Home monitor

Not a good time

by piglet22 - 2023-08-14 06:40:25

You go in for one thing and come out with a couple of others.

It would help to put some information in your bio.

I can only speak for Medtronic and UK.

There doesn't seem to be a shortage of home monitors. I had the first one about three years ago and when that one went awry, got another quite quickly through the post.

At first, I thought it was a good idea, but I'm not so sure. In the UK, remote monitoring has taken the place of routine face to face clinics and you now get an appointment for "Virtual Device Clinics".

The Medtronic marketing stuff refers to home monitors freeing up time so that the medics can concentrate on the patients that need help or something along those lines.

I thought we all needed help and in any case, I quite enjoyed a day out at the local clinic and I'm sure the technicians doing the tests quite liked to meet their patients now and again.

The last time I saw them in the clinic for a rate adjustment, the mood had definitely changed and not for the better.

Going back to shortages, when the first one failed through what was probably a trivial fault, I asked them what I should do with the broken one. "Dispose of it" the answer. You see MyCareLink monitors on eBay at £30 each.

pacemaker remote monitoring devices

by Gemita - 2023-08-14 06:40:31

Jules, first of all, many of us are still not monitored.  Until quite recently, my husband who has signs of heart failure and extensive heart disease was not deemed a high enough risk to warrant frequent monitoring, whereas I with high rate atrial and non sustained ventricular arrhythmias was given a monitor to keep a closer eye on things.

As far as I have been told by my London, UK hospital, if you have a significant arrhythmia which needs watching, they may need to monitor you frequently, but for the majority of us who have pacemakers for heart block or sick sinus syndrome which is fixed by a pacemaker, there is usually no immediate concern/danger and periodic (every 3 months, 6 months or annual checks) are all that may be needed.  So to answer your question, depends on whether your clinic deems you to be at risk and if this were to be the case, you would probably have been offered an ICD in any case.

Most of us have monitors because it can save time and money travelling to the hospital and save hospital doctors' time seeing us in person.  Unless our monitors flag up something significant, any downloads/transmissions would probably not always be actioned anyway.

So do you have a need for frequent monitoring or for a life saving device like an ICD for a significant arrhythmia?   If the answer is no, you can probably afford to relax and wait for that monitor.  In the meantime, you could use home monitors like blood pressure monitors, Kardia Mobile, Smart Watches to record any disturbances and symptoms you may have and then send these to your clinic for interpretation.

Home monitors

by Jules65 - 2023-08-14 07:42:59

Thanks for your comments, useful to hear your differing experiences.

I have been told that I need a home monitoring, I live in Cornwall where all NHS services are tightly stretched, so maybe the decision to home monitor , is made partly to ease face to face demand, not just clinical need, I don't know. 
 

I think the data  collection at  my next apt with be most telling, as I'm certainly noticing periods of what I think is arrhythmia.  
 

I've been told that I can't buy a home monitor but maybe an alternative device as is suggested could be useful but I wonder if the pacing technicians would use that data. 
 

it's good to touch base on this forum, thanks. 

Home monitors

by Gemita - 2023-08-14 07:59:28

Jules yes a technician/cardiologist or EP could certainly use the data produced by any good home monitor, like the Omron blood pressure monitor, an Apple Watch or a Kardia Mobile.  I am in the UK too and they frequently recommended prior to my pacemaker that I use such home monitors and to take the evidence to them!  So investing in say a Kardia monitor would give them good information.  I have recently purchased a Kardia 6 Lead monitor.  A bit pricey but produces excellent ECGs with no significant interference from my pacemaker, although some members often report interference with home monitors.   Otherwise go to your GP and ask for a Zio Patch (if available on the NHS) or for longer term monitoring to capture what is going on . . . or ring your EP and ask to go back to the clinic to have your device interrogated?

If you are ever in trouble, go to A&E and their Cardiac Department can be called to do an emergency interrogation of your device, if appropriate, so there are lots of potential options.  But if you feel unwell, seek help

Backlog

by Lavender - 2023-08-14 12:33:15

Here in the USA, there has been a backlog of maybe three months getting home monitoring devices. 
 

I was sent home from the hospital with one when I got my CRT-P two and a half years ago. But, the dr wasn't ready to turn it on until after six weeks. 

Doesn't seem right

by Mae11 - 2023-08-14 13:19:10

That's sure a shame! I have had a monitor since the day I went home with my initial placement, a St. Jude. It was swapped out for a biotronik after only about a year and a half. I brought my old monitor with to my new placement, thinking it could be reused, and was told they wouldn't.  I received a new one for the biotronik as well. 

Home Monitoring

by Penguin - 2023-08-14 15:36:45

Hi Jules, 

Many of us survived just fine without home monitoring for years before the 'boxes under the bed' arrived. We rang the clinic if we were concerned or if we had symptoms. That system is still active and most clinics encourage you to call if you are concerned - just keep a note of your symptoms and the time / date or (if symptoms are serious) go to A&E.  Your clinic can invite you in and take a look at what was going on at the time you experienced symptoms if you have the date / time. 

If you already have a pacing appointment set up for September, you don't have long to wait before your device will be interrogated. That sounds pretty prompt to me.  Ask about how regular your pacing clinic appointments will be if they still don't have a monitor to provide to you in September.  As stated previously, It depends on your diagnosis and the stability of your condition but as a rough guide people used to get pacing clinic appointments either annually or every six months in the UK (routinely), but more frequently if more in depth monitoring was required.  

I wouldn't be too concerned. 

Local differences?

by atiras - 2023-08-14 15:43:19

I do wonder how much depends on your local NHS trust. I had my latest PM installed at the QE Birmingham because that's where my cardiology team is based. I walked out of the hospital with a home monitor (St Judes/Abbots Merlin@Home).

However I  know my local trust (Swindon and Wiltshire) only provide home monitors for ICDs. I declined the offer to transfer my monitoring to Swindon not only because I wanted to keep all heart related care in one place but also because I knew Swindon would just do a annual face to face review.

When I go to the Pacing Clinic for my first check up, I shall ask if all 'ordinary' pm recipients get monitors, or only the ones that live some distance away and/or only the ones who come under the heart transplant team.

Atiras

by Penguin - 2023-08-14 18:58:35

I walked out with a monitor from a different Trust to you - albeit some years ago now. I was also told that they had no facilities / staff allocated to home monitoring and it was likely that the monitoring would not be done. That was unwelcome news and begged the question 'why put in a device capable of home monitoring if you can't do the job?'.Covid changed that, and I understand that the Trust started to re-consider home monitoring and the way in which it is used. 

I am currently quite sure that my Trust monitors my device, however I've never been sent a copy of any downloads. Our US peers receive a copy of their remote transmission reports / downloads.  This would be helpful.

I've also seen comments on this forum from UK patients who have been on long overseas holidays (longer than the standard 1-2 weeks away) and who have been without their remote monitor for these long periods. Their pacing clinic hasn't phoned to check what's happening despite their remote monitoring being out of range. 

It would be interesting to know how individual Trusts handle home monitoring. - how often it is carried out and how the results are communicated to patients.  I'm sure there are regional differences and that staffing levels are another factor.   Possessing a monitor is only part of the equation. The monitoring itself is every bit as important! 

Penguin

by atiras - 2023-08-15 16:38:44

My experience with Swindon was in 2022, so their stance didnt seem to have been changed by covid.

Covid & Home Monitoring

by Penguin - 2023-08-15 17:31:55

I'm sorry to hear that you have to attend at Birmingham to receive home monitoring, but if you are happy with all aspects of your care there and unhappy with Swindon's offering perhaps Birmingham is the best option for you. Swindon's stance certainly seems to confirm your suspicions about regional differences in policy re: home monitoring.  Perhaps Covid had less impact on policy in some areas? I can only speak from my own experiences.  

Penguin

by atiras - 2023-08-16 16:24:40

Birmingham is where I received my heart transplant, and where the aftercare takes place. I really didn’t want to split my cardiac care between two trusts especially as Swindon would have to get the agreement of the Birmingham team to anything other than minor changes to settings.