New here - Aortic Valve Replacement scheduled for Nov 15th

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AshPitt21710

Active member
Joined
Nov 5, 2012
Messages
28
Location
Pittsburgh, PA
Hey all,

I'm 23 yr old and will be having my valve replaced next Thursday, the 15th. I have a bicuspid valve with stenosis. I am having the tissue valve because my fiance and I want to have children. I have to be honest, I'm not as worried about the surgery as I am about the moments right after waking up. I also have Aspergers, a high functioning form of Autism. I don't do well with things that are not planned out to the last detail and I have a lot of sensory issues that I know are going to be affected by all this. I guess I've been lucky and I've never been hospitalized before so I don't know how well the IVs will stay, I hate needles so I'm worried about having to get a new IV all the time. I'm also terrified about waking up with the breathing tube still in, I think this is what scares me the most. My doctors are aware of my Aspergers and the issues I have and I know they will try their best to make me feel comfortable but I'm just worried there will be things that they can't change that will really affect me. Any advice to help with the fears I'm still having, especially about the breathing tube?
 
All I remember about the breathing tube is that I remember the moment it came out. And then all I remember is a hand grabbing it, nothing else. I actually remember very little from just before going into the operating room, until the next morning. Just bits and pieces really. You should expect the first few times you go for a walk will be tiresome. And sitting up without using your arms from a lying position is difficult, you might want to practice that before hand.

Myself I felt really ill for the first few days while the anethetics worked their way out of my body. Was similar to a really bad flue actually. You should definitely be expected to feel quite a bit of hurt, so that your not surprised and shocked by it. By the third day I was walking around a fair bit, heading to the kitchen every hour to make a tea.

Everyone's experience is a bit different. I'd say don't really worry about the tube as its not much of an issue for most, but for some it is. I was told I fought the breathing tube a fair bit once I woke up and that they almost put me back to sleep for awhile. But from my memory it went really well. Even if you do have problems, you most likely won't remember it.

The worst for me was feeling really ill and it lasted two days, but in hindsight I've had flues that were just as bad.
 
Like Fundy mentioned, everyone's experience is different (sorry, I know this is not much help to you). As for me, I do not remember the breathing tube (nothing at all) the only evidence of it for me was that I had a very sore throat for a few days after surgery. I do remember being in the ICU and being checked on by two nurses throughout the first night.

It's really good that the team who will work with you knows about your Asperger’s, trust that they will take good care of you and provide you with what you need.

I'll be thinking of you on the 15th!!!

Rachel
 
Will be thinking and praying for you on the 15th. My experience with the breathing tube is "I don't remember" I know I woke up in ICU with my husband by the bed, he told me the breathing tube was in. I kind of remember giving him the thumbs up and went back to sleep. Later (don't know how much later) My nurse told me to take a big breath cause they were gonna take the tube out. Again this happened fast and I don't remember much. I hope your experience is much the same and all goes smoothly for you. Have faith in your medical team. :)
 
I remember the breathing tube...I remember that it was weird not being able to make ANY noise. I knew I wouldn't be able to talk, but I didn't know I wouldn't even be able to grunt or groan or anything to get someone's attention. They gave me a pad to write on and I did...get it out, get it out, get it out...it didn't hurt; I just didn't like it. Finally, they said, "give us a good cough" and it was out. Sounds horrendous right? The good news is that this all happened in about 3 minutes...as soon as I was actually awake, they pulled it and it was over. That's what I kind of felt about the whole thing...just when something started to seem intolerable, it would be gone. It actually worked out pretty good...I was afraid to have the drain tubes removed, but by the time they did it, I wanted them out so bad, the fear of having them out was minor in comparison. Every step seemed to be like that. And now the whole ordeal seems like a very distant memory...(it was actually only 8 months ago). I know everyone is different, but in the end, you will be fine and those couple rough days will be in the past.
 
I don't remember the breathing tube, either. As far as the IVs go, they will stay put quite well. The nurses know how to manage them very well. If you would need one changed, most bigger hospitals have IV teams with specially trained nurses that are very, very good with people who really hate needles. You could always ask for an IV team nurse if the need arises. Make sure the nurses know about your Aspergers...they are really the ones who can help you the most to be as comfortable as possible. Until the time you can communicate,perhaps someone could let them know how they might help keep sensory issues to a minimum...whether by keeping the door shut when possible, keeping the lights low,or whatever applies to you. All will be well!
 
I just saw you are from Pittsburgh. I live out in the country near Johnstown and had my surgery last March at Presby. Dr Lawrence Wei was my surgeon. Where are you having yours done?
 


Wow, Thank you all for the responses. I actually had to have all my teeth pulled yesterday, so I went thru my first ever surgery, which is why I didn't respond sooner. My oral surgeon and the anesthesia team wasn't going to put me fully under because they were worried about complications but I started to freak out about 1/3 of the way thru, I remember that, and they had to put me fully under and put a tube down my nose to breathe for me because I wouldn't relax and was making everything go wacky. I only remember something being pulled from my nose in the OR and being moved to the bed after surgery. So I'm hoping I'll only remember that about the breathing tube after my heart surgery. And my IV stayed for the whole 8 hours I was at the hospital yesterday so I'm hoping that's a good sign and the same thing happens on Thursday.

I really appreciate all your guys' support. I have the best support from my fiance and my family but its a different kind of support when you get it from people that have dealt with this before! So thank you!!



And Karla, I am having mine done at Shadyside. Dr. Thomas Gleason is my surgeon.

karla said:
I just saw you are from Pittsburgh. I live out in the country near Johnstown and had my surgery last March at Presby. Dr Lawrence Wei was my surgeon. Where are you having yours done?
Click to expand...
 
If I had to choose between getting all my teeth pulled and a valve replacement, I'd choose the valve replacement.

As for IV lines for valve replacement. I woke with one on each hand, maybe one in arm, and a huge one in my neck. wife said it looked like it would be horrible to have but I hardly noticed it. By the second morning after all but one was removed. It was taken out on the fourth day and replaced with one other on other arm, for a just in case type of thing.

Other than that you should expect to have two tubes and two wires at bottom of ribs, my tubes were removed second morning and wires morning of discharge.

You also will awake with a catheter for urine and all those EKG wires hooked up.

You'll most definitely be asleep for all the hook up stuff. I found the unhooking up stuff to be pain free.
 
Prayers and positive thoughts for you on the 15th. I just had an AVR with ascending aorta replacement on 10/22. The waiting and wondering was the worst part for me. I personally do not remember much just before or just after the surgery. It seemed to fly by. I can remember going under and the next thing (it seemed like only a few seconds), waking up with breathing tube in. The next thing I know, they asked me to cough to help remove the tube, and it was out. Seemed very quick. I don't know if it was the anesthetic, but the IV's were hardly noticed after waking up. I'm sure you can request and receive help in managing the sensory concerns. They (staff) are there to keep you safe and as comfortable as possible. They have many tools to help in your specific situation. Don't hesitate to ask or communicate your concerns. Rest well and follow the instructions given. Everything will be OK and will soon be a memory.

Dion
 
AshPitt21710 said:


Wow, Thank you all for the responses. I actually had to have all my teeth pulled yesterday, so I went thru my first ever surgery, which is why I didn't respond sooner. My oral surgeon and the anesthesia team wasn't going to put me fully under because they were worried about complications but I started to freak out about 1/3 of the way thru, I remember that, and they had to put me fully under and put a tube down my nose to breathe for me because I wouldn't relax and was making everything go wacky. I only remember something being pulled from my nose in the OR and being moved to the bed after surgery. So I'm hoping I'll only remember that about the breathing tube after my heart surgery. And my IV stayed for the whole 8 hours I was at the hospital yesterday so I'm hoping that's a good sign and the same thing happens on Thursday.

I really appreciate all your guys' support. I have the best support from my fiance and my family but its a different kind of support when you get it from people that have dealt with this before! So thank you!!



And Karla, I am having mine done at Shadyside. Dr. Thomas Gleason is my surgeon. [/QUOTE

I have heard he is excellent! You are in great hands. If you ever want to chat on the phone, just PM me and we'll set something up.
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Hi there.

I had my BAV and aneurism done on the 7th September and was very anxious (mainly due to a long lead up the op) about tubes, ivs and pain. Things I found:
- I don't remember coming round and certainly don't remember the mouth tube coming out
- I had wonderful drugs that not only stopped any pain but also played with my memory of what happened. I remember the drains coming out and ivs but couldn't tell you 8 weeks on what it felt like.
-coughing, walking, eating resting all played a massive part in recovery, so did being a non smoker.

If it helps I saw the whole exercise as a job I had to do. My job involved, preparing for the op mentally and physically and each day I clocked on and clocked off. Post op it was the same: get up, walk, eat, meds, change dressings, have tubes taken out, sleep and so on, mini milestones that all mean a lot for recovery and positive mental attitude. Each day pushing the exercise (just as the physio would in hospital). Seeing it as a job really helped me get on with things.

Sending you all the luck and positive vibes for a great recovery. Good luck with your new job:)
J

Ps- sorry one last thing; surgeons do these operations week in week out ( not take anything away on what your about to go through) but keep that in mind, they are experts and extremely skilful.
 
Don't stress the tube. I didn't like the thought of that either. (who would) The thing is, they give copious amounts of REALLY GOOD drugs and you will not remember very much. My family said they came by and, although I had the tube in, I did acknowledge them. I REMEMBER NOTHING! They told my wife I was up and in a chair in recovery. I REMEMBER NOTHING. I do know time seems to take FOREVER once you are awake enuf for the tube to come out. My shoulder was the only thing that hurt. (it was the way they had me laying i guess) they couldn't give me enough morphine to make it stop hurting. The tube was out and I just laid there listening to the guy in the next bed give the nurses a hard time and clock watching. IT TOOK FOREVER! Just before his shift ended I got the drugs and slept. I next remember being wheeled into my room and my wife being there.
So dont worry about it. Just remember, it will only be a little while.
The Valve thing? Well, I think i saw that you were having bovine. Not my choice but you have a good reason to go that way.
Good Luck and keep us informed.
Greg
 
Hey all! I am now home! :D Just got home this afternoon, right in time for Thanksgiving! Everything went very very well! And I am glad to announce that the only thing of the tube I remember is NOTHING!! I do remember waking up one time trying to sign to my nurses for my fiance because I couldn't talk, I remember crying for him, they all told me to relax that I was gonna be okay. He did tell me I was up, I knew he was there, I said I loved him and then I kept telling him that the pain was too much. I was fighting a lot to get the tube out but I don't remember that at all. The point were I fully woke up after the tube, Dan my fiance, was holding my hand and I turned my head towards him and said "you're here" and from that point on I remember everything that happened. I was up and sitting in the chair that night...I sat for a good 3 hour and my best friend came for a visit. I did have a few bumps along the road in the hospital but over all everything is going great! Glad to be at home now. Any advice on what to do for having all this extra air/gas in your belly? I seem to have a lot, I burp constantly and fart a lot....there are times when I have to burp or fart but can't. Anyone else deal with this?
 
Chris:

I am learning as much about replacement valves as I will be having AVR and AR sometime early next year.

My research abot Edwards Lifescience valves has me hoping this is what is chosen for me.

How did you end up with a ELS AV? Were you presented with other options?

Thanks,
Heart of the Sunrise
 
escargome said:
Will be thinking and praying for you on the 15th. My experience with the breathing tube is "I don't remember" I know I woke up in ICU with my husband by the bed, he told me the breathing tube was in. I kind of remember giving him the thumbs up and went back to sleep. Later (don't know how much later) My nurse told me to take a big breath cause they were gonna take the tube out. Again this happened fast and I don't remember much. I hope your experience is much the same and all goes smoothly for you. Have faith in your medical team. :)
Click to expand...

Chris:

I am learning as much about replacement valves as I will be having AVR and AR sometime early next year.

My research abot Edwards Lifescience valves has me hoping this is what is chosen for me.

How did you end up with a ELS AV? Were you presented with other options?

Thanks,
Heart of the Sunrise
 
Hi

ahh I just noticed your reply in there

Just got home this afternoon, right in time for Thanksgiving! Everything went very very well! And I am glad to announce that the only thing of the tube I remember is NOTHING
Click to expand...

so I've deleted the advice I have given.

Instead I wish you all the best in recovery.
 
So happy to hear that you're home!!!

I hope your recovery goes well, sorry I don't have any advice for you on your question, (I didn't have your problem, instead I was peeing all the time due to the Lasix).

Hope the rest of your recovery goes well!!

Rachel
 
So glad things went well!
I would guess that your "gas "issue will likely subside soon. Sometimes a little air goes into your stomach as well as your lungs when you have the tube in. The anesthesia and pain medicine slow down your whole gastrointestinal system so it can take awhile for the air to work its way out. As long as it's getting out, all is well.
Happy Thanksgiving!
 
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