ICD/defib TGA patient

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ICD/defib TGA patient

Postby Rache13 » Wed May 27, 2015 9:09 pm

Hi Everyone,
Looking for anyone who has had experience of ICD. I have TGA and at moment dual chamber pacemaker. I get non sustained episodes of VT over the last year. I have had quite a few procedures that have gone quite seriously wrong and I am very nervous about having one fitted, as I have heard that they do go off by mistake. I am worried about how I would mentally cope with this but equally realise that it might be needed at some point. I also get quite a few ectopic beats at certain times of the month. I am based in Leeds. Thanks
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Re: ICD/defib TGA patient

Postby Forlyd » Wed Jun 03, 2015 9:46 pm

Hello Rachel,
I have had a dual lead ICD since 2012. I had a single lead ICD from 2004 up to 2010 when the battery needed replacing. (Of course the whole ICD is replaced not just the battery) The first ICD did go off unexpectedly a couple of times, and yes, it did give me a fright. But a quick visit to the pacemaker clinic and a bit of adjustment to the settings and all was OK again. The ICD is set up to intervene when it detects unusual activity in the heart, but getting the setting spot on first time is not easy so adjustments may be needed to stop it giving you a shock too early. The shock it gives you can be startling but not so bad as to cause a faint ! I had my first when I was at the kitchen sink washing the dishes. I never even broke a plate !!! That was 10 years ago.
The ICD will give you a lot of confidence. I found I worried a lot less when I got used to the ICD monitoring my heart while I got on with enjoying my life as best I could.
Don't worry Rachel. The ICD is brilliant and once you have it put in you will wonder what you were so scared of !
Take good care of yourself,
Love and best wishes from Lydia.
Tof,Pulmonary valvotomy 1952,Pott's shunt 1955,Pott's correction-VSD & dacron graft with Hancock valve 1975. Ablation 2001.Bivent.fail & AF 2002. Cardioversion 2002.Paroxy AF 2002. Ostial stenosis right CA. Cardiac arrrest-ICD 2004. In AF-vent/pacing.
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Location: Newcastle-upon-Tyne

Re: ICD/defib TGA patient

Postby ollybenson » Fri Jul 10, 2015 10:59 am

Hi Rachel,

I've had a ICD fitted since 2005 (and refitted in 2013). Since then it has gone off twice, both times as a result of my heart going into VT. Both times I remained conscious throughout; infact the second time it took a while to realise it had actually happened as it didn't feel as bad as I had thought it would. I was more worried that I'd accidentally swore in front of my mother-in-law than that the device had gone off!

The main issue is that you get an automatic six-month ban from driving when it goes off. This is probably the most serious way it affects me. I did go into the local A&E the second time it went off, but to be honest it was more trouble than it was worth (thye kept me in for 2 days for no real reason), and in future as long as I was well I'd simply contact my cardiac hospital who then see me as a priority.

I guess what plays on my mind is what would have happened had my ICD not been fitted.

Feel free to get in touch if you've got any more questions.


PS. I've also been through a couple of airport scanner machines without a problem. I generally try and go around them, but once I had a very officious French police officer who insisted I had to go through (and as I was getting on a Eurostar back to London, through worst case I'd at least be en route home) and the other time when I forgot and absent-mindedly went through it. Doesn't seem to be an issue; and I know that my doc said that there was a theoretical risk, just if it was him, he wouldn't want to be the one to find out it was real. Surprisingly most places are really good about it; I frequently had to go into House of Parliament etc for work and they never made it an issue if I had my ID with me.

Born Transposition of the Aorta VSD / PS (1977)
GOSH: Shunt (1978) / Rastelli procedure (1982) and replacement conduit (1995)
Heart Hospital: ICD fitted (2005).
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