BHF advice please? Or anyone else who knows

[Numberone1]

I’m fairly positive about my aortic valve diagnosis and future operation but I have down days and down nights and currently having one of those.

I just keep worrying about this dangerous 2 year guideline for when symptoms start. My measurements appear to indicate moderate stenosis and I’m tokd that once you get symptoms at Severe stage, then that is when the 2 years starts.

I have no symptoms as such other than shortness of breath. But I’ve had shortness of breath for 3 years. Nothing else. No pain, no fainting. However I did used to have problems breathing when laying down about 2 years ago and I’ve got over that.

So I feel very well and I use an asthma pump preventer which has improved my shortness of breath a lot.

Can you have shortness of breath without havingvsevere stenosis and yet that 2 year mortality rate not start yet?

Sorry if I’m sounding confused. I was diagnosed severe last year but it was a mistake. Valve size and velocity changed with this recent measurement leading to moderate diagnosis and I know it can’t improve.

[IanGordon]

Number one hi. Sorry to hear you're struggling at the moment. I have been on the sliding scale of aortic stenosis so can empathise. Can I suggest you try and focus on the certainties such as your physical valve performance which tells you are not severely stenotic and the fact that the only real symptoms currently are breathlessness so no dizzyness or blackouts. To be honest, I reached the stage that I felt that once I progressed to 'severe'then I was eligible for a new valve and restored life expectancy. Don't fixate on the abstract 2 year clicking clock - it's totally irrelevant unless you opt out of any further treatment once severely stenotic. You have a diagnosis with a positive destination so rejoice in the renewal that AVR should give you. Focus on the certainties and remember the glass is actually half full!

[Numberone1 in reply to IanGordon]

I know what you're saying and for that reason I am grateful. Im mostly a glass half full its just these weird moments I get. I guess what im worried about is that if Ive been breathless for over 3 years, what happens about the 2 year mortality rate or has that point not started yet. How far am I down that road and should I be insisting on treatment earlier. Do you get my worries?

[IanGordon in reply to Numberone1]

We all worry - just sample some of the posts on this forum. The way I understand it is that only once the stenosis reaches the measurements that denote severe are the risks of inaction greater than surgery and it is at this point that life expectancy without surgery is somewhere around the 2 year mark. Not a precise ticking clock but a statistical reality. Surgery has a risk of around 2% maybe slightly more. But you cannot let that define who you are and how you feel as life will be grim and it will in all probability be detrimental to your health. So if there is a clock, it's the clock of life and may it continue to tick for as long as possible!