a niggling concern grown bigger with the early hours

[lynnconnolly]

Hi all, ever since I found out I'd have to have OHS, I've been researching it, read everything I could find etc., and watched videos and so on of the procedures. Of all the things that might bother me, the worst is the thought of waking up in intensive care with a ventilator tube in my throat and the possibility of my hands being restrained.

I am very claustrophobic and scared witless of things that interfere with my breathing. I've never even tried snorkelling because of it. I hate things over my face... I even struggle with oxygen masks. I also hate the thought of my hands being restrained. I have this image of waking up in ITU, struggling to breathe through the tube, gagging and not being able to move or alert anyone. Or worse, alerting someone and they can't/won't take the tube out.

When I had my TOE (transoesophageal echo) - for you guys over the pond I believe it's TEE - the sedation didn't work and it was an ordeal. I was restrained by the nurses during it and after it, I felt as if I'd been attacked. It sounds stupid I know; I realise they were acting in my best interests, but I truly felt traumatised. I shook for hours and cried for hours. On and off, I find myself re-living it. That hasn't helped with the idea of waking up on that vent. I realise some people have TOE without sedation and cope fine with it, but it was my phobia that made me panic and that made it the horror that it was.

It's 1.45am here and of course, a restless night makes it all seem a bigger kahuna than it probably is, but I find myself increasingly obsessing over it. SO, I'm wondering if anyone can tell me the reality of it? I don't want anyone to spare my feelings because even if it is a bad experience, I doubt it could be worse than I am imagining. Even if it were, once I know what to expect, I can usually deal with it.

The problem with reading the literature at the hospital and on the net is a) it varies quite radically and b) most of it tends to be a bit sugar coated so as not to scare the person reading it. Well, scary or not, I just want to know what your experience of it was so I'd be very grateful if you'd tell me how you coped with it?

Thank you for reading this lengthy post... again I never write short ones do I?

Lynn

 

[kfay]

Lynn, being just two weeks out from my OHS, my memory of it is probably a lot more vivid than someone who is a year or more out. For what it is worth, I am clausterphobic as well. First of all, they did not restrain my hands. They told me husband they probably would because alot of people try to pull it out. I left it alone, so they didn't restrain me. I had my surgery on the 10th and they took it out of me at 3:45 am on the 11th. It really isn't that awful. When I would wake up, they would just tell me everytime that I was still intubated and to just "breathe" with the machine. That helped me. Of course, I would fall back asleep and we would go thru it all over again. My husband was there and since we both know sign language, it helped me communicate with the nurses. After he went back to the hotel, they gave me paper to write to them. You want the ugly as well, so I'll tell you. The worst part for me was that I started vomiting with the tube still in. I think alot of times they put in a GI tube to prevent just that, but for some reason they didn't with me. After I got sick, there was debate about putting one in but they decided not to at that point. Pulling them out was just a bit of momentary uncomfortableness for me. Please feel free to pm me if you want to talk about anything else. Try and relax, it really, really isn't nearly as bad as your mind can make it.

Kim

 

[lynnconnolly]

Hi Kim, thank you for your reply. It's a big help to know the reality of it and I'm grateful for your honesty. I'll try to keep it in mind that the restraining thing might not happen if I don't try to interfere with the tube. It must have been pretty horrendous to vomit with the tube there, and thank you for telling me about it.

I hope you're recovering well and thanks again.

Lynn

 

[Bridgette]

Lynn, for your TOE why did your sedation not work - didn't they give you enough or something? I am just wondering because for mine I was sedated but still aware if you know what I mean - and I didn't feel anything - no pain just a slight "discomfort" as the cardiologist put the tube down my throat. Once it was in I just had this relaxed feeling almost like being away with the fairies lol, but I can still remember watching him as he was operating the computer screen and scanning etc...

As far as when they took out the breathing tube after my operation:

*I was semi awake when they did it and can remember the anaesthetist saying to the nurse, "Ok she's fine, let's take that out now" ...

*It did not hurt - it is out so quickly and honestly you probably won't even realise they are doing it because you will still be quite groggy...

I think we all have different fears about surgery and what happens afterwards - the ventilation tube was not one of my worries. My big concern was memory and mental function post op - you know, remembering my pin number for my bankcard, vital phone numbers etc - it sounds silly now I guess but at the time I was quite worried.

Lynn I think you are going to be fine - if you are really worried about the tube maybe you could talk to a nurse or counsellor about your fears and see what they could suggest that might help.
Have you tried meditation exercises - I know people that say they have helped enormously.
Also, if the hospital staff are aware of your concerns re the tube they might be able to give you stronger/extra sedation when they remove it.

Good luck
Bridgette

 

[Cooker]

Hi Lynn and welcome to the zoo ...Here is my story...I woke up restrained with the vent in and fighting....The nurses were right there (they know when you are coming out)...They calmed me as best they could and took the tube out within a few minutes...it was unsettling but I was so doped up that I really did not freak too bad....I remember a thirst like I never had before...I would have sold my soul for a glass of water but all they would give me was ice chips...I was soon aloud to drink and all was right with the universe

I almost did not post this...thinking it was too blunt and to the point...but you asked for our experiences....all in all if I have to have another OHS I will not fear..... it was not near as bad as I had imagined....I am sure you will do fine.

 

[Jkm7]

My first OHS, I was very concerned about waking with the vent still in. I remember waking, my DH was beside me, the nurse told me I had the tube in for a little while longer and I noticed my hands were loosely tied to the bed rails with strips of gauze. I then fell back asleep immediately. When I woke next the tube was gone and I was fine. I had no memory of them removing it.

My second OHS was 8 weeks ago. Because the first surgery had not been a bad 'tube experience', I was not particularly worried about it this time. It lurked somewhere in the back of my head but I had so many other things to think about, it wasn't high on the list.

I clearly remember waking in the same ICU this time and the tube was still in. The nurse told me he would be taking it out in a few minutes. That's the last I remember until sometime later when I woke again. Tube was gone and again I had no memory of it being removed. They did not tie my hands this time. I guess I wasn't trying to remove it. Seeing as I was only in ICU for about 12 hours before moving to step down unit, the vent was a non-issue for me particularly the second time. I never even asked DH or the nurse or anyone how long I was in ICU with the vent still in. It hadn't bothered me at all and that was not anything I was thinking about.

You'll do fine. Anticipation is almost always far worse than the realization. The ICU staff know we all fear the vent and want it gone ASAP and they wil remove it as soon as it is safe for you. I have found the ICU nurses to be amazing. The two who cared for me this time had to be the best in the world. I can't thank the nurses enough. Bless the nurses.

Good luck. Don't worry about it.....it really isn't as bad as you might imagine.

 

[WayneGM]

The thought of the vent tube scared me too. That, and the catheter

There were no restraints, but when I woke up I was so weak and out of it (from the drugs) I couldn't move anyway. I only vaguely remember the vent. It was gone before I completely woke up. It wasn't nearly as bad as I had feared.

 

[ctyguy]

I was told I tussled when I first woke up with the vent in, honestly I don't remember that, my wife told me that I was sedated again and that about 1 hour later they brought me back out of sedation. I know I wasn't happy about having the vent in and I remember shaking my head yes and no to acknowledge questions. My eyes were closed at the time but I remember shaking my head to questions. I don't remember the questions though ! The next memory I have is sitting up in bed waking up completely and the tube was already out.

So I guess my point is it wasn't nearly as bad as I thought it was going to be, I was worried about the vent just like you are. But if your experience is anything like mine, you won't remember the vent actually being in or it coming out. Even though I remember answering questions I don't remember the vent itself, sounds odd but thats my experience !

 

[Adrienne]

My hands were not restrained. As for the tube, I woke up with it, but I was so doped up that it really wasn't bad. As I woke up, my husband told me how well the surgery had gone. It was such a relief that I didn't care about the breathing tube. Besides, I went back to sleep a few minutes later, and the next time I woke up, they were removing the tube.

By the way, I hated the TEE as well, not so much because of the long tube you have to swallow, but because of the obnoxious gook they spray in and make you swallow. I also was crying at that!!

 

[lynnconnolly]

Hi and thank you all so much for your replies. I really appreciate hearing the good and the bad. My thinking is that if I'm aware of the bad as well as the good, then I will be fully conscious of all possible scenarios, which makes me feel in control, which in turn makes me less panicky.

And Cooker, thank you for deciding to post. I knew that I could rely on you all to be honest.

Thank you too to everyone who replied about the fact that their vent experience wasn't traumatic. As I said, the more of both sides of the coin that I can hear about, the better

 

[Freddie]

VENT?????
I had a VENT????

I kinda woke up with something in my mouth, woke up again and it was gone.
I guess they gave me some REALLY good drugs - didn't feel a thing. If my arms were restrained I didn't feel that either.

Lynn, maybe you should explain to your doctors about how you are feeling in regards of the vent and being claustrophobic. And tell them more than once that your feeling really uneasy.

You need to feel confident in the process and maybe your doctor will understand why you feel the way you do and inform the ICU staff so everything can go smoothly for you.

In the meantime, please try to relax and imagine white sandy beaches and claim waters.

Take care

 

[ALCapshaw2]

First, TELL your Surgeon of your fears (maybe even print out your post and give it to him, and the ICU Nurses)

Second, if your Lungs are in good condition there is a good chance they will pull the tube before you are even aware of it. That was my experience, BOTH times.

'AL Capshaw'

 

[cp172]

Lynn,

I had OHS on Feb 7th. I woke up on the vent and was happy becuase I knew the surgery was over...also I was on some good drugs.I was aware of the vent but it did not bother me. My cath did not bother me.I was not terribly thirsty.I sleep a lot between visits by family in the ICU.

Matter of fact I do not think anything bothered me. My surgeon told me that the drugs would cause me to forget a lot of what happened and he is right.My wife has had to tell me about most of the first few days.

Please do not worry. You will do just fine.I worried about everything and on hindsight it was a waste of time.

 

[MaryC]

Lynn,
Waking up with the vent tube was one of my biggest concerns, too. Part of the reason for this was I have 2 siblings who had OHS ahead of me and both had a bad experience with the vent...and I witnessed it. Anyway, when I went in to have the TEE I just kept telling everyone I spoke to how nervous I was about having the tube down my throat. As a result, they gave me so much versed I didn't remember any of it. Then when it came time for my OHS, when the anestiologist called me the night before, I also went into great detail about my fears and asked him to give me additional versed. All I know is I didn't remember waking up with the tube....maybe I did but I didn't remember it.

Chris

 

[pamela]

The first time I woke I didn't remember the vent tube but I did remember them hoisting me for the chest xray. It was awful and hurt quite a bit but then I was knocked right back down before I was fully aware of the agony.

The second time I remember waking in a bit of a panic with the vent tube in. It was a genuine struggle to relax and they removed it within a really short time. I was left with a sore throat and a bit of a wicked memory about that experience. I'm ready to outlive this valve and if I need to, the ventilator fear won't keep me out of the OR.

Take heart. Your anesthesiology team will do all they can to keep you comfortable and ease your concerns. The beach is a nice image or you can think about the view across the lake here in the north...

 

[Gusdog]

Lynn - I hope you're sleeping now. I had a bit of a rough experience with the vent. My airway was really difficult to intubate, so they left my vent in longer than they normally would to make sure I was ready to be off of it. I'm also really claustrophobic, and I'm prone to panic attacks, particularly when I feel like I can't breathe.

When I woke up, I was much calmer than I expected to be. I did start to panic a bit later, and I ended up writing that (because my charades weren't getting the message across to my wife or my dad). At first, the respiratory therapist said that my sats were fine, so I should be fine. However, I insisted (with my wife's help) that I was freaking out a bit, so she said she would make sure I got something to help calm me (which was really all I wanted, knowing I wasn't really suffocating or anything). Five minutes later, I was fine. Had no problems the rest of the time.

I also thought extubation would be worse; I watched my dad when he was extubated, and while he doesn't remember it at all, it didn't look pleasant. It wasn't bad at all. And it was so nice to be able to talk again.

Anyway, like you I was worried, but it really wasn't bad at all, even with my little panic. And I'm not sugar-coating it. Most likely you won't be on the vent as long as I was. My dad doesn't even remember being on it.

Do mention your anxiety to your surgeon, and anyone else that may be able to help. Make sure they know that the sedative didn't work during your TOE.

Really, the whole experience was not as bad as I imagined. The worst for me was being cooped up in the hospital (I was there for 9 days; I started having SVT right before they were about to release me, and getting on sotalol to fix my rhythm kept me in for an extra 4 days). Blood draws also were bad, because I have lousy veins, and the food was dreadful. Really, my experience was good enough that I could worry about mundane things like lousy food. It really was much easier than I had anticipated.

 

[Dina]

[COLOR="Purple"...I remember a thirst like I never had before...I would have sold my soul for a glass of water but all they would give me was ice chips...I was soon aloud to drink and all was right with the universe[/COLOR]

Im with Cooker on this; I woke up SO thirsty and of course you cant drink while intubated. They took me off ventilation about 3 hrs after I woke up.
The respiratory therapist will come around and test you to see if you are capable of breathing on your own. With me the first therapist that tested me
did not properly explain how she wanted me to exhale strongly into a tube
(so instead I breathed IN)and instead of noticing that i misunderstood her,
she told the nurse I wasnt ready, I was so upset.I wrote the nurse a note
and she got a different therapist who was much more patient and he ok'd
me to be extubated. I must have drank a bucket of water.
I also have high anxiety,and some claustrophobia. I also dont care for masks.
I hear that some stay on vents longer than I did, but you are young and
if you dont smoke its better.If you do smoke , try to quit before the surgery
to get your lungs in shape,even a couple weeks will help.If you need any
thing else mail me, Im 11 weeks postop , but I have also spent alot of time
in hospitals other times as a patient and as a nurse.
Best to you,

 

[geebee]

I am very claustrophobic and the breathing tube was not my favorite experience for any of my surgeries. However, each time I learned a little bit more. The important thing is to breathe through your nose. This was very hard for me to learn because I am a mouth breather and that is why things on my face or in my mouth are problems. However, keep remembering that, should you feel the need to breathe (and remember the tube is breathing for you), do so through your mouth and you will not panic. This worked for me as well during my TEE and I was not very sedated either during mine. Once I remembered the nose breathing, the gagging was controlled.

The worst thing for me with the breathing tube was when the nurses suctioned out the tube. That did cause a gagging, panicked feeling but it only lasted a few seconds and I tried to keep in mind that it would be over very soon (and it was). My hands have never been restrained that I recall.

I wish I were one of those who do not remember the tube but I guess I am just not that lucky. However, it is survivable and does not last more than a few hours of aware time.

 

[lynnconnolly]

Hi everyone, and thank you all so, so much for your replies. It is really helping me to get a grip on the thought of the vent. When I had the TOE done, apparently they gave me twice the usual dose of sedative and therefore couldn't give me anymore. I've no idea why it didn't work, but I'd take a guess that panic and adrenalin over-rode the sedative.

Also as Adrienee says, the awful spray before the TOE was horrendous and that was what set my panicking off. My whole mouth was numb and I was struggling to swallow my own saliva, then they just launched ahead leaving me feeling like I was going to die, and for a while, just a few seconds, I wouldn't have been sorry if I had.

I'll do as many of you have suggested and bring it to the attention of anyone who'll listen. I have an echo this afternoon, so if I see the cardiologist today, I'll talk to him about it. I'll also try to ensure that there's a pad and pen handy when I go for the surgery.

Breathing through the nose is a good idea too. I'm sure that would lessen my feelings of suffocation and make me feel more in control.

Again, thank you all for sharing your experiences with me; it's helping such a lot

 

[Bonzo Dog]

Lynn, there was a thread on here in the last couple of weeks with some breathing tube post op discussion. It seemed based on a few replies, the tube in throat on waking arrangement was more of a North American thing. Certainly in Leeds I've come around twice with no tube in situ or hands restrained or eyes taped. No one else post op in Leeds mentioned it. Other UK based VR folk replied in the previous thread echoing my tubeless experience. It's the Consultant Anaesthetists who run the coronary ICUs over here. Seek your reassurances with them, the Cardiac surgeons are not the guys who control that aspect.