Home monitor NOT transmitting for almost a year!

Monitor and app

by Lavender - 2023-07-22 20:49:46

I have a Boston Scientific Latitude communicator. If the light is out, it's not working. I also have their app which tells me if things are ok. 
 

A lot of folks don't even have a monitor. I was told if I am traveling less than a month, don't bother taking it along. 
 

I'm sure it is frustrating that you reported in and were told that your monitor was ok. ☹️ I would also wonder why the cardiologist office didn't catch that.  Mine is set up with a date of transmission so I know when it's going to go through. Of course, I am asleep and never feel it. 

not transmitting

by new to pace.... - 2023-07-22 21:14:53

hard to beleive that you had never recieved the information from your pacemaker clinic.  That they had not been recieving  your transmissions. I have my bedside Medtonic  care link set up to notify me when the quartely transmission has been recieved.                                                                         maybe it is time to change to a new Cardiologist and Ep office.  Since no one seems to be monitoring you.  No it is not up to you to check.                                                                                                         Hopefully you have your yearly pacemaker check coming up.

new to pace

Thank you, Lavender

by disneyfan - 2023-07-22 21:18:12

Thanks for your comment.  I wonder why it wasn't caught either for so long!  

Take care!

Trust but verify

by AgentX86 - 2023-07-22 22:35:57

Actualy, don't trust anyone.  I'm always suspect of medical admin people.  I've found that with few exceptions that they're dumber and less motivated than the box rocks come in.

Did you try pushing the button to send a transmission?  There should be a response from your cardiologist/EP saying that everything's good/bad.  Either way, the transmission was good.  If you get nothing back, start tracking it.  Even if it did get there and they didn't bother answering, or worse, examining, the transmission you have a bigger problem. 

I didn't get acknowledgements from Medtronic but I did get a response from my EP (of course, it cost $$ to have it read).  I have the app, so now get acknowledgements immediately (from either scheduled or unscheduled transmissions).  I also get dinged by both text and email if the app hasn't been running for a few hours.

IMO, the app is worth upgrading a phone to get. Not only do I get a log of connections, I have a "call-home" button that I can carry with me.

Thanks

by disneyfan - 2023-07-23 07:26:09

I appreciate your comments AgentX86.  I tried pushing the button, .  I just can't believe no one caught it for almost a year!  

Funny thing is, I just got a new phone.  I got Samsung A23.  I had called Medtronic before I got the phone and was told it was compatible.  Then when I got it and tried to download app, it stated it wasnt compatible.  Only certain models of A 23, but not the one I have.  I think I will see if I can turn it in and try another model. It would probably be worth it so I can verify transmissions.  I dont trust them now. Take care!

Not surprised

by piglet22 - 2023-07-23 07:49:21

I can only speak from UK patient experience.

I have very little confidence in the way my bedside monitor (Medtronic MyCareLink) works in practice.

After years of running down the face-to-face clinics, they (cardiology) announced "no more face-to-face checkups and you will get a monitor through the post"

At first, I thought this was a great idea, but quickly changed my mind on that. Instead of enhancing patient care, this was just a cheap way of doing away with the clinics.

What astounded me was the fact that there was zero input from the hospital after that. No explanation on how things worked, what it did, no follow-up.

Yes, there were some instructions, but this is not some new TV, but a potentially life-saving bit of kit. Yet absolutely nothing from the hospital. There are buttons on this device that no-one has explained what they do.

I think I got about 1-years use out of it before it started throwing out error messages. As I remember, the hospital advised contacting Medtronic UK which I did. Then I had to call the Netherlands. After a lengthy phone call and some tests, it was decided it was faulty and would be replaced.

In the meantime, after some tinkering, I had decided that it was a simple case of the way the chest reader sat on the base unit to recharge the reader battery. If it were mine, I might have adjusted or cleaned up the contacts and given it a squirt of WD40.

To make matters worse, the EP I spoke to afterwards - in UK parlance, EP are the technicians who ran the ECGs and PM interrogations, not consultant or registrar level - and when I asked what to do with the old unit, the response was dispose of it. I was absolutely staggered that the hospital had no intention of even looking at it to see if I had been using it properly. You can find them on eBay for £30.

There is a slight possibility that the monitor had been damaged by the many power cuts (outages) that my town had in one year. These were not the 30-minutes power off type, but the highly damaging 30-millisecond type as the utility switched networks.

If it wasn't for the expense, I would power it from an Uninterruptable Power Supply (UPS) and I'm surprised it isn't. I already have four UPSs to protect computers.

I still don’t know how it works in the background. If you want to know something, you have to ask, it's never volunteered.

I'm over six months into ectopics messing up my heart rate with oxygen sats now falling to below 90% and as far as I'm aware, not one event of arrythmia has ever been transmitted and I start to wonder exactly how this bit of kit is supposed to benefit me.

I suspect this is more to do with money than patient care.

I notice that most of the comments here are from our American friends. I wonder how you would get on with the NHS?

When I see things like ask your EP, talk to the rep, I think if only. I had to wait 10-weeks for a ten-minute phone call from a consultant at the end of June. His last words were “I will arrange an urgent pacemaker check”. That was nearly four weeks ago, and nothing heard.

I turns out, this guy doesn’t even do pacemakers, he’s a stents man. Instead of “I will arrange”, it could have been “send a transmission.”

Probably wondering if he could fit a round of golf in.

Disneyfan - Wait; What?

by Good Dog - 2023-07-23 08:34:08

I have a Medtronic "MyCareLink" and I have to send my transmissions manually. It is not automatic, but I am sure Medtronic has other devices some of which may be automatic. 

Through all of this dialog I did not see you indicate what type/model monitor that you have. Is it an App on your phone? I assume that it is, but it should have provided a confirmation of some sort that it was successfully sent.

My device takes me only a few minutes to perform and send my transmission. It is cellular, but does not use my phone. It is completely self-contained and the transmission is made from within the device. Upon completion of sending it I get a confirmation that the transmission was successful. 

If I am travelling I can take my monitor anywhere. I often do not even have it plugged-in. When my hospital receives and reviews my transmission, they email me a report that evening or at the latest the next day.

Although MyCareLink is not automatic or continuous, it is remarkably reliable and simple. Something to consider, that is if they are still providing them.?

care link monitor

by new to pace.... - 2023-07-23 09:21:20

Mine sends my transmissions automatically.  I have also signed up at                         www.my carelinkconnect.com   to get the notifcations that my transmission was recieved, mine is by email.  I also have my sister's phone number  as the other person to get the notification she gets by text.

I got mine in 2019 when i got my pacemaker.

Good Dog you might ask them to send you a newer model that is automatic.  Mine the light goes out at night and only is on during the day.

You are lucky that you get your report automatically, i have to call for mine.  Then go pick it up.  For me that is not a problem as they are close by.  If inspired i walk over weather permitting.                                                    Since this past fall i do not seem to be called anymore. After i see the quartely report with the number of A Fib episode wonder why, must be doing something right.  Or the  EP or the cardiologist are not concerned or do not see the reports.  This last time no electronic  signature from the EP.

new to pace

Sad

by Lavender - 2023-07-23 09:29:26

From Piglet:

"I notice that most of the comments here are from our American friends. I wonder how you would get on with the NHS?  When I see things like ask your EP, talk to the rep, I think if only. I had to wait 10-weeks for a ten-minute phone call from a consultant at the end of June. His last words were “I will arrange an urgent pacemaker check”. That was nearly four weeks ago, and nothing heard"

As an American, I have no idea of the NHS. I guess if I lived there, I would have to do whatever most everyone else in dealing with delays etc..  Here I do wait to see a dr-most are booked up three months, the dentist is booked up nine months ahead for cleanings. But, I can see a physician assistant meanwhile. We do have lots of walk in clinics and urgent care places as well as hospital emergency departments. In cases of heart pain or such-you're seen with more priority at the emergency department. We can call the pacemaker manufacturer with questions. I can speak to my cardiologist's physician assistant during the week. I can email all my providers and get a response within a couple days.
 

I can't help but wonder if you could get quicker care at a major city or in London. Does the squeaking wheel get grease? 

Thanks, Good Dog

by disneyfan - 2023-07-23 09:37:39

Thanks for your comments.  I had a bedside MyCareLink Relay home communicator.  It was my understanding that every night between midnight and 4 AM, it would transmit data from the pacemaker to the Relay Monitor and then to the  Monitor Coordinator Nurses if there was a problem (like I had an episode of Afib that lasted until the next day when I first got the PM}.  Otherwise, it stores the data for 3 or 4 months and sends a transmission on a scheduled date.  I get a letter in the mail when that date will be.  Then I get a brief report about two or three months later.  But when I wasn't getting the letters or the reports, I was told they are behind, short staffed, but not to worry about it, as they are still watching for any problems.  But they really were not.  Incredible, no one caught that it wasn't working even after I questioned it twice that it wasn't lghting up anymore.  

  Unfortunately my new phone is not compatible.  I have a Samsung A23 and was told that it was compatiable by Medtronic before I got it.  Then when I tried to download the app, it said it wasn't.  When I called Medtronic, they said it was until they check the model and then said it wasn't! Certain A23 models are compatible but mine is not!  They never told me it was certain models. When I called Medtronic they texted me a link,  www.medtronic.com/verify and mycardconnect.com  That works on my phone.  That shows my last transmission date was 8/4/22!  So now I am waiting for the new bedside Monitor.  They sent me an email with a link to a youtube video that shows how to set up the relay monitor!  A video a person made, not someone from Medtronic!  

NHS - Lavender

by piglet22 - 2023-07-23 10:39:53

Hi Lavender.

The NHS is in crisis. The original 1948 model of pay for National Insurance and tax, get your heath for free. Cradle to grave, free at the point of use, whatever that means.

Too many people making too many calls on new very expensive treatments. New drugs in the hundreds of thousands of pounds, treatments over a million pounds per patient. Huge waste and over-bearing management.

Junior doctors on strike, nurses on strike, consultants on strike, radiographers on strike.

People pulling their own teeth out. Seriously ill patients being taken to A&E strapped to a board in the back of a van because of ambulance shortages. Stokes and heart attacks Category 2 emergencies. Many dentists are private only. I pay about £470 per annum for two checkups and two hygiene visits. Not bad for 4-hours work.

Add to that the pressure on primary care like GPs. They've pretty much used every method to get you to go somewhere else. Go to the pharmacist, ring 111 (the NHS next level down from 999). Online consultations, provided you start typing before 08:30 and the service closes because it’s full for the day. Reception phone calls "you are number 59 in the queue."

Our two systems are quite different.

Yes, emergencies are good, and pacemakers get fitted quite quickly. But out of A&E is where the trouble starts. The after sales service is poor.

As for calling the PM manufacturer, here, you might as well try and have a chat with the Prime Minister or King Charles. Even if you managed to do it, I would imagine the wrath of consultants would be considerable. A friend of mine was told off in no uncertain way for emailing her GP using an email address outside the surgery.

I’m assuming that most people here are clued up on how the “system” works and simple thing like going on-line, but many aren’t.

The latest wheeze is getting your hospital letters as pdf files from a private provider attached to the NHS (Patients Know Best). Hundreds of thousands of people wouldn’t know where to start.

I had a call from the pacemaker people in November last year. “why hadn’t I attended the virtual device clinic?” Simple, the postman never delivered the letter.

It wears you down. Did I ever think that I would have to be checking my pulse every time I changed posture? Of course not. I’ve put up with falls and faints for six months thanks to ectopics. Can I get a fix in a reasonable time? Of course not.

I could try somewhere else, but the chances are that would add another year’s wait. That’s if the trains are running. The drivers are on strike too.

I could see the same consultant at one of his three private clinics and make him richer. But that’s not going to happen either. I’ve paid for him once, I’m not paying twice.

locations

by new to pace.... - 2023-07-23 11:03:30

Piglet22's comment above shows   that  "free'" health care has its draw backs..

new to pace

Marybird's comments

by disneyfan - 2023-07-23 11:14:02

I am sorry to hear your daughter had a similar problem that I did...approximately a year with no transmissions!  I am glad you got your daughter to switch Cardiologists and found one that is efficient and caring!

Thank you for letting me know!  I appreciate the comments.

Monitor

by Aberdeen - 2023-07-23 12:09:50

I have a Medtronic bedside monitor. In October 2021 I started to feel unwell at various times. (Dizziness ,breathlessness) so my doctor sent me for a echocardiogram. Nothing had changed since last year. I have a mitral valve prolapse. 
This continued until April 2022 when the pacemaker clinic phoned me and asked me to come in asap as I had abnormal readings from my bedside monitor. 
I was told my ra and rv leads were failing. I have a CRT pacemaker. 
Within a week I was in surgery to replace these leads. 
My concern is that I had spells of feeling unwell for about 6 months before it was picked up. I thought that the monitor would be alerting the clinic long before this ?

 I was told how often messages are transmitted but as I was shocked I have forgotten. I will ask at my next check up.

The only positive thing is that I have felt well since the leads were replaced. The pacemaker clinic said to go to them first if I felt unwell again.

Medtronic MyCareLink

by Good Dog - 2023-07-23 15:02:28

I have found all the comments here to be very interesting. Going back to the question in the original post; I am either just confused or don't have enough info to be more helpful. I am sorry, but let me just say this: as I said in my post, I have a bedside MyCareLink monitor that is set-up for manual checks and uses cellular automatic communication to send my remote checks. I simply plug it in and get a message and a pic on the screen that indicates I should pickup the device from the cradle and hold it over my PM. It then shows a progress bar and when complete the pic shows that I should replace the hand-held device back in the cradle. I then get another pic that shows it is transmitting with another progress bar. When the transmission is complete I get a check-mark on the screen confirming that the transmission was successful. That is it. It takes about 3 minutes for the entire procress. 

What I like about doing my transmissions manually is that:

1.) It is simple and I get a 24 hour window in which to send a transmission at my convenience on the day that my Doc's office pacer Tech tells me I need to do it (schedules it).

2.) If I forget to send it, they notify me my mail/phone or email and give me a new date

3.) My current Doc sends me a complete report thaty night or on the next day. If they detect a serious problem, they call me.

4.) The beauty of this is that there is always good communication so that I know I am being looked after. I am never wondering!

5.) The other great thing is that since it is manual and I have control, if I suddenly feel crappy (a technical term), I simply send a transmission for them to check at my convenience. I don't schedule it, I just send it and then call my Doc's office to let them know I sent it.

6.) There is nothing automatic in my process and I like it that way. I am a control freak and I have complete control.

If I were you all with a Medtronic MyCareLink monitor, I'd requesto to do what I do; "manual transmissions", but of course that is up to you!

Just my 2 cents...........................

Dave

carelink monitor

by new to pace.... - 2023-07-23 17:40:57

my device does not have anything to pick up and put over my pacemaker

new to pace

New to Pace

by Good Dog - 2023-07-23 19:25:53

New to Pace; If you are happy with what you have that is great. I would not want it though. If they offered it to me I would refuse it (if possible). As I said, I really like what I have!

I HAVE CONTROL!!!!!!! I NEED CONTROL!

Dave

Interesting comments....Good Dog

by disneyfan - 2023-07-23 21:22:45

Dave, your last comment regarding your Medtronic My Care Link was interesting to me.  I have not heard of a bedside MyCareLink monitor that is set-up for manual checks and uses cellular automatic communication to send remote checks and you manually pick up the handset and place it over your PM.

I have a Medtronic MyCareLink Relay.  It automatically stores data until the 4 month transmission.  It will send dataa automatically if something is wrong before the 4 month transmission.  For example, when I first got my PM, in less than a week I went into Afib one evening, and I got a call the next morning telling me I had been in Afib since last night..  I thought, wow, that's great they are catching things via the Relay.    I don't have to do anything as it transmits at night.

I have not heard of the one you are speaking of that you hold over your actual PM. What is that called?  Do you have to have an app on your phone to use it? My phone is not compatible.  Do I just call Medtronic and tell them I want to do manual transmissions and they will send something like yours?

I like the idea of not having to bother doing anything BUT, by not having any control, I got lost in the shuffle!  No one realized they were not receiving my automatic transmissions for almost a year!

I think I would rather be in control now and be able to know for sure they are received and looked at.  

Thanks for your help!  Sharon

Acknowledgement

by AgentX86 - 2023-07-23 21:43:57

Another way I can tell what happened with my transmission is by logging into the hospital/cardiologist/ep web site. There are all sorts of diagnostic and appointment notes in there, going back a decade.  After an interrogation, either remote or in-person, there is a report filed from an EP, who I haven't seen in six years.  The detail from the interrogation isn't there, usually just a "looks good" note or maybe an adjustment note.

Look to see if there isn't a similar web site for your provider.  There may be.  That's how they post their bills, too.  They like it when people show up to pay their bills. 

US vs. NHS

by AgentX86 - 2023-07-23 21:59:41

I have no first-hand knowledge of the NHS but it certainly does sound like a mess right now.  Is there any light at the end of the tunnel?

As Lavenday said, things aren't perfect here but nowhere nearly that bad.  It can take me six months to get an appointement for a specialist as a new patient.  After than it's a lot less.  I could see my cardiologist within the week if I wanted to drive 30-40 minutes.  He's only local one day a week.  The other days, he's either in another office or the hospital. Since I'm not an active patient with my EP, it might take a month, unless my cardiologist turned up the heat.

GPs here are a mess.  It takes my wife three months to get an appointment with her GP and she's been an active patient for a decade. They only thing they do is order tests.They're useless for illnesses. By the time you could even get an appointment made, you'd either be cured or dead.  The doc-in-a-box (urgent care) facilities are the only reasonable alternative. They know it and they're springing up like weeds.

Disneyfan

by Good Dog - 2023-07-23 22:29:24

I will get back to you tomorrow and/or drop you a private message with the details of the MyCareLink that I utilize. I have had this unit for at least 5 years, but likely little longer (I just don't recall). I have been seen my several cardiologists in two different hospital systems during that time as well. None of them had any issue with my device and did not offer to change it to something else. My point in telling you this is, because I don't know what role your Doc plays in determining what monitor you can use. I am just not aware of all the intricasies. In any case, I will get back to you with all the info I have.

Sincerely,

Dave

Monitor

by AgentX86 - 2023-07-23 23:07:32

I think all of the monitors (neglecting the obvious communications differences) are essentially the same. I doubt that the MyCareLink box is anything more than a dumb interface between the phone and your PM (either via Bluetooth or NFC). Your cardiologist sets up the service to poll the box on some shedule.  It wouldn't surprise me at all if they're too dumb to try again later if there is no connection but that's probably programmable too.

It never ceased to amaze me what a pile of junk the MyCareLink box was.

AgentX89

by Good Dog - 2023-07-24 07:22:13

Yes, you are correct. It is just a dumb interface. You are also correct about it not being programmed to try again later (at least the one I have). However, it is what I like and at least for me; it is all I need. Having been paced for almost 37 years I don't need a so-called smart monitor to alert anyone when there is a problem. I know when there is a problem. I suppose that if I was prone to a lot of weird arrhytmias that I could not detect, then yes, a smart monitor/communicator may be the ticket. However, I recently had a very rare and brief A-fib run under 2 minutes that was in my report. It was no surprise to me. I knew exactly when and where I had it. If it had persisted, I certainly would have promptly responded with a new transmission. 8 years ago when I went into RRT/ERI I knew it immediately. My point is; that I am only speaking for myself. I think that there are lots of folks that feel the way I do, but I am also sure there are many that want and may be better served by a smart device and/or app. I may someday be one of them, but for now I am not.

NHS

by Aberdeen - 2023-07-24 09:38:35

I have been lucky with getting a doctors appointment. Earlier this year a lump appeared on my neck. I phoned at 8am and at 8.30am a doctor spoke to me. I had an appointment with a nurse practitioner at 4pm that day. The nurse conferred with the doctor as to my treatment.

Recently I wanted a mole checked and I received an appointment 5 days later.

I live in Scotland- perhaps people with pacemakers are seen promptly?

Thanks for all the comments and feedback!

by disneyfan - 2023-07-24 09:40:37

I appreciate all the comments, information and feedback you all shared!

I think the bottomline is use whatever system you feel most comfortable with and FOLLOW UP YOURSELF to make sure transmission are going through and be sure they SEND YOU A REPORT each time so you can track everything yourself.  Then if something seems amiss you can bring it to someones attention because they may not always catch it!

Thanks again!

Disneyfan

by Good Dog - 2023-07-24 11:28:50

Disneyfan,

I think that you have it exactly right! Precisely!

Here is the info on my monitor:

It is MyCareLink Model 24950 (there may be newer model No's 24951 & 24952)

It was a 3G older model, so they sent me a thumb drive to upgrade it to 4G

Here is a link to everything you need to know about it including pictures:

https://www.medtronic.com/content/dam/medtronic-com/uk-en/patients/documents/mycarelink-patient-manual-24950.pdf

I noticed on the Medtronic web page that they offer many different types of monitors. No surprise there. The one that I have is still available in an upgraded model. Here is the URL for it:

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

When you navigate to this page there will be a menu to take you to different devices they offer. Just close the menu (unless you want to view other device info) and scroll down a little to see all the info and tutorials on the unit that I have.

Hope this helps. Please let me know if I can offer any additional info. 

Sincerely,

Dave

Bluetooth

by AgentX86 - 2023-07-24 22:18:35

I wouldn't see why manufacturers would make anything other than Bluetooth enabled pacemakers anymore.  Anything designed in the last five years (I say that because mine is five years old) would naturally have Bluetooth.  Mine has both NFC and Bluetooth.  I have no idea if Bluetooth can be turned off.  I couldn't imagine a scenereo where I'd want it turned off but...

Pacemares can be detected on our Bluetooth enabled phones and computers.  I occaisionally see mine on the Bluetooth "add devices" page ("Heart Percepta2048"). It can be detected on other devices but it won't interfere with other devices and other devices aren't going to interfere with it. He's not going to access anything through his pacemaker (or whatever he was talking about).

In theory we could access our pacemaker's information but in practice, Medtronic would never allow it.