VT & ICD

[Tigerjack]

Hi,

This is my first post on here and wondered if anyone has been in the same situation as me.

My history is I have been treated for SVT’s for the last 8 years, first with Bisoporol and then with a couple of ablations neither of which went well as they seemed unable to control my heart once the wire’s go in. With the last one I needed shocking half a dozen times. I never seemed to recover very well so at my follow up appointment (one year later) my specialist organised a Ct scan and MRI.

This showed that I had dilated cardiomyopathy and scarring in the lower chambers of my heart. I finally had a results follow up in Jan this year and was put on tablets.

Since then I have started blacking out and after having a internal loop monitor fitted it revealed that I am now having Vt’s not svt’s and I am in hospital waiting to have an ICD fitted.

However of course this is not a cure for the problem and because of the frequency every week I’ve been told I would have a poor quality of life being shocked so often. Likewise apparently the medication for this at my age 62 comes with serious side effects.

So sorry if I’ve babbled on but like I say wondered if anyone else out there is like me and how they are coping.

Look forward to any advice, thanks.

[sturon]

Hi Tigerjack.

This must be a worrying and frightening time for you.

I am not in your situation, but my husband was. Just over three years ago he was diagnosed with long QT syndrome. This is a condition which can lead to sudden cardiac arrhythmias like VT and VF.

Just before Christmas 2017 he collapsed and had two cardiac arrests. Fortunately I was a nurse and managed to do CPR while an ambulance was called. Three weeks in hospital and and S-ICD implant later he is doing well. We are now well over two years on and he has his weekly check up over the internet and an annual review. We have the reassurance that if he had another VT or VF episode he has his very own paramedic with him. Before Covid-19 we travelled extensively and hope to be able to again once this situation is over.

So, as you can see from our story there is life after an ICD and it can, and is, a fulfilling one for us.

If we can help in any way drop us a message.

Take care.

[Tigerjack in reply to sturon]

Than you Sturon, lovely to hear how well your husband is doing.

I’m gradually learning more about my situation, and it is reassuring to know that there is a good quality of life going forward.

[Alison_L]

Hi Tigerjack. Yes, I'm in a similar position. I had a (silent) heart attack in May/June 2018 resulting in a large scar, and one stent being put in at the end of June 2018. Less than a week after being discharged I started collapsing with VT and was blue-lighted back to (a different) hospital, where I spent the next 18 days having lots of tests and resulting in an ICD being fitted at the end of July 2018.

I am now on a raft of drugs - Eplerenone, Lansoprazole, Aspirin, Isosorbide, Candesartan, Carvedilol, Atorvastatin and Vit D - which between them have kept my heart rate ticking over quite nicely. The ICD did pace my heart at the lower end (when my BP tried to go below 40 at night - I've since had a change of drugs which means it now doesn't drop so low), but I have had no more VT and therefore no pacing at the top end, and, more importantly, no shocks. I was 56 when all this started, so not that much younger than you.

I'm not sure what side effects the docs are referring to, but in my case, none of them has been serious, and there are always alternative drugs, hence my carvedilol instead of bisoprolol.

Hope this helps xx

[Tigerjack in reply to Alison_L]

Hi

A bit of an update on the medication they would like to start me on Amiodarone - after reading on here about it, think I would prefer if they could find an alternative.

They want to start it tomorrow so think I need to have a chat with them first.

Does anyone take any alternative to control VT? I would like to hear about your experience, thank you

[Alison_L in reply to Tigerjack]

I was given amiodarone intravenously after my VT. It was really painful, and I got a lump in my elbow that took months to go down, As I say, I haven't had any VT since the first few days in hospital, and basically I've been on variations of the above medication since then.

[Tigerjack in reply to Alison_L]

That’s encouraging, I didn’t realise that what you take now is a variation of Amiodarone so thank you for letting me know that.

I’ll let you know how I get on.

[Alison_L in reply to Tigerjack]

Ah, no, sorry, I meant the meds listed in my first reply. None of those is a direct replacement for amiodarone, but they seem to have done the trick in keeping VT at bay.

Yes, please do xx

[Tigerjack]

Thank you, so good to hear you are doing well and encouraging to know that your medications have helped to control the VT.

I’m not going to lie, it all seems scary stuff at the moment. But I think it’s the fear of the unknown.

So thank you for taking the time to reply.