Surgery in less than a month

[Jamieann]

Hi all! I've been lurking around here for a few months but this is my first post. It's been immensely helpful to read about everyone else's experiences.


I'm 27 years old and was born with a bicuspid aortic valve with mild aortic stenosis. I went in for my checkups with the cardiologist every few years but lived my life normally without surgery on the table (was told it would probably happen around 50 or 60). In October it had been about 3 years since my cardiologist visit so I decided to make an appt with a new cardiologist (having moved to a new state since my last appt). He is very thorough and experienced and ordered an echo and several MRIs to check for an aortic aneurysm.


At my follow up appt after all my testing I was told that unfortunately the time has now come for surgery, as my stenosis is now severe. Quite a shocker, definitely NOT something I was expecting to hear at all. My cardiologist also told me that I needed to seriously cut back on my high intensity workouts/running prior to surgery, so that's been hard to deal with.


Anyway, fast forward to now, have had multiple appointments with my surgeon, who is awesome, and have surgery scheduled for April 1st. I've come to terms with the fact that all of this is happening, but it just doesn't seem real. My husband and I are also still really on the fence about whether I should get a bovine valve or mechanical valve, due to the fact that we both really want kids.


I've been calm for the most part with these flashes of terror and panic. Did anyone else experience that before surgery? I have a low pain tolerance so am really nervous about that aspect as well as about recovery, and getting back to running/working out.

 

[Jamieann]

Also sorry for the double posts it said there was an error in this post so I posted the other one and can't figure out how to delete it. Sorry!

 

[pellicle]

Hi

don't worry ... happens to us all (well me for sure)

as you can search here (which I recommend you do) I've written a lot about my opinions on tissue vs mechanical. You however fall into that category which is murky in terms of the decision tree.

On the subject of tissue as a choice be prepared to get nothing like the duration that is "sold up" by the makers for the maximum duration of the various tissue replacements - simply because you are young. You may get less than 5 years.

On the subject of having children with a mechanical it is doable but requires some thought and planning. There ARE women on this forum who have had exactly that done.

I have had a homograft valve (the living cryopreserved type) when I was 28 ... it lasted till I was 48 and I was (am) an active person.

I'll search a few threads that are relevant and post them here.

 

[pellicle]

one here:
http://www.valvereplacement.org/for...t-to-do-and-i-would-like-to-hear-your-opinion

 

[pellicle]

and if you miss it, from that thread is this post. here is a link:
http://www.valvereplacement.org/for...estions-from-a-new-member?p=792767#post792767

 

[JulienDu]

Hi

Also, they are now very good with taking care of the pain.

I have had a surgery 20 years ago and surgery 4 weeks ago, the progress has been real. At the hospital I never felt that much pain in ICU, and also very little when I was in the room. Not because I was a tough guy but because their understanding of pain and the medication has seen a lot of improvement. But one thing is sure, you will suffer but you will not be alone and you will be helped.

For the recovery, it seems to be very personal and depending on each person. You will suffer a bit more at home than at the hospital because you will not have 24h nurse around you to help with pain. You will be responsible and your own advocate.

You are absolutely right to worry because OHS is not a small thing to deal with but as Pellicle said, many many people are going through it and they now have impressive success numbers especially for your age.

 

[neil]

hi, I am the biggest cry baby ever, so I was so surprised at the lack of pain after the op, you will be just fine, as far as type of valve you need maybe you should have another word with your cardio as after all there are the experts in this field and will have come across this many times

 

[ForeverThankful]

I've been calm for the most part with these flashes of terror and panic. Did anyone else experience that before surgery? I have a low pain tolerance so am really nervous about that aspect as well as about recovery, and getting back to running/working out.

Yes, after I got past being in a state of disbelief, I had flashes of terror and panic before the surgery. It was very much like you said, mostly I felt kind of numb and then I'd have a moment of panic. I was also very absent minded, like my mind was in another place. But I was very calm and relaxed the day before the surgery and the morning of the surgery. I had an angiogram the day before the surgery so I spent the night before the surgery in the hospital and I was calm enough to get about 7 hours of sleep!

As far as pain is concerned, I was shocked at how little pain there was. I didn't get any pain killers in the hospital and only had to ask for a Tylenol once. I started to wonder if the nerve endings went into some kind of shock that rendered them numb!

 

[JulienDu]

As far as pain is concerned, I was shocked at how little pain there was. I didn't get any pain killers in the hospital and only had to ask for a Tylenol once. I started to wonder if the nerve endings went into some kind of shock that rendered them numb!

That's awesome. I think women are stronger against pain than men. I was close to my wife both time at home when she had her babies without pain killers, I was impressed and I work in very dangerous field...

 

[pellicle]

Jamieann

reading this :

Yes, after I got past being in a state of disbelief, I had flashes of terror and panic before the surgery. It was very much like you said, mostly I felt kind of numb and then I'd have a moment of panic. I was also very absent minded, like my mind was in another place.

made me think this:

sometimes I wonder if the metaphors of the Matrix are not indeed a metaphor based on the way people abstract themselves away from life with "busyness" and when the reality of real real life intrudes by perhaps breaking down the door they are shocked.

There is nothing "wrong" (or right) about all these reactions, but something valuable can come from it, other than the surgery. Something I call "wake up call".

Let me explain. I recall being in a "farewell party" for a work colleague some years back. I got a phone call from the Dr's where my mum was being looked after (suffering from Ahlzimers) and the Dr asked me that as my mothers condition was deteriorating that they were reviewing her case. He asked if I wanted her marked "not for resus" meaning that if she had a cardiac arrest they would just let nature take its course.

I had to realign myself to that question at first and discuss the background, over time I had been becoming habituised into mums situation, because it was gradual. He expressed that in his opinion was that her bones were frail enough that CPR may break quite a number of her ribs and perhaps there was also the chance that the event would accelerate her reduction of mental faculties.

After a while I got my head around the facts, and agreed that was the wisest approach. With a heavy heart hung up the phone and looked around at the room full of people engaged in meaningless dribble conversations all totally oblivious to and uninterested in my situation (of course).

At that moment felt that I had actually had a "wake up call" and on reflection determined that I would not fall asleep at the wheel of life again.

I consider myself lucky that I have the history of heart surgeries I have and the friends who died early in my life from cancer and car accidents. It has made quite a difference to how I live my life and how I love everything I do and how I don't easily get myself into stuff I don't want to be in (like bad relationships).

As far as pain is concerned, I was shocked at how little pain there was. I didn't get any pain killers in the hospital and only had to ask for a Tylenol once. I started to wonder if the nerve endings went into some kind of shock that rendered them numb!

I'd also like to say it was more or less the same for me ... I feel more "pain" when I miss with the hammer and hit my fingers or when a socket wrench comes off a rusty nut under the car and I smack my knuckles.

The heart surgery is more like feeling dull and really really tired ... except for coughing or sneeze ...

 

[ForeverThankful]

I'd also like to say it was more or less the same for me ... I feel more "pain" when I miss with the hammer and hit my fingers or when a socket wrench comes off a rusty nut under the car and I smack my knuckles.

The heart surgery is more like feeling dull and really really tired ... except for coughing or sneeze ...

That was exactly the feeling, very very tired! I would describe it as exhausted. I remember in ICU I felt like I didn't have enough energy to lift a sandwich off the plate, by the time I finished eating I needed to rest!

And yes, hitting my finger with a hammer would be more painful!

 

[spartangator]

Hi Jamieann and welcome. I was in a similar situation in terms of background and timing. As everyone has said, the care teams are rather good about pain management and the like. Honestly, pulling off all the tape applied by the anesthesiologists was the worst part Also, you'll find loads of people on here who've wonderfully gone back to running/working out.