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K

Kay

Hi,

I'm new to this board but was so impressed with the friendly and compassionate atmosphere as I read some of the posts that I decided this was the place where I could get some advice from people who are in the same boat or who have already been through it. I was touched by the helpfulness and caring family feeling as I read through some of the previous posts. I've been searching the internet for answers to some nagging questions but they're questions that can only be answered by someone who's been there.

I'm facing aortic valve replacement within the next few weeks. A heart cath last January indicated that my AS was not as severe as it appeared on the echo and my cardiologist estimated that I had another 2-3 years before surgery. I was elated and totally put the surgery out of my mind. I had another echo this past June and although it had tightened a little more I was still asymptomatic and doing well. During the summer I noticed more fatigue than normal and it seemed everything I did took more effort, but hey, I work myself to death all the time, and it was summer in Texas after all. Then I almost fainted in Costco. Thought it was just because I hadn't eaten. Then it happened again, then my feet and ankles started swelling for the first time ever. Back to my cardiologist last week. Another echo showed increased velocity, 43 up from 38, and the valve now 6.5mm (was 8.5mm in June). He put me on Lasix for the edema and is seeing me again on the 27th of this month. I will meet the surgeon, discuss options, etc, and get the process started. Not exactly the way I planned to spend the holidays I might add!

My main question is this...

I have no fear of the surgery, am prepared for the pain and recovery, etc, but I am obsessing about being on a respirator when I wake up! Everything I read says it can be 1 to 3 days before you're taken off the respirator, and if I'm understanding that I AM AWAKE during that time, it terrifies me. Guess it's my claustrophobia rearing its ugly presence but I can't even begin to imagine what it would be like to be AWAKE and on a respirator. I'm even thinking of undergoing hypnosis because the fear of waking up on the respirator is so unsettling. I guess another issue for me is that I'm allergic to most serious pain meds complicated by very low blood pressure so I never experience that la-la land state where you really don't care or know what's going on. I have a feeling I'll be very aware of my surroundings and all I can think about is that respirator!

What I need is to hear what it's like from patients who have been through it AND the much clearer memories of the spouses who were by their side. Am I making a mountain out of a molehill? I pray so! Does it hurt when it is removed, make you gag, etc? Is it over in a hurry? I know this sounds ridiculous and it sounds ridiculous to me as I type it, but I panic everytime I think about it. It's such a minor issue in the grand scheme of things. I have a fabulous cardiologist and a top valve surgeon at an excellent hospital and my logical mind knows I have nothing to fear. Above all, as a Christian, I know I have NOTHING to fear. Then I think about that respirator and it starts all over again! Help!
 
Hello Kay, and welcome :)
First of all, I just wanted to say that this is a question that comes up over and over again. It seems to be the thing that a lot of people worry about a lot.
My boyfriend Jim had his aortic valve replaced in December last year. Although he was "awake" whilst on the ventilator, he now doesn't remember it at all. In fact he doesn't even remember the fact I was there while he was still on it :rolleyes: . His surgery was in the morning, I got in to see him at about 4pm (it only took so long because I was waiting at his parents' house until we were able to call for news - I would recommend any spouse, partner, or parent to be at the hospital - it's not a nice feeling being 45 minutes away but we were not terribly well informed by the nurses prior to the op :( ) and the ventilator was removed at about 5pm. I think it literally takes a second or two to come out (we were ushered into the waiting room at that point although there are a lot of people here whose partners stayed, or who stayed with their partners).
From what I've read, the main thing is to not fight the ventilator - IF you are aware of it, try to breathe with it. As soon as the nurses are confident you're awake enough to breathe on your own, they will remove it. Where the 3 day timeframe is quoted, it tends to go along with complications for which the patient would probably be kept sedated.
Do you know if your low blood pressure is connected with your valve problem? Jim had a very wide pressure prior to his op (160/30 at the pre-op check-up :eek: ) but it is now normal. It may well be you find the same thing happens.
There are a lot of threads on how to cope with the ventilator if you do a search - just go to the top of the page in the blue bar and click on "search" then type in what you're looking for.
The important thing to remember is that it's just there while your body recovers sufficiently from the anaesthetic to be able to breathe again. It's not an enemy.
Good luck, and if you have any questions, no matter how trivial they seem to you, ask away :) - chances are someone's had the same worry in the past.
Gemma.
 
Welcome Kay!

I had Aortic Valve Repair at 16 and now at 37 I am scheduled to have it replaced on Oct. 15.

I too have fears about that stupid breating tube! All I can remember of ICU the last time was being woke up to take it out. I remember them saying take a deep breath, 1,2,3 and out it came. It didnt last long but I remember being VERY thursty! My mouth and throat seemed to be very dry. But I fell back asleep and the next thing I remember is waking up in my hospital room.

All I can say is if you have "no fear" about the rest of it, then you have nothing to worry about with the breathing tube! I have had OHS before but I am still scared S***less!

Keep us informed on your condition and feel free to post any and all questions
Welcome to the Family!
Jeff
 
Well just call me respirator man. I've been tubed so many times that it's not funny.

It is possible that you will wake up tubed. Not likely, but it's possible. If you awaken with it in, try to talk your mind into synching with the cycles of the ventilator. Take your breath in through the tube when the machine forces the air and expell the air through your nose as the machine cycles for the next round. If you can do that, it makes things so much easier. If you fight it, it is very uncomfortable. In fact, it downright sucks!

The tube will be taken out as soon as you can breath for yourself. If you've never had lung problems before, it'll probably be gone before your awake fully.
I have a lung disease and I've been on the respirator more then I care to think of. We have a hate-hate relationship for each other. It hates me and I hate it right back. I have enough experience to say this. My first round was a lung biopsy and I ended up on it for 5 days. Second was my first heart surgery and I ended up on it for 30+ days. My last was my second heart surgery and I ended up on it for 40+ days. It is no fun, I won't lie, but it's tolerable if you work with it.

If for some reason you should need to be on it longer then 10 days, they will trach you instead and that is much better then having it in your throat.
 
My husband had your same concerns over the Respirator tube. He can't even stand to have the doctor check his throat with the popsicle stick. He was so dreading waking up with the tube down his throat. But, he was only awake a short time before it was removed and he says he can't even remember it being in or being removed.
 
Not to worry. I came to and went back to sleep maybe 3 times when I had the tube, and I recall none of it. When I finally did wake up I realized that the tube was there. Before the surgery I mentally went through the waking up process, and told myself that when I did, I should relax and let the machine do the work. I seemed to be awake no more than a minute when they came and took the tube away. No pain or discomfort. You will be fine.
 
I remember the tube vividly...

I remember the tube vividly...

I had the same fear of it before the surgery, and was afraid I'd feel like I couldn't breathe, or panic and try to fight it or rip it out, and wind up restrainted and terrified. And my gag reflex...I could only imagine.

But here's what happened...

I woke up, and found I was in a sitting position, with a circle of people around me, including technicians and my wife and son. The very first coherent thought in my mind was, "It must be over. It's done. I'm alive!" I immediately caught on that I couldn't talk.

Because I knew there might be a tube, I realized what it was immediately. However, I didn't feel any panic. I felt like I had plenty of oxygen. I wasn't gagging at all (it goes way past your gag reflex). I didn't want to keep it in, because I wanted to talk and breathe on my own, but I didn't feel any real agitation about it, either. There is some difficulty if you try to breathe against its pattern, as it overwhelms your sleepy lungs, but you don't feel like you're choking, or out of air. Unlike Ross's machine, mine was very quiet, and I couldn't match my breathing rhythm with the noise.

My problem was that I had kept waking up, trying to breathe, and indicating that I wanted them to turn it off. As soon as they would oblige me, I'd relax, fall back asleep, and quit breathing. Thus, they had kept me on it.

Make sure someone you trust will bring a pen and pad, so you can write notes. That greatly lessened any anxiety I had, as I was able to communicate, which I saw as my biggest problem.

It is somewhat unpleasant when they squirt water down the tube and suction it up again, but really not bad, and the air comes back on before you can panic.

When they take the tube out, they start pulling and you start trying to help push it out with your throat. However, it is like the magic kerchief trick, where the magician just keeps pulling an endless string of colorful handkerchiefs out of your mouth. That tube just seems to go on and on. Again, though, it finishes coming out long before you get panicky.

The only thing lasting from it for me was a fat lip from a clip that help it in place. I have been informed since (from this site, of course) that a piece of tape holds the tube just as well, and I should request one next time.

It really, really is no big deal. If you do wake up with it, just relax and don't fight it. After all, it will have already kept you alive for hours.

Best wishes,
 
Welcome kay,
My breathing tube was removed before I woke up.
I did have a fear of that thing though after being told I might unconciously bite down on it.
This they said could damage any caps or crowns in your mouth and I have a number of both.
Turned out not to be a problem.
 
I'll just echo what most others have said. I was worried about the vent too and it turned out not to be an issue at all. I did wake up with it in, but I was drifting in and out "at will", so anytime I got out of sync with it I would just drift off again and let it do its thing (mine was also so quiet that I wasn't able to time my breathing with it). When it was time to come out they counted to three and out it came. This may sound gross, but basically it felt like I "threw it up" and it was out in one motion. I had no sore throat or any other discomfort afterwards from having it in. I did have an extreme case of cotton mouth, but I think that was from the anesthsia and not having anything to drink for almost 24 hours. As far as how long it stays in that will vary by how fast your lungs "wake up". I think it was around 2 hours between the time I first became concious and the time they removed it, and most of those 2 hours I was drifting in and out so it didn't seem that long. You'll do fine, just try not to focus on that part (I know...easier said then done). I had a few sleepless nights worrying over it for nothing. :)
 
Thanks so much!

Thanks so much!

I'm feeling so much better now! I'm not alone in my fear of the tube, and, more importantly, I am relieved to see that most of you weren't permanently traumatized by the thing. And, Ross, aka "Respirator Man", my heart truly goes out to you! I pray you don't have to go through it again and that your condition is improving. I look forward to more updates from each of you.

It's funny how things happen. Just yesterday I didn't know another soul in the world who had a bad heart valve or had already had a replacement. In the wee hours of this morning I posted on this board and found all of you. Then this afternoon I went to a new salon to have my hair cut and the stylist not only is having a valve replacement soon but goes to my cardiologist! Her mother has had 3 valve replacements, the most recent just last year. All of a sudden information is everywhere!

Thank you all so much for your input. It helped so much. It's reassuring to be part of this new family! :)
 
You'd be surprised to know how many people you walk past in a day have had replacement surgery. We don't (Well most of people anyway, some of us VR folk do!) exactly wear shirts saying, "I had valvereplacement surgery". Most folks are very quiet about it. ;)
 
Kay

Kay

Everyday I tune in here I am so glad I did. That is one of the things I have been worrying about most, that and the panic that I know will go on in my head. I have been through some emergency experiences and I now end up feeling claustrophobic, looking for the exit. I am hoping I can find a way to get that undercontrol. I'm hoping perhaps that they can give me something to be calm. also I find sedatives for some reason don't work very long for me, so changes are I will be aware much sooner than they expect, happened in my gall bladder operation.

I am so thankful that you asked that question because I feel so much better about the tube after reading what everyone has said. I am also worried about the TEE test that most likely will be in my future for the same reason.

I learn so much her all the time and I am really so glad!
 
Hello Kay,

I've had two heart surgeries. Both times, the tube was already pulled out before I was conscious. This is typical for most people who do not have lung problems and are not smokers. IF you smoke, QUIT NOW. It will help.

Be sure to tell your Surgeon about your allergies to pain medicines and also request a consultation with the anesthesiologist to discuss the same subject. Hopefully they can do some testing before your surgery to find something that will not bother you.

Best wishes,

'AL'
 
I debated whether or not to post, but I decided I should.

Why?

Because my last experience with the respirator (January 2003) was not a pleasant one. When I woke up, the tube was still down my throat and I was flat on my back in the bed. When I first woke up, I was fine...I knew I had the respirator and I knew to work with it (as opposed to against it, like you've already been advised). However, as the hour progressed, the mucus kept getting "stuck" in my throat and it was very hard to stay relaxed. I knew the respirator was there to keep me alive, but the more the mucus developed, the more panicked I became. I communicated as best as I could with the technicians/nurses that I felt there was a problem. They kept reassuring me there wasn't. But, unfortunately, I wasn't convinced...and I'm not sure why. I frantically pointed at my throat and finally one of them asked me if there was mucus building...I quickly nodded my head yes. They then moved to "vacuum" it out...but that only worked for a while. Meanwhile, I failed the "breathing" test at least twice (if I remember correctly). Luckily, I passed on the third attempt...and they were able to take the tube out. I was much relieved.

Hmmm...please know that by no means am I trying to scare you...far from it. More of "warn you" that we all have different experiences...and to prepare for anything :). With that, I suggest you advise your surgeon and other doctors of your fears. They can also help you with them...and be more prepared to assist you at the appropriate time.

Unfortunately, I had not told my surgeons about my fear of the respirator. Why? Because the last time I dealt with it (March 1987) I had no problems...and was expecting the same thing again.

*shrugs*

I hope this has helped more than scared you....

BTW...I'll be in Dallas TX Oct 22-23; see my "Western Swing" thread for details, if you are interested in meeting up....

Cort, "Mr MC" / "Mr Road Trip", 31swm/pig valve/pacemaker
'72/'6/'9/'81/'7, train/models = http://www.chevyasylum.com/cort/
MC Guide = http://www.chevyasylum.com/mcspotter/main.html
 
Again, thanks so much for all the good information. I've only been a member
of this family for 2 days now but it's amazing how often I think of each of you during the day -- all you've been through, the courage you've shown, what a miracle it is that some of you are alive, and how willing you are to counsel a newbie to this strange new valve world. You are all in my prayers with each thought of you. Throughout my hectic day I'm looking forward to getting back to this board.

Breakingwaves -- I too dread the TEE test and am praying I can avoid it! It really sounds horrid! If you have one, please post your experience! Honest, I'd rather they just go ahead and open me up!

Al -- Thankfully I have never smoked. Except for pneumonia several times over the past 15 years, (none in 3 yrs) my lungs seem to be fine. As I've read some of the posts from those of you with respiratory challenges (Ross in particular) I realize that I have so much to be thankful for and I feel like a big baby for being so fearful. So many of have so many more challenges than I do and some of you have battled these problems for most of your lives. I am humbled when I read of what so many of you have gone through -- and lived to tell about it!

Cort -- thanks for sharing your story with me. What happened to you is EXACTLY my nightmare. It is exactly what I fear and knowing that it indeed can happen in a strange way kind of validates my apprenension and helps me address it and deal with it. You can bet I'm going to have this discussion with my surgeon! BTW, you said you were flat on your back. That is another of my fears. OK, I'm a sissy. Before I was diagnosed with AS, about 3 yrs ago, (coinciding with my last bout with pneumonia, now that I think about it) I started having to sleep in an almost sitting up position. I felt like I couldn't breathe if I were lying down although I had no idea why. That was one of the first questions my cardiologist asked me in the hospital and I finally understood why I had to sit up. The worst thing about my heart cath was having to lie flat and still for so long. I thought I wasn't going to make it! That's a long rambling lead in for this question - is it medically necessary to lie flat in recovery or can you arrange before hand to be more sitting up? I know this REALLY sounds trivial now but the thought of being flat on my back AND being on the tube is just too much! Then to have the problems you had? No way!!! Hypnosis here I come...

Cort, I would love to meet you when you're in Dallas but that weekend my gallery is having a convention in San Antonio. We're expanding in Mexico and that weekend is our launch. I'll be leaving early on the 21st and coming home late on the 24th. I'll sure take a raincheck and see you the next time your in Big D. BTW, everyone of my new family members here have a standing invitation for lunch anytime you're in the DFW area. I would love to meet all of you!

Thanks again to all you wonderful brave folks!
 
Hi Kay, welcome! I had my avr and aneurysm repaired 6 months ago. My husband says I was awake with the endo tube in, looking around, trying to talk. I swear I didn't wake up until the tube was out, whatever drugs they gave me worked good. :rolleyes: Good Luck with your surgery.
Kathy H
 
welcome kay,
I had my valve replaced 2 1/2 weeks ago so I do remember everything that happen. I woke up with the vent still in. The nurses and dr.'s thought they had several more hours before they had to deal with me. I was still restrainted which i can not deal with anyway I had warned them that I was scared of the vent and I would take it out when I was awake( I am a nurse so I would have) but once the nurse came in unrestrainted me I let them know I wanted off the vent of corse they had to go get the dr which didn't take long at all I remember him asking me if I could wait to he talked with the surgeon I wrote no he had 6 min. to take it out he finally agreed it was more like 10mins and as soon as I could talk I informed him that he took 10min. Don't fight the vent on the way out it will make it worse. within the first 30min that I was awake I had the vent out, ng tube out and the ark line. plus I was on a clear liquid diet within a hr after. It's not smart to come of the vent before time but sometime you need to listin to your heart instead of the dr. I knew that I would calm down without all the tubes and willing to take the chance because of alot of fluid build up the dr.'s didn't want me off the vent. One thing I have learned in the medical field is it's your body and you can listin to a dr and disagree with his plan of action. Hope this helped and again welcome to our family
Stacey
 
I don't know why you couldn't recover sitting up, or at least propped partly up. As I said, I woke up that way. I'm not fond of lying flat back, either, and sometimes have trouble breathing at the dentist's for that reason.

In some ways, I would think it would be preferable to have the patient propped up, to help lessen the chance of fluid buildup in the lungs.

Make sure your surgeon puts that in his orders, so you'll wake up in a more comforting position. You feel more in control when your head is upright.

If you wake up with the tube in, try to keep in mind that it has been breathing for you for hours, and you will be fine while you're on it. They are looking at your blood gasses, so they may actually be more aware of your internal oxygen situation than you are. Work to relax yourself, and concentrate on other things around you. One of the issues you may find is that the tech staff may be unwilling to remove your tube until they feel you are "cooperative," as they may use that as an indication that you are fully awake and cognizant. Stacey may have had some extra leverage, being a nurse, that you may not be able to excersize.

I heard them scolding and arguing with the man in the next stall about removing his tube, and that really seemed to be the issue with him. I very nearly called out to him that I'd hold them back while he ripped it out, but fortunately realized I couldn't make good on it before actually shouting out. I have to suspect that the entire notion was rendered feasible by the effects of the morphine I was still on. I probably didn't have the voice to do it anyway, at that point.

I hope you have a much easier time with it than you are afraid of having. It went much better for me than I ever imagined it would. As I said, the tube and all its possibilities had terrified me before the procedure.

Best wishes,
 
tobagotwo said:
Make sure your surgeon puts that in his orders, so you'll wake up in a more comforting position. You feel more in control when your head is upright.
Bob, I gotta pick on ya here. Do you mean to tell me that someone actually reads the Doctors orders? Have you seen them do this? I can't tell you how many times I had to make them read my chart. It's disgusting.
 
Hi Texas girlfriend...

Hi Texas girlfriend...

Hello Kay and welcome to vr.com -- what a great resource for us all.

To address your fear of the vent -- I don't even remember it. I've read where you should tell your surgeon/anesthesiologist of your fears and they will keep you in lala land a little longer. But really, I don't even remember it and my family never mentioned it to me afterwards, so it was no big deal. My five year anniversary was just yesterday as I had AVR on Oct 7, 1999 in San Antonio.

I'm just down the road from you in New Braunfels. I see where you're coming down to San Antonio the weekend of Oct 21st. I'll be around that weekend, so if you want to get together for lunch, etc...send me an email or PM through this website and we'll go from there. I'll be freshly returned from our reunion in Golden, CO and visiting with all the good heartbuddies just the weekend prior to your visit in SAT.

Also, I have a longtime girlfriend in San Antonio who's with: http://www.jadelman.com/ in the Menger Hotel right next to the Alamo and bet you two would have a bit in common! :p
 
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