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Aortic stenosis

4 replies

writingsonthewall · 27/10/2022 21:32

I'm mid 40s and generally healthy. My heart rate has always been pretty slow, resting maybe 40 ish.

My father has a heart condition and has a defibrillator fitted.

I had a night in hospital due to unrelated reason and alarm kept going off as heart rate kept dropping to late 30s. They said I should see the cardiologist after so I did.

Due to this plus family history have had a few tests, echocardiogram and holter monitor which I didn't think had showed anything up.

Just been called for another echo and on the letter it says "Reason for referral: Dx aortic stenosis"

News to me. Googled it, doesn't sound great. Is this an error or have I really been diagnosed with this and nobody has told me?!

OP posts:
Bruciebabyoh · 27/10/2022 22:06

I would contact the consultant secretary on the referral and ask them to explain the diagnosis if you’ve not had an appointment in the interim. Hope all okay.

Gifthunter · 27/10/2022 22:15

Agreed with above. Just wanted to add though not to panic inthe meantime. Aortic stenosis wouldn't cause a low resting heart rate so even if it has been found is an incidental finding. It is very rarely linked with family history and never needs a defibrillator. Most people with aortic stenosis have no symptoms and if you have no symptoms it would be very unusual to need anything done. Symptoms of aortic stenosis would be chest pain or shortness of breath which limits exertion or loss of consciousness. It would be monitored because it can progress and people may develop symptoms in future. This would usually take at least years and often decades. If symptoms develop usually an operation is needed but this has excellent success rates and is highly treatable.

You may not have aortic stenosis of course but just thought I would post to hopefully ease any worries because I know it can be hard to get answers from the NHS!

YankeeDad · 27/10/2022 22:27

I imagine it could also mean they want the echo in order to diagnose whether you have aortic stenosis.

I am not a doctor, but due to a case in the family I happen to know that one possible cause (not the only cause) of aortic stenosis is an inherited condition called hypertrophic cardiomyopathy, for which the only treatment option historically was heart surgery, but for which a new drug has been approved in USA that appears to be highly effective and is much, much less invasive than surgery. It is called mavacamten.

Hopefully you do not have aortic stenosis, but in case you do, I thought the above information would be worthwhile information for you to have, in case the cause is hypertrophic cardiomyopathy. I think it is not available yet in UK but if the drug as effective as it appears to be, then I think it will inevitably become available.
www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)00763-7/fulltext

writingsonthewall · 28/10/2022 15:29

Thanks all that's helpful. There is no secretary on the letter and the number to rearrange appointments goes to an unmanned voicemail so all rather elusive.

Good to know it's not necessarily too bad even if I do have that diagnosis.

I asked my mum what dads heart condition is today and she said "something or other cardiomyopathy" so I guess it might be the one you refer to @YankeeDad

I guess I'll go to the appointment and see.

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