Pre-Surgery mind games

[Jayhawk]

My surgery is scheduled on December 10th. I have found these pre-surgery weeks to be a wide range of emotions. What I think is the weirdest is that in daily life I just go on about my business and then BAM! I remember I am having major, risky surgery. Its almost like I am being told this every time I remember during the day. I get this "oh crap" feeling and have to deal with the thought process all over again. Really I am doing well with this whole thing, but I find it odd that I keep feeling surprised by it.

 

[dg_moore]

I think we're pretty good at keeping the door closed on unpleasantness. But every now and then it pops open for a little while.

 

[Phil]

Hi Jayhawk,

What you describe is pretty normal. My experience was by the time surgery came around I was actually looking forward to it. I was ... bring it on ... as I wanted the damn thing over, done and dusted. And in reality it wasn't too bad at all. Now 20 weeks down-the-track you'd never know it had happened. I feel the best I have in years and rarely think about it. If anything, I feel after this surgery (my third), I'm fixed and no longer really have a heart issue - my new mechanical valve just beats away beautifully and apart from checking my INR each Sunday I give it very little thought.

Good luck and all the best.


Phil.

 

[neil]

agree with phil by the time it came round i was was the same,actually i was very calm on the day of the surgery and this is from a guy whos frightened by the flu jab, you will be just fine and yes the waiting is the worst part of ohs,

 

[ski girl]

It may be major surgery - but it's not risky. If you can get your head out of the 'ohhh I'm having major risky surgery freaking out!' mindset then you will be calmer.

Surgeons have been replacing valves for AAAAAAAGES and the risks are so SO low; you'll be fine.

 

[epstns]

ski girl hit the important point - this surgery is not risky, compared to many other surgeries. Unless you have complications not mentioned here, your chances or survival are something over 98%. That's pretty reassuring.

Also, don't forget that although the surgery is a life-altering experience for the patient, for the docs and care team, it is truly "just another day at the office." They do this all the time, they've seen it all before, and no matter what happens, they know what to do. (I know this to be true - I put them to several tests in the days just after surgery, and I'm still here and life is far better than before surgery, which wasn't that bad either.)

 

[MrsBray]

You are not alone. I'm not sure how I manage to keep the panic below the surface, and I don't have a date yet. I am so close to the point of saying. "Just do it already!" so I can stop being so anxious.

 

[Agian]

I'm with you Mrs Bray. In fact, when I'm not thinking about it, it somehow doesn't feel right. Strange, I know.

 

[Tdot]

I feel the same way, I'm not scheduled for surgery, I'm just dealing with my last followup but I find that if I'm not thinking about it it doesn't feel right. Then if I forgot about it for an hour and it's like a slap in the face again.

 

[BarbATS]

Hello, there, Jayhawk,
It is good to hear you are doing well for the most part of your days! Maybe your mind is simply prepping you for your December 10 "appointment".
Kind of like "dry runs" of what you'll be experiencing on that special day. Elective surgery--as compared with an emergency situation--allows us to in some ways come to terms with our anxiousness, but of course the flip side is that there IS THAT TIME TO "TREAD WATER" AS THE DATE APPROACHES! A mixed blessing. I hope you will be able to feel ok about the work your mind is doing for you. Perhaps harnessing that free-floating discomfort by having a favorite song or poem or mantra at the ready and going to that soothing "device" at those moments will bring you some relaxation...or, if possible, stretching, dancing, or looking yourself in the eye in the nearest mirror--and smiling at yourself!

 

[aliciavicki]

Hey Jayhawk, I'm going in on November 27.... like you I swing from being totally fine with it, to totally anxious about it. It's not the risks that I fear - but something else, and I've had trouble pinpointing exactly what that is...

 

[Agian]

I'm glad you raised this point, Alicia. Many here talk about this process allowing us to 'come to grips with mortality', 'live one day at a time', which btw is wonderful advice. Now, I've seen many doctors about this and they all told me I'd be fine. And yet, I'm 'coming to grips' with my 'mortality'. OK, let's say the risk of dying during this surgery is 1-2% (for most). However, this 'death-rate' is not that different to many other procedures. In fact, it may be significantly less. Could it therefore be cultural? I mean, we hear all these metaphors about the heart being the 'seat of the soul', and here we'll be... laying on a cold table, split in half, whilst some guy we hardly know cuts open our heart. Me personally, I'm not scared of death in and of itself. But dying (you're still alive then) is a different matter; 'How would my loved ones cope?' etc. Like you say 'something else', which I too have trouble pinpointing. I've been thinking about this a lot, lately.

 

[Paleowoman]

Like you say 'something else', which I too have trouble pinpointing. I've been thinking about this a lot, lately.

I'm in this position now too, and for me the 'something else' is the whole ghastliness of this operation and the whole discomfort that we're bound to expereince at some point after before we recover fully. I can watch videos of the operation no problem, I can feel quite detached and interested, I'd actually like to see what my own heart looks like, but a knife cutting into it and needles and threads holding things together after.......and the intubation....

And, as well, I just don't feel that I can trust my body anymore - I mean, here I am feeling fine physically but being told by doctors and seeing on echocardiograms etc that actually I'm not fine at all - it is so insidious and I think I will feel that insidiousness for a long time now.

 

[aliciavicki]

And, as well, I just don't feel that I can trust my body anymore - I mean, here I am feeling fine physically but being told by doctors and seeing on echocardiograms etc that actually I'm not fine at all - it is so insidious and I think I will feel that insidiousness for a long time now.

I think that's a great point. Perhaps it's disappointment. Disappointment in ones' self for not seeing that something was wrong. I worry that post surgery, how will I know if something's wrong? Do I just go about my day and hope for the best?

 

[aliciavicki]

And that's in no way supposed to be negative - thus far this process has been a bit of a rollercoaster, and the trust/mistrust, satisfaction/disappointment is all part of it.

 

[Marcia58]

Hi, all!

I remember that sort of feeling, too. For me, it was apparently the thought of something so life-altering, so personal, so invasive--so "intimate", really--without my conscious participation or recollection. Almost a violation.

I only pinpointed it this year, though, when I heard a woman speaking, who told about walking into a public building in a major city, and being taken by two men to a small room, where she was stripped of her clothes, restrained, given knockout gas, and shot full of drugs. Then one of the men involved stabbed a sharp knife into her!

Then she revealed that she was describing her cancer surgery. She went on to call herself a "victim of hope" and to point out that much of our beliefs about our lives are determined by our interpretation of our circumstances.

I've come to believe that what was happening before my surgery was that my head grasped the "hope" part of the scenario, but my heart only understood the "victim" part.

Just my 2 cents.

 

[Paleowoman]

Hi, all!

I remember that sort of feeling, too. For me, it was apparently the thought of something so life-altering, so personal, so invasive--so "intimate", really--without my conscious participation or recollection. Almost a violation.

I only pinpointed it this year, though, when I heard a woman speaking, who told about walking into a public building in a major city, and being taken by two men to a small room, where she was stripped of her clothes, restrained, given knockout gas, and shot full of drugs. Then one of the men involved stabbed a sharp knife into her!

Then she revealed that she was describing her cancer surgery. She went on to call herself a "victim of hope" and to point out that much of our beliefs about our lives are determined by our interpretation of our circumstances.

I've come to believe that what was happening before my surgery was that my head grasped the "hope" part of the scenario, but my heart only understood the "victim" part.

Just my 2 cents.

I think what you describe is a lot of how I feel is going to happen to me. I wrote in another thread that I feel like a "lamb to the slaughter". None of what is going to happen to me will be under any of my control, I will just be manipulated and cut, things "done to me" as far as my body is concerned. That insticntive part of me, the part that will respond to the stress of the operation, the part that will respond to the cutting and invaisiveness, will be completely beyond my conscious mind and control and may feel this much as that woman described. Heck, that's why everyone needs insulin becasue of the huge response of the body to stress, even though pain killers are administered, the body still feels the enormous stress of being cut like that. It doesn't matter that before, or after, the operation I can rationalise that the operation is to help - the instinctive part of the body does not respond to that. It just responds to what happens to it.

I've read in Carol Cohan's book 'Coping with Heart Surgery etc" that the situaton becomes similar to Post Traumatic Stress.

I want to know how we can validate what we go through ? Maybe that would help somehow ?

 

[Marcia58]

What helped me:

1. learning as much as possible ahead of time
2. communicating w/medical staff as much as possible
3. get as much allowable documented ( I have photos of me in ICU and a video clip from the surgery cam)
4. get a copy of your medical records
5. have someone you love and trust with you every moment possible

Most of all START NOW to think of yourself as a victim--a victim of hope. a victim of grace. Remember how blessed you are to be alive now, when these things are fixable. Born 100 years ago, you (we) would have died a slow, miserable death.

 

[Paleowoman]

3. get as much allowable documented ( I have photos of me in ICU and a video clip from the surgery cam)

I asked the surgeon if there was video or photos during surgery and she said a very irritated "no". Is surgery normally videoed ? Who took your photo in ICU ? I had thought to ask my husband but I think he would feel embarrassed to bring in a camera if it's not 'normal'. For me it would help me to see how I was when unconscious and help validate the experience. Video of surgery would be even better.

 

[mbeard]

I feel your exact feelings Paleogirl.

I feel your exact feelings Paleogirl.

I'm in this position now too, and for me the 'something else' is the whole ghastliness of this operation and the whole discomfort that we're bound to expereince at some point after before we recover fully. I can watch videos of the operation no problem, I can feel quite detached and interested, I'd actually like to see what my own heart looks like, but a knife cutting into it and needles and threads holding things together after.......and the intubation....

And, as well, I just don't feel that I can trust my body anymore - I mean, here I am feeling fine physically but being told by doctors and seeing on echocardiograms etc that actually I'm not fine at all - it is so insidious and I think I will feel that insidiousness for a long time now.

I see that your surgery is scheduled for January 2013. I can imagine your anxiousness until that day. I too feel weird that I have just been diagnosed (August 2013), with a bicuspid valve and 4.2-4.5 ascending aorta. I am 57, and thought I was fit as a fiddle...in fact I have had trouble convincing people that this is really true.

It's true alright. Now every ping in my chest, every pound of my heart, and every extra beat scares me. I have been to the emergency room once since August (making it three cat scans in 6 months...not good.)

So waiting and watching is hard too. Heck, it's all hard.

Being a part of this forum has helped me out a great deal.

Thinking about you now. Stay strong,