Pacemaker Home monitoring

I promised to do a post on this subject.  Some members have expressed a wish to know how many of us receive pacemaker home monitoring and the frequency?   I see Tracey_E has kindly set up a Poll for all pacemaker/ICD members.  You will need to log on to see the Poll and to cast your vote.  

I am in the UK.  I have home monitoring but my husband does not.  I therefore took the opportunity today of asking the cardiac technician during my husband’s pacemaker check, what the policy was for home monitoring at his hospital.  She said King’s College Hospital only provides a home monitoring service for defibrillator patients, not for pacemaker patients, although they could clearly see benefits for elderly, frail patients with pacemakers who found it difficult to attend hospital for their annual checks.

It seems some of my local hospitals have supported giving out monitoring devices during Covid lock down to vulnerable elderly patients who were encouraged to stay away from hospitals.  I hope this practice continues.

The technician confirmed that should my husband become physically unable to travel to hospital for his annual checks, he would receive home monitoring, but for the moment they wanted to continue to see him in clinic.  I will discuss this further when we see his cardiologist since with his right sided heart failure, I would feel safer if he had home monitoring to pick up early problems, to guide treatment and to help automatically record and flag up any adverse events or warnings.  We would also be able to make automatic downloads when he felt unwell.

I appreciate Pacemaker Club members live in different parts of the world where home monitoring practices will differ.  My question for members with pacemakers only (not those with ICDs since I am assuming you have  home monitoring?) is would it concern you if you only had one annual in person check at your clinic and no other form of regular monitoring of your pacemaker?  If so, what would be your main concern?  Thank you.


38 Comments

home monitoring

by new to pace.... - 2022-04-19 22:32:54

Thank you Gemita and Tracey_E for doing this poll.

I have a Medtronic carelink home monitor which sits on my bedside table next to my bed.  I understand it sends nightly reports sometime between midnight and 3am.  I also go into the clinic annually  around the pacemaker implant date.

I like the that if i need to can always send  a transmission in.  So far have not had to do it.

Was told the nightly reports are monitored by someone in a distance place.  And the report sent to my cardiologist for her review daily. Cannot believe with all the patients she has .  Has the time on a daily basis to look over everyones.  Do recall reading that she has a specfic event that she looks at . Not all of the events.  Not really sure that happens daily.

As had many Afib episodes  and long ones in one month no concerns.  Then had one and a short one, was   notified.

If this works  as it should glad to have the nightly transmissions. 

No i do not think once a year is good.  As it can be to late to find out something is not right.  

new to pace

Monitoring

by AgentX86 - 2022-04-20 01:24:36

As I've said in the past, I have four interrogations a year, two in-office and two via the remote box (now app).  I don't think I'd feel good about one a year at all.  Just the batteries need to be checked more often than that (particuarly since mine has been recalled for a fast, random, battery depletion).  The app sends a transmission immmedietely on ERI or EOL and I can initiate a transmission at any time I feel it necessary.  I don't have to be close to the bedside box.  The app is a great improvement but the bedside box is also useful (it's all we had until recently). No remote reports?  I don't like that idea at all.

All transmissions are not sent to your EP, only those of interest to your EP. As you say, there is no way they can decipher every one. They are screened by your PM manufacturer before being sent on.

 

I can only see benefits too

by Gemita - 2022-04-20 08:37:23

New to Pace, AgentX86, thank you both for your helpful comments.  I am going to have to try to change things for the better for my husband and for others like him who will need that little bit of extra care to stay well.   I will write to King's College Hospital formally and ask for a response.  If and when I get one, I will post it in the gallery, or copy and paste it on to a New Message. 

I can only see benefits too from home monitoring in terms of cost, time, human resources since more frequent in clinic visits to see a cardiologist, a technician, the GP or to visit other services like A&E/ER are in my opinion more expensive and not as effective as being regularly monitored to try to pick up a problem earlier when it may be more amenable to successful treatment.  Prior to every appointment, our National Health Service (NHS) warns patients that a missed appointment costs the NHS about £130.  Missed appointments are often due to work or family commitments, forgetting, transport or weather difficulties, frailty and sickness.  Home monitoring could overcome these sort of problems

Only benefits for us, the patients, but there's a cost

by crustyg - 2022-04-20 09:24:10

I was lucky enough to have private care for my two ablations and PM, but someone slipped up (probably) and didn't order the remote monitor when the PM+leads were ordered.  The local NHS kindly provided one (that's my follow up now), complete with perpetual Vodafone cell-dongle and Ethernet connector.  In the BostonSci world, the registered device connects to the remote monitor every night, very briefly, but the monitor only sends data on to the server run by BostonSci if there are Alerts (not Events, apparently).  BostonSci include this nightly transmission in their battery life statements.

I can imagine that BostonSci's charge for the remote monitor probably includes the charge for the receiving end (much simpler than collecting annual subscriptions), but I have no idea of the cost of the unit.  In the NHS use of these varies widely: in the Manchester area they were admitting that they had been slow to provide any remote monitors for patients for whom the cost/inconvenience of attending the Big Hospital was substantial.

My EP-doc tells me that I'm at risk of more atrial arrhythmias, and given the damage done by the second 6months of AFlut, perhaps he was able to justify remote monitoring on that basis.  And then there's the need for starting anti-coag as soon as the atria misbehave again, and avoiding this (by remote monitoring) would make sense.  I don't think I've seen a NICE guidance on remote monitoring, but I'm sure that it all comes down to money (in the UK).

I expect you are correct

by Gemita - 2022-04-20 09:56:33

Crustyg, thank you.  I did try looking for the NICE guidelines and could only find a Medtronic 2016 link and at that time the list price of the CareLink network service, including all components and software was £970, excluding VAT per patient.  Yes you are probably right it comes down to cost, but I still feel it is likely to cut costs longer term, but the initial outlay will be steep per patient.

I can understand they want to catch any Flutter/AF early and get you on appropriate treatment as soon as required and that is certainly an indication for your monitor.  I feel my husband has an indication also although he is clearly older and less productive than you are, so that might be against him.

https://www.nice.org.uk/advice/mib64/resources/carelink-network-service-for-remote-monitoring-of-people-with-cardiac-devices-pdf-63499286993605

An Unnecessary "Benefit" for Many Patients

by IAN MC - 2022-04-20 10:03:08

If a pacemaker recipient has a perfectly stable sinus rhythm after PM implant , I believe that yearly checks, without any home-monitoring is a sensible use of NHS funds. 

Benefits always need to be costed.  As an extreme example ,If every major road in the UK had a central crash - barrier , without doubt lives would  be saved but the costs would be ridiculous.

I would  probably refuse home-monitoring if offered it  as I believe that  there  are better ways of spending money on my health. If I suffered from arrythmias I may think differently.

Ian

Home monitors

by Aberdeen - 2022-04-20 14:17:02

I have a Medtronic home monitor. Two and a half weeks ago I received a phone call from the Pacemaker clinic saying that they had received anomalous readings from my pacemaker. At the Pacemaker clinic the next day I was told that the RA and RV leads were failing and were draining the battery(I have a CRT pacemaker)

9 days later I had a lead removal and replacement. 
Without the home monitor what would have happened?

I don't know the cost of these monitors but I am glad I have one!

An unnecessary benefit for many patients?

by Gemita - 2022-04-20 14:27:17

Somewhat agree with your headline message Ian.  We need to have a strong indication for home monitoring, at least this has been my experience here in the UK, to receive and benefit from a monitor.  This could be for ongoing symptomatic arrhythmias that need controlling, for syncope, for the monitoring of heart failure symptoms and medication treatments, for the monitoring of a faulty device, rare I know, but it does happen, and things like this.

I think also we need to decide what we will do with the data/information when we receive it to truly benefit from it and not just to monitor for the sake of monitoring.  I can remember my cardiologist getting very annoyed with me when after a few months of implanted Reveal Linq monitoring I initially refused anticoagulation for AF stroke protection, even though monitoring data strongly pointed to the need for treatment.  He said he was unable to help me with further treatments (ablation and or pacemaker) unless I started anticoagulation immediately.   

For me though, monitoring has been an invaluable tool and has taught me so much about the nature of my arrhythmias and how to treat them successfully. Without monitoring, I wouldn't be this far ahead

Remote Monitoring

by Marybird - 2022-04-20 17:46:05

While I guess I can understand that regularly scheduled remote monitoring is most likely not necessary for everyone with a pacemaker, depending on the reasons they have the pacemaker, I have to be grateful for the surveillance I've had over the nearly three years with my pacemaker. According to the EP I saw for treatment of SSS, and who implanted my pacemaker, my history of atrial arrhythmias is exactly why the remote monitoring ( every 90 days) was set up as it was.

Thing is, if nothing happens within the monitoring periods, no arrhthymias, pacemaker is working well, etc etc, and this goes on for a long period of time, it's easy to conclude that the monitoring isn't needed. I guess it's the possibility for missing an actionable event, with an adverse effect for a patient at risk that drives the remote monitoring bandwagon.

I'm of the opinion that patients with pacemakers should have at least a monitor to use for manual transmissions to their clinics/doctors in the event something seems to be amiss with the pacemaker or them. I'm thinking that even if they're stable, no issues with their hearts or devices, there is always a remote possibility ( and they got the pacemakers for SOME reason) that something might occur that the clinician should know about. The once or twice yearly in-office checks are good, but we've seen that system falter or break down when patient appointments were postponed/canceled repeatedly over the covid covid covid all the time drama over the last two years that pushed routine healthcare either to the back of, or right off the bus. I see there were a number of complaints about this about the British NHS, but it also happened here in the US in any number of places. Patients without access to their healthcare providers, and no monitoring/transmission devices under such circumstances would be literally stranded in the event something happened where they needed attention. If they had remote monitoring/transmission devices, they could at least transmit their data for evaluation by a healthcare provider- without an in-office visit.

I've attached links below ( to Medtronic and Abbott/St. Jude websites) for their publications which tout the advantages to patient cardiac device remote monitoring. Seems to me that the Abbott website has more information about the topic, though I think it'd apply to folks with cardiac devices of any make or model. The articles discuss the advantages of remote monitoring in terms of 1) providing care to patients in the event of pacemaker actionable alerts, sooner than the patient would otherwise get the care, possibly avoiding serious adverse issues to the patient, avoiding hospitalizations, etc, and 2) overall cost-savings associated with fewer in-office monitoring visits, reduced office overhead ( personnel, supplies) over time.  There are additional links on the St. Jude sites which explore the issues around remote monitoring. I noted a couple of "case studies" for individual patients who benefitted from remote monitoring. One was a guy who had paroxysmal afib noted on a number of remote reports, this was new for him, and he was asymptomatic. They put him on an anticoagulant, based on continuing paroxysmal afib episodes, but it was determined he didn't need an antiarrythmic drug based on the frequency and duration of his afib. Well, that guy could be ME, as exactly the same thing occurred, with my remote monitoring reports showing short runs of afib, then some afib of longer duration. For me they upped the metoprolol I take in response to those reports, and after the longer episodes they started me on Eliquis. Both my cardiologist and his PA take what I call a "victory lap" around the office when I see them, saying they never would have known about my afib without those reports, and with my risk factors, I could have had a stroke. Perhaps a one year in-office device check might have caught it, but it would have been significantly later and a number of episodes past when they actually did find it. So I guess I am a believer.

Perhaps something, someday, can convince the NHS ( and anyone else) that remote monitoring is worthwhile, in terms of better patient care and/or cost-savings over time, for their patients with implanted cardiac devices. The articles linked below discuss the topic, and their findings. There are also a number of good references in the bibliographies of the articles.

https://www.remoterhythm.com/medtronicwirelessmonitor

https://www.medtronic.com/us-en/patients/treatments-therapies/remote-monitoring.html

https://www.cardiovascular.abbott/content/dam/bss/divisionalsites/cv/hcp/products/cardiac-rhythm-management/assurity-mri-pacemakers/documents/using-remote-monitoring-a-practice-value-case-study.pdf

https://www.cardiovascular.abbott/content/dam/bss/divisionalsites/cv/pdf/reports/Abbott_26254_CRM_WhitePaper_r2_Zinc.pdf

https://www.cardiovascular.abbott/us/en/hcp/products/cardiac-rhythm-management/pacemakers/assurity-pacemaker/case-studies.html

In looking at these articles, it's also occurred to me that there is some pretty good information there about how remote monitoring actually works!

Thanks, Gemita and Tracy, for undertaking this remote monitoring project and questionnaire.

Mary

Aberdeen

by Gemita - 2022-04-21 03:53:47

Thank you so much for your contribution to this thread.  If evidence was needed of the usefulness/importance of home monitoring I couldn’t have asked for a better example than yours.  I believe having CRT due to a sudden critical fall in ejection fraction is an indication for home monitoring in the UK, or certainly should be, to help monitor the condition and to frequently review any treatments you are receiving so that any necessary changes to your care can be made quickly.  I hope your new leads and recent intervention work well for you and give you a chance to heal and to get back to a quality of life.

Marybird

by Gemita - 2022-04-21 05:24:00

Mary, thank you for your valuable contribution to this thread and for all your hard work in finding those links.  This is exactly the point of permanent monitoring:  to pick up what shorter term monitoring often fails to do.  How many of us have suffered time and time again the frustrations of external 24 hour, 7 day or longer monitoring (at great cost to our health services too) when our arrhythmias are only intermittent and difficult to pick up.  How many of us were told all was well in the past until we got a stroke from an undetected episode of AF?    

As you say permanent home monitoring will clearly give our doctors vital information that will be flagged up well before our scheduled in clinic appointments to check our pacemaker downloads.  This could clearly save our health systems a lot of money in the future treating stroke patients due to undetected arrhythmias like Atrial Fibrillation.  Also human suffering would be avoided too.

I agree in an ideal world those of us with pacemakers would benefit at least from having a simple hand held device which they could pair with their smart phones to send a transmission to their clinic for analysis.  Things go wrong with devices/leads too sometimes, see Aberdeen’s worrying contribution above.

Like you, I found permanent monitoring invaluable in detecting intermittent arrhythmias which could so easily have led to a stroke.  Now that I am stable and receiving appropriate treatment, there is no need for nightly monitoring but I do have a hand held device that can be used anywhere and at anytime when I have symptoms which I feel need assessing.

Yes I hope things will change for the better in the future Mary.  We have the technology, so let us use it to learn more about our heart rhythm irregularities, their treatments and how we can best work with our doctors to try to find a cure.  Studying my arrhythmia behaviour consistently over a long period through permanent monitoring has helped me and my doctors to treat my arrhythmias/symptoms more effectively.  I am no longer a burden to the NHS requiring frequent A&E attendance or pacemaker clinic help.  I am managing on my own well now, my arrhythmias are calmer and less frequent.  I hope for the very best for you too Mary.

home monitors

by Tracey_E - 2022-04-21 09:26:43

I believe I've been paced a lot longer than most of you. I had 4 without home monitor, just this last one with. One day I had an episode. In the past, I would have called for an appointment, they would have worked me in, the pacer rep would have been called in, and he'd check the pacer, consult with the doctor. Now I hit a button and send an email to tell them I am sending it. That is considerably more cost effective for my insurance company than an office visit and pacer check and much less waste of my time. I've done this 4 times in 6 years which isn't much, but I suspect those 4 saved office visits more than paid for the cost of the monitor. Mine only reports quarterly, previously I would have had quarterly appointments. Again, considerably less cost to the insurance company and less trouble for me. Instead of killing a morning for an appointment, I get an email. 

home monitors

by Julros - 2022-04-21 13:20:53

My wish is that the decision to have a home monitor should be discussed with the patient before it takes place, as wel as the frequency. My dad had a pacer and had a device that we hooked to his phone twice a year and did an upload. He was seen in clinic twice a year.

I was presented with my Boston Scientific Latitude on the morning after implant and told to take it home and plug it in beside my bed. No discussion, no reason, other than "because we need to monitor you." And this was after a successful  atrial flutter ablation and remaining on anticoagulation. I repeatedly asked why I needed this continuously and no explanation was provided other than "because you do." In almost 3 years, it has never sent an alert, and it is scheduled to upload quarterly. I have reverted to atrial flutter with HB, and have no ventricular arrhythmias, and take only Eliquis. In my case, I see no need for continuous monitoring. 

 

Monitors

by Aberdeen - 2022-04-21 14:26:31

Each case is different. I know that in my case I wouldn't have known anything was wrong without the home monitor.

 It has opened a good discussion on the topic!

I wouldn't Have Known Either

by Marybird - 2022-04-21 16:25:56

Though they didn't ask me one way or the other about remote monitoring, and just set it up for a 90 day transmission, I can't say I knew enough about the topic at the time of my implant to even have a halfway intelligent conversation about it. I wouldn't have thought it was indicated for me either.

The afib episodes they picked up on those reports ( starting, I guess, around August of 2020) were new for me.  Tachyarrhythmias were not, I've had at least short episodes, sometimes episodes lasting several hours for a number of years. The events caught on monitors ( pre-pacemaker) were categorized as atrial tachycardia, NOT afib ( other than one episode of aflutter in 2015). So when I felt those kinda familiar palpitations and flutters I dismissed them as insignificant, particularly as they didn't usually last that long. 

So I was very surprised, perhaps my cardiologist was as well when the remote monitor reports started showing afib. Without those monitor reports, I'd have assumed I was just having more AT, and not have contacted the docs at all. As they said, we'd never have known about the afib without the remote monitor. 

Nomenclature or what constitutes a "monitor?"

by Gotrhythm - 2022-04-21 16:34:19

I looked at the poll, and wasn't sure any of the responses applied to me. I looked up "monitor" and discovered it is a device for keeping a continuous record.

The device I was given12 years ago is a  Merline@home transmitter. It is not in operation all the time, only after I turn it on and place the donut over my pacemaker. For transmission, I must sit down, place donut, and wait while it goes through an impressive (though essencially meaningless) series of beeps and lights. When everything stops, I'm done.

I send a transmission six months after my yearly in-office pacemaker check. Routine.

In 12 years, I have only sent an unscheduled transmission twice that I can remember. Both times I was assured my pacemaker was "working fine" and you know what I think of that!

Except for knowing that the battery is not draining too fast and the leads are intact (not small things!) I don't what value the Merline transmission might be to the cardiologist.

Would I be better served by more frequent or less frequent transmissions? I don't know and I have no way of knowing. I send the transmissions as a gesture of cooperation and good faith. So far, I guess it's been enough.

Gotrhythm

by Tracey_E - 2022-04-21 17:20:13

Devices such as Merlin are what we were thinking of when we devised the poll. So you can check the 3 months or less box :o)

The quarterly downloads tell them a lot of what the in-office visit would. We are keeping an eye on the condition of my 28 year old lead, the download gives them enough to let me know that it's still stable. I used to ask how much life was left, now "how's the lead" is my first question. 

Gotrhythm

by Gemita - 2022-04-21 17:46:12

Gotrhythm you ask a good question and I see Tracey has responded.  For me any device that has the capacity to communicate with our pacemaker and clinic is a monitor for the purposes of our Poll.  You clearly are able to transmit data as and when you need to.  

When you do an unscheduled transmission your cardiologist will look for signs of a pacemaker problem, a heart rhythm irregularity or for any signs of a potential health problem or a problem with your medication.  A trained eye can see a lot from your downloads Gotrhythm.

Of course your monitor is not new, so perhaps an upgrade would be helpful (if compatible with your present pacemaker) - something to ask your team so that monitoring in the future can be tailored to suit you better?

Gotrhythm - frequency of transmissions?

by Gemita - 2022-04-22 03:52:26

Your last question on ‘frequency’ of transmissions is an important one that I overlooked.  Of course, as you will appreciate, if you are having symptoms, then the more data you transmit at the time of your symptoms, the better your chances of identifying a problem and getting the help you need when you need it - the squeaky wheel gets the grease! 

I still keep dates of important events when I am really symptomatic to correlate any heart rhythm irregularities to my symptoms.  I only have a ‘hand held’ Medtronic reader device now which I can use at any time to transmit data.  I previously had nightly “automatic” monitoring for over 4 years which successfully caught and guided treatment for many of my disturbances. 

Since you have unanswered questions, I would ask your team if they could kindly explain what exactly is set up in your Merlin monitor, for example what checks or alerts are activated for you personally?  At the same time you could ask whether your current monitoring device and frequency of transmissions are adequate for you?  Time I think Gotrhythm for a review of your monitor

Julros

by Gemita - 2022-04-22 05:32:01

You say, “In my case, I see no need for continuous monitoring”? but I recall you have a genetic condition which can cause bradyarrhythmias, dilated cardiomyopathy (both of which you already have) and also sudden cardiac death.  I would therefore think the need for continuous monitoring is appropriate to help guide future treatment (like an ICD to keep you safe)?  I appreciate what you are saying though.  A meaningful discussion on why you needed continuous, frequent monitoring when you received your monitor would have been helpful and the right way to proceed. 

Home Monitor 24/7

by Stache - 2022-04-23 21:41:26

I am in the U.S. California and have a dual-chamber Abbot PM that is a blue tooth with a home monitor by my bed.  I have had my Abbot PM for 14-months now and had two incidents that required me to consult my heart doctor.  Once was very serious the other was me on my bike riding non-issue.

My PM is 100% pacing and continuously monitored by Abbot in Los Angles 500-miles from where I live and the data is sent to my doctor at Kaiser Permeate in Sacramento, CA which has a department that monitors my PM incidents.

When I had cardiac arrest early in the morning I woke up that evening with a dual-chamber blue tooth Abbot PM and a monitor. Of course, this happen during COVID and there was no discussion as I was in no condition to talk to anyone.  I do have a PM app for my Smart Phone that I have turned OFF just too much information that I don’t understand.

Abbot has a toll-free number I can telephone 24/7 and talk with someone about my monitor and the hospital pacer monitor office only Monday through Friday unless I am having an issue.

I believe too much information is not so good.  I felt my PM heart beating all the time for the first couple of months now only when I am totally still.  It’s difficult to accept being bionic but this is my new normal.

Too much information

by AgentX86 - 2022-04-23 22:23:10

It might be stuff you don't understand and/or don't care to but it may be information that your EP wants to see.  If the app is anything like the Medtronic app, it replaces the bedside box with the added advantage that it's "always" with you. I'd think that a good thing for someone with a history of SCA.

OTOH, I find that the Medtronic app is a heavy-hitter on my battery.

Medtronic CareLink Phone App

by Marybird - 2022-04-24 11:17:23

I'd read the phone apps for the Carelink monitors were battery drainers, this was one reason given to my daughter when the Medtronic techs/EP gave her a nightstand version of the monitor instead when she had her pacemaker generator replaced in the summer of 2020. 

On the other hand, my sister, who also had a dual chamber Medtronic pacemaker, used the phone app version of the monitor, and loved it. Apparently her phone would disable the Carelink app at night ( or whenever it wasn't in use, I'm not sure of when this occurred), considering it not an essential program and a high battery user. My sister was not aware this was happening until her doc's office called her, told her what was happening, and instructed her to turn the app back on. They also told her to check before she went to bed at night to make sure the app was activated. 

From reading some of the information on the Abbott website for setting up remote monitoring, it looks to me as though there are slso alerts, or notices when a patient's pacemaker has not communicated with the monitor for a specified length of time. The length of time for this may be programmable depending on the EP's request. Guess that's another reason for either taking your monitor with you or notifying your clinic when you take trips, LOL. 

Another question

by Gemita - 2022-04-24 13:11:05

Reference Medtronic MyCareLink Smart Patient Reader.  It mentions in the small patient booklet that "install the batteries before each use and remove them when the reader is not in use".  Well when I last needed to use my reader in a hurry, I couldn't get the batteries placed in time and by the time my transmission was made, my arrhythmia was well over, so I probably transmitted a period of blissful normal sinus rhythm instead.  Does anyone leave their batteries in all the time when not in use, or do you all remove them after each use?

AgentX86, Marybird, can I confirm which battery is depleted by the Medtronic App, ?the smart phone battery, the Patient Reader battery or the Pacemaker battery, or all three?  Mind you since I haven't been leaving my batteries in my Patient Reader, I probably don't need to worry.  I have given back my old Medtronic phone link which was originally set up for my Reveal Linq Monitor, but was paired with my pacemaker instead, so now I only have my MyCareLink Smart Patient Reader.

Stache, thank you for your comments.  Personally I think "more information" is always better than too little when we have a heart condition that needs monitoring.  We can always throw out the unimportant stuff which is what happens because our EP's set our pacemakers to answer their specific questions and nothing more.  We don't have to personally follow our monitoring, but it is always nice to know that if something doesn't feel right, we can get answers quickly.

Smart Phone Battery

by Marybird - 2022-04-24 14:36:43

Hi Gemita,

What we are referring to as being drained is the Smart Phone battery use by the Medtronic Carelink mobile app. It apparently uses quite a bit of energy from the phone battery when it's open, hence the phone's battery is depleted faster than it would be without the app.

As a battery saving measure, many mobile phones are set to automatically close or disable the apps that use a lot of battery power and/ or are considered nonessential for phone functions, when the apps aren't in use. The Carelink app is one of those, though any number of people who use those apps aren't aware that this has happened. When it does, the person's pacemaker can't transmit data to the app monitor, and of course the app can't send transmissions anywhere.

As I mentioned previously, this happened to my sister with her Carelink phone app, and she didn't know it until her EP's office called her to tell her that and instruct her to make sure the app was activated each night before she went to bed.

I wouldn't be surprised if this hasn't happened to a number of people, and I think perhaps the confusion with it has soured at least some Medtronic techs on the use of this app, at least in our neck of the woods for the elderly population with varying cell phone coverage, not to mention varying degrees of technologic saavy. I believe that is why my daughter got a nightstand type Medtronic monitor with her generator change rather than the app. 

Interesting that you're instructed to remove the batteries for your patient reader between usages. I'm guessing that's assuming infrequent use, and is probably a precautionary measure to prevent reader damage in the event the battery leaks ( as some do over time). But it would waste valuable time in the event you were having an incident that needed transmitting, to have to 1) look for the batteries- this would happen in our house for sure, 2) install the batteries before you could use the reader/transmitter. Still, I'd most likely take out the batteries if I had one of those. 

Battery drain

by AgentX86 - 2022-04-24 17:11:48

No, not the pacemaker battery (I hope ;-). There is no other monito.  The PM uses Bluetooth to communicate, then WiFi or call to transmit (cell service not needed) to the monitoring service.  It's  the phone battery that gets hit.  I don't find it that big of a deal because the Xi charging stand sits on my nightstand and it's long been a habit to put the charger on the charging stand when I change clothes. My watch and ear buds go on the same stand.

Navigation is a much larger drain on my battery, as is Android Auto (allows vehicles to run the phone, avoiding expensive traffic tickets). When I'm using those apps, I plug the phone into the dashboard, which then communicates via USB.

The MyCareLink instructions tell you to not use battery saving modes on the phone because they will aslo turn off monitoring, since the app runs in the background.  It starts when the phone starts so it won't be forgotten. 

The app gives time and date of all transmissions with a note that the transmisson was successful, and whether the  PM is connected to the phone. There are a few more things in there, like a diary to enter symptoms, and a bunch of likely useless things (physical activity tracking, manual entry of weight, BP, etc.).

All in all, I like the app but would like a few more features.  ...that I'm never  going to get.

Monitor

by Persephone - 2022-04-24 22:25:20

I regret to admit that I did not read this whole thread, but I was recently summoned to my EP clinic to bring in the existing monitor (for a Biotronik PM) and get a new one. The tech didn't actually have the new monitor on hand and told me he'd just send it to me and I could toss the existing one, but anyway, the new one is still a "dumb" device in that I cannot activate it to send any kind of transmission. Quarterly transmissions to the clinic are all that I know about.

Monitor

by AgentX86 - 2022-04-24 22:45:22

Persephone, these units need to be replaced because 3G cell service is being terminated all across the US. 3G is used for most of these sorts of things.  Cell companies had special rates for the ancient technology. Some units can have a 4G "stick" added but others require replacement.

PM monitors aren't the only things affected.  Several high-end cars purchased a few years ago have this issue.  Some manufacturers are fixing the problem but others have just said "sucks to be you". The issue is quite like the monitor issue.  Some  can get away with an inexpensive "stick" as above others require a complete radio relacement (a $1K or more, manufacturer's cost).

Marybird and Agent X86

by Gemita - 2022-04-25 02:53:45

Hi Mary, thank you so much. I appreciate you have provided similar information on numerous occasions already.  I suppose the truth is I knew what I had with the Medtronic phone monitor with all its faults - it was automatic, always ready and able to communicate with my PM nightly without any input from me.  Now I will need to take better control and liaise with my clinic about setting up dates for "scheduled" downloads, if and when required and be ready to transmit quickly when I need to.  The latter seems to be a problem with an idle Reader!  I will have a look at what is set up on my iPhone and adjust any settings accordingly to make sure transmissions never fail, while at the same time trying to preserve iPhone battery.  Yes I agree not something the elderly can always be expected to manage adequately.  It is a tall ask and Medtronic need to do better.

AgentX86, I have attached a link of the monitor (Reader) I was given at my last check up.  This is all I have as hardware for monitoring together with my iPhone and iPad.   Is this the model you have?  I use my reader so infrequently these days (a good sign I suppose of a well behaved heart) so I haven’t really explored its potential.  I suspect the Medtronic App depletes more than my iPhone battery, since I keep getting a black screen with my iPad too despite frequent charges (battery still good apparently).  I think I will delete the App from the iPad, since I mainly use my iPhone to transmit data.  

https://europe.medtronic.com/content/dam/medtronic-com/xd-en/hcp/documents/digitalhub/cardiac-rythm/managing-patients/remote-management/mycarelink-smart-patient-guide.pdf?bypassIM=true

Monitor

by Jdky - 2022-04-25 10:12:19

I'm located in the US. I have a Medtronic unit. 100% paced for sometimes CHB, sometimes 2nd degree. I have the Medtronic app on my phone. I've had my device 2 years and my "metrics" have been stable. I see my dr about 2x/yr and send in remote checks about 3x/yr. My dr wants to continue seeing my more than once annually because he has lowered my pacing voltage and duration in an effort to conserve battery. He felt it was not too risky because I have good underlying rhythm and again my metrics have been pretty stable. Considering the lower safety factor he has in my settings, I am happy seeing him as often as I do. I also appreciate having checkpoints for such an important thing.

Reader

by AgentX86 - 2022-04-25 12:10:32

Gemita,  No, there is no reader.  The connection is directly from the pacemaker to the cell phone using Bluetooth.  The cell phone then connects to the Internet via either cell or WiFi.

I suspect that this is used for cell phones that don't meet Medtronic's requirements (certain models that have been tested). This is why I tend to buy hardware that's very common.  More stuff is compatible with it, from Mickey Mouse cases to pacemakers.  ;-)

Record?

by AgentX86 - 2022-04-25 18:21:04

Is 31 comments (now 32) comments a record for PMC? ;-)

A record perhaps !

by Gemita - 2022-04-25 19:28:48

Last long thread was from a member who wanted to programme his own Micra and we all got a bit heated. He reached 31 comments.  

Monitoring is obviously important.  I think it makes the majority of us feel cared for and safer knowing that our hearts are being monitored while we get on with our lives.  Thank you everyone for your responses 

Marybird, AgentX86, ar_vin

by Gemita - 2022-04-29 12:33:48

I have just heard back from my Pacemaker Clinic and I quote:

"Dear     ,  

Unfortunately your pacemaker isn’t able to directly connect to the Medtronic MyCareLink App via Bluetooth. This is due to the model of your pacemaker.  Your iPhone is compatible and you have an account set up.

It is for this reason that you need to use the MyCareLink Smart reader;   this is what connects your pacemaker with the App.

Any further questions, please do not hesitate to contact us.

Best wishes, Lucy"

Thank you Marybird, AgentX86 and ar_vin for all your help.  At least I know where I am now with home monitoring.  

Pacemakers That Need Readers

by Marybird - 2022-04-29 17:52:00

Thanks for the update, Gemita. What your clinic is telling you is that your pacemaker is not equipped with wireless, or "Bluetooth" technology which would enable the pacemaker to communicate directly to a monitor to which it was paired ( either a nightstand monitor or a phone app monitor). 

So your pacemaker data is picked up by the reader when you place it over your pacemaker site and follow instructions to activate it ( just like an in office device check). 

What you have, from the description, is Medtronic's "My Carelink Smart Patient Monitor", which is a reader that has wireless Bluetooth capability and can be paired via your phone or tablet with a Medtronic app that serves as a monitor. In this case, your pacemaker data collected by the reader can be sent via wireless transmission to the app, which collects that data and sends it to the Medtronic secure website for access by your clinic. 

Medtronic also has their "My Carelink Patient Monitor", which consists of manual reader to collect pacemaker data when initiated by the patient, and a base "station" which is plugged into a phone line, ( or perhaps some of them are are hooked via cell phone access, not sure which). The readers in this type monitor don't have wireless capability, so must be plugged into their phone communication bases to transmit pacemaker data to the secure website and access to the clinic. My daughter had one of these monitors with her first Medtronic pacemaker, and I don't think she used it much, though she did have semiannual in office device checks.

So I guess either of the above monitors could be used with pacemakers that don't have wireless capability, but it would be needed for direct monitor ( tabletop or app) transmission without a reader.

I also wanted to comment on how much I learned about pacemaker transmissions, monitoring from this thread.  I hadn't realized that there are to this day, options for either bluetooth enabled, or not, pacemakers available from multiple manufacturers. I knew, ( sort of nebulously, perhaps) that there were quite a few different types of cardiac device monitors, but finding and reading about them, as well as reading others' experiences with their monitoring, has made the topic make more sense to me.

I still laugh when I think of Tracey keeping her monitor stashed under her bed wrapped in a towel so she doesn't have to look at it. I've thought of doing that but we have a platform bed which is too low to fit the monitor ( a Merlin@home, rather sizeable as those things go). I've settled for draping a sock over the power light at night. 

 

Home monitoring

by Gemita - 2022-04-30 05:21:34

Marybird, thank you for your helpful comments as always.  Yes four years ago I clearly wasn’t given a Bluetooth enabled Medtronic pacemaker although they were available at that time I believe.  Perhaps they had lots of Ensura models in stock.  Shame but nothing to be done now until I get an upgrade.  At least my pacemaker works well and that is more important.  In the meantime I will work with my MyCareLink Smart Patient Reader on an as needed basis.

I recall another UK member mentioning a few weeks ago in another thread that he had the same Medtronic pacemaker model as mine (Ensura) and didn't think it had Bluetooth capabilities, but he is due for a device change end of year so he will hopefully get the latest technology. He was 100% paced I recall following a surgical complication, and was never sure if it was our NHS being frugal or a simple lack of clinical need to do any home monitoring, so he only has checks annually in clinic like many in the UK.  

The Poll will hopefully give us further useful data but this thread has certainly helped me too Mary, particularly to discover that I do not have a Bluetooth enabled pacemaker.  It has also encouraged me to speak to my pacemaker clinic technicians and this has been really useful.  They clearly want to help patients who show an interest in their devices and any transmissions they make.

Looks as Though They're Still,Available

by Marybird - 2022-04-30 11:10:29

Pacemakers without wireless/Bluetooth capability, that is. You mention your Ensura Medtronic model, implanted in 2018, ( if I recall correctly), at which time wireless pacemakers were also available, but perhaps not as widely used at that time as they are now.

I have a St.Jude dual chamber pacemaker, an Assurity MRI + model which is bluetooth/ wireless enabled, implanted in 2019. But the St. Jude/Abbott website shows another dual chamber pacemaker that looks very similar with what seem like virtually identical features to the Assurity model, but without the wireless capability- the Endurity pacemaker. These two pacemakers ( single and dual chamber models) look as though they're the latest models of pacemaker available from Abbott. 

So there are still choices available, it looks like, for wireless vs. not pacemakers these days. I'd assume the choices might be a matter of cost, or perhaps the availability of cell phone/ wireless service in remote areas, or perhaps some reluctance on the part of providers and/ or patients to embrace wireless transmission technology ( thinking it's an unnecessary "frill" or expense when the old technology will work just fine). 

I don't know the actual difference in the costs between wireless vs. "nonwireless" cardiac devices, and the wireless technology, but it wouldn't be a surprise, IMO, to see that cost considerations at least partly drive the NHS pacemaker selections for its patients. Believe me, that would also be true of any number of third party payers ( health insurance providers) here in the US, and health care providers everywhere learn what those insurance providers will pay for and what the docs may end up "eating" if the insurance won't pay. 

But don't dispair, Gemita! As you mention, your pacemaker is doing a great job for you ( and that's the most important thing), and you have the technology you need to transmit pacemaker data to your clinic any time there is a need. I don't see a problem with having to collect that data by placing a reader on your pacemaker site, it's easy, doesn't hurt, and you can do it at home. You're halfway to wireless anyway with that reader being able to transmit your data to the Medtronic app.  As I see it, even if you had to put the reader in its own base to transmit the data via a phone line, it'll get there ( or let you know if it didn't), and the technology even for that is amazing when you think about it.

Another thing I think I realized in all this discussion about pacemaker transmissions, and reading everything I could find on the topic, was that wireless remote cardiac device monitoring is still an up and coming technology. While many people have it, many people don't and I see the manufacturers, and "on board" providers are still actively touting the advantages of wireless remote monitoring, so as to convince the medical community that it's worthwhile and cost effective. 

We'll get there! 

Home Monitoring

by islandgirl - 2022-05-03 23:10:30

I have home monitoring with nightly transmissions.  I was recently upgraded from a Medtronic ICD to a CRT-D Abbott/St Jude.  The nurse called me a few days ago and I had a 16 second event of VT and I will see the EP on May 9.  I have recently changed EPs and my meds are getting changed around.  I see my EP regularly, even with remote monitoring.  I have been instructed to travel with the remote monitor. The Abbott/St Jude device is more bulky/different shape than the Medtronic Carelink montior.  Sure wish I had a phone app, but not available with my device, and maybe not available with an ICD.  

You know you're wired when...

You can proudly say you’re energy efficient.

Member Quotes

I had a pacemaker when I was 11. I never once thought I wasn't a 'normal kid' nor was I ever treated differently because of it. I could do everything all my friends were doing; I just happened to have a battery attached to my heart to help it work.