heart symptoms/ cardiomyopathy

[NLGA]

hi

After 3 years plus of being constantly breathless but diagnosed with AF yesterday I visited a private cardiologist

Anyway he said yes I have AF but also he believes and I will put it how he did my heart after taking a breath is not returning to shape as quickly as it should

He said a bit like a plastic bottle that is crushed after pouring water out of and when the next lot of water needs to fill the bottle the bottle hasn’t returned to its shape quick enough so it’s not filled quickly or completely to it finally opens up fully

Stupidly I didn’t what this condition was called but I think it’s right as I have been on a merry go round with asthma and AF with ever being told this and to me it fits

He has booked me for scan tomorrow and said he will get me on medication if he’s correct

He did say my echo from 2023 looked ok structure wise EF was ok etc

Anyone know the name of this condition and how long you can live with it ? Questions I should have asked I know

just edited the post title after help from the replies thank you

[happyrosie1]

once a diagnosis is made and you are on medication then you are likely to live for many years. Assuming your diet and lifestyle is right. Guidance on this is on the BHF website.

The condition has a horrible name and you should take NO NOTICE of it.

[NLGA in reply to happyrosie1]

hi Happyrosie1

That’s good to know and kind of you to reply . I spent last night googling mad but I couldn’t seem to find it

Is it a common condition ?

I just want to get back to being able to walk up a slight incline without fear or not have to think each morning of what difficultly I will face at work . I feel so restricted I can’t even think about holidays as I fear my breathing

Paying for this consultation is what I should have done 2 years ago

[happyrosie1 in reply to NLGA]

I don’t know if this is a common condition as such, but I do know that many many many people have posted here about it.

[NLGA in reply to happyrosie1]

Have they

Would it be possible to let me know the name of the issue or how to search on here

Thank you for your posts it means a lot as you can imagine my brain has raced to the worst outcome

[PadThaiNoodles]

Sounds like he was describing restrictive cardiomyopathy.

Hypertrophic cardiomyopathy (bottle doesn’t pop back into shape because the plastic is too thick) is more common, but that would have been visible on your echo.

[NLGA in reply to PadThaiNoodles]

Thanks for the info

Had 2 echos in 2022 and late summer 23

Tomorrow he’s arranged another his words were to check it’s not something else other than what he thinks it is

As a bit of surprise took over I left without asking the right questions

Thank you for your help

I will google this to see what’s in store

[NLGA]

anyone know what medical treatment would improve this condition just so I can have a understanding before I see the doctor later today

[PadThaiNoodles in reply to NLGA]

I would suspect the treatment would be for HFpEF (heart failure with preserved ejection fraction -- the term happyrosie1 was likely suggesting that you ignore as it's a pretty awful name).

Probably a diuretic (furosemide); potentially a SGLT2 inhibitor (dapagliflozin).

[NLGA]

that’s exactly what I have on this prescription

It sounds a death sentence

[PadThaiNoodles in reply to NLGA]

They're meant to be good stuff. My left ventricular hypertrophy was caused by leaky valves, so it was the knife for me.

[NLGA in reply to PadThaiNoodles]

Oh sorry to hear that

Thank you for your help and advice on my recent posts

Very kind of you