Post Echo scan and consultant follow up

[mattmaw1]

Hi all

Ive recently been moved to 'severe' stenosis with severe regurgitation with my BAV. I went to see the cardiologist today and he said its likely I would have the operation in the next 2 years. Its kind of taken me back as im pretty much a symptomatic and thought i might still have years before the operation.

Ive got another scan in 6 months and ive been told i will be in to discuss surgery at some point. I now need to think about mechanical or a tissue valve. Something is making me swing towards a tissue valve due to the blood thinners you have to take but it will likely mean i will need another one in 15 years maybe. Anyone got any advice?

I also keep looking up life expectancy post this operations and cant work out why your life expectancy drops and what its linked to. Technically you are getting a new valve so if you dont have other heart disease, why would your life expectancy decrease? this is scaring me to death as im 36 at the moment

I should look at the positive side and think that at least something can be done about this. there are tonnes of conditions out there where people get told there's nothing that can be done. I should be grateful of that!

Anyway, any help or advice would be greatly appreciated

Thank you

Matt

[Tos92]

I’m sorry I can’t help but I just wanted to send you my best wishes. Things often sound a lot worse than what we think. I hope others with experience of this will come by to help alleviate some of your worries.

Tos x

[Blackcatsooty]

As soon as I reached “severe” I was told I needed the replacement valve without delay. I am twice your age so I went for tissue. The valves improve continually so it’s likely to last well over 15years. There are also valves that can accept a TAVi if needed later.

I was stenosis only, no other issues.

It is just an amazing op. Ok, need many weeks rehab but then you get your life back. So please try to reduce your fear, the surgeons are plain and simply fabulous. The staff are the cream of the crop.

Look forward to your op. It’s the greatest blessing. And better than 99% successful.

Sooty

[Rhinos67]

Hi mattmaw1

Please don't consult Google. I'm guessing that's what you've already done though, as life expectancy jumps out at me and thats what I became fixated on when I was diagnosed.

It is such a shock when you think that you are fit and well and are told that you need OHS.

I became the proud owner of a mechanical valve in April 22 with a bonus prize of a pacemaker. The latter was just bad luck, nothing to do with the choice of valve by the way.

My surgeon more or less made the choice of valve for me, but if I'd insisted on tissue he wouldn't have said no. And 18 months on.... Warfarin really isn't a problem 😊

The very best advice that I can give you right now is to have a look for UK Aortic and Heart Defects Pre and Post surgery on Facebook. A couple of hundred members who have all either had surgery or are in the same position as you are now.

I got so much reassurance from them.

Joanne

😊

[Yumz199725]

That's alot to take in especially since your not symptomatic, I have bicuspid aortic valve severe aortic regurgitation and moderate stenosis so, soon, could be years my stenosis will be classed as severe. Hope your not waiting too long for your surgery. That's good there keeping an eye on you aswell by giving you a scan in 6 months.

[JessicaRed]

Ive got same aged 67 im seeing a surgeon next week, watch this space lol, the FB group mentioned is amazing please join us

[Hidden]

Hi Matt, I gather that you've read one of my previous posts on the subject, so I won't go over the points I made. First of all, put the life expectancy bit to bed as just plain rubbish, based on not just old data, but, on the simple fact that the majority of valve patients are much older than you.

I'm a casing point, first AVR at 33years old, and now at 62, two further surgeries down the line, and no intention of jacking it in just yet. There's plenty out there like me, trundling along. The way I look at it, once the valve is "fixed" there is nothing to prevent someone living a normal life. Personally, I never looked back and just got on with life without limitations.

Being 36years old gives you a big advantage over someone older, recovery in particular is easier and judging by your earlier post, you appear to be fit, so that in itself will help matters no end. Listen to your peers and by that I mean your age group, as you have much more in common with them than someone of my age group now.

The biggie will always be valve type, all I would say is look into the pros and cons and be open minded, as you'll hopefully have it for some time. Having had both Tissue and Mech valves, I can say without doubt it there is a difference, but, what was the right choice for me, may not be for you.

I wish you well.

[cappachina]

Hi Matt Listen to Rhino 67 and join that group They are brilliant and have so much knowledge I went on before my op and they are a lovely caring bunch They do a Zoom every three weeks and it's nice to talk face to face Iam still on it

[wilsond]

Head over to the BHF site their magazine just out has a big story on valve replacement. Xxx

[JulianDH]

The operation was amazing; the level of medicine and what can be done for us is just incredible. I was severe bicuspid/ stenosis and leaking; all bit of a shock and managed to get myself bounced to front of queue. Surgeon would have gone mechanical but combination of my age 60 and super sporty active made Edwards bioprosthetic an obvious choice. This valve would also facilitate TAVI (catheter valve replacement) if I outlive the useful life of the valve. What I did not realise was how tired I was getting before the operation.....