Defibrillator

[Pinky100]

Hi all i have hypertrophic cardiomyopathy with obstruction I will be having a Single chamber ICD with the potential of right ventricular pacing for the obstruction

Just want to know Does the pacing help with shortness of breath

I’m also in permanent afib

[WardijaWardija]

Hi Pinky I'm afraid I don't have an answer for you about the pacing/shortness of breath issue, but as a fellow sufferer of HC with obstruction, may I ask you a question.Prior to the proposal of an ICD, what medications were you taking to manage your condition and for how long?

Did your meds. fail to manage your condition?

The reason for asking is that I'm on a cocktail of meds. for this condition. Prior to being diagnosed, I already had an existing heart issue and had 3 stents put in summer 2019.

Is it inevitable that all HC sufferers will eventually need an ICD? Thank you 🙂

[Pinky100 in reply to WardijaWardija]

Hiya

My medication I am on are

bisoprolol, verapamil, disopyraamide and Apixaban

My meds never failed it’s just that I have gone into permanent afib so they want to pace me and with icd they have always ask me to have one but I’m not keen

What medication are you on

[WardijaWardija in reply to Pinky100]

Hi. OK, I get your situation. I'd be very nervous if was told that I needed one of those, but if it improves our quality and length of life, guess it's what we have to adjust to.My meds. are: atenolol, bisoprolol, clopydogrel, asprin, simvastatin, rythmodan retard, isosorbide.

These are the main ♡ meds. being taken to manage the HC. My Cardiologist has just raised the Bisoprolol up to 5mgs as to lower my heart rate. It seems to be working, currently my BPM is 63-65, so well inside the normal range, thank goodness.

Take care and stay safe 😷

[Enonykasper]

Hiya I have hypertrophic cardiomyopathy I do not have an obstruction

Although I did all of a sudden end up with 24,900 extra heart beats a day

I attend the royal Brompton heart and long hospital it’s a inherited cardiac condition so they specialise in hypertrophic Cardiomyopathy

I have only been going this last year as I was not happy at my hospital

Any way within eight months of being there they have sorted out my extra heart beats and saw a rythm that contributes to sudden death

My dad died 30 years ago at the age of 52 with this

So I now have Icd two chamber and am so grateful as I did not know I had that rythm

I was at my other hospital and they seemed to think walking about with 24,900 extra heartbeat

It was not I felt awful

When I get a report from the hospital they tell me the risk assessment for dying from my illness

And mine had risen slightly which is why the doctor said to me

He had a meeting with 20 -30 doctors round a table and they all decided it was my time to have a icd

He said it was all about the right time to fit these and they felt it was as my time

I’ve only had mine 12 weeks and was terrified but more terrified at the thought of not having one

I have just asked my sister to go back to her cardiologist as her ecg looked a bit like mine but her Gp thinks that’s ok

But she like you has an obstruction

But I think like me yours will be an Icd +a pace maker and they will set it to a heart rate that’s helps with your breathlessness you have a monitor at home that goes straight to the medical team so they can keep an eye on it and adjust it when needed

Good luck 👍🏻

My sister is suffering from breathlessness at the moment

Hope you get all sorted

I worried so much about my Icd as it was such a shock

But it’s absolutely fine I forget I have it lots of the time