Did anyone who had a Tracheostomy or was Intubated think they were talking to a nurse, when because of the tube they could not have been?

I didn't until recently remember anything at all about my stay in ICU, but I now little things are coming back to me. For instance when I was intubated and put in a medical coma I remember calling nurses and being totally ignored (not surprising I thought as they were the ones who were trying to kill me). Then later on I starting waving and a nurse who on my last visit back to the ICU I found out was the pharmacist came over and said I cannot talk to you because of the thing in your throat (I had no idea until I was told weeks later on the normal ward that I had been intubated) But as far as I was concerned I was talking to her and I just thought she was making excuses to ignore me.

So until recently I put this all down to my nightmares and dreams, but after being told that they had to try and extubate me a number of times (and so even though I did not know it at the time I was awake, or some sort of wakefulness even though it may have been for short periods) and remembering the pharmacist, I am convinced now that I was awake and thought that I was talking.

Can anyone else relate to this?

Mike

18 Replies

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  • I am an ITU nurse and so can relate from 'many patients' point of view but not personally. You are intubated with a tube in your mouth for a period of time while your lungs or other organs etc recover. When they have recovered enough we stop the sedation that is keeping you asleep and attempt to pull the tube out of your mouth (as per normal after an operation in recovery) however for many reasons people do not wake correctly (agitated, blood pressure too high or just don't wake appropriately) so a tracheostomy is needed. This allows you to still get the support from the ventilator while waking you slowly. Unfortunately with a tracheostomy or an oral tube you cannot speak as it stops air passing over your vocal chords and out of your mouth. The bonus is that after a short time the nurses can help you mouth clearly and we lip read what you say and you can hear us no problem. We have full conversations with our patients with tracheostomies and hopefully you were able to get across what you needed to. Sounds like you had a long stay on ITU and hopefully your questions are getting answered. Regards

  • Hi Mike

    Be grateful you can't remember being extubated. It is a very unpleasant experience. I described the process as similar to throwing up a Goanna (Native Australian monitor lizard that can grow to two meters long). It just kept coming and coming and getting larger and larger. It was not particularly painful just really really unpleasant. You can't communicate verbaly when you are intubated. Althought I believe I have read a reference (on this site I think) to someone talking or mouthing words with a tracheostomy. I was in an induced coma for six days and intubated for seven. I was very angry with staff also. I tried to extubate myself a number of times so they tied me down to the bed. I was in the ICU because I was injured as a result of medical negilance and not expected to live. The tying incident convinced me that I was trapped in some obscene horror movie. The drugs make it very hard to relate to reality and I was hallucinating badly. Still it was not all bad and we are both still here. I believe that the ICU expect most of thier patients to forget what they have been through as a result of the drugs. But this doesnt always happen. It has been fourteen months now and I am still having nightmares. I have a good GP who has helped me with medication. I am writing my experiences down which is making things worse in the short term but I believe will be a cure once I have completed it. I am happy to share them with you if you wish.

  • Are they allowed to tie you down?! That's awful!!

  • I believe the ICU staff at a hospital is trying to kill my mother! Any advice on what to do?

  • Gary although I have heard it before, I cannot believe in this day and age that someone in a ICU unit is tied down to a bed, especially when they know what you could be going through mentally because of the drugs. I know they will say it is for your own good, but if extubating causes a problem then lightly sedating you until it was taken out would be less barbaric.

    I just know that if they did that to me I would freak right out.

    Yes I would be interested in your experiences.

    Mike

  • Thanks for the sympathy Mike. The more I reseach it the more I find that there are a number of questionable practices in the ICU that are justified by saving your life and you wont remember it. My email is meistergarry@gmail.com feel free to contact me

  • Hi Mike

    I remember having conversations even though I was sedated and wondering why people weren't responding. It's very common and a lot of people report this, it's to do with the level of sedation and your brain trying to make sense of what is going on around you. You can become to feel paranoid because you feel people are trying to hurt you. I was reassured by the fact that afterwards nurses were able to explain things to me and draw on conversations that were going on around me. You will have been trying to communicate. i think it is very hard for people who haven't been there to understand how aware you are of what is around you in the real world and how much you hear, "see" and feel. I would go as far as saying what you expereinced was quite "normal" for such an awful, "abnormal" life event. Take care.

  • Hi Dawn, your right people who have not been through it do not understand how much of the real world you are aware of, and although I did not remember at the time I am beginning to remember things and separate what were dreams/nightmares and what really happened, but this is not the place to mention that. I only wish that I had nurses to reassure me and explain things, instead of just being placed in a normal ward where in my opinion the nurses did not know they had an ICU in their hospital, let alone the horrors ex ICU patients can go through. Take care

    Mike

  • I also thought I'd been 'talking' to people and then they told me later that I couldn't although I think they were trying to lip-read me. They gave me an ABC card to try and spell things out which I found very cumbersome and slow and frustrating as I thought I WAS talking and they were just not listening! It wasn't until the tracheostomy was removed that I realised I'd got it. Thanks to the ICU nurse above for the explanation, it's this sort of thing that we need from this site, as although I'm sure things were explained to me and my husband at the time, we were in no state to take anything in or remember it later. It's why I think the ICU diaries are so important and I so wish I had one, and some photographs.

  • I did this! When I came round properly and got the ventilator tube thing out I was convinced I'd been talking to people but it turned out I'd been writing notes, which my parents had kept. It was the wierdest feeling.

  • Hi Mike-N

    I had to have a ventilator for a while when I was in ICU just over 2 years ago with Double-Necrotising Pneumonia and Severe Sepsis .

    I remember trying to talk with my lips to nurses,doctors and my husband.

    It seemed to me that some of the nurses were very good at picking up on what I wanted and could lip read well but a lot of the time I had to try and write things down which was exhausting at the time and my writing was very bad and hard to read . I also used a spelling board which I found very time consuming..

    I have recently been involved (as a ex-ICU Patient) with London Imperial College/St Mary's Hospital in a Communication Aid Project to help design an ''App''. for Tablets for patient communication in ICU which hopefully will be a great help for patients and much easier to use than pen and notepad or spelling board !

  • that is exactly what is needed, the App!!! i finally got a clipboard and paper, but it was hard to hold the pen and write legibly for a few days... very frustrating not being able to communicate -- i needed suction and they'd say "oh, you have to keep that ventilator in, dear..." or "are you hot? are you cold?" and i'm thinking "I CANNOT BREATHE, I NEED SUCTION!"

  • I had it the other way around.

    My medical records say I was asking for my Grandmother,(I didn't ever call her Grandmother) it was Nan. and also complaining about the Doctors eating Ice cream in my room, when I couldn't eat, tormenting me, at first I laughed about it, but then realised that when this supposedly took place I had a Trach in ?????????

  • I can definitely relate to this. Sept 11, 2013, I had an amniotic fluid embolism which caused cardiac arrest, lung collapse, kidney failure, and uncontrolled bleeding. They brought my husband back to say goodbye and I distinctly remembered telling him how sorry I was this was all happening and that I was leaving him and my two boys...it took months for it to dawn on me that while I believed I had a very audible conversation with him, that I was intubated and barely conscious...my husband didn't hear those words, but certainly read them on my face. It's amazing what is going on in our own minds and with our spirits when we are dead or dying...

  • Hi amknight78, I used to be a Theatre & Critical care nurse and also had an AFE on 24.09.03, a cardiac and respiratory arrest and DIC (uncontrolled bleeding). I spent 6 days on ICU and vaguely remember being extubated and pulling my NG tube out (Naso gastric tube) but not much else except being rolled onto my side to be washed and the smell of the cleansing foam which was used to wash patients in ICU. I do also remember being asked to perform and copy simple motor tasks by Anaesthetists who were my friends and colleagues. This was very surreal and seemed like a weird nightmare but did happen as it was later confirmed my my husband. Have you fully recovered? Just asking as I've been left with a permanent disability (Right sided weakness due to hypoxic brain damage) caused by lack of sufficient oxygen to my brain and organs. Hope you and your family are well xx

  • My brother is currently in ICU with breathing difficulties and infections arising from bedsores. He's a C2 Quadreplegic and relied on a ventillator for past 8 years but despite all this was able to eat real food and drink and speak for past six years. Now he is on liquid feed and I find it hard to lip read what he is saying. I make him repeat it several times and still don't understand. H can't write or move since he got paralysed and is partially sighted since birth. He has full mental capacity and has never complained about his condition before so it's heartbreaking when he mouths "difficulty" re breathing yet his Machine Sats read he can. Has anyone experienced this feeling of not being able to breathe on a Ventillator? And know why?

  • As a nurse that has worked the ICU i can give you some insight as to why you are tied down when intubated and on mechanical ventilation. The moment the body "wakes up" and tries to breath on it's own is the golden period. Just because you try to breath on your own at that time does not mean that we can rely on it. This is why the hands are tied down. A patient that constantly extubates themselves can suffer unbelievable trauma to the tracheal muscles, and structures. It could lead to having to end up with a tracheotomy. It is traumatic emotionally, but I assure you very necessary. We don't like doing it but in order to have an emotional life, you will need to have a physical life. The ventilator has oxygen pressure sensors that provide a steady pressure within the lung fields if the diagnosis is a lung problem. When you try to take a breath on your own, this disrupts the pressure within the lungs. What the feeling is not being able to breath is not usually not being able to breath in, but rather the feeling of not being able to expel the breath that was given. When medically induced coma or even someone that is in a neurologically induced coma remains unconscious, the setting on the ventilator is usually in a mode to give timed breaths (simply set at breaths per minute). This is CMV mode... Controlled Mandatory Ventilation. (In other words, the machine gives breaths, you have no choice). Upon awakening the patient and the patient being conscious some of the time the SIMV mode...or synchronized intermittent mandatory ventilation (it gives breaths in a controlled mode but allows for some breaths by the patient). A/C or Assist Control is usually used for someone with long term ventilator use. It is usually provided with a pressure sensor. The modes also are generally used for the specific problem the patient has. If the patient has neurological loss and the brain just "forgets to breath" that does not mean there is something wrong with the lungs. However, if a patient comes in with respiratory issues like Asthma or COPD (restrictive lung disease), there is a fundamental problem with the lungs themselves. Both might be treated with mechanical ventilation, but not in the same way.

  • I was intubated and in a coma for 10 days last year. I remember hearing my friends vouce she said "its Marilyn if you can hear me squeeze my finger". I k ow i squeezed her finger. When they woke me i could hear people but couldn't see the doctor told me i was so weak i couldn't open my eyes. The drugs were strong and i had hallunications. I was eventually moved to rehab the sides of the bed were put up so i couldn't get out. I couldn't stand unaided let alone walk. It was a frightening experience. An overdose gone wrong.