ICD interrogation : Got my ICD checked... - British Heart Fou...

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ICD interrogation

alexgilbert
alexgilbert

Got my ICD checked out, interrogated is the term the medical types use. It appears that the pacing function kicked in on a number of occasions since the last interrogation about six months ago, it is set to pace if my heart rate falls below 40bpm for a set period of time, apparently this happened a number of times during the night presumably while I was asleep. It appears also that on one occasion my device recorded a rate of 365bpm, yes 365! I didn't even know that was possible! While this was happening the device charged itself ready to shock but stood down with seconds to go as my heart returned to something like normal on it's own. I was amazed to learn that this happened at six o'clock in the evening so I was obviously wide awake but totally unaware of anything amiss. The reason I am telling you my story is to emphasise just how wonderful these devices are, I am so grateful to have this little lifesaver imbedded in me. I occasionally come across messages from folks who are undecided about taking up the offer of ICDs as these devices do have certain minor limitations on life style, my advice would always be don't put it off, if your doctor/consultant reckons you would benefit from having an ICD or similar fitted just go for it! It might just save your life. X

24 Replies
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My husband has an ICD fitted, we've been told it's corrected his heart a couple of times. He's also had 44 self terminating vt's, so it's a real comfort to know it's there. We've never asked what settings it's on but will definitely ask at the next check up

Glad to hear you are seeing the positives in this. I imagine it must have been a bit of a shock (no pun intended!) to hear that your heart rate had been so high. You're right though - amazing to know that your ICD responded appropriately. I agree that we're very lucky to have such fantastic technology protecting us x

Its happened to me aswel ready to shock me bout 10 o'clock while I was watching TV lol didn't know nowt about it

After a lot of ups and downs with mine ,due to a lead not staying where it should be I am happy to have it keeping me safe! Would be the first to say if you are offered a pacemaker don't hesitate it could definitely be your life saver! I'm nearly 68 and can now look forward to doing all the things I was unable to do, due to being breathless! Have started walking with my husband and now have managed so far two and a half kilometres with no problems,next is swimming in the summer, we have use of a large pool in France where we spend July and August .

True words , totally agree

Hi very reassuring as I have been told I require one, you mention minor limitations on your lifestyle can I ask what they are.

alexgilbert
alexgilbert in reply to Hanibil

Hi Hanibil, to be honest there are very few downsides to having an ICD, you just have to be aware that it is there. What I mean by that is, in my experience, once it was fitted I forgot it is there most of the time. I am aware of it when my dog or the kids jump on me unexpectedly I can get a bit spooked by that as I can certainly feel it and although it's not sore and the device itself is very robust I am conscious that the leads could become detached or damaged with too much rough and tumble. For the same reason it's probably a good idea to avoid contact sports or at least take extra care. Apart from that and avoiding strong magnets which can temporarily interfere with the device e.g. induction hobs, airport scanners (show the card you will be issued with by the doctor) loitering around shop doors where they have security scanners, keeping your distance from large speakers at gigs, and keeping your smart phone about 12" away (just get used to using your other ear). As you can see all the above is very minor compared with the undoubted benefits. I'd like to mention that I worried about the op to get my ICD fitted but it was a doddle I've had more discomfort from a filling at the dentist.

Hanibil
Hanibil in reply to alexgilbert

Thank you I think I have finally woke up to the fact am better of with one than without one. Just got to wait now.

Alison_L
Alison_L in reply to alexgilbert

You were told to keep your phone 12" away? I was just told not to carry it in my left breast pocket...

alexgilbert
alexgilbert in reply to Alison_L

Hi Alison, just checked with the instructions I got with my ICD I haven't looked at it for some time, it actually says 6" not 12" so I would say the advice you were given is right, sorry.

They are definitely life savers. I'm sure I am only able reply to this message because of my ICD doing what it should. It's corrected over 70 instances of arrythmia and delivered 3 full blend shocks too in the last 6 months. I love the little fella.

Hi Alex,

I’m so happy to read your post (and all the replies too!) as I just had my ICD fitted at the Brompton yesterday. It’s so lovely and such a relief to read positive stories about your ICD devices.

I’m 44 and so it was a very difficult decision for me, but the fact that I have young children at home was my main reason for choosing to go ahead with the procedure.

Good luck in the future and thanks again!

Emma

I’ve had my ICD for two and a half years and don’t think about it now. To anyone being offered an ICD then go for it, no problems at all and doesn’t really impact on your life.

365?? Wow! Are you sending data through regularly, or was this only picked up at the check? If you had sent through the data, why didn't they phone you? I was told mine had an upper limit as well (which would be under 200bpm I would have thought).

I've got my 2nd post-hospital pacing check next week. As far as I know it hasn't done a thing yet. I'm saving the battery!

alexgilbert
alexgilbert in reply to Alison_L

Hi Alison, my ICD does not have the capacity to send data remotely the data has to be downloaded at regular hospital visits. Must be an older model I guess so my next visit should be interesting as it appears I am blissfully unaware of what my ticker is doing. Fortunately I have virtually no hf symptoms at all (yet) apart from moderate breathlessness and occasional dizziness. I walk regularly 8 to 10 miles no bother often more and still manage fine at the gym. My heart failure nurse is a bit at a loss with me lol

Lezzers
Lezzers in reply to alexgilbert

Hi. How old is your ICD? Do you not have a home monitor?

alexgilbert
alexgilbert in reply to Lezzers

Hi Lezzers, I don't know how old the model is but I had it fitted just over a year ago. It does not have the ability to home monitor I have to rely on regular visits to the hospital to download the data.

Alison_L
Alison_L in reply to alexgilbert

You need to ask for a home monitor next time you see them, Alex. You plug it in to the electricity, then you download data from the ICD to the monitor (via a similar mouse-sized thing to to the one they use in hospital) to the monitor, then the monitor sends the data to the hospital via its own broadband. Or phone signal. Or something, Magic, probably!

It is suggested that you keep it by your bed (ie where you spend most time), and if the ICD is triggered for any reason, it will send out an automatic signal to the monitor, and if the monitor is within range to get the signal, it will then pass it straight on to the hospital.

I actually keep mine by my sofa in the living room, and send through the data at least once a week.

The idea is that if there is a problem, then the hospital will be alerted and call you.

They gave me mine at my first follow up pacing clinic.

alexgilbert
alexgilbert in reply to Alison_L

I will now be asking this question at my next appointment. There is a hospital within easy reach for me that can deal with this although the one I choose to use for interrogation is further afield. I am a most fortunate and privileged individual as I live in Scotland, but perhaps the rules and procedures are different in NHS Scotland.

Alison_L
Alison_L in reply to alexgilbert

Ah, you are indeed a most fortunate and privileged individual! I probably win the postcode lottery, being in S London, but my left arm is from Midlothian!

It's possible NHS Scotland works slightly differently, but with your heart history, you should certainly be offered a monitor. The only disappointing aspect is that you can't read the data - there's nothing on the monitor that tells you anything other than that the data has been received from the ICD and passed onto the hospital.

Wodney1966
Wodney1966 in reply to Alison_L

I've got a monitor at side of bed to my s icd it sends data once a week to northern general in Sheffield lol

Lezzers
Lezzers in reply to alexgilbert

All ICD's are able to be home monitored. As Alison_L says, ask about having a home monitor at your next interrogation. You may not have been given one yet as your ICD has only been fitted for a year. Do you live near the ICD clinic? We were told that the home monitors are rolled out first to those living the furthest away.

alexgilbert
alexgilbert in reply to Lezzers

I will now be asking this question at my next appointment. There is a hospital within easy reach for me that can deal with this although the one I choose to use for interrogation is further afield. I am a most fortunate and privileged individual as I live in Scotland, but perhaps the rules and procedures are different in NHS Scotland.

Jus be careful about accidentally unplugging the device! My husband did and the H phoned thinking he'd stopped breathing. At least we knew it worked and they were monitoring. Over the last few months a blue light has been coming on once or twice a week so we know they are automatically taking a reading. It's a comfort if you are going through a rough patch that they will take responsibility and not just leave it to you.

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