Bicusped valve diagnosed, Aortic valve replacement scheduled. Will the new valve give a better flow then I have ever had in my lifetime ?

[Highpeaked]

I have been diagnosed with a Bicusped valve, Aortic valve replacement to be scheduled.

Will the new valve give a better flow then I have ever had in my lifetime ? I know it will be better then now but presume some other body limitations for the amount of flow etc

I am mid 50's so just thought if this would have been bicuspid all my life so would it have been a restriction just getting worse?

Expectations of a lot better !

Thanks

[Fredders]

Hi, I was diagnosed with a heart murmur at 16, which was caused by a bicuspid valve. I was monitored every year and it very gradually deteriorated, which is probably why I didn’t really notice any changes. It wasn’t until I was in my 40s that I found myself getting a bit out of breath and tired, but put that down to being a couch potato and being generally unfit, but looking back it was probably my heart causing some of it. I eventually had to have my aortic valve replaced and descending aorta wrapped when I was 52. Initially I did feel better but unfortunately I was one of the few who ended up with my replacement valve leaking and 18months ago I had to have another AVR. This time I had a mechanical valve. As I also ended up with a pacemaker due to heart block, my recovery wasn’t as swift as the first time round, but once they tweaked my pacemaker I have felt much better and am able to get about without getting out of breath and have started exercising again.

If your valve has got to the point where it needs replacing you are probably experiencing symptoms but, like me, hadn’t put it down to your heart. Once you’ve had the op and recovered I expect you will notice a difference.

All the best for your op and let us know if we can help with any questions you have about the op, recovery etc.

Wendy

[Highpeaked in reply to Fredders]

Hi, thanks for the reply back, yes I have been told by someone who had it done sometime ago that it comes on very slowly. It wasn't until it had been replaced had he then realised how much he had slowed down.

So good expectations, its just the journey to get there I am not looking forward to.

John

[IanGordon]

I can vouch for a vast improvement in my exercise tolerance and quality of life following the replacement of my stenotic bi-cusped aortic valve by a bioprosthetic upgrade some 9 months ago. The decline in my health had been gradual over many years and only diagnosed in my 50's.

I remained active but constrained by angina and breathlessness. Ultimately, the cross-sectional area of the valve opening reduced to the level where a life-threatening episode would occur within 2 years.

Since my surgery I have been delighted to revisit the activities that prior to surgery I found difficult and challenging.

Hills are easier ( cycling, walking ) and my tennis sees me quicker and more mobile about the court. Only last week I was snowboarding in the French Alps at 2500+ metres which previously has become problematic due to reduced oxygen levels but now without issues.

So in conclusion, things should be a whole lot better after surgery; the only caveat being that initially, you will feel a hell of a lot worse before you begin to feel the gains. And you do have to 'pay your dues' in the form of a full and regular commitment to post-op cardio rehab.

A further bonus is restored near normal life expectancy providing there are no other conditions affecting your longevity.

Better than ever? Difficult to say. I'm having difficulty in deciding if this is as good as it gets? 12 months , post op , is probably when I revisit this question but so far, life is good.

I would advise you to be as fit as possible when you go for surgery - exercise,diet and ideally, a positive mental attitude will give you resilience and aid your speed of recovery and the realisation of the new you.

Good luck, because that helps too!

[Highpeaked in reply to IanGordon]

Hi Ian, Thanks for the reply back. You sound like you were exactly as I am feeling now. Getting back to a full days walking sounds good and a positive message of what to look forward to. Told fit for surgery and to keep fit a much as possible which I can do. The positive mental attitude comes and goes....

Awaiting for the letter though the door with the date for the AVR. Told will be given 3 week notice. So feel in a bit of a limbo now, wishing it will happen but not at all looking forward to the whole experience. Just want it to be done!

John

[Nic25]

Hey Highpeaked. I had a stenosed bicuspid aortic valve replaced with a tissue Inspiris one just before Christmas. So early days for me in terms of recovery and return to "normality" - only had first cardiac rehab today - but I did notice an immediate difference in heart function. I knew I'd been experiencing symptoms for about six months but it was only when I experienced the difference that I realised I had actually been experiencing symptoms for years but hadn't realised. I'm 50 and have led a pretty sedentary and in truth self-limiting life physically up to now because of the stenosis. But I am hoping I now have an opportunity to get fit or at least fitter than I have ever been. It won't happen overnight and Ian I am sure is right in that I'll need to make a proper commitment to the rehab first and then a life change from there, but I do for the first time in my life (I was diagnosed as a child) feel at least the possibility of "game on" in terms of fitness. At least until it's replacement time! Good luck and if you want to talk about AVR feel free to DM as for me the mental and emotional build-up - the dark nights churning through your mortality - was almost worse than the op itself. Nic

[Highpeaked in reply to Nic25]

Hi Nic, thanks for the reply back. You to sounded the same as me right now, slowly grinding down to a replacement valve. Great to hear of your recovery going well.

Definitely will commit to the rehab program. Its just the bit in between that I don't want to go though but there isn't much choice.

So yes going though the mental and emotional dark nights and days waiting for the letter though the door with the date for the AVR. Told it will be with 3 weeks notice, so count down still to commence...

I am having a mechanical valve, so also worried that the clicking will drive me mad ! Don't like ticking clocks in bedrooms ! Going though many different scenarios of living and sleeping with a ticking chest !

Thanks for the offer of talking. I do know that the more I talk to people about it the more it becomes a reality but still not one that I want to have to go though but not much else to choose. Looking forward to being post, post Op or 12 months after it all !

John

[Nic25 in reply to Highpeaked]

Great to hear John. Wow. Good luck. Making the valve choice is a big deal and big step on the "journey". From what I've read elsewhere on this forum a lot of people once they get used to it actually find the ticking reassuring. So here hoping! Fingers crossed for that letter and that you're soon out the other side. Nic x