Aortic Stenosis I’m so confused!

[Trynagetfitter]

Hi all, so glad I’ve stumbled across this forum!!!.

I was found to have a heart murmur by accident in 2012. I was put under cardiology where they told me I had a bicuspid valve and was seen every 3 years initially. Iwas later signed off because they said it wasn’t progressing but to go back if I noticed anything different.

After a couple of years, I took it into my own hands to see the gp and she referred me back to cardiology and the process started again. My last echo was in May last year - not much progression but hinted it wasn’t mild any longer, and I’m to call my doctor to make an appointment for the next one in October?? I don’t feel breathless but I frequently feel like I need to take a deep breath- does that resonate with anyone? I’ve also suffered with swollen ankles for as long as I can remember- sometimes more swollen than at other times and they’ve always told me it’s unrelated to my heart condition- really??

It wasn’t until last year that I happened to see my NHS medical notes that they had written aortic stenosis!! Then of course I panicked and tried to read up as much as I could about the condition. It had been labelled as significant?? There doesn’t however seem to be any urgency around it- no one has mentioned a valve replacement despite me knowing it is inevitable. I am not on any medication?? Should I be?? I want to join a gym butI don’t know what exercises are safe as no one can seem to tell me. Honestly, I’m so confused!

Hoping someone can shed some light on this please!!! TIA

[Happyrosie]

I don’t know the answers Trynagetfitter (love the name) but you might like to try BHF. I quote from their website “Call 0808 802 1234 (freephone). Our Helpline is open weekdays 9am to 5pm”

[Trynagetfitter in reply to Happyrosie]

Hi HappyRosie, thanks for your reply. I did actually ring a nurse after writing this as I came across the number. She was so lovely and put me at ease. She said to ring the consultant and speak to him directly- so I tried but couldn’t get any further than the admin team and a promise that they’d pass the message on for him to ring me back with no certainty that he would do that! They wouldn’t even give me his email ! So I’m none the wiser and hoping that someone on here can advise as to the dos and dont’s of exercising with I’m guessing- a moderate stenosis.

[Ageingfast]

Dear Trynagetfitter

I was bicuspid with aortic stenosis. The cardiology refer to it as

Mild

Moderate

Severe

Critical

I had an annual scan to monitor the level. For me it was five years mild then just one year moderate before severe was reached. Then the idea is to book you in for a new valve. I deteriorated fast at this stage, breathless and exhausted. Key sign for me was a tendency to fall forwards.

When you come to have the new valve things usually move fast. You get three tests, ideally as an inpatient, but often at different hospitals.

Then comes the panic. But really nothing to be scared about. Fitting a new valve is now commonplace. One week in hospital then two to three months of Convalescing. Then you have your life back. The time in hospital is fantastic. Brilliant specialist staff, nothing like previous times in hospital.

You will benefit by being fairly fit beforehand. Walking etc is fine, you don’t need gym fitness.

Cardiology departments are improving rapidly. Mine is now superb.

I hope yours is as great as mine.

Sooty

[Trynagetfitter in reply to Ageingfast]

Thank you Blackcatsooty( I have one of those and her name is Harley)!

Great advice- although the gym fitness was to help lose a bit of weight as well, I’ll stick to a healthy diet and continue my walking.

My cardiologist belongs to a private company and operates from a local surgery. They wouldn’t give me his details today to ask all these questions sadly, so I am so grateful for all these responses.

I think I’ve just buried my head in the e sand for a few years not wanting to know. I’m glad I’ve asked now as the info isn’t as scary as I thought it would be!

Thanks again 😊

[Rhinos67]

Hello

When I was diagnosed I was already at the severe stage and was told to stay active BUT.....no running, no fast walking, no hills and no stairs. So slow and steady walks only until I had my surgery 6 months later.

They tend not to operate until you are severe.

Don't push yourself now that your stenosis is progressing, you will be able to get fit in future. For now it's a case of maintaining where you are now and staying as healthy as you can.

If you aren't already a member of the Facebook group UK Aortic and Heart Defects Pre and Post surgery it's definitely worry joining. Everyone is on the same journey or is supporting somebody who is 😊

Joanne

[Trynagetfitter in reply to Rhinos67]

Thank you so much for your reply- that’s really great advice . I was previously( only a few weeks ago)walking on my treadmill at a fast pace for an hour at a time! I’ll stop that!! Ok and maybe no gym then and I’ll join the fb group too.

Thank you so much 😊

[Rhinos67 in reply to Trynagetfitter]

Carry on with the walking, but don't push yourself.I remember walking out of hospital after I'd been diagnosed and told that I'd need OHS with zero information. The first thing that I did was Google it and that sent me into a full blown panic attack.

The Facebook group gave me so much reassurance. We have regular zoom chats too 😊

Joanne

[Trynagetfitter]

Ive just joined! Thanks again x

[Ageingfast]

if I give inappropriate advice on here, it will be be removed tout de suite.

If one in fifty people on face ache gives inappropriate advice, it will become “fact”.

Please don’t Dr Google etc, stick to the NHS or BHF sites.

Sooty

[Trynagetfitter]

will do👍🏻

[Hidden]

Hi I'm in that FB group too its so supportive, welcome

I'm 8 wks post op AVR in Oxford

a few blips in recovery but trend is upwards

Just had my surgical follow up and been told FULL recovery can be 6 months to a year depending on yr previous health fitness and any other medical problems and we have to pace ourselves carefully

I had a murmur at 18 no action was ever taken, I had various health problems over next 50 yrs stenosis was finally diagnosed last Aug as severe and op in November

Good luck keep chasing it up to get what you need

❤️

[Trynagetfitter in reply to Hidden]

Thank you. Glad you’re recovering well❤️