My ICD works: Mind blown and feeling wobbly

[EmmJayTea]

Wow. My ICD did its fast pacing (ATP/anti-tachy pacing) earlier this week. I've only had the device for a couple of months. It quickly and safely brought me out of a dangerously fast arrhythmia. I wasn't aware the device was doing anything, but was aware of the episode as I felt really lousy and nearly passed out whilst walking through a railway station. The ICD had already charged and was standing-by to deliver a shock in case the ATP didn't work. 🫣 Thankfully, it did work. Amazing!🤯

Data was automatically sent to the cardiac team who called me this morning to confirm.

I wanted to share this in case anyone reading is doubting having such a device fitted. They are a good thing!

I'm thrilled that the device is working and has already saved me from danger, but Monday evening's event has sent me into a wobble. It's an unwelcome reminder that I have a diseased heart. 😥

Coincidentally, I have an CMR/MRI scan today to analyse the state of my arrhythmogenic ventricular cardiomyopathy, which was diagnosed 2 months ago. Up until now, I've been doing pretty well and returning to being more active, with lots of walking. Alas, I will never run again, but I am slowly learning to accept this.

[JessicaRed]

All the best to you thank goodness it worked !

[EmmJayTea in reply to JessicaRed]

Ooh, thank you!

[Coffeeandwalnut]

I’m so glad it did its job. I’ve had it happen to me. Just remember tho if you drive it’s now a 6 month automatic ban unfortunately providing you don’t have any more episodes within that timeframe. It definitely does send you into a wobble but it will feel less so, the main thing is as my cardiologist told me when I was having a little moan 😂 that it did it’s job and saved your life. His words not mine. Xx

[EmmJayTea in reply to Coffeeandwalnut]

Thank you for your reply. Yes, it saved me and that's exactly how I am looking at it. My wobble was more around my condition appearing more unsettled this week. I'd been doing really well, but I guess I need to be prepared for a much longer settling-in period?

Regarding driving: I had to surrender my licence in August, so there is no immediate change for me. I will check to see if a near black-out episode resets the clock. Thankfully, there was no shock on this occasion as I know this would definitely reset the no-driving period clock.

[DW4019]

I’m happy for you and your positive attitude. I have had an ICD for 30 years within the first 29 years my ICD went off 3 times and it’s terrifying. I then had an issue last year and it went off over 40 times in a month, I have had 5 ablations now and am waiting for a heart transplant.

I feel for you as knowone will understand unless they have experienced it themselves, my advice is don’t put yourself in stressful situations. Listen to your body and do don’t over exert yourself as that will bring on the VT.

Stay strong my friend and my thoughts are with your…

[wilberwoo in reply to DW4019]

I feel for you, mine gave me 8 shocks in an hour, I could swear I had PTSD afterwards, still have flashbacks now. I was lucky my ablation appears to have worked, 1 month on and no shocks, no symptoms and no ATP needed. Good luck with the transplant, hope all goes well.

[EmmJayTea in reply to wilberwoo]

Great to hear that your ablation worked. Fingers crossed that it stays that way.

And thanks for sharing your experience on here. Much appreciated.

[EmmJayTea in reply to DW4019]

40 times in a month? Blimey! 😧 I'm reqlly sorry to hear that you've had to experience this. But, I guess the other way to look at it is that you were rescued/saved 40 times? That's a good thing and I am pleased you are here to share some words of encouragement for others. I really hope that things settle for you and that the wait for a new heart isn't too long? I'm sending you lots of positive thoughts. 🙂

Thank you also for your words of advice. I am doing everything I can to avoid stressful situations and over-excitement. I can usually feel the early warning signs by a higher prevalence of ectopics. It's tough re-programming the brain. e.g. running for a bus/train would have been a normal activity as recent as 3-4 months ago. Not now though, I realise that it would be too risky. I'd rather arrive late than not at all.

Here's to staying strong and as positive as we can!

[MrsNails]

My Husband was at a Bowling Match & one of the Players fell to the floor, he was ‘out’ for about 15secs before he came around, they’d already started the 999 Call & one to his wife, who then took him to A&E

No one at the Club knew he had an ICD at that point but they were told later. The hospital called him to say he’d Arrested & the ICD worked - he was kept in hospital for a few days & now seems none the worse for his experience.

This is particularly reassuring to us as our Daughter in Law Arrested in A&E & now has an ICD fitted, she is only 37years old with two young children.

[EmmJayTea in reply to MrsNails]

Thanks for sharing this positive story. Yes, definitely reassuring!

[PersonalTrainer_GH48]

Hi there, I'm glad it did it's job. It is quite amazing what it can do for us. Mine has shocked me on two occasions and saved me. I call it my cybernetic borg (star trek) implant. 6 months no driving though which is a nightmare. My bisoprolol level of 75mg's seems to be the optimal level and so far so good. Unfortunately I still have 4 months no driving left so I'm cycling everywhere. Glad you are OK and keep positive and stay strong 🙂.

[EmmJayTea in reply to PersonalTrainer_GH48]

Yes, we are very fortunate to have this technology, or a fair few of us wouldn't be here.

Thanks for sharing your experience so far. I'm interested to hear that you have found an optimal dose of beta-blockers. I'm on 25mg of metoprolol, with a view to titrating and finding the best dose. It's early days yet, so I guess there will be afair bit of tweaking ahead. How long did it take to find the right dose for you?