Internal defibrillator alarm just sou... - British Heart Fou...

British Heart Foundation

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Internal defibrillator alarm just sounded

Callista profile image
13 Replies

This is totally unbelievable

- my internal defibrillator alarm has just gone off having had a ICD replacement at The Freeman hospital in Newcastle on Tuesday. I phoned the hospital only to be told the Pacing Dept. is closed over the weekend and to ring again on Monday. Lady on phone very brusque and unhelpful and said go to A & E if you feel unwell.

Clearly never been to our Whitehaven A & E with a cardiac problem as they merely say unable to help and send you home esp. at the weekend.

The gentleman who is relying on technology to keep him alive might like to take note that some human response is also necessary.

I said that if not dead by Monday will phone as advised!

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Callista profile image
Callista
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13 Replies
Lezzers profile image
Lezzers

As far as I'm aware ICD/pacing clinics have never opened at weekends, they've always been 9-5, Monday to Fridays only. If your alarm goes off it is standard practice to be told to attend A&E if you're unwell or you're worried, but if you feel ok to contact your clinic on Monday. If your alarm goes off more than once then it's definitely an A&E visit.

It may just be a case of the alarm has gone off inappropriately.

Callista profile image
Callista in reply to Lezzers

Visited A & E who managed eventually to get a response from Freeman who implied it was my fault for not pressing the button when it happened. Guess what it went off again this morning at 6.58am…

It is obviously an electrical problem but not very reassuring if there is no one to talk to.

If I looked after my farm animals as the NHS does it’s patients I would be heavily fined by DEFRA and the animals removed from my care. I don’t refuse to care for them at weekends and nights. Some jobs are not 9-5 appropriate.

Lezzers profile image
Lezzers in reply to Callista

Whether some jobs are not 9-5 appropriate is not in question, I'm just surprised you wasn't aware? Maybe ask why they're not open at the weekends at your next ICD clinic. Were you never told what to do if your alarm went off? The ICD clinic at Papworth not only told us about the alarms they also let us listen to them.Everyone has different experiences of the NHS, some good some bad unfortunately yours seem to have been all bad.

sherwood123 profile image
sherwood123

I don’t know what type of monitor you have, but you can ,because I have phone directly to the manufacturer to check its working ok. I was given a contact number, and the took a ref number from the monitor, they checked mine and I was told it was working as should. Hope this helps. Stephen

Callista profile image
Callista in reply to sherwood123

I have a Medtronic. I have looked on the back of the leaflet and there is a number which covers Europe/Middle East/Africa but it is inSwitzerland and I cannot feel they will be much use especially at the weekend. If you have a UK number I should be grateful to get it.

sherwood123 profile image
sherwood123 in reply to Callista

There are many different devices people have fitted for various reasons, I my self have a CRT-d, which is different to yours.Mine is a Merlin Home transmitter, which is controlled by St. Jude Medical, giving you the contact number would be irrelevant because they are two totally different devices, sorry I can not help. Take care

sherwood123 profile image
sherwood123 in reply to Callista

medtronic uk tel 01923205167, this is uk customer services number, you could give it a try!

Callista profile image
Callista in reply to sherwood123

Thanks may be useful. I am waiting to see if it sounds for a third time tomorrow morning.

Skertchly profile image
Skertchly

Didn’t know they have alarms. Mine has never sounded.

Callista profile image
Callista in reply to Skertchly

Nobody told me either. It was quite a shock when it went off. I went round checking the fridge and microwave until I realised it was coming from inside me.They don’t give you much information do they.

presto816 profile image
presto816

Hi - I don't know if this will be helpful and it would be involved to explain why, but if by chance you continue to have problems and ever want a replacement, I got a CRT-P (cardiac resynchronisation therapy pacemaker) implanted instead of an ICD. A CRT-P has three leads to the heart that kick in every time you breathe. My cardiologist electrophysiologist here in Cambridge is supposedly one if not the best in his field. ICDs don't offer the therapy, and I was wary of them going off too much or perhaps not when needed etc. He agreed. I was also told that ICDs are often recommended because they are more costly. Again, obviously I do not know your medical needs, so I may be completely wrong in suggesting this! Just trying to help if by chance your problems continue and you have second thoughts. Replacing devices is no picnic, I understand that too. Again, just trying to offer my experience to hopefully give you another angle to this. Best of luck to you...

Callista profile image
Callista in reply to presto816

Thank you for advice. I have never heard of this.

presto816 profile image
presto816 in reply to Callista

You’re welcome. I hope things get better for you regarding what you have. (BTW, the device I noted that I have is made by Boston Scientific.)

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