John,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.
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.