Reading from the PM

I have been in dialogue with Medtronic, about the need for a reader from my PM, like a pulse watch. I had a PM installed 14th December, and have much more A-fib than expected. I had my 3rd meeting with the doctor today, and changed my PM setting to minimum 70 bpm, to see if it reduces the number and length of A-fib episodes. But the best thing would be to know immediately, when an episode starts, and when it stops. The physicians really have no idea why the A-fib episodes start, and whay they stop. During the last five weeks, I had 7 episodes, 4 of them lasted more than 72 hours, 2 lasted between 10 minutes and 1 hour, and one lasted less than 1 minute. Why they start and why they stop, is a mystery, that I would like to solve.

It's really strange that the PM producers did not develop anything for the patient, they certainly have all the available technology. That's a mindset the industry will have to change. Is it possible to speed up that change, through the Pacemaker club?

3 Comments

Hi

by Pookie - 2010-02-17 09:02:55

When you say the physicians or doctor ... I'm really hoping you are seeing an EP...if not...ask to be referred to one.

Unfortunately, I don't think this club could speed up the PM producers with the development of anything.

Well, perhaps we could start some kind of petition?

What did Medtronics say to you?

How have you been since they set you to 70?

Pookie

AF

by golden_snitch - 2010-02-18 04:02:55

Hey!

"Why they start and why they stop, is a mystery, that I would like to solve." Well, I would say that is a mystery EPs have been trying to solve for years. Even if you could see when the AF starts and stops, you would not be able to tell for sure why. You might be able to guess but you won't know for sure. Sometimes it's triggered by PACs or PVCs but not in every patient. AF is such a complex arrhythmia.

And then the thing is if you don't feel the episodes - sounds a bit like that - you would just keep checking this device you are suggesting again and again and again. Now, what's that good for? Only makes you very alert and think of it all the time.

Are you on any meds to treat the AF, and probably blood thinners? If not, maybe that's something to consider. With episodes lasting more than 72 hours it would probably be better and safer to be on coumadin, warfarin or something like that. And since "AF causes AF" as my EP says, meaning that if AF is not treated there will be a progressive increase in episodes, taking an anti-arrhythmic drug to reduce the episodes might be of advantage.

Best wishes
Inga

The need to know

by otbergo - 2010-02-20 04:02:25

To Pokie; What's an EP?

Medtronic's mindset is that all info from the pacemaker, should be passed on to the patient, by a doctor.

That's really a feudal mindset. The PM report is not that complicated, really. To get info from the PM to a reading device ought to be quite easy. Could be transmitted to a reading device, like a pulse watch.

In fact, I have been using a pulse watch a lot, to keep track of my pulse. Gives me a good idea of how my pulse changes, with my activity level.

Just after the operation, my sports watch registered extremely high pulse in situations where I did not do much. It turned out the PM had to be adjusted. It would not have been discovered, if I did not use the pulse watch. Up to date info is vital, and it's a waste of time and resources to have to wait for a visit with the hospital, to get info from the pacemaker.

As I see it, there is an alliance between Medtronic and the medical community, keeping the patients uninformed. It's like the twisted intelligence motto: "Those who need to know, will not be informed!" Well, not until their next visit at the hospital.

There's several theories to explain why A-fib develops. But why do these incidents start and stop? It's not strange that the causes are a mystery. The PM industry and the medical community haven't mobilised the greates of all resources to find out; the PM patients! When they do, I guess they will get lots of clues.

When Medtronic is unable to supply a simple reading device, I'm looking for a substitute. May be a handheld EKG/ECG might do the job, i e discover and inform me when an A-fib episode starts, and when it stops? Anybody here who tried it out?

To Inga:
You seem to be telling me that it's better to be uninformed - of how my heart and PM are working together to keep me alive and give me a good life!

I was put on alert, when my doctor told me in November, that I needed a PM. I was even more worried, when it turned out I had much more A-fib after I got the PM installed, than I had before. Therefore, I'd like to find out. And my motivation for finding out, seems to be a trillion times stronger, than the motivation of Medtronic, GP and EP.

You know you're wired when...

Your favorite poem is “Ode to a Cardiac Node”.

Member Quotes

I am just thankful that I am alive and that even though I have this pacemaker it is not the end of the world.