New to the site, I’ve had an aortic web with a leak my entire life ( now 50) but never had limitations placed on me. Started BP tablets and went the gym in April, forgot I wasn’t 25 and managed to make myself black out! Had a couple of odd episodes after so have had full tests.
long story short I’ve had the prognosis that I need a valve replacement and some other work.
In general I’m ok day to day, but I’m being told it could be an issue at any point. I’m struggling getting my head round having the surgery. I’m probably in denial, but wondered if anyone experienced similar or if I’m being an idiot questioning it?!
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TriumphLover
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I don’t think valve surgery is as uncommon as you think. I understand the worry before surgery though and I believe most people can empathise with you on that front.
There are a few members who have had valve replacement surgery so I hope they will come along to share their experiences.
I had an aortic heart valve replacement fourteen years ago as I had been born with a faulty valve. Only problem I have had is that ever since the operation I have suffered from Atrial Fibrillation on and off, for which I have just had a Pacemaker fitted. Yes, I too am on Warfarin for the rest of my life but that is not a problem either. Unfortunately my Warfarin levels have never stabilised and I do have to have tests very frequently. But having said that having had the valve replacement it has given me a normal life and I have absolutely no regrets.
Hi Rosie. Thanks for that, sorry you e had issues. I guess that’s part of my fears but it’s good to hear it’s not the end of the world if it goes that way!
Hi, I had a mechanical aortic valve 4 years ago aged 49. It was to replace a bicuspid valve that I had been born with, also had a patch on my ascending aorta. I hadn't been aware of it and just thought I was unfit when getting left behind by my nephews and brother when hill walking!
I'm now the fittest I've been in years and thankfully my warfarin levels are fairly steady but my valve is a newer one with not so much warfarin required, blood doesn't need to be so runny, so all good.
The waiting & anticipation of the surgery seems to be the worst part, for most the surgery is not as bad as they imagine. I was lucky in that I only had a week to think about it.
I kept asking if they were sure that they hadn't made a mistake when I was told I needed surgery. I was praying they would say yes but knew deep down that they wouldn't.
I'm now 15 months post surgery got a replacement aortic valve and root along with a pacemaker due to total heart block as a result of the surgery.
I'm doing really well and most days totally forget what I've been through in the last couple of years.
If you need to ask anything then please do, or maybe think about joining UK Aortic and Heart Defects Pre and Post surgery Facebook group. I got so much support from them up to and after surgery
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