aortic stenosis

[Sylviaann]

I have recently Been diagnosed with aortic valve stenosis. Described as mild but symptoms are quite life limiting. Very fatigued and finding normal daily activities very difficult. Have others found this to be the case ?

[Blackcatsooty]

Classic symptoms for aortic stenosis. However, I did not get much tiredness until it became more severe stenosis.

When the severity is high you may need a new valve. At our age we can have the excellent Synthetic valves without out the need for mechanical valves. Mine has been trouble free for two years and I expect it will outlive me. I am 74.

I have noted the symptoms are identical to post stroke fatigue and to long covid.

If you do need the replacement valve, you will find the op is fantastic. Nothing like other hospital operations, just brilliant staff in excellent premises.

The main downside is waiting for the op.

Do let us know how you progress.

Black cat Sooty.

[Eva58]

Hi there. I have too, mine is severe so now need valve replacing. I only had symptoms when walking uphill, problem was picked during bld pressure check. I have recently joined this forum which I already find helpful.

[Rhinos67]

Hi there.

I was diagnosed with the same last year and had surgery to replace the valve, root and then a pacemaker in April.

Now recovering, but joined a Facebook group specifically aimed at aortic conditions and they helped me through the most stressful period of my life.

It's UK Aortic defects pre and post surgery.

Good Luck

Joanne

😁

[Sylviaann in reply to Rhinos67]

So pleased you have received treatment which is hopefully helping you get better. I’m just confused that I am told my condition is mild when my symptoms seem so severe.

[Rhinos67 in reply to Sylviaann]

That does seem odd. I was totally unaware of my condition... bicuspid valve which was congenital and was classed as severe when diagnosed.I was a runner and was finding it harder to breath, but apart from that nothing really. Consultant said that I'd possibly normalised all the other symptoms as it would have crept up in me over the years .

What tests did they do to diagnose you and what is the next step?

[Sylviaann in reply to Rhinos67]

Echocardiogram and they are going to repeat in 6 months.

[Rhinos67 in reply to Sylviaann]

If you feel that symptoms are getting worse then contact your consultant. My condition definitely worsened between May to August of last year when I sought help

[Sylviaann in reply to Rhinos67]

Thank you. Yes I will. I will contact tomorrow because this last week has definitely seen a lot of change for the worst. Thank you.

[Rhinos67 in reply to Sylviaann]

❤️

[Sylviaann in reply to Rhinos67]

🥰

[Hidden in reply to Sylviaann]

Rhinos67 is quite right. I was already severe and on the waiting list when my symptoms got very bad. Mentioned to GP who phoned hospital and they got me in early. Any deterioration should not be ignored. Tell your team.

[Cyprus12 in reply to Sylviaann]

That's great. They should be able to control that closely, but please pester if things get too bad. Only you know your own body.

[Tindy2]

Hi, I-was diagnosed 2 years ago after a HA . I too was told it was mild and I would be rescanned in 5years. The last 3 months my symptoms have become much worse I get breathless just walking round the house, any kind of activity makes me exhausted and get palpitations and dizzy I went to GP on Thursday who has phoned cardiologist to see they’ll see me or arrange Echo. I became so bad on Saturday that I almost blacked out . My husband phoned an ambulance. By the time the ambulance came, over an hour later I was now breathing normally but very tired. An ECG was normal ( don’t know if AS shows on ECG .) After waiting 5 hours in A&E (sitting down ) I was told everything was fine no HA . I felt they thought it was a panic attack!! . Could this be a worsening of AS ? .

[Cyprus12 in reply to Tindy2]

Tindy, mine deteriorated vey quickly, although I had breathing issues all my life, I was still very sporty and this can contribute to quicker deterioration, according to my consultant. Please don't suffer, keep reporting stuff, keep a log and monitor any differences.

[Sylviaann in reply to Tindy2]

Have got a telephone appointment with my GP this afternoon. Hopefully will get some answers.

[Cyprus12]

Hi SylviaannI was diagnosed with AS and they were going to check me every 2 years to see how quickly it was deteriorating. Within 12 months I had a heart attack and then an AVR.

It was the best thing I ever did. I was diagnosed with asthma at 17, but it was my heart. Never used an inhaler since my op.

My only advice is to keep a close eye on your breathing, any chest pain or debilitating issues and keep on to your GP. It's a matter of fight for youself I'm afraid! I am lucky to be here.

Get an angina spray and keep physical activity at a low. I could only walk on the flat toward the end. Fit as a fiddle now ❤️❤️

[Sylviaann in reply to Cyprus12]

So pleased things are so good for you. I do have a GTN spray. I have arranged for a telephone chat with my GP for this afternoon, so fingers crossed. I’ve just had a shower, nearly killed me!!! So breathless and exhausted now. Thank you for your reply.

[Sylviaann in reply to Cyprus12]

So after speaking with my GP he sent an ambulance and I was taken to A&E. on examination they found I had an infection caused by a stone in my common bile duct. Two days later I had surgery to remove this. Home now and doing well. Nothing to do with my AS at all.

[Cyprus12]

Bless you! It is frightening, especially when you get diagnosed and had no idea. I hope you managed to dodge the dreaded Covid? That won't help. I really hope you get an appointment for your surgery. If you need any advice or concerns, please don't hesitate to contact me. I never found any forums when I had mine and felt a little isolated and after the past few years, it must be harder on people. TJ

[Zena2121]

Hi I have just read your post and was diagnosed with mild aortic stenosis a couple of months ago. I am a large lady and after being diagnosed with this am changing my eating habits to lose weight. I was devastated being told this diagnosis and am always worrying about it as I don't know how fast the condition can get worse. I also have osteoarthritis in my left knee so losing the weight will help my heart and knee. I just wanted to let you know that you are not alone with this condition and if you ever want to chat just message me. Take care

[Sylviaann in reply to Zena2121]

Thank you.

[Sylviaann in reply to Zena2121]

Thank you for your reply. Yes I was devastated as well. I also have osteoarthritis in my spine. It worries me regarding how quickly it may progress but the cardiologist says it differs with everyone so he cannot say. It would be nice to have an idea of what will happen. It’s quite frightening really isn’t it. ? Let’s hope and pray we do well and the progress is slow x

[Zena2121]

Hi yes I know it is worrying and what made mine even more scary is the doctor from my surgery sent me a text to tell me about my aortic stenosis and a link to look it up they couldn't be bothered to ring me and explain the condition. I did get to see a doctor face to face and she told me the same that they cannot say how quickly it will progress but let's hope it is very very slow. It's not knowing what the progression will be like but let's enjoy life and try not to worry too much. I have osteoarthritis in my knee and that is bad enough on a daily basis. Let's stay positive. x

[Sylviaann in reply to Zena2121]

Oh my god that’s awful. At least your Dr could have given you the time to talk about it. At least the cardiologist was there talking to me in person. However to be honest I was so shocked I didn’t get to ask to many questions. They are apparently gonna check me with another echocardiogram in the next few months. I’ll make sure I have some questions written down so I don’t forget what I want to ask. I guess my main question is how will I know that things are getting worse, what symptoms to expect and what should I do about it. X

[Zena2121]

Yes definitely write your questions down because it is so over whelming that you forget what to ask. They haven't told me when they will check me again but like you say it's knowing when you are getting worse and what the symptoms are. I have had an ECG done and a heart scan which is how they diagnosed it. x

[Sylviaann in reply to Zena2121]

What was the reason they checked you ? I had a suspected heart attack so that’s why they did my echocardiogram. What were your symptoms x

[Zena2121]

I went to doctor's about my legs being a bit swollen and when she examined me she said I had a heart murmur so she sent me for an ECG and heart scan. The heart scan picked up the stenosis. When I saw her face to face I had questions for her which she answered. I am not on any medication and have no further follow up appointments so I don't think I am being monitored with the condition x

[Sylviaann in reply to Zena2121]

So has the swollen legs resolved ? Or are you still suffering with them. I was prescribed water tablets for my swollen legs. I think you ought to request an echocardiogram regularly if you have not been already offered it, for your peace of mind x

[Zena2121]

No legs have not been resolved and yes your right i need to go back and ask for an ECG regularly as I have been told about having this but they don't seem bothered about checking me or do any follow ups x

[Sylviaann in reply to Zena2121]

Well if I were you I would certainly push for follow ups. You need to know how things are going that’s for sure x

[Zena2121]

Definitely as doctors don't care and you have to look after yourself because they won't x

[Sylviaann in reply to Zena2121]

I’ve just had results of blood tests and apparently my kidneys are not working properly. So it’s one thing after another!!!! X

[Zena2121 in reply to Sylviaann]

Sorry to hear that what's wrong and what are they going to do x

[Sylviaann in reply to Zena2121]

I’ve been taking water tablets to treat the swollen legs and feet. My GP thinks it’s probably that causing the kidney problem. So I have to stop taking them and see what happens. Then another blood test in 3 weeks to check the function again. Fingers crossed x

[Zena2121 in reply to Sylviaann]

Yes fingers crossed, like you say it's one thing after another, it's constant worrying x