Whats the point.....................

[JannerJohn]

I'm asymptomatic with severe aortic stenosis (Bicuspid valve) and ascending aneurysm that needs replacing. Surgeon says 98% success (really????) and recommends a mechanical valve with dacron replacement of ascending aorta. I really struggle with the concept of walking into a hospital as I feel now and coming out even if I do survive the surgery with all the life limitations this will bring or worse severely disabled due to a stroke, afib, infection etc. Quite frankly I'd sooner sit it out. Weighing up the fact that you cant just go to the pub, can't really do big weights in the gym, you cant just make a bowl of watercress soup (and all the other foods you cant just eat), you cant always sleep on your front / side, you might only live a few years before all the repair fails or becomes infected, you cant play any contact sports, you live in perpetual fear of a stroke, you might be cognitively impaired (I'm an engineer and need to be on it), your libido falls off a cliff if you can even manage it at all...................... the list of woe just goes on and on and I genuinely feel has bought my life to an end. I know some people may say well your alive to see you children grow up but can I really still be an active father and engaged, is this really living I'm 50y old and fair say quite frustrated and pi##ed off.

 

[user 16827]

Quite frankly I'd sooner sit it out.

Go with that option then

 

[pekster11]

I'm asymptomatic with severe aortic stenosis (Bicuspid valve) and ascending aneurysm that needs replacing. Surgeon says 98% success (really????) and recommends a mechanical valve with dacron replacement of ascending aorta. I really struggle with the concept of walking into a hospital as I feel now and coming out even if I do survive the surgery with all the life limitations this will bring or worse severely disabled due to a stroke, afib, infection etc. Quite frankly I'd sooner sit it out. Weighing up the fact that you cant just go to the pub, can't really do big weights in the gym, you cant just make a bowl of watercress soup (and all the other foods you cant just eat), you cant always sleep on your front / side, you might only live a few years before all the repair fails or becomes infected, you cant play any contact sports, you live in perpetual fear of a stroke, you might be cognitively impaired (I'm an engineer and need to be on it), your libido falls off a cliff if you can even manage it at all...................... the list of woe just goes on and on and I genuinely feel has bought my life to an end. I know some people may say well your alive to see you children grow up but can I really still be an active father and engaged, is this really living I'm 50y old and fair say quite frustrated and pi##ed off.

you're in the exact same situation as me
aortic valve plus aneurysm repair. I have no symptoms either, even though the stenosis is classified as severe now. similar age too

the operation is better than the alternative....a guaranteed early death

 

[dick0236]

........ is this really living I'm 50y old and fair say quite frustrated and pi##ed off.

I'd be pissed too.........if it was as bad as you portray it. Where did you get such a load of BS. I've had a valve a very long time (53+yrs) and haven't had the "shitty" experiences you outline. Stick around and read what it is really like.

Glass is half-full or half-empty.......take your choice

 

[MdaPA]

Quite frankly I'd sooner sit it out. Weighing up the fact that you cant just go to the pub, can't really do big weights in the gym, you cant just make a bowl of watercress soup (and all the other foods you cant just eat), you cant always sleep on your front / side, you might only live a few years before all the repair fails or becomes infected, you cant play any contact sports, you live in perpetual fear of a stroke, you might be cognitively impaired (I'm an engineer and need to be on it), your libido falls off a cliff

There are no guarantees in life but if you do get the surgery, you have a good chance of doing these things you want but if you don't get it, you surely wont.

Suggest you read a bit more to see how people really live on anti-coagulants after getting a mechanical valve instead of those dooms-day websites and you will find you can do most if not all of those things (BTW, what contact sports are you playing at 50?). If you then still feel this way, perhaps get a biologic valve but then you may be facing another surgery/TAVR down the road.

 

[Superman]

Yeah, pretty much all the stuff you say you won’t be able to do, I wouldn’t hesitate to do. Aortic valve replaced when I was a teenager. Aneurysm graft 11 years ago (that’s twice being cracked open). On Warfarin for 30 years. Just got back from skiing with my wife and two of my five kids. I was on the spin bike for 45 minutes yesterday. Ran for a half hour the day before. I’m still younger than you at 48. I sure don’t think my life if over. Going hike in Utah for a couple weeks this summer. I’ll take my drugs and testing equipment with me.

I’m guessing you might be the type that gets a flat tire and decides your vacation has been ruined.

 

[pellicle]

I'd be pissed too.........if it was as bad as you portray it. Where did you get such a load of BS.

Janner is shaping up as someone who does not want to survive and at the very least may need a good "wake up" slap from somone close.

He has not listened to anything said here (apparently we have no idea) and seems to want to wallow in pitty. I hope he reaches out to a psychiatrist soon.

@JannerJohn , mate, I genuinely urge you to seek help soon. Why come here and ask us and then not believe us.

and this that you wrote:

Quite frankly I'd sooner sit it out. Weighing up the fact that you cant just go to the pub, can't really do big weights in the gym, you cant just make a bowl of watercress soup (and all the other foods you cant just eat),

complete bullshit, you ignored everything I wrote about my own situation.

Read this members profile, as well as his post here:
https://www.valvereplacement.org/threads/more-gym-goodness-8-week-update.41349/week 8 A week later, which was 2 days ago: SQ - 275x3, 315x3 + bonus 255x10 - 2012-05-22 --

oh but wait he doesn't get it either. He has not lost so much as you.


I wrote an extensive post to you which I have now deleted most of (because I know you had time to read it) as I don't really like putting my life on show. I opened up honestly to you, shared truth and private personal experiences. Many have written of this to you. Your comeback? More of the same.

You are coming across as a spoiled whinging brat who needs to have manned up decades back if you fall apart like this now. I feel sorry for your family more than you mate, for they are quite likely the ones taking the brunt of your condition if you whinge and fall about like this to them.

Perhaps you should sit this one out and then when you're on deaths door and see "suicide" wasn't a good option you may well find the right stuff and get surgery. Then you can have the rest of your life recovering from the poor physical condition you let yourself get to before you had the surgery (much like it would seem like you've done with your mental health).

Sometimes people actually need to fall down hard "on the bones of their arse" before they wake up and see the actual choices available. Its always a risk of course they'll stay there and allow themselves to die instead.

People die every day mate, one of my best mates is dying now from brain cancer. And you? You whinge about this horrible fate when you are actually in a far better position (something someone else said to you too).

Best Wishes Mate

 

[pellicle]

I’m guessing you might be the type that gets a flat tire and decides your vacation has been ruined.

and then sit on the side of the road weeping while his wife changes the tyre, gets them to the hotel and takes the kids out

 

[JannerJohn]

Janner is shaping up as someone who does not want to survive and at the very least may need a good "wake up" slap from somone close.

He has not listened to anything said here (apparently we have no idea) and seems to want to wallow in pitty. I hope he reaches out to a psychiatrist soon.

@JannerJohn , mate, I genuinely urge you to seek help soon. Why come here and ask us and then not believe us.

and this that you wrote:


complete bullshit, you ignored everything I wrote about my own situation.

Read this members profile, oh but wait he doesn't get it either. He has not lost so much as you.

I wrote an extensive post to you which I have now deleted most of (because I know you had time to read it) as I don't really like putting my life on show. I opened up honestly to you, shared truth and private personal experiences. Many have written of this to you. Your comeback? More of the same.

You are coming across as a spoiled whinging brat who needs to have manned up decades back if you fall apart like this now. I feel sorry for your family more than you mate, for they are quite likely the ones taking the brunt of your condition if you whinge and fall about like this to them.

Perhaps you should sit this one out and then when you're on deaths door and see "suicide" wasn't a good option you may well find the right stuff and get surgery. Then you can have the rest of your life recovering from the poor physical condition you let yourself get to before you had the surgery (much like it would seem like you've done with your mental health).

Sometimes people actually need to fall down hard "on the bones of their arse" before they wake up and see the actual choices available. Its always a risk of course they'll stay there and allow themselves to die instead.

People die every day mate, one of my best mates is dying now from brain cancer. And you? You whinge about this horrible fate when you are actually in a far better position (something someone else said to you too).

Best Wishes Mate

A spoiled winging brat? Im a father of three facing lossing my family and life and I'm rightly scared. I have read and listened to what most of you kind people have said.

 

[pellicle]

I’ll take my drugs and testing equipment with me.

I had that next door ... until the police came ;-)

 

[pellicle]

. I have read and listened to what most of you kind people have said.

after reading that above post directly after what we all wrote? Its hard to reconcile.

Now if you'd have asked "say, the Dr's say this ... is that correct" it would be different.

Rightly scared is one thing, your above post is not that.

This is not a forum for melodrama (well aside from when we're all kidding around).

So, what is it you want? Please do tell

 

[pellicle]

@JannerJohn
my view is that I'm not here to be your friend, my view is that I'm here to help you (if that's possible) to come to grips with things. I (and others) have offered many words of support and encouragement. I see very little evidence you've accepted that.

I've made it clear that your reaction is not rational and that I strongly believe that you need counselling ... did you call anyone?

I think you need to snap out of this self pitty, accept that we all suffer fear and we all live in the truth (with respect to heart surgery). Of course sometimes its a genuine depressive cycle, in which case you should seek help, and soon.

Oh, and success for our age groups is pretty much what was quoted to you. Does that not boost your confidence? Why not? Prefer the fear and pity seeking holiday?

Frankly I don't care if you hate me for what I say, I only care that you face the facts and start properly dealing with this.

You say you have a family? What the hell are you doing to them? Or are you pouring out that side here and putting up a brave face there?

You need to set aside any cognitive dissonance and work now on finding the facts (we can add verification of them here) and work on levelling out your tail spin.

Best wishes

 

[pellicle]

lastly to answer the question in the topic line: there is no point unless you make one.

We all suffer in life and we all die ... what matters is how you face up to life and how you build resilience ... I'm only seeing a dearth of resilience here.

 

[JannerJohn]

after reading that above post directly after what we all wrote? Its hard to reconcile.

Now if you'd have asked "say, the Dr's say this ... is that correct" it would be different.

Rightly scared is one thing, your above post is not that.

This is not a forum for melodrama (well aside from when we're all kidding around).

So, what is it you want? Please do tell

The points I made admittedly in my state of despair are all factual possibilities experienced by many and in part articulated as possibilities by my surgeon. There is also a reality that this is a club nobody ever wants to be in. I dread more than anything my whole life for however long it is being dominated by this. But your right my mental health has been decimated by this and additionally I have always had a mortal fear of hospitals which doesn't help at all. These are in no way derogatory to any of your comments but you are right in part that showing open infected wounds did not really help me.

 

[Luckyguy17]

@JannerJohn, agreed that it is a bummer to find out that you will need OHS to prolong your life. And lucky you (and family), for the heads up, that something needs fixing and fixing soon.

The OHS surgery will likely provide you with decades more of a very good quality of life.
And you should be thankful, to be walking into the hospital for the life saving surgery and have this time pre op, to get your things in order for you and your family (in case).

If your situation is as severe as you say it is, your upcoming quality of life is about to to take a hit. Have you lost your driving privileges yet? Should you be even be driving now? Asymptomatic you say, for how much longer?

Am hoping for your family’s sake, that you face the situation and start looking for solutions. You will need to partner with the medical professionals, your family and friends to get over this small bump and move on.

Read more, ask questions and move on.

 

[pellicle]

y state of despair are all factual possibilities experienced by many

not that I saw ... not that anyone here has validated (or more accurately have also disputed)

but you are right in part that showing open infected wounds did not really help me.

so why instead did you not look at the fact that within a year I was out on the ice and XC Skiing? That I was busting my arse to build my fitness despite suffering the loss of my wife?

Why did you ignore that I was managing my own INR and being able to travel the world and do what the hell I wanted where I wanted? In complete opposite to your bleak outcome?

I fell pretty hard (harder than you can imagine) and that WAS NOT all caused by the surgery. I recommend strongly you do the following

1. choose a mechanical or tissue valve (I'd advise mechanical unless you have a predisposing condition to suggest against that)
2. read my blog posts on managing INR (start here) so that you are dealing with reality on that.
3. stop researching everything about this and instead focus on what to do in recovery (because YOU will not be doing the surgery, you are just the patient)
4. go buy Jordan Petersons book and read it slowly and carefully. Focus on that not reading about the horrors. Focus on the parts about listening to yourself, being plainly honest with yourself and with everyone and building resilience to what is in the world

To quote from a novel I love:
Fear is the enemy, fear is the mind killer, I shall not fear.

Best Wishes

 

[dick0236]

A spoiled winging brat? Im a father of three facing lossing my family and life and I'm rightly scared. I have read and listened to what most of you kind people have said.

Many of us had kids when we had surgery, I had two.....6 and 8 and they are now older than you @ 59 and 61.....plus three grandkids about 20, 30 and almost 40.....and one deceased(drug overdose).......and a total of 5 great grandkids. I would not have seen any of this without having corrective surgery at a time when the surgery was a very big deal.........not like today where the surgery has enjoyed the advances of technology. BTW, my docs gave me a 90-93% chance of a successful outcome.....and you are "bitching" about 98%???

 

[nobog]

Well ... you could climb Mt. Everest
My Turn: Climbing Everest with a 'Bionic' Heart (newsweek.com)

 

[pellicle]

.not like today where the surgery has enjoyed the advances of technology

I would love to see what the stats are for year on year risk of death for driving and texting. I bet its worse. But then that's sudden and "unexpected"

Well ... you could climb Mt. Everest
My Turn: Climbing Everest with a 'Bionic' Heart (newsweek.com)

I love that story ... it was a St Jude IIRC

oh well, I'll just have to soldier on with my ATS.

 

[JannerJohn]

Many of us had kids when we had surgery, I had two.....6 and 8 and they are now older than you @ 59 and 61.....plus three grandkids about 20, 30 and almost 40.....and one deceased(drug overdose).......and a total of 5 great grandkids. I would not have seen any of this without having corrective surgery at a time when the surgery was a very big deal.........not like today where the surgery has enjoyed the advances of technology. BTW, my docs gave me a 90-93% chance of a successful outcome.....and you are "bitching" about 98%???

Many of us had kids when we had surgery, I had two.....6 and 8 and they are now older than you @ 59 and 61.....plus three grandkids about 20, 30 and almost 40.....and one deceased(drug overdose).......and a total of 5 great grandkids. I would not have seen any of this without having corrective surgery at a time when the surgery was a very big deal.........not like today where the surgery has enjoyed the advances of technology. BTW, my docs gave me a 90-93% chance of a successful outcome.....and you are "bitching" about 98%???

I have never desputed anybody elses experiences nor would I.