Aortic Valve Replacement Surgery - any tips?

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DachsieMom

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I had the same surgery at 41. St Jude 21 mm valve and valve conduit. My surgeon told me younger patients feel it a little more (particularly if you are lean), but just like childbirth you will not remember that later! I found the first few weeks to be difficult, but then you really turn a corner. Cardiac rehab is key. Hopefully you will have nurses that let you challenge yourself! I feel like I was I better shape 12 weeks out than I am now lol! This board is a fantastic resource. And start home testing your INR as soon as they let you. Usually after 3 months.
 

spanda

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Jul 2, 2017
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Hi...I thought I could share my story. My name is David. I’m 37 and I recently found out I have a heart murmur and need to have my aortic valve and aorta replaced. My surgery is scheduled on July 10th. They’re going to give me a St Jude mechanical valve and do a graft to replace my aorta. Is there anything you wish you’d known going into the surgery beforehand?

Thanks!
Hi David - It's 10th July (in India). Wishing you good luck and a fast recovery post OHS. My 18 yr old son had to go through the same procedure (Bentall) two years back (2017). He completely recovered in 6 - 8 weeks time and doing fine. You should not worry much - you will be fine too.
 

carolinemc

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Dont be surprised if you spontaneously burst into tears for no apparant reason in the first few weeks afterward

Its all the meds they poke into you and I think you just get so emotionally overwelmed without realising and it catches up on you in a flood of tears
I was like that for two years post op. Due to a mean supervisor who did not know what she was doing. I was working in data entry, one year post op and still recovering. She demanded our department to work a whole day on a Saturday, after working a 40 hour week, to caught up on overload of work. I was in tears by lunch and cried the afternoon away. And then two weeks later was called to work two Saturdays, half a day. Both days, when I left for the day, was in tears. from being so tired. Was glad when they finally fired her. Life got better after that.
 

tom in MO

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Hi...I thought I could share my story. My name is David. I’m 37 and I recently found out I have a heart murmur and need to have my aortic valve and aorta replaced. My surgery is scheduled on July 10th. They’re going to give me a St Jude mechanical valve and do a graft to replace my aorta. Is there anything you wish you’d known going into the surgery beforehand?

Thanks!
Different question than most people, my take on it:
  • I wish I'd known the trauma that my body would react to w/o my conscious control. For example, my mind wouldn't let me sleep for 36 hours after surgery. Usually after surgeries I sleep a lot. I think my subconcious knew I'd "died" the last time I slept, and wanted to keep me up so it wouldn't happen again. I was certainly on enough pain meds to put me to sleep but didn't. Another sign of the overall trauma was my nails stopped growing and then restarted. A few weeks later every nail had this ridge that marked the few days of growth stop. Then there is the transitory hair loss. It grows back :)
  • I had a few auditory and visual hallucinations that I don't believe were due to the medications, since I had taken them before w/o problem. They were ephemeral, but happened enough to be believable. I'd of liked to known that before hand.
  • Some of the drugs (metropol) can be real calming, but can also suck away your sex drive. Luckily you don't need these for long and the effects vary between people.
  • I lost some cognitive ability. I couldn't do math (e.g. tips) in my head for about a year. I got worse at remembering names. Most of it came back, but not the name bit. At parties, I have my wingman (wife) introduce herself first so I can catch the name :) However, during recovery, I binged watched all the Law and Order episodes and couldn't remember the episodes I'd already seen so that was kind of fun.
 

Keithl

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Tom,

I had read about the pump time can have impact on a patient's memory after surgery and some of that can be permanent. So far I do not think I have any lasting side effects, but do recall some foggy days during the first few weeks.
 

carolinemc

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Tom,

I had read about the pump time can have impact on a patient's memory after surgery and some of that can be permanent. So far I do not think I have any lasting side effects, but do recall some foggy days during the first few weeks.
I pump side affects for years, still have some of it today. Was worse when I went back to work and could not remember how to do the simple jobs. Had to be retrained till I got it back. Took lots of notes, was in data entry back then. So everyone it is called Pump Head. Was glad when the worst of it was over.
 

tom in MO

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Tom,

I had read about the pump time can have impact on a patient's memory after surgery and some of that can be permanent. So far I do not think I have any lasting side effects, but do recall some foggy days during the first few weeks.
My time on the pump was minimal since it was a simple aortic valve replacement with a mechanical.

I don't think the doctors really know what happens when your mind believes it's dead because the heart and lungs stop. A lot of people postulate that it's oxygen, but it could be your own mind protecting the body, like it does by stopping your nails from growing to conserve energy. It could be the drugs, they give you a powerful concoction of multiple mind altering drugs (e.g. fentanyl compounds) at different doses and at different times to put you down and bring you up. People react differently to those kinds of chemicals.

However, it's all better than the "syndrome known as sudden death," right?

As an aside, in the last two months I saw a new personal physician (young) who had never heard of OHS being the source of cognitive problems and a neurologist (also young) who knew about the difficulties.
 

thomas999

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Jul 18, 2012
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sterling heights, michigan, usa
Hi...I thought I could share my story. My name is David. I’m 37 and I recently found out I have a heart murmur and need to have my aortic valve and aorta replaced. My surgery is scheduled on July 10th. They’re going to give me a St Jude mechanical valve and do a graft to replace my aorta. Is there anything you wish you’d known going into the surgery beforehand?

Thanks!
I had this same surgery 32 years ago. If I have read your post correctly, I had my ascending aorta replaced along with a St Jude mechanical valve. I was 32 years old at the time, and it took me pretty much by surprise. I was in the doctor's office for back pain and the Osteopathic doctor was using a stethoscope and found the issue. It is strange how things work out, if it hadn't been for her findings I most likely would not be here today. I write my post to inform you that there is longevity in this surgery and you should have that confidence.
 

Gail in Ca

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The worst of my first surgery was waking up still intubated, and then being allowed to become fully alert, still intubated. I was led to believe that I would be disconnected when I awoke. I thought I was going to die from choking. Luckily, my nurse saw how freaked out I was and gave me the suction device, and so I was suctioning myself, which helped me calm down. After that surgery, I've always told my anethesiologist that I want that breathing tube out before I wake up. And I've had 2 more surgeries now, and have not had a repeat of that first time. I can agree with all the other posters on their thoughts, too.
 

LonMel

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Apr 13, 2008
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New York City, New York
I had the same experience with my one and only (I hope) surgery. Fortunately, waking up and finding myself in the same situation I kept myself calm. It took @1 hour before they suctioned me and extubated me.
Coughing is what set me off to fighting the machine. It took a lot of will power to let the machine breathe for me again! The machine always wins!
My advice, stay calm and let the nurse know you are conscious and alert.
 

Keithl

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Apr 20, 2019
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I am lucky, I vaguely remember waking up with tube, but was very much in la la land and do not recall that it felt like I had it in long, but wife says it was over in for over 30 minutes after I woke up, which I felt like it was a minute or 2.
 

Zoltania

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SF Bay Area, California
When I woke up from my surgery, I could feel the breathing tube (but not the other tubes and lines). Thanks to the forum, I knew it would feel like breathing through a straw and I knew not to fight it. I was able to identify, mostly by the sound of the ventilator, when a breath was coming in, and I could then help by timing a breath of my own to go with it. One thing that helped me tremendously was hearing a nurse say that I was doing a good job of keeping myself calm. That made me realize that I had some control over the situation.
 

Paleowoman

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Just to give a different story of waking up after surgery, I wasn’t awake when I was extubated, or if I was, I was given medications which took away all memory of it.

The only thing I remember from before I was fully awake was a memory of it being completely dark - which it couldn’t have been - but I remember distinctly that I was looking at complete black, and someone was talking to me loudly, using my name, almost shouting. I was trying to shake my head and trying to make a sound but I had the feeling that all I wanted to do was tell whoever that all I wanted to do was go to sleep. Perhaps that was very shortly after surgery before the surgical anaesthesia had completely worn off ? It wasn’t frightening.

Next thing I remember I was fully awake in ICU, no tube, and felt fine. Prior to that my dh had taken a photo of me while I was still intubated on the ventilator and I look really peaceful.
 

spanda

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Jul 2, 2017
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India
Hi David - It's 10th July (in India). Wishing you good luck and a fast recovery post OHS. My 18 yr old son had to go through the same procedure (Bentall) two years back (2017). He completely recovered in 6 - 8 weeks time and doing fine. You should not worry much - you will be fine too.
BTW, The first question I asked him in the recovery room was math table... 11X6 , 18X3 etc.. followed by Newton's first law etc... Just to make sure that he hasn't lost the grey cells. He could answer them correctly. However, later on I realised that he is not able to recollect some instances of his life. But, that's OK - I guess.
 
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