ICD fitting tomorrow!

[SuffolkLad77]

I have Long QT Syndrome, and had been asymptomatic for the last 46 years until a couple of weeks ago, and since then have had 5 episodes! I'm also an HGV driver.

All 5 episodes have resulted in loss of consciousness, with incontinence, and the last 3 episodes lead to VF arrest needing CPR and defib.

So, currently have a pacemaker fitted externally, this was done on Sunday (8/Oct/23), and have been given the option to have either a pacemaker or ICD fitted permanently from tomorrow.

Prior to all this, my LQTS was managed with 160mg Propranolol daily.

I know the choice of pacemaker or ICD is very much my choice, but I also know it has implications on my HGV. Advice much appreciated about going forwards.

[EmmJayTea]

Hi SuffolkLad77 and thanks for your post. I'm the same age as you and had an ICD fitted 8 weeks ago. I didn't really have much choice due to dangerous arrhythmia becoming more frequent due to underlying arrhythmogenic ventricular cardiomyopathy. The alternative (sudden death) was far less appealing.

I've had to surrender my licence for at least 6 months and have been told that I will not allowed to drive commercially going forwards (I need to seek clarification as I think this may only apply to HGVs and PCVs?). But as a self-employed person, I also drove vans a lot for my own business as well as others.

The DVLA website seems very brutal about Long QT Syndrome (see gov.uk/long-qt-syndrome-dri..., irrespective of whether you have an ICD. 🤔

DVLA were very sympathetic and understanding when I phoned them. It was a very difficult call to make, but I voluntarily surrendered my licence (apparently volunteering makes it a bit easier to reobtain later than if it is withdrawn by DVLA). It is an offence not to declare certain conditions, so I was backed into a corner 😖 (no pun intended). ICDs and Long QT are both notifiable conditions.

I'll be honest, this is challenging me and I am having to do a lot of rethinking. I don't have any immediate answers yet, but wanted to reach out all the same. I am feeling extremely frustrated (and concerned) at having to turn work away. But make no bones about this, I am VERY happy to be alive! 😀

You've been through a lot in a short space of time. Make sure you allow time to work through the mental impact of this and accept any support you are able to access. This was advice passed to me from others and I have certainly needed it.

Good luck with the procedure and let us know how it goes.

[sturon]

Hi and welcome to the forum.

Like yourself my husband has LQTS. Five years ago he suddenly had two cardiac arrests. Fortunately, I was able to do CPR while I waited for the ambulance. He was in Intensive Care and had an S-ICD implanted. For us, at the time, we thought this was life changing. In fact after time has passed we have started to live life to the full. Now after the pandemic we are travelling again and forget about the implant.

We see this as having his personal paramedic with us. Airport security is not a problem as he gets the 'Royal treatment' just shows his card and off he goes through. The induction hob is a no go area for him but that gives him a good excuse to stay out of the kitchen.

As for driving that will be an issue for you. He had his licence revoked for 6 months. The reapplication process took a further 5 months so he was not able to drive for nearly a year. The DVLA may have improved now but my advise is to reapply as soon as you can. I think you will find HGV licence is probably one that they will not allow, but ask them to clarify this.

I would say overall having an ICD or S-ICD will give you peace of mind - Good luck.

[CRTD]

as you will already be disqualified from having hgv licence ( or any other licence for 6 months) after losing consciousness it seems a no brainer to get an ICD which could save your life ( mine has saved mine). My understanding is that even with long qt and no blackouts hgv is ruled out

[rob1922]

hi SuffolkLad77, I’m sorry to hear this is happening to you. I just wanted to ask you a question. As I have recently been diagnosed with genetic long QT, I’m 38. My QT goes up when I exercise so I have been advised not to do so, so not to play football or run, which is very depressing. It’s around the 460-470’s normally and went to 519 during and exercise stress test. I’m just curious about the nature of yours, as you mentioned you were event free for 46 years, what was your average interval numbers? Did the Drs say why they happened? I was informed by my consultant said it is not a progressive thing, it doesn’t get worse, you either have it or you don’t. Were you doing anything strenuous that could have triggered these events?

Any in site would be appreciated as I’m very anxious about it.

Thanks