Frustrated

Newbie here. Have had pacer 18 months. Have been complaining of short or breath for close to year. Always told pacer was ok. Yesterday was told after nuclear stress test that pacer was NOT working correctly. Got called to pacer clinic and had nurse and doctor reset some things, I got walked about quarter mile to see if breathing waz ok during that time. It was ok. So now today I'm on my own. We will see if it works. I sceptical because they reset it 5 months ago and breathing got worse.


5 Comments

Reset

by AgentX86 - 2022-09-17 10:28:28

I'm not sure what you mean by "reset" but changes to the settings can make things better or worse (or make no difference).  If you notice that things are worse after an interrogation, tell your PM tech ASAP.  They'll get you in and try something else.  Many (most?) of the settings are there for your quality of life. If it isn't working for you, get it changed.  There is no reason to suffer until the next scheduled interrogation.

This is true anytime there is a change to the way you feel.  Get it checked out.  It's probably nothing serious and very likely something that can be tweaked in your PM to make you feel better.  There is a small possibility that it might be something serious.  Your stress test showed that it wasn't but a change in settings would have been a lot simpler.

Skeptical

by Persephone - 2022-09-17 14:08:07

Skepticism can offer valuable self-protective benefits. Keep asking questions and ask for help from your medical team.

Don't rule out other causes

by LondonAndy - 2022-09-18 08:23:19

We know our own bodies, and you may well be right about the pacemaker needing adjustment to suit you better. It certainly seems you are likely to be correct, given the stress test diagnosis.

However, I learnt a long time ago that it is best not to rule out other causes. Just because you have had a pacemaker inserted and this has been a major event in your life does not prevent other things from happening. There can be many causes of SOB. Check a reputable health site such as this one for things to consider: https://www.nhs.uk/conditions/shortness-of-breath/ 

Keep Pushing

by MinimeJer05 - 2022-09-19 11:22:36

Hello,

As others have said, if something doesn't feel right, then continue to push and ask questions. Nobody knows your body better than you and despite what the tests or graphs show, if you don't feel right, than SOMETHING isn't right.

It could be PM-related or caused or it could be something else entirely. The only way to find out is to ask.

Take care and try not to stress too much in the meantime.

Jer

Keep on top of it.

by Quietman - 2022-09-20 11:11:49

Adjustments are not unusual. Had to have mine adjusted a few times as the activity monitors were initially programmed for a couch potato, not a active person. Plus one of his techs both didn't listen to me, and told me I was wrong about what the previous tech had set for a voltage level. Went back AGAIN after requsting the 1st tech as the 2nd tech changed the activity response w/o listening to me about my activity level and made things WORSE. The first tech pulled up the history and saw the device had reset to the default voltage, as what is a setting for the vast majority of people was too low for me (2nd tech apparently didn't know how to check the history). So he put it to a voltage in between the default and what he'd initially set. He also changed the activity levels for a more active person, but went a little conservative.

My EP and I got into a disagreement too. I basically had to tell my EP to turn off the monitors as they overresponded even though they'd been adjusted for an active person (Imagine having your heartbeat going to 130 just because you vacuumed with your left arm, but stays at 72 when using the right arm), and he tried to prove me wrong with a treadmill test. The results? They turned them off.

Because of his attitude and the inconistant training with his techs, I switched to a different EP, and he did some minor adjustments on the voltage, reviewed my treadmill test did a couple of little changes, and things were even better. At the 6 month point he wanted to see if we could reduce the resting heart rate from 60 to 50. Took 6 weeks for my resting HR to drop to 50.  Learned my body can't handle 50 bpm, so we kicked it back up to 60. Later this year we're going to give 55 bpm over the holidays.

Don't get discouraged if it takes multiple visits. Every heart /body, and activity level combination is different. So they need to customize it for you. I've talked to people that took several adjustments initially over several months and then had some more fine tuning done at about 1 year and then 2 years. Sometimes this is because your health improves, sometimes it's because there has been some healing to the heart and these allow adjusting some of the settings down.

If your EP won't listen to you, research the ones in your area and switch to a different doctor. Your health is more important than his / her ego. Something I kept running up against with the first EP.

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