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The Patient’s Perspective

I am fascinated by hearing patients’ perspectives. Their realities are so very different from mine while they are in the hospital. I need to keep hearing what it’s like for them, lest I take my position as RN for granted. Sometimes patients are just a “Pneumonia in room 5″ because it’s easier that way. But I think in my unit, patients who have been there awhile become our pet causes and we really do see them as people with feelings going through a huge life change. We do care about what happens to them, even the ones that are “difficult.” We realize that they’re difficult for a reason, and we are also acutely aware that we may very well be the same way if the shoes were on different feet. With that said, Jim writes:

I was hospitalized 02/03 with pneumonia in both lungs. After being hospitalized for two days I rapidly went “downhill” and was placed on a vent and put into a drug induced coma. I awoke 04/03 **unable to move** with all the tubes that go along with a prolonged vegitative state (PEG tube, central line (CVP), foley catheter, etc…) and still on the vent, I did not remember what happened to me or where I was.

I have spent my time since April first of this year in intense physical rehab, both in-patient and out-patient. The diagnosis is Gullian Barre, I have seen many specialists over the last several months. They have told me I will not recover any more function than I have now. I use a quad cane and a walker to get around and have to wear AFO’s bilateraly. I am only 28 and I have lost my chosen carreer because of this.

This is so hard to get used to. I imagine it is tough for medical professionals to see cases like mine and you can’t get wrapped up in the patient’s story because some are indeed too painful to dwell on, but please try to remember that we are people too, we have lives and families outside of the emergency room or ICU or wherever you may find us. We are not just the respiratory distress in bed five, or the broken leg in bed eight.

Well said. I’m wondering what AFO’s are, and what your chosen profession was? I’m also curious… you say that you “woke up” and didn’t remember what happened to you. When did you find out? My coworkers and I almost always try to re-orient the patient as they are “coming out” of sedation, but I think we don’t do it often enough. Or if we do it once as they’re groggy, we forget to do it again as they’re more awake. Thank you for your submission.

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Jim, you provided such salient insight into what it’s like to be “in the bed” as opposed to bedside. While it’s been a long time since I’ve required nursing care, I have been bedside many times as loving wife, devoted daughter, doting sister and close friend. T he perspective is unique and helps to sharpen not only my nursing bedside skills, but also my people bedside skills! The humanity of caring for the ill can be overshadowed by amazing, and often lifesaving, technology. In nursing school AND while being precepted at work,the mantra that stays with me is “look at your patient”—do not just rely on monitors, alarms and test results/numbers — “look at your patient” — they become people again instead of numbers and EKG readings — you start to know what is “normal” for that person. It is the developed 6th and 7th senses nurses (and doctors) can develop when their approach to a patient (and thier family) is “holistic” — that is taking in the whole picture, knowing as much as you can about the person in that bed. Thank you for reminding me again that medicine really is more than the technical/clinical approach and problem solving — it is the fine nuances that raise it to a healing artform. Thank you. Truly patients are our greatest teachers.

And, of course, the reason we get the big money. Whoot!

Relative to the AFOs — I did a Google on “AFO bilateral” and got a mess of entries related to walking, feet, legs, and braces, as well as one reference to HKAFO, for Hip-Knee-Ankle-Foot Orthosis. I’m going to guess it’s what I (a non-med person) would call a leg brace, possibly articulated. Just a guess, of course.

My choosen profession was truck driving. I drove over the road 48 states and canada for seven years and enjoyed what I did, of course now due to neurological deficits I am not allowed to drive a car much less an 80,000 pound truck. In regards to your question about AFO’s they are ankle-foot orthosis, they are braces that help remidy the fact that I have no control over the muscles in my ankles which leaves me with what would appear to be foot drop. It is not foot drop as it is commonly seen though, it is a true neurological deficit.

I think I finally caught on to what happened (after speaking with family) about the middle of april.

Wonderful blog! I’ve been a tech for many years, in med/surg, an OB/GYN office, rehab, finally ER, and I was recently laid off after suffering a bad depression. My husband had an intracerebral bleed almost 5 years ago, is in a nursing home, we have 2 teen boys, and it finally got to me. I miss my co-workers and patients. I miss these smart, capable, caring, ethical, no-bullshit people called NURSES. Thank you for this.
I’ve read that acupuncture is used for stroke patients (don’t know how successfully) and wonder if it is ever used for Guillan Barre patients. One of the ER doctors is now using acupuncture in the hospital’s holistic medicine clinic, and I may be able to ask him about it. Jim, I hope there WIll be further improvement.

Maybe it’s different in pediatrics, but, all of our patients are more than just a pneumonia in 5, short-gut in 2, and an anorexic in 10. Because we have to address the developmental stages of each patient individually in order to go about providing care, we end up taking much more time with each patient and they do become our little buddies for the shift(s).

I believe it’s much more difficult to give more attention in adult care settings because of the sheer number of patients each nurse must take on. I don’t miss that part of adult care at all.

Jim, thank you for reminding us all that we need to look beyond the diagnosis.

Thank you all for your kind comments and encouragement, I am still progressing back towards “Normal”. There is a good website related to the disease I have (it’s called Gullain – barre) http://www.gbsfi.com

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 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.


My wife has Wegener’s Disease and complicated with ARDS and has been in a drug-induced coma for a month, now out of sedation, and has edema, though less, but yellow eye whites, and comes in and out of reality, and is beginning to respond with eye blinks and head nodding; has a tracheotomy. And it is good to hear the experiences from nurses and patients who have had similar experiences. We, the family, expect God and the medical personnel to give her complete recovery.
Paul E. Tooley,sr.

My wife has Wegener’s Disease and complicated with ARDS and has been in a drug-induced coma for a month, now out of sedation, and has edema, though less, but yellow eye whites, and comes in and out of reality, and is beginning to respond with eye blinks and head nodding; has a tracheotomy. And it is good to hear the experiences from nurses and patients who have had similar experiences. We, the family, expect God and the medical personnel to give her complete recovery.
Paul E. Tooley,sr.

please if anyone can answer questions for me I need advice. I live at the hospital with my husband. We have been there since May 27th. He was on a vent two years ago and came off in 14 days. He has been on 34 days this time. They say he had a stroke and can not feel anything, but he blinks and he has tears. He is only 50. He has edema in the eys and we don’t know who to make it better. I think he could open his eyes if they were not swollen. I welcome any advice Once again doctors do not have a clue what happened. Thiugh I brought him 10 times and told him he was geting sick.

I am a two-time 35-year old stroke survivor that has been in a Neuro ICU five times over the last year. The first time was due to a stroke; the next three were following neuro-radiological embolization “procedures” (as opposed to traditional knife surgery); my last and most recent stroke interrupted my vacation in Florida a few weeks ago (so I got to see a whole new group of people!)…the nurses are glad to wheel me down to the car because they tell me that they don’t often discharge patients directly from the Neuro ICU…although unfortunately my last hospital trip lasted ten days. The ICU was only a few days (I even got to be a model for a nursing magazine photo shoot–they told me I was the only one conscious enough to sign the form). Then it was off to the Neuro floor.

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


Oh, I forgot to mention that it was (of course) the nurses that helped me through the toughest of times in the hospital, particularly in the ICU. After seeing how some of the other patients were and how much attention they needed, I have truly come to respect the job that nurses do.

I read a message I wrote back in January 2005 stating that I’d hope that God and the medical team would give my wife full recovery. It was not to be; she died on 2/20/05.

Does anybody know how long it could take to come out of a drug induced coma? My sister has (along with some other things) streptacocuss pnemonia, and has been off the medicine that keeps her in the induced coma for 55 hours now. She has been nonresponsive so far. The doctor has ordered a cat scan to check her brain.

My family and I were in an auto accident 10 days ago on our way home from vacation. My husband was airlifted to the trauma center in our state and he has been in the ICU ever since. He had to have an emergency tracheotomy (crike) that was later modified into an actual trach because they had a hard time intubating him in the ER. He asperated vomit into his lungs, so they are worried about pneumonia. He was very heavily sedated for 7 days because every time they tried to bring him up, he would have a vagal response & his blood pressure would drop. They would turn back up the meds to calm him down again. He was on fentanyl and propofol drips for those 7 or so days straight. It’s been around 3 days now and he is still not totally lucid. He has his moments and can communicate and responds appropriatly, but is extremely restless and agitated. They have him restrained because he wants to pull the tubes out (cath, feeding tube, trach) and get out of bed. They have someone watching him at all times because he is so busy moving around all the time. This seems totally fitting for his personality, he is a pacer and not one to sit still or lay on the couch or anywhere else, even on a Sunday afternoon. The nurses have started saying that some of the behaviors may indicate that he did suffer a brain injury, even though the CT was clear. With the trach they can’t get a really good Neuro exam because he can’t really talk. I’m starting to freak out. He is only 39 and we have two young children. I am praying that it is his personality combined with a having a hard time coming off the meds, and being on a trach is no fun. His only other injuries from the crash are several broken ribs on the left side and a broken clavicle. He also had lung injury which seems to be healing up and the pneumonia has been kept at bay by antibiotics. Has anyone else had a hard time coming off those meds and had a similar situation? How did it turn out? Could this be ICU psychosis and not head injury? Please give me some feedback if you can.

Melissa. I am currently a Personal Support Worker student, then on to RPN. After reading your story I copied and saved it because I plan to re-read it to remind myself to always let the patient know no matter how many times what is going on and to make sure they are comfortable and feel safe even if I have to stay with them. I have no idea if you will even see this but I hope you and every one who has commeneted here with their stories, are doing well. I myself plan to become a nurse because of pain and experience in my life and I want to help & comfort people going through the same things. This is my promise to everyone out there.

So, what brought you to the hospital today?

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  • profileI am Gina. I have been a nurse for 15 years, first in med/surg, then CVICU, inpatient dialysis, CCU and now hospice. 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!

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