I'm learning to be a pest!

Thought it might be helpful for people to know my experience with PM settings. The day after surgery (7/15/13) for third degree block, I went home and became increasingly anxious, spending much of the day pacing. That night I couldn't sleep at all as every few minutes I could feel the pacemaker kick in. I went back to the hospital the next day for observation. The interrogation rep said I seemed to be sensitive to the automatic self test that was going on every 8 minutes or so- thankfully she turned that off. That would account for why I couldn't sleep at night- feeling jolted awake every few minutes. Since then, I really haven't felt very good, sometimes needing to take deep breaths sitting down or for no good reason, my anxiety continued and my pacemaker seemed to kick in at odd times. Although I wasn't due to go to the doctor again for another 6 weeks I went in last Friday. The lower setting is at 50 and the upper is at 130. While the dr. was doing the interrogation, he noticed that the mobility sensor was turned on, something he said the rep did that he never would have done. Since turning the sensor off, I have been feeling better and less anxious. I've learned that you really have to advocate for yourself and that the reps and drs don't communicate. My dr. had already seen me at two weeks and hadn't noticed that the mobility sensor was on- seems like he wasn't very thorough and a little sloppy. Last Friday, the doctor also lengthened my AV delay to encourage my heart to beat on it's own. With the sensor on, my heart was using the pacemaker 25% of the time, that number should decrease now that the sensor is off. I want to encourage everyone to advocate for themselves because I'm realizing that I really can't count on the "professionals" to get my settings right for me. I realize we are all different, but I wish there was more coordination involved between reps and Drs. Today was the first day I felt close to normal, hopefully the trend will continue.

6 Comments

Very correct!

by Duke999 - 2013-08-20 02:08:42

I learned the hard way like you HoneyBadger. In my case, my EP and PM tech were absolutely USELESS after I had my PM implanted. EVERYTHING I need to figure out about dealing with the PM, settings available in the PM is through this site and internet research. I don't know if my EP & PM tech are insensitive or ignorant about what PM patients are going through. Just to give you an example, after I learned about Rate Response setting on this great site, I had to suggest that to my own EP and PM tech about turning it off for me. If I didn't suggest that or any of other possible settings that may be good for me, they would do NOTHING even I have complained many times how I felt. The point I'm trying to tell you is: YES, you need to be proactive. They might not care about you as much as they make you think they are (I know, I know, not all EP or PM techs are that way. I can hear other people on this site about to jump at me by saying that).
You realize this quickly and I'm glad that you do. Stay with it and be on top of them (not literally :-) ).
I wish you well and a good journey. Have a nice day.

Duke

Many thanks for your comments

by HoneyBadger - 2013-08-20 07:08:27

Thank you all for your comments and encouragement. In my initial post, I referred to "mobility sensor" but I meant "rate response sensor"- I'm still learning the terminology! When I went in for my appointment last Friday, because of this site and postings, I asked my cardiologist about "rate response settings" and he said that for people like me with heart block they don't activate that setting. During the interrogation he noticed that the rate response was in fact turned on. I am very grateful for this site for making me aware of this setting because I would not have known to ask. As I mentioned above, the same cardiologist neglected to notice RR was turned on two weeks prior. If I hadn't asked about it, my Dr. may not have noticed again, and I would still be suffering. It's amazing how much better I feel with it turned off. I was beginning to think that I would never feel normal again.

Many thanks and I hope DonB has fully recovered- I will remember your story if something like that happens to me. This site rocks!

You are...

by donr - 2013-08-20 08:08:56

...Doing a great job at being a pest - keep up the good work.

You have discovered one of the laws of becoming a successful patient. You MUST be your own advocate - no one else will.

Congratulations!

Don

Right On DonR

by donb - 2013-08-20 11:08:33

After 3 months of having my resting HR drop to an erratic 50's or less I kept thinking this is not right as I never experienced this before with my 4 previous pacemakers. I
I 1st recognized this checking my pulse immediately in the recovery room & showed much concern.
I had my interogation with a Medtronic Rep & questioned if maybe my settings were 50-120. He acknowledged they were set at 60-120 and my settings were "fine".
So after only a few more months (recently) erosion again started & had another interogation only to find indeed that my pacemaker's atrial sensing lead was not sensing as the lead had infection at the heart wall termination.
Moral of story, I should also have been more of an advocate as my site was already infected along with the leads & should have been treated at the time.
As a result I had to find a top specialist & endure extensive antibiotic treatment with my next implant in my abdomen. I want to express my Thank You's to all our members for sharing their experiences which have given me the knowledge to be an "advocate" to recognize when proper treatment is needed.
DonB (The other Don)

Good work

by PacerRep - 2013-08-26 01:08:49

Not all device rep's are created equal. Some are good.....some are downright dangerous. The first question I always ask before I even put the wand on is "How's your device working for you? Any known problems?"...Now I have no way of knowing unless it's an obvious programming issue if the pt is having symptoms. It's absolutely critical to communicate with us. I know many people like to just not say anything but that is not the right approach. Some of my best programming comes from pt's telling me the smallest things....like....my heart races in a rocking chair...I get dizzy only when I go up a flight of stairs....etc etc.

good work

Pest Away HoneyBadger

by Casper - 2013-08-27 12:08:10

I agree with Duke, you really need to be your own advocate. EPs and PM Techs (Sales Reps) need to take your concerns seriously.

I hope you get a full copy of your interogation report each time you visit your doctor's office. This way you can see what settings you have turned on or turned off.

Good luck HoneyBager and I hope you're feeling a lot better.

Casper

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