Pacemaker status info

Hears a newby question:  how are people getting so much info regarding what thier device is doing?  Is there a remote device that lets you see what HR its pacing to and what your actual HR is?  Can you query he device remotely when you feel like it?


8 Comments

In God we Trust - everyone else bring data!

by crustyg - 2019-06-29 13:24:57

It's a great question. Starting from the end, no, unless you have secret access to a PM programmer, you and we can't see what the device is doing.  The communications protocol for your PM is proprietary and should be encrypted, at least I certainly hope so!  Everyone who has a PM implanted should receive a small card that details precisely what's been implanted - manufacturer, model, serial number, name(s) and serial numbers of leads.  This stuff matters if they want to put you in an MRI for a scan, and can sometimes matter at airport security - and it's useful if you collapse on the street.  Simply taking an X-ray of your chest to try and work out what's inside you isn't quick or reliable.  What's your heart rate: feel your radial pulse and count, or purchase a $20 finger pulse-oximeter from your favourite online store, stick it on, switch it on and there's the answer.  Most of them don't work well during exercise.

Each time you visit your EP physician - or in the UK, a PM follow-up clinic -he/she or they can tell you your pacing mode, basic settings and other stuff.  Once they understand that *you* understand what it all means they will be willing to share more.

Your EP physician *should* explain to you what the PM is doing, and why, and if you ask, how. There's a little table that decodes all this DDD(R) or AAI(R) or VVI stuff (it's an internationally agreed pacing mode shorthand), and many of us like to ask for/grab a picture of our post implant chest X-ray, if only to amuse the family.

Does that help?

"Black Box"

by CatDad - 2019-06-29 16:49:37

Dogtired, your question prompted me to investigate the phone app from Medtronic I've seen referrenced since getting my own PM in May this year.

According to this article:

https://www.mobihealthnews.com/48596/medtronic-launches-connected-app-for-pacemaker-patients-but-patients-cant-see-the-data/

the data is as crustyg says, a black box to the PM's owner.

I fail to see the utility of an app that will let only iPhones and a few Android devices replicate the function already fulfilled by one's MyCareLink monitor. It seems that the MyCareLink gizmo must first do its "baby" interrogation of your PM from <10 feet away and then send that data to your phone even though the MyCareLink base station already has 4G uplink capability.

But I'm a noob and may have this wrong.

Medtronic inforamtion

by islandgirl - 2019-06-29 17:36:34

Go to the Medtronic website.

When you have it interrogated, ask for a copy of the report.  It has vast information, much of it I can't understand, but ask questions and make notes on the copy you have.  

 

Talk with your electrophysiologist

by Selwyn - 2019-06-30 12:02:13

I have always received a print out following my PM checks  on the NHS.

The other week, when I had a check up, they kindly loaded the information onto a flash drive ( as that room's printer was not working and the info. is stored electronically) and went away to print it for me ( Thank you to The Liverpool Heart and Chest Hospital). 

Once you have a paper copy of the interrogation, you can compare results over time and if needs be look up on line or in books what it all means. 

Get the report

by Theknotguy - 2019-06-30 19:19:48

At six years out mine is one of the older models so doesn't have all the whiz-bang the newer models have.  Have to wait until the battery goes belly up and see what the new model brings.  So I had to go the old fashioned way and get print out of reports when they did the pacemaker check.  Then asked questions of my EP, searched for info on the Internet, and learned things from the forum.  Apparently the Brits are a little ahead of the curve and willing to put the info on a thumb drive but I'm still stuck with paper print outs.  

I still don't understand everything that's on my pacemaker report and never will.  That's why the EP's get paid the big bucks.  But I do get enough information to help.  That way when something goes bump in the night I'm not on the phone with my EP's office the next day crying for help.  

If you've got a little of the technical bent and are willing to do some research, you can learn a lot.  However, most of the people I know who have pacemakers are willing to go along not thinking about their pacemaker until they get reminded to have their check up.  They are very happy to forget about their unit and don't feel the need to know anything.  

I do hope everything goes well for you and you have a smooth adjustment to your pacemaker. 
 

Interrogation Report

by KonaLawrence - 2019-07-01 03:24:53

When you go in for your Interrogation (fancy name for a Tech downloading all the data from your PM) a report is generated.  The Report goes to the Cardiologist/EP or filing system.  Then the Tech usually runs a diagnostic test or two on your PM and finally, changes settings as instructed by your doc.  When all done, a 2nd Report is generated of the diagnostic info and the new settings of the PM.  This 2nd report also goes to the appropriate people/place.  This is all YOUR data so you can request a copy of both reports.  Some docs are reluctant to give out the report beacause it is very complex and they don't want to scare their patients.  However, if you're technically oriented you can use the reports to learn a lot abot your PM and your body's adjustment to it. 
Good Luck, Lawrence

 

 

Getting Info

by Gotrhythm - 2019-07-01 14:09:17

In my philosophy, there's no such thing as too much information. Even information I don't completely understand is better than no information, because I can ask questions about what I don't grasp. 

Your question shows you are already wondering how to get information. That's good. I'd like to expand the above answers a bit.

Yes, ask for a print out of your interrogation report. Unless you're technologically oriented all you need is the first page. Don't be overwhelmed. You don't have to become an expert on all things pacemaker. You only need to understand what it means in your case.

I have found Youtube to be invaluable. There is a Youtube that explains everything under the sun---videos put out by trustable sources. ECG, heart conduction, modes, heart block, how defibrillators work...you name it. And if you don't understand one, there is another one that explains it a different way. Best of all, nobody needs to know how many times you have to watch it before the information sinks in.

These videos will give you the background that will allow you to ask better questions and better comprehend the answers. When professionals realize you have the background to understand them, they will be much more forthcoming with information.

For example: I was with a new EP to explore the need for new settings. When the doc, speaking to the tech, made a little techo-joke about modes, I chuckled. The doc's head whipped around. "You understood that!" 

I admitted I did. You could see him revising his estimate of me from little old sweetie to someone to respect. His demeanor had been perfectly appropriate before, but now he treated me like a participant.

Just saying.

get the printout

by dwelch - 2019-07-07 22:35:58

Get the printout when you go into the ofice.  I have not experienced this yet but I guess some are offering thumb drives rather than paper...interesting..

Whether you understand it or not, get the data, someone on this site can help, but not if you have no data.

The printouts tend to have a list of the settings before and after the tests, you can see that normally they never change a setting once you get dialed in that first year.  But if they change something you can see after the tech goes and the doc comes in and ask about it and/or if the doc hands you the printout then you can look quickly and ask, why was this changed and what does it do. 

 

You know you're wired when...

Your device makes you win at the slot machines.

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