Medtronic BeConnected

My experience

by Gemita - 2023-05-02 09:51:50

Hello Piglet,

I have had mixed success contacting Medtronic, depending who answers the phone and what I needed to know.  They are able to give general info on sending transmissions and dates of transmissions, how to set up our monitors, troubleshooting and things like this, but of dear, get onto the subject of what settings have been set up, asking about any histograms of high heart rates and total % arrhythmia burden and things like this and I didn’t get very far.  

I was told to go back to my pacemaker clinic for advice and if they couldn’t answer my questions, my hospital technician could contact the specialist Medtronic rep for assistance.  I then asked if I could speak directly with the Medtronic specialist rep and they said no!  

How is your Ectopy research going.  Are you trying to compare data with what is set up in your pacemaker?  Your research is of great interest and I hope you will explain your findings in due course.  Feeling our heart rates dropping below our lower rate setting during ectopics is familiar to many of us.

My understanding is that my ectopic beats are sadly set up to be firmly rejected for storing or ECG recording, although a percentage ectopic burden can be reported on, but depends on what parameters have been set for your ectopics?   I would ring Medtronic or your pacemaker clinic.  You never know, you might be lucky Piglet and get the info you need? Please report back.

Fortunately I am able to get good information by emailing my pacemaker clinic with any technical questions I may have.  Have you tried doing this Piglet?  I try not to bother them too often, but they are usually helpful and respond promptly.  I am having so much trouble getting copies of my data, even though I have requested access formally

Gemita

by piglet22 - 2023-05-03 06:23:55

Thanks for that information.

There's a big difference between our UK experiences and that of our friends n the US.

It's hard work here trying to get information and I'm not surprised you got the thumbs down from your request to speak to Medtronic directly. I suspect it's something to do with maybe undermining trust in our consultants.

I'm mulling over whether to contact the BeConnected number which is something like 008** and looks suspiciously like a non UK number and I doubt that I will get anything useful.

They have a contact form which I used, but it refused to be submitted.

I don't think my PM has Bluetooth (EN1DR01 Ensura MRI) and later devices like Azura can use the Medtronic app which might have been useful.

It's not looking good. I'm getting quite long episodes, particularly in the evening and night time. 30 to 40 bpm can last for hours and it's still another nearly 8-weeks before I get just the phone call.

I wanted to ask my GP surgery what the risk were of waiting so long, but they have introduced a new online service (Anima) to put questions to GPs. It went live today (Weds) and already says full to capacity. It's no better than the old system or maybe they thought that closing the old system on Tuesday following a bank holiday might be a quiet day.

I watched the TV programme "GPs behind cosed doors" last night and even on there they were telling patients that waits to see specialists are typically 6-months.

The NHS is in a worse state than I can remember ever before with cancer and A&E nurses still threatening strike action. Not all nursing unions have accepted the pay offer.

It's all very disappointing.

As for the actual problem, "PM working fine" and feeling not fine, I've no doubt it is working fine. My take on this is that the ectopics, probably PVC or PAC, are fooling the PM into thinking everything is OK and it's not kicking in when it should, leading to longish pauses when you feel your pulse.

It was so bad last night that the oximeter that isn't good at picking up the low bpm, actually spat out 33 bpm. I think it uses some averaging routine, but seems to get stuck on whatever rate it picks up first.

The true measure of what is going on, the irregular and low heart rate, the light headedness, the chest sensations, is what you feel at your wrist.

I'm looking at all possible ways of getting a recording of my true circulating heart rate. I found someone who had managed to get a recording using his mobile phone microphone on his carotid artery. Other more scientific methods using pressure sensors at the wrist record quite nice waveforms and can distinguish various defects including arrhythmia.

I may be wrong, but I don't think the PM reports anything other than periods of AF. It did once, but that was at the clinic, not MyCareLink.

The bottom line is that our health system is nearly clapped out and the things we used to take for granted aren't there anymore.

Provided these episodes aren't dangerous, I might even ride this out until replacement is due in about two years.