Having doubts about my elective surgery on the 14th April

[rufus]

So I'm having a wobble.... Previous AVR dec 2007 (mechanical valve) bicuspid valve diagnosed at 36 asymptomatic, biventricular pm due to lbbb and low ejection fraction dec 2011, ascending aneurysm identified October 2012, 4.7 and has periodically grown to the 5.3 it is now ( although different measurements at different times). 43 yr old female. Having my six monthly check up in November I was advised surgery in the near future would be sensible. Although the aneurysm had originally been just ascending it had now moved round to include my proximal arch.

Long story short weighing up my quality of life at present and what it could be like I agreed surgery was the best option. For the past 4 months I have plodded along mostly ignoring the 'time bomb' and impending surgery however it is now happening - I am due to be admitted on Sunday (due to warfarin) for my operation next Tuesday . I live alone and have minimal support from friends / family as they all have their own lives. I have spent most of my time being strong - telling myself I will get through this but I have been advised of a 20% risk of mortality (21.5% euroscore) - this scares the hell out of me and lead me to a weekend of 'should I / shouldn't I' - the deep hyperthermic circulatory arrest terrifies me and no matter how hard I am trying I can't get the negative 'this might be my last few days' out of my head.

I'm sure there are many of you on here that have been through the procedure I'm due to have and maybe some that have decided to live with their aneurysm - I don't know what to do ..................I am really doubting whether I should have the surgery. I'm based in the Uk

 

[jhc1]

Rufus-I think all of us have gotten late cases of "cold feet" about surgery. I know I was asking myself what I was doing pretty much up to the time I was wheeled into the operating theater….My only advice is to place your trust in the team of professionals in charge of your care. They do this every day, and are good at it. I'll be thinking of you, and looking forward to your posts in the "post surgery" forum. Good luck!

Joe

 

[pellicle]

Hi Rufus

So I'm having a wobble....
I live alone and have minimal support from friends / family as they all have their own lives. I have spent most of my time being strong - telling myself I will get through this but I have been advised of a 20% risk of mortality (21.5% euroscore) - this scares the hell out of me and lead me to a weekend of 'should I / shouldn't I' -
....I don't know what to do ..................I am really doubting whether I should have the surgery. I'm based in the Uk

I was 47 when my aneurysm was identified. Basically I'd not gotten around to a checkup for well over ten years (living overseas a lot, I'm Australian) but I felt from the way things were "feeling" inside my chest (the feel of my heart beat) it felt like there was some leak. That I was XC skiing almost every day in the winter and cycling to work made me feel that it was minor but that it appeared and developed within a year or so made me feel "it was time".

They found some regurgitation but they also found a "bouncing baby" aneurysm. That little fella got everyone medical agitated as it was already at the size where it could rupture "any time". That would of course most likely be fatal.

That's the thing ... fatal ... dead ... So surgery was booked and my poor wife went from "my husband has a heart valve issue" abstract to "my husband could suffer intense pain and die before my eyes".

the deep hyperthermic circulatory arrest terrifies me and no matter how hard I am trying I can't get the negative 'this might be my last few days' out of my head.

Perhaps I'm an idiot, but I just never focus on all the things that are done. They are just "things that are done". I know (as you do too) that you go to sleep and you wake up. I have skinned and "dressed" a few sheep and other animals and so I know intimately what goes on in surgery. I could focus on that and get all worked up about it, but I just instead act like a ostrich and ignore it (anyway, that's somebody elses job).

However, the very real point you mention is that you live alone and have little support. I think I understand that well for after my surgery just as I was getting back to normal my wife died leaving me alone here in the house. Barely 3 months later an infection erupted from the surgical site and I had to go back in for (what would become) 2 operations to get the source of the infection out. I posted here about that as it was happening (link), but the point is when I came home I came home alone to a house with lots of things which needed doing and to some storm damage which needed fixing (we'd had some storms while I was in).

I felt very weak and very tired and very alone.

So I think I grasp your point on pushing through this to come home alone and struggle ... and for what?

Well the 'for what' is that if you don't have the surgery for the aneurysm it will kill you. Also it will have a significant impact on your life, as you seem you are an anxious person and knowing you have a time bomb in your chest will impact your life.v Thoughts will occur to you such as What if you dropped dead when you were driving? You could kill someone else?

So no matter how hard it is to face up to all the demons in your mind about the surgery, avoiding it will just make more and worse.

I say, stop even thinking about what the surgeon has to do and instead thinking about what you have to do. You have to prepare in advance for coming home. You'll need to work out who can help (paid care or health provider provided ... charity?) and what systems you need in place there to assist you.

Sorry about the long reply, but I wanted you to "get to know where I was coming from" with my words.

Best Wishes

PS: I'll have a go at answering your oblique implied question:

Long story short weighing up my quality of life at present ...

without the surgery your quality of life will likely remain good right up to the point you die of an aortic dissection and blood loss to the thoracic cavity (assuming you deal with the anxiety of the time bomb in your chest). How do you feel about death in the next few months or perhaps years?

Personally there is not a day since Anita died where I actually am glad that I'm alive. I always feel that I'd have been better of dead. Curiously this does not make me suicidal (and I have thought about that). I have adequate tools to quickly end my life (you recall I'm a hunter) but have not. This is a conscious decision. I'm alive and I do my best to make that count ... just I'm not "happy" to be here.

So that must factor into your "should I or shouldn't I"

apology if I've over thought this reply, your question seemed serious to me and I took my reply seriously.

 

[cldlhd]

I had my brain "chilled" in February and I'd like to think I'm just as witty as ever but that might not be saying much. My surgery timing was my choice also but my aneurysm was measured at 4.8 cm and was also spreading into my proximal arch. When it was removed it actually measured 4.99 cm and was described as being very thin which makes me all the more happy it's out of me and I imagine sitting in a bin somewhere. This is not to say I don't relate to the 'cold feet', when my surgery scheduled for Friday February 6th was postponed they said I could either do it Saturday or go home and reschedule for another day it was difficult to opt for the next day.

 

[AZ Don]

Generally surgery is recommended when the surgical risk is comparable to the annual risk from the aneurysm - but if you forgo surgery then you run that risk every year, and the compounded risk is much higher. In the end you will still need the surgery or you will be dead, so delaying only increases your risk. My situation was different in that my aneurysm was limited to my root and ascending aorta, and so my risks either way were low single digits, but the way I looked at it the risk over multiple years far outweighed the surgical risk, and so I had surgery to try to optimize my chances for a long life.

I think Pellicle makes a good point in talking about living with the anxiety of the aneurysm as well. I only knew about mine for a few weeks but felt like I had the Sword of Damocles hanging over my head. It was such a relief to get it fixed. Good luck to you.

 

[Agian]

We're allowed to have a wobble, every now and then Rufus. I've had heaps of them. I'm always second guessing my decisions, so I can empathise with your anxiety. Keep us updated.

 

[tom in MO]

I wobbled for sure, many times. I found that rote prayer, for me the rosary, helped focus me and become comfortable with the decisions.

 

[neil]

As above posts have said we all have a wobble before an op. Pellicle nice piece pal

 

[haggis basher]

Hi rufus
I had to wait for 6 months before I could get my operation! Having no family, I went through a terrible time waiting on a letter to let me know when I was having the op. Most of my friends had there own lives to live, so I didn't get much help. I became so sick... I could hardly get out the door! (I have no family)
Being honest, the operation was less trouble than the six months prior! (AVR tissue)
I am not a religious person, but I have always believed in prayer. I know that there is some 'power' out there, greater than us, and when honestly asked for help - the answer arrives.
Wishing you all the best.
Brian

 

[Duffey]

I don't blame you for having a wobble, but it doesn't look like you've got much of a choice. Best wishes going forward. Mary

 

[workmonkey]

Nearly all of us considered postponing or canceling the surgery, especially the days before. It is a totally normal and expected sensation. Once in the hospital, my surgery was delayed about six hours, at which point I seriously considered just walking out and going home ... the anticipation was nearly overwhelming. But, like nearly all of us here, I trusted logic, not emotion, and got through it. Now, I'm on the other side and have never once have regretted it. All you have to do is walk through the hospital doors, they'll do all the rest. It's really that easy. To get through the anxiety, just focus on how ecstatic you will feel upon waking up, knowing it is officially behind you.

The important thing to remember is that waiting is not a solution. It might ease the immediate stress of surgery, but only a little. And at least with the surgery, you know there is an endpoint to the anxiety. If you wait, you have an endless stretch of days that you won't ever feel safe or healthy or relaxed. Yes, it might less intense than the fear of surgery, but that is replaced with the uncertainty of a threatening problem unfixed. We may not have asked for this affliction, but once you learn of it you have to accept it and do what you can to get back to long health.

Stay positive and we look forward to hearing from you on April 15th!

 

[cldlhd]

Nearly all of us considered postponing or canceling the surgery, especially the days before. It is a totally normal and expected sensation. Once in the hospital, my surgery was delayed about six hours, at which point I seriously considered just walking out and going home ... the anticipation was nearly overwhelming. But, like nearly all of us here, I trusted logic, not emotion, and got through it. Now, I'm on the other side and have never once have regretted it. All you have to do is walk through the hospital doors, they'll do all the rest. It's really that easy. To get through the anxiety, just focus on how ecstatic you will feel upon waking up, knowing it is officially behind you.

The important thing to remember is that waiting is not a solution. It might ease the immediate stress of surgery, but only a little. And at least with the surgery, you know there is an endpoint to the anxiety. If you wait, you have an endless stretch of days that you won't ever feel safe or healthy or relaxed. Yes, it might less intense than the fear of surgery, but that is replaced with the uncertainty of a threatening problem unfixed. We may not have asked for this affliction, but once you learn of it you have to accept it and do what you can to get back to long health.

Stay positive and we look forward to hearing from you on April 15th!

Very well said or should I say written . I waited around all day Friday and my surgery was cancelled. I promptly got a migraine probably due to a combination of stress and fasting. Spent the night in a hotel room seriously considering fleeing but as you say you'll never feel totally comfortable until you get it fixed. Its only been 2 months and I'm sure it'll always be in the back of my mind and occasionally the front but I'm not nearly as worried as I was before.

 

[rufus]

Thanks for all your comments and support - received a phone call today to say they have had to cancel my operation due to lack of beds !!! Re-scheduled for the 21st now......just as I was getting over my wobble, so the countdown starts again. I will keep you all updated, thanks again for the words of support, honesty and encouragement.

 

[Boomanchu]

I feel your pain...... I showed up at the hospital at 5:30 am for my mitral valve replacement surgery. I was in the pre-op room starting to get undressed when I was told that I would have to go back home as there was no room for me in ICU. I was rescheduled for 9 days later but I'll tell ya...... I was all prepared for the big day and had to start over. As it was I waited for ever because I had endocarditis and was on IV antibiotics for for 2 weeks inpatient and 7 weeks at home. Second time was easier showing up....I guess you just get better at preparation. I was cracking jokes and begging for pictures as they wheeled me into the surgical suite. BTW, I DID get pics of my surgery.

 

[river-wear]

I'm so thankful I was already in a drugged haze before they figured out they had to delay my surgery - and it was only a 5-6 hour delay.

Hang in there, rufus, the waiting is one of the toughest parts. We'll all be cheering for you and waiting on the other side.