monitoring post pacemaker?

[Dragonfish]

Hi now starting week 3 post pacemaker implanted and doing ok, but wondering about monitoring after 6 week check. I was told that I would be seen annually for a review after initial check, but a call to my cardio centre left me under the impression that I would be given a home remote monitoring device. Is this now the norm? Not sure now what to expect. Can’t say I’m keen on daily monitoring. Thanks.

[Thumper76]

Hi Dragonfish. Glad you’re feeling ok. A few weeks after I got my device fitted a monitor turned up at my house. It looks a bit like a binatone telephone from the 80’s 😁. It sits quietly in my bedroom and as far as I know it does a download in the night. Apparently, it flags up any issues. I think maybe that is what your cardio centre are meaning by home monitoring. Apparently there are also other types where you have to physically download the info yourself too. 😊

[Dragonfish in reply to Thumper76]

Thanks, fine with a nighttime download if I don’t have to actively do any thing, but concerned re what happens if I’m camping, or abroad? Have they advised you about travel away from home?

[Qualipop in reply to Dragonfish]

See my reply; friend's husband can take it with him but I doubt it would work abroad. It's just nonintrusive and sits on his bedside table. They phone him if anything's wrong. He has to do nothing at all.

[Dragonfish in reply to Qualipop]

Thanks! Yes not sure about working from another country.

[Thumper76 in reply to Dragonfish]

Hi. They told me I can take it with me but not to bother if I’m only going for a week or so. I still don’t really understand it 😊. I feel it’s there for added protection so that’s a good thing. Like you though I don’t like it to be on show and reminding me all the time X

[Dragonfish in reply to Thumper76]

Would it maybe work on a SIM card like a phone?

[Thumper76 in reply to Dragonfish]

Don’t think mine would but it depends what sort you get I suppose.

[RufusScamp]

I have the remote monitor, but it just sends a reading every 6 months unless I request one. The hospital like to see me every two years to check it. But there are several different devices, so yours may not be the same.

[Dragonfish in reply to RufusScamp]

Sounds fine if it trundles away in the background! Just don’t want constant reminders of my PM. Hoping to forget about it largely once initial recovery period complete. I will need to ask at my review I think. Thanks for your reply

[Hylda2]

I have monitor, once a year it is checked remotely but monitors constantly and I can always ring pm clinic and ask them the check for me or they will ring if anything odd turns up.

[Dragonfish in reply to Hylda2]

Ok thanks, a theme emerging here, which is back ground monitoring and only active downloads once in a while or if concerned. That’s good.

[Chinkoflight]

Hi, It's a very good question and I think I understand the concerns about daily monitoring. I had an ICD fitted with a pacing function mid March. I am very uncertain about the purpose of monitoring either to see if the box has or hasn't worked or something else. What is monitoring for? I had assumed it might help monitor my health and condition, quite apart from it's function to intervene in the event of a cardiac arrest or dangerous tachycardia episode. In the event my remote device has already alerted a lead failure at three weeks. (It failed at day one) Although the offending leads function has been muted, I'm still getting symptomatic activity which implies faulty working or heart issues not evident before the box was fitted. I see the cardiologist on May 1st and monitoring is a question I have. Whether I get the opportunity to ask it along with whatever the discussion is about how the problem will be resolved is another matter.I was given no advice about using the monitor manually to send in reports.

I also suspect that the fault was only reported (or picked up ) because I relocated the box and pressed the reset send report button at around the time the hospital picked up the fault!

It's very unsettling, and I have lost confidence in the device. I want effective monitoring for a whole host of reasons. I don't want the device to have to shock me, but if it can help in spotting early rhythm irregularity or change then that must be a good thing. If the hospital has the capacity to monitor or act on the information.

[Dragonfish in reply to Chinkoflight]

Sorry to hear about your damaged lead, I hope that can be remedied easily. Sounds like you had yours from day one. I have not been given anything yet. Good to ask questions around how often it supplies info and what they do or don’t do about it! Thanks for your thoughts.

[L8Again]

Monitoring might well depend on what the Pacemaker has been fitted for. My wife had an ILR fitted in October last year which came with a bedside monitor. It failed to phone home on a number of occasions. A month later, after a two further prolonged heart pauses, she ended up in hospital and had a pacemaker fitted. This didn’t come with a monitor. Following her 6 week Pacemaker check she is now on an annual review.

She is still waiting to have her ILR removed: the slightly concerning thing is that from a cost point of view the monitor cannot be paired to another ILR. We would told to put it into a WEEE skip for recycling. One has to wonder why the NHS is agreeing to buy monitors that cannot be re-used (even if there was a small cost to change the SIM card).

[Dragonfish]

Hi I hope your wife is doing well. I have heard of some people who do not get the ILR removed, as it is less hassle to leave it where it is. Does seem mad about the inability to recycle stuff! But that is also true of a lot of other medical aids, such as walkers etc. ( My mum had a lot of things to support her at end of life but the only thing taken back was the special bed). I suppose there are issues with hygiene and suitability, but does seem wasteful.

[Qualipop in reply to Dragonfish]

I've had the same problem with mobility aids like crutches and wheelchair. They just don't take anything back because everything has to be sterilised.The only thing I've known them to take back is a stairlift.

[Dragonfish in reply to Qualipop]

Yes, must be not worth it, unless it is a major item.

[Deejay62]

I was given a home monitor when I left hospital. 6 monthly I go to have my device checked and 6 monthly they do a home monitor download. If I’m out of the area it’s not worth taking it I was told because whatever hospital I go to won’t be able to download from it, only your hospital can do that. I was told to let them know if I’m out of the area for a long time.

[Dragonfish in reply to Deejay62]

Thanks, 6 months sounds straight forward!

[Qualipop]

My friend's husband has one. The monitor is completely automatic. IT just sits by his bed; they talked him through setting it up. He doesn't have to do anything at all. They have contacted him just once in 2 years when he was getting odd readings. If they want to go away on holiday for a week or so there's something he can take with him. I'm not sure of the details since at 89 he doesn't really go away

[Dragonfish in reply to Qualipop]

Thanks, an automatic reading and just alerting if notice anything untoward sounds sensible.

[Qualipop in reply to Dragonfish]

You won't even be aware of it once it's set up.

[timetabler]

My understanding is that the gadget (I have a Medtronic 24960) monitors the PaceMaker (when it's within range, Bluetooth) but does NOT send back readings to the hospital all the time. After all, if 70,000 PMs are fitted each year in the UK, even computer monitoring would be difficult if constant. Instead (my understanding is) if I report any problem by phone to the hospital they can ask me to press the central button and THEN it sends to the hospital a report on recent activity.

[Dragonfish in reply to timetabler]

Hi yes, mine is a Medtronic, Azure PM so presume any monitoring device will also be Medtronic. Yes it would be impossible to keep trace of all those readings!

[polenta]

I have a bedside monitor and they run a check every 3 months while I am sleeping, I go in for an in office check once a year.

[Dragonfish in reply to polenta]

Thanks good to know.

[Hidden]

Hi as previously mentioned its not a daily download, it flags up issues and downloads info if required or you can do a manual download.In my case mine hasn t downloaded since 15th of Jan which was a manual download by myself since my ICD started alarming at 08.06 every morning since then it has sat quietly like a coiled spring waiting..... And waiting and waiting

[Dragonfish]

Hope the January alarm wasn’t anything serious? Did someone contact you to explain what that was about?

[readyabout]

Hi, I had a PM fitted 8 weeks ago, when leaving hospital after the proceedure I was given a remote monitor, I was advised that the PM send info to monitor (not sure when) and monitor sends info on to hospital each night sometime in the early hours, it is on any mobile network.

[Dragonfish]

Thanks that sounds like several others, and not onerous, which is good. If it just alerts them if there is an issue or you can request them to look at readings if you have an unusual experience, that is good. I think I originally had concerns about having to do daily downloads which it seems is not the case.