newly diagnosed valve replacement

[Hythe123]

Hi,

Brand new here. Recently diagnosed with severe aortic stenosis. Saw the cardiologist 4 days ago. Need to have TOE, ct scan, lung capacity test, meet surgeon then put on his list for valve replacement. The waiting is driving me insane. When I had echo 7 weeks ago the chap that did it rushed me into a doctor and they both told me I needed open heart surgery and that I would probably be kept in that night as it was urgent. Apparently they should not have said this but I cannot get this out of my head and am consequently consumed with anxiety. My heart rate is high, has been up to 160, and I am conscious of racing or skipped beats all the time. I can’t focus on anything else and am afraid to move to much, just in case. Cardiologist said she would instruct GP to prescribe betablockers, but when I checked with them on Friday she had not done so.

Questions Will betablockers settle heart rate, and help with anxiety?

And…how will I get through this wait without imploding ?

[Gillph]

Im in the same boat as you but with different valves. Anxiety is dreadful but my wait has been going on since November 23 and I’m still waiting for the last of 5 tests, probably June. I’ve repeated to myself that if it’s lasted this long it’ll do a bit longer and I’ve learnt to pace myself so I don’t get tired because then I really worry! The medications (Bisoprolol, Ramipril, Atorvastatin and aspirin) I am now on have steadied the pulse but the 2am terrors still strike. The Gloucestershire NHS idea of urgent seems to mean within a year and the strikes aren’t helping any of us. A mantra of mine is ‘careful what you wish for’. All the best and I hope your anxiety diminishes a little.

[Hythe123 in reply to Gillph]

Thank you. Been on Bisoprolol for two weeks now and it has settled racing heart. Gp has put put me on Mirtrazapine to aid with sleep and anxiety. I have has lung test, and ct with dye. Yet to have TOE then that’s all tests complete. Have not yet heard from surgeon although cardiologist has written to him. Waiting and anxiety are still the worst! How are you doing, any progress?

[Gillph in reply to Hythe123]

I'm still waiting for the angiogram. Had the ecg, echo, 24 hour bp, 14 day heart monitor and TOE so it's just this last one I've been waiting for since Nov. 23. As regards anxiety I seem to have reached a plateau of content although I've no idea how. My life carries on, I'm fortunate to not be so whacked I can't do anything at all and I've accepted that the NHS cannot be bullied, encouraged, bought flowers, chocolates and champagne. I just have to wait. All the best to you and I'll keep this wonderful forum posted as to my progress whenever that happens.

[Vms49]

I was told sept 2023 I would need open heart surgery for As (severe) I finished the last of my tests two weeks ago now just waiting to see what happens next . It’s the being in limbo that’s frustrating but as it seems to happen to everyone they must know what they are doing . I have had appointment with Tavi team as well as cardiac team so apparently they will have a meeting and decide on when and what will happen .

[Hythe123 in reply to Vms49]

Hello, how are you doing? Any progress?

[Vms49 in reply to Hythe123]

It’s such a slow process isn’t it but teams had meeting and apparently I have a really healthy heart, no problems with coronary arteries but I have a badly calcified aortic valve so I have definitely got aortic stenosis and unstable angina ( think as I understand it this just means I have major pains from poor blood flow ) I have been offered Tavi as nothing else needs done and have decided as this is less invasive I have accepted . I will have it done possibly end July / August. Thanks for asking though.