in the ICU than the hall. When people would come into the ICU, they would say how cold it was, and in my confused thinking, I thought I was back in NY or someplace with snow, instead of still being in Phoenix. When people would ask if I knew where I was at, I first said no, and then I would say I used to be at Good Sam, and then I said I was at the OTHER Good Sam. Eventually a doctor told me I was at the same hospital I had always been at, but it took me a long time to be able to remember that.
Melissa
added by Melissa on 02.02.04 7:56 pm | Permalink
i see this was written some time ago, but it really fits what i’ve been wondering about the patient i had the past two days. i don’t know what to tell the family. he’s not sedated at all-subdural hemorhage. the family keeps asking: can he see? can he hear? i tell them i’m not sure, but that they should talk to him, that they say hearing is the last to go. i don’t know what to say. his eyes show no reflexes. he opens his eyes spontaneously, but not responsively. no corneal reflex. i don’t know what to do with him. i fear he will be my patient again tomorrow. for more than two weeks, we keep telling the family that “he is the same” and that there is no change in his status. he has decerebrate posturing. hs bp is still labile. the evd keeps draining about 10 ml an hour (down from 12/hr when i had him last week). i don’t know. i’m not going anywhere with this. i’m just frustrated. neuro patients are such a mystery.
added by Seakitty on 07.12.05 6:53 pm | Permalink
I think the limited medical access to medical facilities and the bad reliance of the service are mainly responsible for this situation.
added by Andrew Spark on 02.01.06 12:33 am | Permalink
I thank you for bringing this to peoples attenion. My husband was in the trauma unit after a gas explosion almost killed him. He had to be intubated for several days. He was so close to death that I couldn’t leave his side. As he came out of his drug induced coma he began to pull at every tube he had. I would stand by his side and tell him every five minutes where he was, why he was there and that he was going to be ok. I would have to remind him that he was on a ventilator and not to pull at the tubes. I didn’t leave him except to go eat and catch a couple of hours of sleep. When I wasn’t in the trauma unit with him he would have to be restrained. He did have some really great nurses that would stand over him and untie his hands and remind him not to pull on his tubes. I was physically exhaused and my body would hurt from standing for six to eight hours at a time (no chairs are allowed in trauma in case of an emergency. Which I fully understand) I do not regret one minute that I stood and comforted him. It has been one year and eleven surgeries later and he still tells me how comforting my voice was. We are still dealing with short term memory loss, but that is a small price to pay for your life.
added by robynn on 10.16.06 4:41 am | Permalink
I went to the ER for stomach pain and was given morphine and a nausea meds then admitted to the hospital, I was still feeling alot of pain with the IV drip of morphine they continued it and there was no relief . I remember the nurse coming in and giving me a shot of Vistrial and I question her about this then she gave me Dilaudid I knew about the first shot ,but my boyfriend that was there at the time said the nurse came in and gave me two more shots of the same drugs through IV . I then don’t remember anything exceept for what my boyfriend tells me to fill in the blanks That a code blue was called . Adna alot of other stuff ,but when I can out I told my boyfriend and my mother that I could hear but I only remember like three things that what was said. Which were not very nice things about myself . And now that I am home I still have a hard time knowing what the day ,time even month it is .I know this was astress on my brain and the one doctor said he was sorry for this mistake to my mother and boyfriend. But when I called the hospital to conplain about what I heard while non responive or what evn it was called .I getno response them just telling me that I should be thank for for them saving me. But the question to me is thier the ones who gave all this medication . And I don’t remember when I got out but it was this week some thime. But is it true that I would be able to hear people talk.
added by Michelle on 09.28.07 7:08 pm | Permalink
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