Remote Monitoring for your ICD? - Heart Rhythm Diso...

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Remote Monitoring for your ICD?

Malcky profile image
12 Replies

After having an ICD ( Implantable cardioverter defibrillator) fitted at Harefield in March 2018 I was given a Medtronic "My CareLink" Remote Monitor and told to plug it into a socket as near to my bed as possible, as soon as I arrived home. So it is now plugged into the socket by my bedside table.

This amazing device can monitor my heart from the hospital which is approximately 28 miles away from my home. Most of the time it appears to be doing nothing, the screen only lights up to let me know that it is working.

For a man in his 70's it all seems like 'magic'. The aerial in the ICD transmits data via the monitor back to the hospital so that when I attend an appointment at the Pacing Clinic or see a Cardiologist they have an overview of what my heart has been doing.

Are all ICD patients prescribed a remote monitor or is this a new thing? It is not plugged into a landline socket (some older versions required a landline) perhaps it works like GPS, either way I am grateful for it and to the people who designed and made it.

Would welcome your experience with a remote monitor if you have one.

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Malcky
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12 Replies
Puymaufrais3 profile image
Puymaufrais3

I too have this machine. I have not had a defibrillator fitted, but a reveal device to monitor what causes my arythma. Like you I am in awe of how it works. Very clever.

Malcky profile image
Malcky in reply toPuymaufrais3

Thanks for your response to my post.

Bulver profile image
Bulver

Hi Malcky, welcome to the Medtronic club! I too had a Medtronic device implanted at Harefield, in June 2014, 22 days before my 70th birthday. What a great present that was, a true life-saver. Like you, I was given the remote reader after my first check-up, but not every hospital issues them automatically. I subscribe to a Facebook group, ICD support-UK, where it is apparent that different regions have varying systems of support. I have been a member of that group since my implantation, and it is a very welcoming and supportive group.

My remote device sits on my bedside cabinet, next to my CPAP machine, and therein lies a problem. Harefield can never get a remote reading, I always have to do it manually. Think the problem is having a machine with a pump next to the reader. I did query with the pacemaker clinic the last time I was there, but nobody could give me a definite answer, suggested I contact Medtronic direct.

I wish you good health on your ICD journey, and hope you never have the need for it to fire off, although if it does, it’s saving your life!

Best wishes

Rod

Malcky profile image
Malcky in reply toBulver

Hi Rod, thanks for your response. I have my remote monitor plugged into a socket as near to the bedroom window as possible. I live in an area where even our mobile phones can vary in signal strength so it helps the monitor transmissions to keep it in as clear a place as possible. All the Best, Malcolm (Malcky)

austinaustin79 profile image
austinaustin79

Hi Malcky,

I have a ILR fitted (Internal loop recorder) which is made by the same company Medtronic.

Its the step before having an ICD fitted.

I had it fitted at Papworth under local and was out in a couple of hours. It can be sore at times, but I don't realise its there most of the time.

All the best David.

MandyBS10 profile image
MandyBS10

Fabulous machine - my daughter has had one for 2 years from the Children's hospital. She doesn't have a pacemaker or ICD as yet. But does have LQT syndrome, it sends a reading every morning to the hospital. If anything shows up in the morning, the hospital contacts us. This only happened a couple of times, but now medication is all under control (fingers crossed) the hospital just see us in a pacing clinic and clear any old recordings and off we go again. We always check it has been sent each morning by pressing button to show todays date. We had problems originally but that was because it wasn't plugged in close enough. Good luck 🍀

luvmyself profile image
luvmyself

My remote monitor is a little different from yours although they both serve the same purpose. The difference in device could be because of where we are located. I too have an ICD mine was implanted in January 2016 a few months before my 53rd birthday due to Brugada syndrome. My device is by Boston Scientific not MedTronic but it works the same as yours. The hospital had to call me on a couple of occasions when they were not picking up a reading. It has been great! I have not had an episode nor has my ICD fired off since surgery. All the best to you!

Happiness29 profile image
Happiness29

My son has just handed his machine back after 6 weeks, However if he hadn’t had the remote link with hospital then he would have been going about with it not working and an infection. Got call asking if son was unconscious. He wasn’t. Turned out he needed emergency operation to remove the device. Without the hospital link who knows how long this would have gone undetected. Great technology and grateful for six weeks accurate data rather than nothing.

Malcky profile image
Malcky in reply toHappiness29

I hope that your son is now recovering after his emergency operation.

Best wishes.

Allbend profile image
Allbend

Hi Malcky

I had Medtronic ICD implanted 2015 at Bristol Heart Institute, and have a remote monitor.

The unit has a mobile phone SIM built in which is used to communicate with your pacing clinic

Malcky profile image
Malcky in reply toAllbend

Hi Allbend, thanks for the info. I have now had the ICD for one year and had 3 trips to

the Pacing Clinic so have become quite familiar with the remote monitor. The ICD is

working OK, I still get some slight Angina from time to time but so far no electric shocks

from the ICD!

My next trip to Harefield Hospital, Middlesex is in July 2019 for a pacing checkup.

The staff are really brilliant there.

Best Wishes,

Malcolm

Midnight21 profile image
Midnight21

Hi.....Malcky, I’m a lady in her 70s with quite a rare heart condition and have had an ICD for many years, I’ve just picked up on an old article of yours. I’ve got a remote reader and have probably had one for about 7-8 yrs. it’s plugged in by the bed and sits silently as you say watching your heart. Apparently it records the information nightly , then relays to your hospital periodically. I too am fascinated by the technology of it and just am very grateful that these things exist. If your information throws up any flags ,it alerts the hospital immediately to take a look! With the first model I had ,I used to get a strange sensation in my chest momentarily at midnight every night,and presumed that it was during a download. The new model though has never given this experience. I just hope your “guardian angel” is still performing it’s duties as it was intended.

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