Hi Everyone!

[billiejo]

Hey there,
My name is Billie Jo, and I am 26 years old, and a wife and mother of three beautiful busy little children. I am new to this site, and am so happy that I found it! A brief history, I had open heart at birth to repair my aortic valve and have had nothing since. Went on to have 3 children, healthy, with no issues. Went for a routine cardiologist appt. about 6 months ago and he told me that it was time to go ahead with the AVR. I have no symptoms at this time, besides wanting the occasional nap from time to time. So my surgery is scheduled for the first week in June, so the clock is ticking and needless to say I am scared out of my witts! I have been feeling so alone in my own little world of panic and fear, until I came across this site and Im finally realizing that I am not alone. Im hoping that everone may have some advice and words of wisdom for me and help with some of the biggest fears I have,..like 1... The breathing tube!!! From what I read, some say that it was the most uncomfortable memory they have of the whole experience? When I asked my surgeon about it he said that I shouldnt even realize its in, if I even remember it at all?? Also said that it should be out before I even fully come to? Hmm, but that doesnt sound like the case?? 2. How truly painful is it when you fully come to? I mean, I have had 3 children, so I know that I can handle some pain, its just the waking up in severe pain and panic that really scares me, is it that bad?? I know that its alot for one post, but thank you in advance for all your help and advice!! I cant wait to hear from everyone!

 

[Adrienne]

Welcome Billiejo. First of all, you will not be in great pain because that is very well controlled by medication.

Second, the breathing tube: I psychologically prepared myself beforehand by imagining waking up with it and just not trying to fight it. That is exactly what happened. Besides, I was so doped up, I barely cared. When my husband (who was there when I woke up) gave me the news, I gave him the thumbs-up sign (I had already prepared myself mentally for using my hands for communicating). I was only awake a few minutes. The next thing I knew they were taking the tube out.

 

[Bina]

Hi B-Jo, and welcome to the group. This place will save you from losing your mind!
My best recommendation is to start planning now, and line up some household help.
Breathing Tube: I woke up on it and they immediately knocked me out. When I woke up the next time it was gone.
Pain: My sternum itself did not really hurt. My ribs ached, and arm movements are very difficult, but I could walk and sit up straight to watch TV. After a few days I only took regular Tylenol.
You are young and should recover quickly.

 

[ctyguy]

Billiejoe,

Welcome to the site ! You will get a wealth of information both pre and post-op here. It has been the single most important website I've found in the entire process.

Its natural to be scared, everybody is, I had never had a surgery in my life so I was pretty well freaked out. What you will find is that the more you talk to others and learn about what they experienced, the more comfortable you will become. By the time I got to the hospital for the "event" I was totally calm and ready to go. The waiting is by far worse than the procedure or the recovery. If you can keep your stress under control until June you will have a easy time of it.

Breathing tube - I knew I was gonna wake up with one, didn't make much difference I still didn't like it. I fussed when they woke me up the first time (which I barely remember), they knocked me back out and the next memory I have I was awake without the tube. Don't let it stress you out, as odd as it may sound an AVR is somewhat routine, and you don't have anything else listed that your dealing with so I bet that tube is out pretty darn quick.

Pain - In my experience "pain management" was the #1 priority of the ICU and step-down unit staff. First question by each person who came to me was "How is your pain ?". If I wasn't comfortable they gave me more meds ! The worst part of it was getting in and out of bed, you will feel it more in your back than the incision. To be honest I never really felt an significant pain on my chest. They placed Lidicain (sp ?) strips on each side of the incision and it wasn't a bother at all.

Good luck and try to keep cool ! Im sure you will do very well....

 

[Karlynn]

Welcome Billiejo,
My children were young when I had my valve replaced. Since then I've seen them graduate from college and I'm now a grandma! A lot has transpired in the 16+ years since my valve replacement. It's been a busy, wonderful, exciting, active life. Others have given you good advice and others will continue to.

Continue to ask questions!

 

[Superbob]

Billie Jo,

Welcome! Look forward to your posts. You will find a lot of good folks for info and support here.

Just wanted to say that (as some veterans here may recall) few dreaded the breathing tube going in more than me. But even though I had to keep it in a little longer than expected in order to get my oxygen intake back up, I did not find it to be a problem. Everything was still pretty hazy and there were lots of supportive people working in the ICU. It helps to think of the tube as your friend and to work with it, letting it temporarily do some of the work for you. I think you mentioned pain -- actually I remember no pain from that particular tube at all. There was some discomfort when they removed the chest tube a few days later. Actually, the whole experience was far less painful than I imagined it would be going in.

Talk to the med professionals pre-op about your concerns, and they should be able to help.

Again, welcome. Look forward to seeing your posts here.

 

[Cooker]

Hi Billiejo?.welcome to the zoo?..When I woke up I notice absolutely no pain?.the drugs take care of that?I had the breathing tube when I woke up, or came too?.It was pulled out very soon after?.most have it out when they wake up?it did not hurt it just startled me.

One a scale of one to ten with ten being the worse?.I would rate the overall experience a 2.5?..It was not near as bad as I expected and it will most likely be the same for you!!!

 

[Mary]

Welcome, Billie Jo!
I'm glad you found us, but I wish it were under different circumstances.
Ask all the questions you want; someone is usually around to answer them or share their own experience. In regards to your question about being on the ventilator, it was a nonevent for me.
When you decide when you're going to have replacement, post the date and we'll get you on our surgery calendar. You get extra good thoughts and wishes that day from members who remember what it was like to go through valve replacement.

 

[Curtsmum]

Hi billiejo, welcome to the forum, i just wanted to wish you all the best on your journey. You have found the best place to be, best of luck with your surgery, i know how scarey it can be from a carers side. Take care.

 

[Jkm7]

Hi billiejo...

Your fears are the same we all had. I have had two OHS and can honestly tell you I have no memory of the breathing tube from my first surgery and only minimal my second. I am just over six weeks post op and I remember waking and hearing my nurse say we will be removing the breathing tube in a few minutes. I was so foggy I was barely aware it was there and I have no further memory. The next I remember, there was no tube so obviously they removed it. I don't think my experience is unique though certainly not what everyone has.

As to pain...... it is very well controlled. I had both my surgeries in Mass General Hospital and they kept me very comfortable. My second surgery I had a good idea what to expect.....same surgeon, same hospital, same ICU, same step down unit and some of the same nurses. If anything, they stressed pain management even more this second surgery than the first. Every time a nurse came to my room for any reason, (s)he always asked how my pain was. If I indicated any discomfort, they immediately got me meds. Of course they are not going to make addicts out of any of us but they have learned there is better healing if patients are more comfortable. How can one sleep if they hurt? Sleep is important to healing.....as is a good state of mind. Everyone is different and some have more pain than others. The medical professionals all know this. Some folks here went home and used only tylenol. When I went home both times, I needed heavier pain meds and they were prescribed for me as needed.

The wait is absolutely the worst part. I found it very difficult getting through the month I had to wait from being told surgery was now needed until I had it.

So many of us have been exactly where you are and only someone who has been there fully understands. Please let us help you through this the way others helped us.

You'll do fine!!!

 

[JAJ99]

Welcome to the site! It is a great source of comfort. I did not wake up with the breathing tube in, or if I did, I don't remember it. I'm with Cooker, I'd rate the entire process a 2-2.5 on a pain scale. I threw-up several times while in the ICU and didn't even feel pain. Child birth was way worse! You'll handle it just fine.

 

[sue943]

No breathing tube for me, it was gone before I was awake.

 

[WayneGM]

I only vaguely recall the breathing tube. I recall (like in a dream) it being removed just as I was waking up post-op. By the time I was fully awake, it was gone.

When I came to, I didn't feel any pain at all. My throat was dry and a bit sore but that was it. The pain meds work great. My first thought as "that's it....it's over already and this is it?". I didn't feel nearly as bad as I thought I would have. Of course, I had no energy to move but just lying there was quite comfortable.

I didn't really feel any pain until they decided to re position me. THEN I felt like I just had heart surgery. However, once I was in the new position, the pain subsided and I was pretty comfortable again.

 

[Gypsy]

Billiejo

Thanks for posting your message and many good wishes for your upcoming surgery. I, too, dread the breathing tube so thank you everyone who replied on your experiences with it. I think I can handle the pain and everything else but anything to do with my breathing freaks me out. I will definitely mention my fear to the surgeon/anethetist so hopefully I too will wake up with it gone.

Lucy

 

[aussigal]

Welcome to our wonderful world...

That darn breathing-tube is a common worry...the thought of it really is much worse than any foggy memory we may have....I cant even remember feeling it while it was in...most of us are pretty drugged-up while on the vent...

I am guessing that your kids are young ....I probably wouldnt have them visit in hospital until you are out of ICU....my eldest son who was 15 at the time saw me in ICU , he said he would rather not have seen me all full of tubes with monitors beeping and stuff...I think our kids dont need that memory of mummy all tubed-up...they expect to see us propped up in a hospital bed looking pretty normal except for the bandage on our incision. My mum minded our 2 younger kids and kept them informed and brought them into visit once I got into the ward.

 

[Debbie]

billie jo

billie jo

Dear Billie Jo, welcome to our group! Read as much as you can on this forum, you will get alot of good information. Go back into old posts to find out answers to all your questions. I also had surgery as a baby for my pulmonary valve, they fixed it at the time and just 11 weeks ago I had it replaced. Don't worry about the surgery that much( I know your scared ,everyone is) but be prepared to have lots of help with recovery time. I think you said you have 3 small kids, you will need help! Everybody's recovery is different but plan on at least 2 weeks of someone taking full time care of your little ones. Also, look up the Adult Congenital Heart Association for lots of good info. and great doctors that work with these patients, your are a ACHA patient. Take care and gather as much info. as possible. Debbie

 

[briansmom]

Hi Billiejo,
This place is the best! You will get a lot of support and encouragement here. As for the breathing tube, it seemed to be a lot harder on me than my son. I definitely remember it because he was really fighting it and I was right next to him alternately telling him that he was doing great and telling him to knock it off and quit fighting it. I asked him a few weeks later if he remembered it and he said no Me, on the other hand probably lost at least a few years of my life As for the pain, I doubt that it will be worse than childbirth

Best wishes.

 

[Gusdog]

billiejo,

Welcome. I'll echo what everyone else said, and what Tom Petty said: the waiting is the hardest part. I had surgery exactly 3 weeks after finding out I needed it, and that was the longest 3 weeks of my life.

If your surgeon says the tube will be out before you're fully awake, it probably will be. They try to do it that way. My dad had the same surgery as I did about a year earlier, and while I remember them taking it out with him awake, he doesn't remember it at all.

As for me, I have a really tough airway, so I was awake for a good while with the tube in, so they could make sure they wouldn't have any problem with my oxygen sats before they extubated me. It really wasn't as bad as I feared. I did get a little panicky at one point (I do that sometimes, especially when it comes to breathing), so I wrote a note that I was getting panicky. They gave me something to calm me down, and I was fine. Being extubated wasn't nearly as bad as I would have expected.

I really doubt you'll have my experience (again, I have a really tough airway), but even if you did, it really wasn't bad. It definitely wasn't as bad as I would have thought.

As far as pain goes, again, it really wasn't bad. I've had lots worse. They'll manage your pain well; after all, pain can spike you BP, and ruin all that nice work they've just done, so they won't let you hurt much. After having three kids, I don't think you'll have any problem with the pain.

The worst part for me was not being able to do much for myself for a while, and getting stir crazy sitting at home. I hate feeling helpless, so the first couple of weeks were tough because I needed help with a lot of stuff. Now I'm almost 8 weeks out, and I feel really good. I can honestly say that it wasn't as bad as I feared.

Good luck; you're going to be fine. You've come to a great place for advice. You'll be in my prayers.

Adam

 

[njean]

Hi BillieJo & welcome to the forum! You have come to a great place for support provided by everyone who's already been there! I've been there 3 times & thank God still around to talk about it! The breathing tube was my biggest fear during everyone of my surgeries but I got through it & I have no doubt that you will too! Just try to keep in mind that it's not going to be in there forever & that it is helping you breathe until your lungs are able to take over on their own. I experienced a lot of weakness after my 3rd OHS but much of that I'm sure was due to my age & the state that my heart is in.
You are still very young & will most likely fair a lot better than I did, of that I'm sure!

You will need to have help a few weeks after you are home especially with your three little ones. I hope that you have family and/or friends that can come by & give you a hand or two!

Best of luck to you; you will be in my prayers!

 

[Lionheart]

Hey there,
Im hoping that everone may have some advice and words of wisdom for me and help with some of the biggest fears I have,..like 1... The breathing tube!!! 2. How truly painful is it when you fully come to?

Billiejo

For your breathing tube concerns I suggest you get a relaxation CD and listen to it prior to surgery. I also suggest you talk with your husband or whoever else will be there when you come to after surgery. Ask them to talk to you and let you know what the nurses need for you to do in order for them to remove the tube. When I came to I gave my caregivers a thumbs up or down and it was helpful when they talked to me to let me know what was going on. It really wasn't that bad and I have no memory of it being removed.

As far as pain. You will be heavily sedated when you regain consciousness and maybe uncomfortable but their pain meds will do wonders for removing the major pain. For me the main thing was to learn to take the pain meds regularly every 4 hours or whatever interval of time they need before you can have more. At first I waited until I was in pain before I asked for more, but then after I got the meds I had to wait 30 minutes for them to take effect. I learned to just ask for them every 4 hours and that keep me mostly pain free.

You are really lucky to have your kids now before your surgery. You are also young so your recovery should go very well. Relax, listen to some good music and think about the positive benefits you will have with a good, fully functioning Aortic valve!
John