Tell me about your ventilator/respirator experience

Due to medical threads in the past talking about someone being on a ventilator or respirator I’ve become curious. For example, in this thread about purplehorseshoe’s husband she talks about him being on a ventilator and conscious, communicating with those around him.

What is this like from the patient’s perspective? I can’t imagine it’s comfortable having a tube going down your throat into your lungs (well, the upper part of your bronchial tube). How do you keep from gagging? Or do you gag? Do you get used to it or is it just this horribly uncomfortable thing the whole time?

I can’t imagine it’s a wonderful thing to have something forcing air into you, either.

What about the tracheotomy/ventilator combo? Is there pain from the hole in the throat? More discomfort? Less?

Anything I forgot to ask about?

Had the tube taken out whilst conscious, but only been ventilated whilst under GA (too many times to remember the actual number). Had it done last week as a matter of fact.

The extractions are strange but not painful, I would say they were uncomfortable and it does leave me with a sore throat for a day or two afterwards. You get told to breathe out and as you’re doing that they gently pull the tube out, takes maybe 5 seconds.

My only conscious moments whilst having the tube down are the seconds before the tube is pulled, so I don’t even have a chance to realise I have one.

Naso-gastric tubes on the other hand bug the hell out of me and I need to be sedated (midazolam ftw) for them to be put in and I hate the sensation of having them in place and they do make me gag constantly and I drool rather than swallow because I can’t cope with the sensation of swallowing with a tube in place.

NG tubes and PICC lines freak me out.

Sorry I couldn’t answer your question any better.

No, I appreciate your answering.

Partly, that’s something that I fear, probably at least in part through cultural indoctrination and I’m hoping by understanding it better it will be less frightening. You don’t make it sound wonderful, but on the other hand, it doesn’t sound like a horrific painful experience. Icky and uncomfortable, but a lot of medical stuff is that way, isn’t it?

Yeah, I would say that that’s fair.

It is not pleasant but it is far less unpleasant than some of the things that I’ve had done.

I think it helps that when I have had it done it has been in the recovery phase of anaesthesia and you don’t really care about anything at that time, you just want to sleep.

Hope you don’t mind some professional response?

I slept through being intubated for surgery, but I’ve cared for plenty of intubated pts, and heard some interesting stories. A lot of it is getting used to what’s happening. I’ve have pts on cont infusions of Versed, a short acting drug related to valium, that were stoned, but awake enough to write or work a TV remote. I’ve had a 4 y/o in this state, ‘laughing’ a jokes me and grandma were doing. Not actually making any sound, you understand, but smiling and moving the chest wall in a way that makes the vent pressure alarms go off briefly.

Now the ventilator has multiple settings to allow us to match the pts best effort, we can go from complete control were you program rate, volume and pressure for the pt who is making 0 resp effort, to allowing the pt to set their own rate and depth of respiration with only a little pressure support from the machine so that they don’t have to ‘suck’ as hard to get a breath. Weaning the pt ventilator support as drugs or disease resolve is a normal part of treatment.

I’ve never seen this myself, but I’ve heard stories about people with chronic lung disease that have been intubated multiple times and chose to squeeze the bag attached to their tube during the transport from ER to ICU, rather than have someone else squeeze it for them. As I say, I’ve never seen this, but it’s not out of the realm of possibility. I have had many people that cath their uninary bladder repeatedly, and ask to have a foley placed, and I’ve had people with multiple bowel obstructions request an NG tube, and I’ve had one that offered to place the tube themselves.

One of my co-workers told me about a pt who was stung by a bee and stuck a piece of tubing down his own airway and walked in the front door, and I have no particular reason to doubt it. While we have a powerful drive to keep shit the fuck out of our airway, it can be overcome.

Thats the only way I can pee now, have done it urethrally but didn’t like it much so they made me a small hole in my abdomen through which I can pass the catheter. Done it so many times over the past 12 or so years that it is no big deal. Go to the loo, pop the catheter in, pee, pull it out and I’m done.

I’m sorry, but this is probably going to come across as very angry, but NO, that is exactly NOT what I want.

outlierrn, you start with the presumption that I have never seen an intubated patient. I have. More than once. Most particularly my mother. The last time the doctors said she needed to be intubated she demanded enough Versed to wipe her memory. She found it better to obliterate six months of her life rather than remember even one minute hooked up to that machine. After that, she said she would rather die than be on a ventilator again and she meant it, and indeed, she never was again.

So, you see, on a certain level I need to know if this was just something mom couldn’t face - my mother had a LOT of things she couldn’t handle that I cope with easily enough - or if it is something truly horrible for everyone who has that experience.

So, no, I don’t need or want a “professional” litany of how you dispense drugs to “ease” the suffering of your patients. Doctors lie. Just because someone doesn’t remember pain or distress doesn’t mean they didn’t have it. I watched my mother suffer for months, struggle against the machinery for months (when she wasn’t sedated unconscious or maybe it was just immobile). SHE never remembered it. I do. Doctors make hard decisions all the time, I know that, but they don’t have to live with the consequences. What’s right for one person is a living hell for another.

I want to hear first hand accounts. That’s very clearly what I asked for in the OP. I want to know what the subjective experience is like. I don’t care if it’s good, bad, or horribly ugly I want to know the truth not in the medical sense but rather from the human viewpoint of the person who actually experiences it. In all the details. I don’t want reassurance I want the truth.

Unless you spent time on a ventilator and remember it you simply can not answer my questions regardless of how much medical training and experience you have. This isn’t about being a doctor or nurse, it’s about being a patient. I fully realize that the answer will vary from one person to another because what one person finds tolerable another finds intolerable. It’s a question about the human condition, not about science, which is why I put it in IMHO instead of General Questions.

So, again, sorry if that came across with some anger but the truth is I have a LOT of anger around this issue. I didn’t really realize it until you posted here and I had to figure out why your words made me so furious because clearly that was not your intent. Nonetheless, there it is.

So, one more time: tell me about your experience(s) being on a ventilator. Not your patients’ experiences, or your friend’s/relative’s/someone else’s experience, I want to hear about YOURS.

It isn’t horrible.

They put it in while I was in a coma so I don’t know if that part hurts. I pulled it out a couple times, the last time almost dying because they couldn’t get it back in fast enough. That’s why, when I finally came to, my wrists were cuffed to the bed.

But once awake I didn’t actually feel it. Mine went in at the base of my throat, below the vocal chords, so I couldn’t talk. I would mouth words. (Couldn’t seem to write yet.) But there was no gag relex etc. from that. It was a medical necessity that could have been in my hip, or my leg. (It felt that removed.)

I hated it, tho, because the ventilator didn’t move fast enough for me, once I was aware. I wanted more air, more frequently. I’d had ARDS and basically had been suffocating to death. They describe it as “air hunger.” :rolleyes:

But really, the trach wasn’t that bad. It was the tubes they’d threaded down my throat that made me feel like I needed to gag them up. They’re what damaged my vocal chords. Once out and singing again, my voice was like a guitar string getting ready to break; never knew what note was going to come out. But after months and months of practicing I was able to get it back under some control.

Your mother may have been reacting to some tubes actually stuck down her throat. Or, too, she might have felt like she just wasn’t getting enough air from the ventilator. She was feeling discomfort from something.

I know it was a hard time, I really do. But the time that those medical procedures bought were that much more time you got to have with her. She was probably (I’m projecting here) in and out of consciousness but at some time saw your face, and was glad.

Considering the amount of other medications, including painkillers (Mr. Shoe’s been getting a bit of Fentanyl), that can interfere with long-term memory, I wonder how many people will only remember little fragments of their time, bits and pieces of being on a vent but with no sense if whether discomfort was momentary or long-term. For example, it seems like, in Shoe’s case, he’s present in the moment, and may have a short-term memory of something, but not retain it into the next week.

Sorry 'bout your experience with your mom’s care. Just curious, though: when you say she was intubated and on a ventilator, did you mean the kind of hookup where the patient’s end of the oxygen tubing goes into their mouth, or via a hole in their trachea? Because based on Shoe’s experience, FWIW the former is much, much, much more uncomfortable, since it’s constantly gagging the patient.

Anyway, sorry it was so hard on the both of you …

I was briefly conscious while they inserted the ventilator tube. They pounded it in like a stake. I woke up again a couple of days later and kept trying to get rid of that thing in my throat, so they put me in restraints and sedated me. I woke up a while later and they were removing the vent tube, which was, like Szlater says, uncomfortable and also somewhat painful for me but nowhere near the worst pain I’ve experienced. I do remember the extraction as particularly traumatic, but that’s probably because I was simultaneously realizing I was not dead, and I wasn’t real happy about that. I wish I could tell you more, but I was mostly dead while I was on the ventilator and don’t remember much.

No, actually, she was terrified just about the whole time, regardless of whether we were there or not. There might have been some recognition of us, but mostly there was just disorientation and fear. My mother had some psychiatric issues, among them problems with anxiety and fear. Until she entered hospice the doctors seemed quite willing to drug her unconscious for pain but completely unwilling to address her fear.

The only peace she had was when she was knocked unconscious. I can’t help but think six months of being in a terrified state, whether she remembered it or not, could not have been beneficial to someone recovering from heart surgery.

It didn’t help that mom was terribly hard to sedate. It took more than expected for a woman her size, and she had a strong tendency to metabolize it quickly. This extended to problems with anesthesia. She actually did wake up in the middle of one of her surgeries, but was unable to communicate that fact. The doctors flat out disbelieved her until she described about twenty minutes worth of OR conversation and sounds, at which point they were forced to admit that yes, something had gone wrong. Despite this being in her medical records it was a repeating theme with her waking up early post-surgery and trying to leave, trouble sedating her, and problems with pain control. No doubt all that contributed to her fear and loathing of hospitals and the near-panic state she was so often in during ICU stays.

Is it that they sedate people on ventilators because it’s so horrible they don’t want them to remember, or is it that people on ventilators are usually so sick they’re sedated/drugged up for other reasons?

That was a problem with mom – you could explain what was going on and she’d relax for, maybe, five minutes then she’d forget all about it and just know she was in an ICU with painful/undignified things going on and she’d start to struggle.

Perhaps I should note that that six month stretch occurred 30+ years ago. It wouldn’t surprise me if some changes have been made in procedures since then.

Post-surgical complications of heart surgery. As I was still a minor at the time I was “protected” by being kept in ignorance. While that may be of benefit for some, my personality is such that I would have been MUCH better off with a full disclosure of what the hell was going on at the time. I still can’t get a decent answer out of my older sisters because so much time has gone by everyone’s recollections have gotten fuzzy. What is upsetting to me is not knowing. It’s like when someone got all concerned about my taking care of mom in her last days because, you know, mom might die (actually, it was a certainty) and how upset would I be about the dead body? Answer: dead bodies don’t upset me. Mom being dead upset me, but her empty shell didn’t. She wasn’t the first dead person I’d seen, and frankly, despite her long decline, in better shape than most of the dead people I’ve seen. I lost my fear of dead bodies when I actually saw my first dead body. I stopped being afraid of dismembered body parts after I saw my first detached limbs (aftermath of a train vs. person suicide). Mind you, I don’t enjoy looking at such things, they are icky, but the reality was much, much less worse than my imagination.

I would prefer never to experience being on a ventilator myself, but I am interested in alleviating my fears here. I don’t want false reassurances. If someone had a horrible experience I want to hear about it. On the other hand, if most folks come in here and say “it wasn’t that bad” I’ll take them at their word and chalk up some of my mom’s extreme distress to her own personal issues regarding medical stuff rather than a general rule.

But to answer your question – mom never had the hole-in-the-trachea thing, just the tube down the throat. I think they were putting her on it and taking her off it a lot. As I said, I was a minor and over-sheilded, old enough for a couple trips to the ICU to see mom but apparently not worthy of being told what the hell was going on. Again, despite the tubes, machines, mom looking like hell, and so on I actually found the visits to me very reassuring to me, although some of the other adults were upset as hell over it, or upset that I was even allowed into such a place.

I’m sure it’s quite difficult deciding what any person – regardless of age – should be exposed to for extreme medical things and it’s going to vary all over the place. One of my sisters can not handle these things at all. Well, we’re all adults now and have some understanding of each other, and some respect for our respective limits. When mom was in hospice that sister was asked if/how often she wanted to see mom and the answer was invariably “no”. Which we respected. She did a lot of other things, like grocery shopping and errands and paperwork chasing while folks such as myself, who aren’t thrilled with things like wiping mom’s ass but not traumatized by it either, did what needed to be done for her physical care. My other sister happens to be a doctor now, and a hospice director, so for mom’s final decline I actually had someone I could ask questions and trust to answer me without needless sugar-coating.

Yes, I asked her this question. She admitted she wasn’t entirely sure how uncomfortable all that was, not having experienced it herself, and indicated that it did vary considerably. Hence my coming here hoping for some first-hand accounts.

For whatever it’s worth, my mother is the same way. It’s like she’s simply immune to morphine and other opiates. (Which made it very difficult for her to grasp how or why my cousins became addicted to heroin, but that’s a thread for another day.)

Frankly - and I don’t mean this negatively - I don’t think they really care much whether or not patients remember something horrible down the road. In the ICU, the focus is: keep the patient alive. That’s it, that’s the key. So, in Mr. Shoe’s case, he was given sedatives if/when his heart rate and/or blood pressure went up too high. It didn’t matter so much** what was causing that; what mattered was that a high BP or heart rate was putting extra stress on his heart. Extra cardiac stress (when he was already suffering heart failure) might cause him to die. Ergo, reduce the stress on his heart, by sedating him to lower the BP and rate.

This is not at all to suggest that ICU staff are heartless - my experience has been the exact opposite. If a patient is conscious, they want to minimize pain. If a patient is lucid, they want to talk, joke, encourage a good mood. But at the bottom of it all is: keep the patient alive.

Technology marches ever forward. I’d be shocked if significant (not just “some”) changes *haven’t *been made since then.

I do not speak from experience, but I have been told by numerous nurses and staff that this is very unpleasant (the constant gag-reflex thing).

** Well, obviously, yes it did, in the sense that the possible causes were immediately investigated. But even more immediately, was treating the immediate symptom.

Thanks for your reply outlierrn, but I’m really just interested in reading first hand accounts. I’ve already spoken to some medical professionals about this, and the purpose of this thread was to get responses from patients who have actually gone through this process.

Jesus, it was so difficult to type that I think I strained a muscle.

I have some semi-conscious memories and some extremely conscious ones, but now I feel a little intimidated that I’ll be publicly chided for saying the wrong thing accidentally.

I hope all works well for you, Broomstick.

Uh-oh. Looks like we’ll have to intubate you.



If it’s a first hand account it can’t be wrong in this thread.

Well, being a health care professional and as such, clearly a liar and all, I’m sure my experience counts for absolutely nothing, so I’ll leave you with this:

If you ever MUST be on a ventilator, you’ll be grateful as hell that such a thing exists at all.* Most life-saving procedures are painful, uncomfortable at best. Some patients do better with them than others–and NOBODY has any way of knowing which will be which prior to the intubation. Rather than getting nasty about Versed and other things like it, be glad such things exist. I was an ICU nurse before Versed was even available. I’ve had to paralyze patients to maintain their LIFE SUPPORT back in those days.

As purplehorseshoe said so well, it’s all about KEEPING THE PT ALIVE. If you’d rather drift in a cloud or no pain/being comfortably numb, perhaps you need to make those wishes known. IOW, there is nothing anyone can truly say to eradicate your fear of being intubated–you may not react to it the same way your mother did. May you never need it.

*Which doesn’t mean you won’t fight it, much like everyone else does. It’s instinctual to not want something crammed down your throat. Tracheostomy tubes are much more comfortable (usually called trachs), but they are also only done for people who need longer term vent support. Trachs are invasive and come with their own risks.

And it all comes down to risk: the risk of discomfort and even pain is worth the saving of a life.

You’d think, huh?