British Heart Foundation
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Aortic Stenosis

Id like some advice on my diagnosis of 3 years ago of mild aortic stenosis. Im afraid I buried my head in the sand and didn't look into it too much. My GP diagnosed this from an echocardiogram and said I didn't need to think about it for about 20 years, that eventually I would probably need a valve replacement. I just thought ok I'll worry about that later.

I had another echo last week and Im waiting for the results. So of course I read up some more and am a bit worried about what I have found out. Is it possible from what Im reading that it could have changed from mild to severe in only 3 years? It would appear so. I was never referred to a cardiologist and maybe I should have been? Should I insist on that now?

What are the chances it actually hasn't progressed much beyond mild in 3 years. What do I need to ask, should I have it tested every year? Should I be following a different lifestyle?

Im only 59 and apparently thats considered quite young for this so does that mean it comes from a congenital or other source.

Look forward to similar stories or advice please. I don't want to go to my next appointment with the results of this second echo without knowing more about it and what to ask.

Basically Im a bit scared Im going to drop down dead especially as Ive read that if youre at severe stage, only 50% of people survive 2 years......what if it changed to severe two years ago?

Many thanks

S

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Hi S, you don't say if you have any symptoms from your valve problem, my mitral valve has severe regurgitation which means I am very breathless, exhausted, with swollen legs and other symptoms.

I had a MV repair in 2007 and I am now on the waiting list for a MV replacement as my repair has failed.

I would try not to overthink things too much as I am sure your GP will refer you to a cardiologist if your recent echo shows any worsening of the stenosis.

This is a great forum for help and support, hope your results are good when you see your GP.

Annette

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I was diagnosed with a heart murmur when I was 16, which was aortic regurgitation. I was told the same as you that eventually I would need a valve replacement. That day eventually came when I was 52. I had a tissue valve but unfortunately that one now needs replacing so this time I'm having a mechanical one. I had my heart checked every year, although missed out a few when I moved from Kent to Lincoln, but eventually re-started when my doctor heard my murmur!

If the results show that it has got worse it doesn't necessarily mean you need an operation yet. They may decide to start checking it on a regular basis.

Do you have any symptoms? The only one I get is breathlessness, but they also check whether you get swollen ankles, palpitations etc.

I know it's easy to say don't worry, but once you've got the results you'll at least know where you are. If you think of any questions you need to ask, write them down, otherwise you'll forget them. Things like what should I look out for, how much exercise, likely timescale etc.

There are plenty of us on here who have been through heart surgery who can help with any questions you have if you have to go down that road.

Keep us posted.

Wendy

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Thank you. I was told I had a murmur when I was about 10; I had suspected rheumatic fever but it was never confirmed. I was told it was benign and I have never been to see anyone about it/no checks etc. I was given an echocardiogram 3 years ago because my GP heard the murmur and said there was not record of it on my medical notes even though I said I knew. However that was a good thing because I would never known about the stenosis either and it may have gone on with no treatment. Its just a bit of a shock to then be told you might need open heart surgery and you don't even feel ill.

I don't seem to have any symptoms other than I had asthma type wheezing and got a bit breathless but it seemed to be seasonal. I have now been diagnosed with asthma and the treatment for that definitely seems to have made a difference.

I have a vision that the results of this second echo say I have not stenosis and they got it all wrong! The chances are Im kidding myself. Sometimes my ankles and feet are a bit swollen but that seems to be to do with my thyroid medication and when Ive got the right dose, they go back to normal.

Thank you for your advice so far.

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Hi Numberone1

I had surgery 12wks ago to replace my aorta value because of stenosis. I had no idea I had a heart problem, apparently i would of had it from birth and 5 days before my 57th Birthday it reaches its sell by date lol. looking back there where some signs but I just put it down to being unfit, feeling tried which I put down to my under active thyroid, getting a little breathless going up the stairs or when walking far. Then I passed out when shopping again put it down to it being hot and dehydration, then a week later after going up a small flight of stairs I felt really breathless, hot and dizzy , made it too the car and passed out big time,fortunately my Mom was with me and she couldn’t find a pulse, I’d gone very grey and clammy 2 nurses came laid me out flat and where just going to start CPR when I took a large gasp of air and started to come round, I was out for a good 6-8 Mins.

Hospital tests showed a very lound heart murmur and was diagnosed with chronic Aorta Stenosis , I wasn’t allowed home and kept in hospital for 2wks than transferred to Southampton had the op and 5days later went home.

I’m well on the mend and start rehab on Wednesday. If you don’t have any symptoms of breathlessness, or fainting or fatigued you may still have mild Stenosis , if it had been chronic they would of informed you straight away like they did for me. It is a lot to take in and very daunting, but it’s not as fearful as you imagine. I had a biological porcine value which should last me 10-15yrs then it’s replaced by angiogram and as the surgeons said by then the technology would have advanced even further, I was glad as I didn’t fancy a mechanical one and a life on warfarin.

This is a great site for help and advise, everyone has had some form of heart problems and surgery and are very supportive . So good luck and let’s us know the outcome, best wishes Kaz ❤️💕❣️

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Wish my tissue valve had lasted that long, 6 years is a lot less than the 15 years they told me when I had my first AVR, that's why I'm having a mechanical problem be this time, despite not fancying the idea of being on warfarin for the rest of my life. With having my spleen removed last year it would be too risky to keep having heart ops, especially as I'm only 59.

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Hi Fredders

I am hoping my little piggy value wants to stay at home for the 10 to 15 yrs

They said, at the time I didn’t even think about it running out before its use by date. So fingers crossed, I’ve got echocardiogram on the 6th Nov and I start rehab on the 1st Nov. Wishing you all the best Fredders ❤️💕❣️

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Hi my aortic stenosis was diagnosed unexectdly 5 years ago as mild to moderate and then discovered i was born with the faulty valve and its hereditary. I am now under Papworth and have been having scans once a year they call this watchful waiting . Unfortunately mine has now gone to severe and iv been told it won't last 2 years. Having said that I have had the same symptoms for well over 10 years so they are slightly baffled by that but they have decided I now need the valve replacing, I'm only 53 so it's all such a shock to me it's got worse very quickly which is quite unusual so don't worry too much as it's not normal to progress so quickly. Even though mine's at a very severe stage they have still not given me a date for the op and at first I panicked constantly but now iv thought to myself if it was that serious they wouldn't let me carry on with my life as normal and iv not been told to change anything! As I said iv suffered with bad symptoms for many years so I wonder if that 2 year diagnosis is actually always correct. I wish you luck and chatting on here helps u realise your not alone Best wishes

Caroline x

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Thank you for your comments so far. I think thats the worst part, feeling healthy and suddenely finding you need heart surgery! I'm desperate for my result bcos I feel a bit fragile about it, what can I do, what can't I do. I have holidays booked, I have Xmas and first grandchild coming up. I don't want to detract from my Daughters exciting time. I went to a Ball last night (ironically for the British Heart Foundation) and decided not to drink but I did dance albeit felt a bit breathless.

When people got to severe how long did you have to wait for the op?

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There’s no magic number on how long you wait, but if and when you start passing out it’s seen as chronic, so if you ever pass out get to your GP ASAP

Until then “Keep calm and carry on” and enjoy looking forward to meeting your grandchild, xmas . Take care best wishes Kax❣️❤️

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Do I have to pass out before they do anything? That's a bit scary.

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Hi S, your case sounds a little like mine. I was diagnosed with mild aortic stenosis aged 40 and told that I had been born with it (typically two of the three valve flaps had fused together, which had caused the tightening) and that as it hadn't caused me any symptoms so far, it probably wouldn't cause any problems until I got into my 80s, so I pretty much forgot about it.

I moved house and changed GPs and nothing was ever said. On a routine visit to my GP aged 56, I mentioned that I had been having a few palpitations and was that OK given my existing heart condition. It turned out my GP wasn't even aware of it! The only other symptoms that I had were getting tired and needing an earlier bedtime and finding long walks making me breathless, but I put this down to advancing age.

He immediately sent me to Papworth for routine tests and I was shocked to be told that it had progressed to severe and that I would need an operation to replace the valve within the next few months. This was done in March 2015 when I was 57, together with an aortic arch repair because the stenosis had put pressure on my aorta making it balloon out, and I consider myself extremely lucky that it was found and dealt with so quickly by our wonderful NHS. I opted for a mechanical valve, but you will be given a choice.

I can't say how long it took to go from mild to severe because I wasn't checked in between, so I always tell anyone who has been diagnosed to mention it frequently to their GP so it doesn't get overlooked. I'd suggest you ask how often you should be checked and how long it might be until it reaches the stage when you need an op. so you can plan.

Please don't be frightened of the valve replacement operation, obviously it's not pleasant, but it is such a routine op that I was out of hospital within a week and back at work two months later.

Good luck.

Gill

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Hi there,

Am really shocked yoy dont have a cardiologist for yearly checks and echo

I think i would 100% would ask to be under one as its not your gps decision on this.

I would not worry too much unless you are having some symptons

As for the question about it changing from mild to severe in 3 years...well my mitral valve was moderate nearly 3 years and said they would not need to replace it for a long time....but that changed in 2 years.i went to severe mitral stenosis..so things change but you do get symptons.

Good luck to you

Jenny

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I think I may be being naive to think I'll be having my op within the 18 weeks target. I was diagnosed with Aortic Stenosis in May. I met the surgeon in mid August and was hoping to have the op by Christmas. I don't think my AS is severe. I only suffer with tiredness and lack of stamina. I naively thought the surgeon would want to keep within the target! Hey Ho!

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From what I understand, they only operate if it's severe as with symptoms? What is your diagnosis and how long have you had it from the outset?

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I've only been diagnosed with AS, which was picked up in May by the GP and confirmed by angiogram in June. Apart from tiredness and lack of stamina I'm not bad. But as far as I know I'm on the waiting list and assumed I would slowly be progressing up the list. Obviously I appreciate that there are many emergencies which will be ahead of me, but my Dr suggested that it's good that it has been detected early and therefore no damage has been done to my heart. The first cardiologist thought I'd be (her words) 'done and dusted' by the end of the summer! So who knows. I'm not holding my breath😕

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I was diagnosed with mild as 3 years ago and from what I've since read, they do what is called watchful waiting until it gets severe and with symptoms. Maybe yours was only found at that advanced stage. I hope you hear something soon. Good luck.

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