Just received news today following most recent scan that BAV valve now moderate/severe so surgery to be planned next 3mnts for mechanical valve and aortic aneurysm repair (5cms). Knew the day was coming but really scared. Live in UK and this forum has been brilliant to learn from - especially how brave many of you are that have found yourself in this position.
46yrs old male in UK with BAV / Aneurysm - advised today that surgery needs to be within next 2/3 months. Scared
- Thread starter Rich1975
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cldlhd
Well-known member
Sounds very familiar. I was just about to turn 46 when I had my surgery 7 years ago. I also have a BAV and had an aneurysm. I kept my valve but had the aneurysm replaced ( The root, ascending and hemi-arch were replaced) . Seeing that I'm in the United States, I can't give you any advice on where to get it or any of that, but I can tell you that it's normal to be scared. I would say if you're not scared a little bit, you're either crazy or you're a Zen Buddhist master or something. However, as you have surely heard, there are a lot worse things you could be diagnosed with, a hell of a lot worse and considering your age and it is preemptive surgery not emergency, you almost certainly turn out fine. It's hard to do at the time but I try to look at it instead of why did this happen to me? I look at it more like I'm so lucky they found it before the aneurysm let go. I know it sounds simplistic. Recovery's different for everybody, physically. I felt pretty much up to snuff and was back at work after 3 months, mentally it took me a little longer to be fully confident in my physical abilities and maybe this is just me but the first month or so after the surgery I just felt a little bit down and not like myself. The only reason I include that is because if you happen to have a similar feeling just know that it will pass. It's a traumatic thing for your body and mind to have a surgery like that. So you have to give it a little time to expect to feel normal. Look forward to hearing about your recovery
Thanks so much for this response and taking the time. It’s people like you on this platform that have been through this and see your way to help others approaching do the same. Comforting words thanks
pellicle
Professional Dingbat, Guru and Merkintologist
I don't consider myself brave, just take each step as it needs to be taken.
I recommend you watch this for an introduction to a different life viewpoint.
My own view is also to not attempt to control what you can not
https://cjeastwd.blogspot.com/2015/09/denial-or-delusion.html
Best Wishes
I recommend you watch this for an introduction to a different life viewpoint.
My own view is also to not attempt to control what you can not
https://cjeastwd.blogspot.com/2015/09/denial-or-delusion.html
Best Wishes
I think one of my biggest fears is that I’m a passionate runner and cyclist since I was in my teens. My hope is that after proper recovery, I can reach same levels of fitness. I have noticed declines aerobically in last 12mnts so perhaps this operation will have me coming out even stronger and fitter. Guess I need to hang on to hopes like this.
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Rich,
Sounds like you will do well after recovery from this surgery. I am 58 and in decent shape but nowhere near your athleticism, and things have gone well after 4 weeks. Best wishes to you. As Tom Petty said, the waiting is the hardest part.
Sounds like you will do well after recovery from this surgery. I am 58 and in decent shape but nowhere near your athleticism, and things have gone well after 4 weeks. Best wishes to you. As Tom Petty said, the waiting is the hardest part.
pellicle
Professional Dingbat, Guru and Merkintologist
everything here shows that will be the case.
I can't underscore enough: do not fear, Frank Herbert wrote in Dune:
hope is also not needed, only your effort in proper recovery process and
- do not over do training, listen to your body (as you should already be doing)
- make small steps forward, no slips back
https://www.valvereplacement.org/th...nd-need-to-make-a-decision.887879/post-912206
my adaptation of the Mentat mantra (Frank Herbet - Dune)
Just to let you know these are not just words I say within no experience in struggle
https://www.valvereplacement.org/threads/just-got-the-news-bav-age-40.856191/post-856461
Some things are much harder to heal.
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Hi Rich. I was in a similar position to you. 34, BAV, a semi decent runner and fitted with a mechanical valve last year (at Royal Papworth in Cambridge).
My experience is that you will get back much of your pre-op fitness reasonably quickly. I have just done my first post-op half marathon 7 months after surgery in 1:38. It was 16 minutes slower than the one I did 8 months before surgery but I am also 20 pounds heavier. My goal is to go sub 1:30 before the end of the year which I fully expect to achieve.
Sign up for cardiac rehab sessions as soon as you can after the op and be strict with your recovery. You can do this! Feel free to DM me if there is anything I can do to help or if you just want to chat to someone who has been through it.
cldlhd
Well-known member
My guess is that after you recover you'll probably be better fitness-wise than you are now. Getting around and moving is a key part of recovery, but I wouldn't push the training part harder than you should until you're fully ready. Totally like what I need in my life. You never know if you will be as good as you were, say 5 years ago, and if not how much is due to this or just natural aging. But the reality is if you're told you need surgery. The only other option is a bad one so you just make the best of it. I'm not an expert but I assume you're you declining aerobically the last 12 months is due to the valve so 12 months from now you probably will be better. Aerobically.
ChrisW
Member
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I’m not in the UK, and I did not have an aortic aneurysm that needed to be repaired, so my experience is obviously a little different than yours will be. With that being said, I am 50 years old and this past Wednesday marks one month since my surgery to replace a bicuspid aortic valve, and 3 weeks since I had a permanent pacemaker implanted. I can tell you that immediately pre-surgery I was genuinely terrified and if I’m totally honest, I was pretty convinced that I wouldn’t leave the hospital. Even during my stay in the hospital which ended up being close to two weeks, I was still relatively scared that my recovery would go sideways. However, I’ve been home for 2 1/2 weeks, and I am now walking at least a mile every day and just started a cardiac rehab program yesterday afternoon. Every day gets a little bit better, and the best advice I can give is this… You just need to focus on “what’s next“ to get back to full health. Keep that attitude, and you will do just fine.
Superman
Well-known member
Some of you jerks are being very rude. I always used my heart as my excuse for sucking at distance running. You’re taking that away from me. Now I need a new excuse. Don’t know where to start. I’ve been committed to that excuse for years.
pellicle
Professional Dingbat, Guru and Merkintologist
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pellicle
Professional Dingbat, Guru and Merkintologist
I've been told by many that distance running is bad for the knees, feet and ankles...unless you run barefoot on dirt
Every day might not be better than the one before -- it can be two steps forward, one step back. Don't beat yourself up or try to overdo if you have an off day. Just play the long game.
TomD
Well-known member
I had mechanical valve and complete aorta replacement 14 years ago and I am doing just great. I would not wait 2 to 3 months. if possible I would get it done asap. My surgeon told me that my aorta was paperthin and it was very fortunate that I got the operation four days after meeting with him and having a bunch of tests.
Dodgy Ticker
Well-known member
Hey Rich
No words of wisdom, mate.
Just a general statement of intent that I have found has kept me alive and almost healthy (I have a bunch of other issues to contend with....).
I have found that keeping two things close to you will help you overcome almost everything:
1. A positive state of mind. However bad you may feel the situation, someone else is definitely having it worse - and getting through it. Just think of those poor sods in Ukraine, for example. I know its not the same diagnosis, but honestly between choosing their fate and yours - I defo think yours is the winner. And
2. Keep those nearest and dearest close to you. When I had my emergency open heart surgery and 2 valves replaced, it was those that cared who pulled me through. I had mates from 30 years ago in school calling me out of the blue to wish me well! I was full of tears of joy that someone cared, and in truth - that really DOES make a difference.
I wish you luck and good fortune. And despite all you hear about the NHS, when it comes to cardio work, they're pretty damned good, so no worries.
Cheers and let us know how you do.
cldlhd
Well-known member
I always thought that's why they invented wheels....I never needed an excuse...
cldlhd
Well-known member
Yeah it makes you think when they tell you that doesn't it? I was told that what the size of my aneurysm I could wait anywhere from 5 to 10 years for surgery. After the surgery my surgeon informed me that there were some very thin areas. So I guess it was good that I didn't wait. Having said that has most of us know the old "I would just get it over with" is advice that is easier to give than take but I guess that's the case with most advice.
Thanks to everyone who has been responding to my post, really appreciated. Your individual and collective advice is so helpful right now. Since being told this week the news that surgery not the 5/10 yrs ahead but 2/3 mnts, I seem to be convincing myself that I have more pronounced symptoms (light headed being main one). Sure this is just a reaction to the news and me being anxious. Hope that is the case anyway.
