Aortic stenosis

[Zena2121]

Hi

I have been diagnosed with aortic stenosis. Can anyone who has this tell me how they deal with it and let me know how it affects them please. Thanks

[Sparkies]

Hi Zena2121, I have moderate aortic stenosis from a bilateral valve. Diagnosed in 2020 after finding myself getting out of breath at Bootcamp. It affects me by making me short of breath when I do a cardio work out so I have to start slow and warm up well then go at a pace which suits me. It’s frustrating as the rest of my body and my head wants to go faster but I can’t. So I do what I can within the limitations. I also find that walking uphill makes me breathless and I have to stop, catch my breath and start again. I have an annual echocardiogram to check on my valve and an update of the results from my consultant. So whilst I know I will need an operation in the future I just try my best to exercise and keep my heart fit so I will recovery well after the op. I went into a bit of a meltdown when first diagnosed and told about the op as I’ve always exercised and am fit so it was quite a shock. But I am lucky that there is an operation and wonderful doctors that can be done to repair my valve and hopefully make me feel much better. I talked it all through with my wonderful husband, family and close friends and it felt a lot better sharing my concerns. Obviously it still worries me but I’m now of the mindset to get on with life, do all I can to keep fit and healthy and be grateful for the op when the time comes. …albeit I’m sure I’ll still have a panic before but that’s allowed 😊Hope that helps.

[Heartattackvictim in reply to Sparkies]

This from Sparkies just about mirrors my experiences Zena2121

[Zena2121 in reply to Heartattackvictim]

Thank you

[Zena2121 in reply to Sparkies]

Thank you Sparkles for your reply. I feel a bit better reading what you said and like you say there is an operation that can be done when the time comes which is reassuring.😊

[Blackcatsooty]

Dear Zena

Aortic stenosis made me fatigued.

At first mild stenosis was hardly noticeable. But I did edge my diet and I did start daily exercises.

After four years it became moderate stenosis just a bit more fatigue.

Then it rather rapidly became severe stenosis over a period of six months. Fatigue then extreme, I just could not function for more than a couple of hours each day.

Symptoms were then exactly like those who have long covid and those who have post stroke fatigue.

So in April 2020 I went in to a cardiac ward to have an aortic valve replacement. Nothing like any other hospital admission. So well organized. It is a big op, but the brilliant surgeons do this each working day. Convalescence is likely to be 3 to 6 months. Then you will be amazingly well.

By far the worst bit is waiting for the op.

At your current stage you will probably have an annual painless scan to monitor progress. Immediately prior to the op you will have three outpatient tests. Ideally done as an inpatient.

I actually have fond memories of the operation and fantastic care. If only the NHS could work like this for everything

Lots of us on this site had AVR and will share whatever you want to know.

Very best wishes

Sooty

[road2ruin]

Hi, This is something that cam as a surprise to me when I was 49. I was born with a bicuspid valve, which led to Aortic stenosis. I started noticing I was getting out of breath when cycling up hills. I had no choice but to have a valve replacement, something that could be coming your way latter in life. I had a 4 month wait for the op, because I was a severe stenosis case, and all i did was manage my exercise. I walked, did gardening and just general chores, but nothing too severe. I didn't suffer much angina from that, but was still out of breath sometimes.

Good luck

Peter

[Zena2121 in reply to road2ruin]

Thank you for your reply

[mtse]

I was diagnosed last Nov after getting covid and having to go to hospital. The regime for me was review every 6 months as I was moderate to servere. During the ecocatiogram they measure the backwash of blood which looks like a jet and rate the seriousness on that. Once it goes to 4.5 and above then it's considered servere and if you have symptoms then they suggest valve replacement. If you are 55 or younger then they suggest getting a mechanical valve. if you are over 65 then you can get a tissue value. Mechanical means open heart surgery and tissue could be done using TAVi but depends if you need bypasses. In between its either. Tissue valve lasts 10 years and mechanical is supposed to last a lifetime. Michanical you meed to be on blood thinners all your life. Tissue you have to take asprin rest of like. Depending on the condition of your vascular system and heart you may need to be on beta blockers to slow down heart beat and control bp and blood pressure meds. Also, may need to take colesteral tablets.

[Rhinos67]

Hi Zena2121

I was diagnosed with Severe Aortic Stenosis in October last year. I was totally unaware that I had a bicuspid aortic valve and had been running every day for a couple of years. It was only when I fainted when out for a run that I went to GP and tests revealed the issue.

I had AVR in April and had to have a pacemaker fitted 12 days later as I went into heart block. I'm now recovering and going on a walk every day.

I will be seeing my surgeon for the list surgery check up on Monday and hopefully he will be happy with my progress.

I joined a Facebook group aimed at people with Aortic conditions when I was diagnosed and it was so reassuring to be able to speak to people who had the same issues and had come out the other side.

If you would like details of the group please let me know 🙂

Joanne

[Zena2121 in reply to Rhinos67]

Thank you Joanne for replying. I hope all goes well with your surgeon. I saw my doctor yesterday to explain the condition and feel a bit more piece of mind now.

[DMHH in reply to Rhinos67]

Hi Joanne - could you pass on the details of the Facebook group? Many thanks

[Rhinos67 in reply to DMHH]

Hi there its UK Aortic and Heart defects

Green logo of Facebook group

[DMHH in reply to Rhinos67]

Thank you

[Vinn27]

Hi Joanne, thanks for sharing. I hope the checkup goes well! Would you be able to share the details of the FB group? Thanks!

[Rhinos67 in reply to Vinn27]

I'm so sorry, I don't think I sent you the info.It UK Aortic and Heart defects pre and post surgery

[DMHH]

I’ve been reading your posts from your diagnosis and feel just as you did then. I’m almost on the verge of a nervous breakdown and worried it’s pushing up my blood pressure!

How long was it before you got some equilibrium back after your diagnosis and what would you say helped the most? Nothing seems to be helping me at the moment even a small dose of Diazepam!

Thank you