Hello - this is the thing, because cardiologists waters this condition down, they make you believe that it is not serious, but 'Googlemed' says otherwise! In regards to my wife, we had another chat and she said that she was searching about my condition, reading abstracts and research papers in terms of mortality/morbidity and that she has been doing this for quite some time without me knowing! She gets annoyed when she find out I was reading about my condition over the internet and she was doing the same!
The things is, over here, in the UK, I don't think there is anywhere we can go to meet up with people who are going through same problem and who may need some support in being educated about the conditions, risks etc. The hospitals cardiologists have very limited time to sit down with you and go through your questions/concerns - They leave you with millions of questions in your head, but no answers.
Epstns – I hope that you are well and that what you’re going through is nothing serious. This is a roller coaster and emotions do vary greatly. I have no idea what the trigger is, but last night I dreamt about going through surgery, so I woke up researching about mortality rates. I dreamt about it for no apparent reason at all, simply dreamt about it! Although it was a very, very (double very) weird dream; basically my surgeons suggested wrapping my aorta with my manhood skin! What on earth is that about? So the surgeons needed to remove my manhood to take the skin off and wrap it around my aorta!! I recall running away and two surgeons running after me to put me to sleep! (It was a nightmare). The brain is very mysterious thing, if there is someone with the ability to interpret this, you’re very welcome! Or I have underlying mental health issues, one of them!
This condition does take its toll physically and mentally and I learned that it also does on my loved ones! I thought I’m getting better in managing it as in fact I posted before, but this opened up something else now and I am again re-learning to not letting it eating me up as you said CLDLHD. Your post is an encouragement to me as you went through surgery and seeing you’re back to normal activities etc., gives me a lot of reassurance.
Protimenow, I thought many times to get it repaired now, so I can put it at the back of my mind and stop worrying about it and upcoming surgery etc. I talked to Tal Golesworty and to Professor Pepper, who both said that I could be a good candidate for surgery, but they needed me to get a referral from my cardiologist. My cardiologist, however declined his referral and said that at 46-47mm it is worth waiting as I may not need surgery for a very long time or he keeps mentioning, could be never! . I do trust my cardiologist and in a way, his suggestion was a relieve, however at the same time I was disappointed as I genuinely wanted to get this done and to get it off my mind!
Marc Kowal – your post given me goose bumps! I vision myself doing the same thing with the ring and seeing my wife and kids in the same state whilst reading your post, its emotional!. I think I will tell my surgeons that I don’t want surgery and resist it completely!
What did you do after? Hope you don’t mind me asking, but were you upset and questioned what if? How did you feel? I like to hear the detail, if possible as I keep thinking, for example, what would I do when they are putting the IV in etc., I do not know how to react, I may get very aggressive/upset/run away! I don’t know. What about you CLDLHD and others who went through this surgery? Also, did it felt quick when you woke up? Did you know what just happened? I am sorry to ask all these questions, perhaps I need to put this on another thread.
The thought of my family problems starting and mine ending, like you said AZ Don, is a horrible feeling. I mean I wouldn’t know, but its true, they will be in hell and I hate the thought of them without me in a selfish way! But hopefully, it won’t happen!! I don’t want it to happen, I got things I need to get on with life, I need to see my kids grow, my wife and I getting older, I learning new things and travel together. Why the hell I’m always thinking about dying, death, death, death!!!
Rachel – it does make you grow closer with loved ones, but at the same time, it makes me feel every now and then, what the hell I am doing to them. If it’s not the condition worry it’s about me being anxious and ‘on edge’. They try to get my attention, during weekends and my head is in planet aorta or planet death so I get irritated that they are almost interfering with my thoughts and then I feel guilty and get myself in stuck in a cycle.
Lastly I will be grateful to you if you could guide me through a good source of information on mortality/morbidity rates with someone at my 47mm aortic root size etc./ surgery outcomes and more?
My promise to you is that I will give my wife all my log in details and if I ever need anything done, she will keep you updated, plus, I know how amazing you all are in supporting/educating and simply listening to concerns.
Thank you all very, very much for contributing your thoughts. Wow, sorry, its a long post.
I feel it's over for me at a young age now.
