Any advice would be helpful - British Heart Fou...

British Heart Foundation

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Any advice would be helpful

Darrin21- profile image
14 Replies

Hi, I’m new here, I’ve got aortic stenosis and have no symptoms, I forget I’ve got this condition because I don’t feel any different since being diagnosed 5 years ago. I’m wondering what’s coming and when things will change. I get a yearly eco.

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Darrin21- profile image
Darrin21-
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14 Replies

This might help. Is it definitely aortic stenosis and not sclerosis which is age related? It’s important that your dentist knows and that you keep your gums in tip top shape. There is a condition called subacute bacterial endocarditis which you might want to look up.

mayoclinic.org/diseases-con...

Darrin21- profile image
Darrin21- in reply to

Thanks for your reply but I’m told it is aortic stenosis, I’ll check out the other condition you mentioned.

080311 profile image
080311

Hello Darrin21-

Welcome to the forum, you ask when things are likely to change, will the short answer is no one knows there is no time given. You are having a yearly echocardiogram and are not experiencing any symptoms. ( breathlessness or swollen ankles) So this with fingers crossed continue for many years.

As for what is coming, you might have to have your Aortic valve replaced, had mine replaced 4 years ago, had it by open heart surgery sounds terrible but it’s really ok. The thought is so much worse than the reality. When and if you have to have it done post and someone will talk you through the ins and outs.

Hoping you continue to have good echocardiograms, and no need for surgery.

Best wishes Pauline

Darrin21- profile image
Darrin21- in reply to 080311

Thanks you for your reply an yes if and when the time comes I’ll put a post on.

TMeditation profile image
TMeditation

My only symptoms were that I could detect my heart beat in my head when I was going off to sleep. My doctor discovered I had a heart murmur and from then it was aortic stenosis and a valve replacement. I could have easily ignored my symptoms so I’m rather glad I didn’t now!😄 Initially my cardiologist thought it was mild but following other tests it was decided to replace the valve sooner rather than later. As someone else has already said here, open heart isn’t anywhere near as scary as it sounds. I don’t know where you are based but the care is exceptional in the U.K. Although with mild stenosis I was told it could take years before surgery was needed. It sounds like you’re being well monitored and it’s just something that needs to be kept an eye on. Sounds like you’re on it! Good luck and keep well. Sue 🙏

Darrin21- profile image
Darrin21- in reply to TMeditation

Thank you for very much for your reply.

nursenancy53 profile image
nursenancy53

Hi - my journey sounds similar to yours - I was diagnosed with a murmer in December 2015 - prior to the diagnosis I had no symptoms but it was discovered because I had a chest infection. Echo in 2016 and 2017 showed no changes to the stenosis but March 2018 showed big changes. I had my aortic valve replaced in November 2019, so just under 4 years from diagnosis to surgery. Good luck x

Darrin21- profile image
Darrin21- in reply to nursenancy53

Thank you for your reply. How was the surgery and recovery?

nursenancy53 profile image
nursenancy53

I personally found it bearable but emotionally very difficult - I seemed to do nothing but cry for weeks afterwards! Main thing is I'm still here! The dread is worse than the reality

Darrin21- profile image
Darrin21- in reply to nursenancy53

Thanks for this and well done to you.

Astronomyrules profile image
Astronomyrules

Hi,

Just a few things to add to other replies. I was diagnosed with mild Aortic Stenosis 19 years ago. Last December I had my valve replaced. Everyone will travel different time along the path. My replacement was not by openheart surgery, which I had for a bypass 17 years ago, but by a TAVI. This can be via the groin with only one day in hospital, not an option for me, or with entry between the ribs. Somewhat more invasive, but counts as keyhole and recovery is much faster than Open Heart. Which type of op you have depends on many things including age and the type of replacement valve. I suspect that the TAVI will become more common in the future whilst at present open heart is the gold standard.

Darrin21- profile image
Darrin21- in reply to Astronomyrules

Thanks for your reply. I think I’ve got a lot of thinking and reading to do. I want to understand the best surgery so if and when the time comes I’ve an idea what might be best.

Darrin21- profile image
Darrin21- in reply to Darrin21-

Hi can I ask you a question, before your replacement valve and while you didn’t have any symptoms, where you able to drive?

Astronomyrules profile image
Astronomyrules

Good luck with your journey. Meanwhile eat well, sleep well and exercise well.

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