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

[Chuck C]

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.

John,
it is normal to feel that your life has been turned upside down when you receive such news. In July 2019, I received news similar to yours- bicuspid valve, aortic stenosis, and also news of a very bad genetic lipid condition.
For me, the next 10 days were hell as I adjusted to my new reality, but I have tried to make a list of things that I am grateful for, and in reality, I am grateful for so much- even my diagnosis. Yes, grateful for my diagnosis:
-If they had not diagnosed me my condition would not be monitored and it might be discovered only after it was too late
-I'm grateful that I can have a normal life expectancy- if I make sure to get the surgery when it is time. The only thing that can screw me up in this regard is if I don't get surgery.
-I'm grateful that we live in an age where survival for this operation is very high- our age group it is probably over 99%.
-I'm grateful for my family and their support
-I'm grateful for a new perspective on life. We are all only given a certain number of days here and we need to make the most. In the end, whether we live to 40, 58 or 99 years old, in the end we know we will not live forever, so make the most of what time we have. In the wise words of Gandalf:
“I wish it need not have happened in my time," said Frodo.
"So do I," said Gandalf, "and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.”

And that really is so true. What will we all do with the time that is given us.

And, after surgery, my life will be a little different, as I am probably going with a mechanical valve, in order to maximize my life expectancy. I will not be able to do some things I really love- like competitive Brazilian Jiu Jitsu, boxing and kickboxing.
But, I've been putting a list together of things that I enjoy that I will still be able to do and this list is much much longer than the things that I will not be able to do. And, I plan to add some exciting things to the list of things which I can and will do, which I have not yet experienced.
I won't counter every point in your list of things which you believe you will no longer be able to do, as others have countered this well with facts already- I would say that having researched things independently, I agree that you have been given some bad information about what life will be like after surgery.
I am very glad that you are getting the help that you need. It sounds like your biggest issue right now is the psychological one. Your physical issue has a solution with likely a very good outcome. For what its worth, I have many engineering friends and one thing I have noticed is that often they feel the need to try to control outcomes of all situations- perhaps this comes with the nature of engineering: identifying problems and coming up with a solution. If you find yourself wired this way as well, perhaps you can use it to your advantage in dealing with this, but you will need to come to terms that you can not control the outcome with 100% certainty. All you can do is control the things which you can control and be at peace with the things which you can not control. Ultimately, once you sweep away the psychological cloud that is hurting your judgement, your scientific mind can be used to sort through the literature and help you make the best decisions for you and your family, both heading into surgery and in life after surgery and you will have a life after surgery.

 

[JannerJohn]

'my sisters husband died ( he was part of the 2%)'

Was this in reference to him having heart surgery and dying as a result?

I had the a rotten year. January my sisters husband died ( he was part of the 2% ). March my brother died from cancer on his brain. My mother-in-law also died in March. In April I got the virus which has left me with some long term problems. I had a TIA in September and later had a MRI to check for any damage to my brain and they found some scarring. I also had a wonderful year I survived the virus, my daughter got a "très bien" in her BAC and is now studying Law in Paris. We had 3 week vacation in France and Spain. My wife is working from home and loves it. Most days I play table tennis and cycle 20 or 30 kilometers. Our bank balance is very healthy with our lack of ways to spend with the curfew here in France. I am a the glass is half full guy and love my journey through life as I do not believe in life after death. Jannerjohn I had my first OHS in 1966 when I was 15 years young.

'my sisters husband died ( he was part of the 2%)'

Was this in reference to him having heart surgery and dying as a result? I'm very sorry for your horrible year.

 

[pellicle]

But after the surgery I immediately felt better. The warfarin has not been a problem

pretty much this is the norm (I mean as the statistics rightly indicate).

I'm glad your story had the (expected) happy ending.

Best Wishes

 

[Art O Ceitinn]

Hi jannerjohn yes my sisters husband died while having his aorta valve replaced to be blunt he bled to death. He was 72 years old and part of the 2%.
But you are missing the point. I was 15 year young when my heart problems was confirmed by a young cardiologist Dr.Risteárd Mulcahy. During my 10 day in the hospital i had 2 angiograms while under general anesthetic and then returned to the hospital 3 weeks later (they let me out for Christmas) and had my first OHS. I survived and the odds were not 2% more like 50/50. November 2007 I had my second OHS in Paris and again I survived. 2 days after the op i had a shower and walked slowly, after 6 days I left the hospital. The difference between the two OHS was like chalk and cheese. First op I lost a lot of weight, about 30 pounds and the pain was not controlled. Second op the pain was controlled and I lost no weight. First op i saw at least 10 patients die, second op no deaths. I know that facing OHS is a bit scary but after your op you are cured not like my brother who was super fit and there was no cure for his cancer.
I am living a normal life lots of up and some downs. But my heart problems did not stop my life, I have climbed and skied mountains got drunk. cycled across Europe and I still like the S** . So jannerjohn your life is not over, it will get an extension if you can sort out your head. Your heart has a cure GO FOR IT

 

[SlilzMars]

This is a very difficult question you have to weigh the pros and cons, but I'm leaning towards the first option, as your chances of a long life increase.

 

[DaveLee]

I feel for you because I know what your going through, I have been there.

I had my valve replaced in 2008, not a long time ago but its still upsetting just thinking about it.

I will have to have my aortic aneurysm fixed soon and have great deal of fear of reliving it all over again.

If nothing else do it for your family, DONT give up.

I was an EE for most of my life and have my name on 10 or11 patents forget which * I did some of my best work after the operation. Now at 70 my short store is not so hot, ask my wife

There was NO change in life after the operation except the green stuff, which I never liked much anyway. My wife and I do a 1 - 1.5 mile walk every day. I did have to have a pace-maker installed 6 years ago from damage to my heart. My case was not found soon enough and I was told NOW or never **.

I wish for you only the BEST
Dave

* I did must of the ground work for a machine that cuts the defects out of french fries for McDonalds
** what they meant was now or DIE

 

[newarrior]

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[newarrior]

=.

 

[newarrior]

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[newarrior]

I feel for you because I know what your going through, I have been there.

I had my valve replaced in 2008, not a long time ago but its still upsetting just thinking about it.

I will have to have my aortic aneurysm fixed soon and have great deal of fear of reliving it all over again.

If nothing else do it for your family, DONT give up.

I was an EE for most of my life and have my name on 10 or11 patents forget which * I did some of my best work after the operation. Now at 70 my short store is not so hot, ask my wife

There was NO change in life after the operation except the green stuff, which I never liked much anyway. My wife and I do a 1 - 1.5 mile walk every day. I did have to have a pace-maker installed 6 years ago from damage to my heart. My case was not found soon enough and I was told NOW or never **.

I wish for you only the BEST
Dave

* I did must of the ground work for a machine that cuts the defects out of french fries for McDonalds
** what they meant was now or DIE

Dave--I understand you can eat green if you titrate and adjust Warfarin. You need green 6x a day to keep your hearty healthy.

 

[newarrior]

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[newarrior]

=

 

[newarrior]

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[Superman]

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The OP has a wife and kids (3 I believe)?

 

[newarrior]

--

 

[Superman]

T
That's badass..I wish I had that

After repeatedly posting the same thing (the OP), this thread, a lot of folks lost patience and moved to the “tough love”, snap out of it route.

Some context is lacking in your responses.

Frankly, there’s only so much hand holding that can be done in a public forum. Any real help is going to have to come in person from professionals. One cannot expect the same level of patience and professionalism from a public forum.

 

[newarrior]

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[Superman]

That's no reason for the attacks on the OP

I’m sure you, of all people, have noticed that when you keep asking the same questions over and over, and getting the same responses, only to disrespect all those people who took the time to answer when you ask them the same questions yet again - well - folks get a little terse and lose patience.

 

[newarrior]

I haven't intentionally repeated myself nor have I disrespected anyone. I feel disrespected by your last comment. If I did ask the same question more than once then perhaps I haven't found an answer or I haven't found the right answer yet or one I feel comfortable with.

 

[newarrior]

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