Meeting with the pacemaker rep Monday

I had my pacemaker implant in Nov, 2016 and had to see the rep in Jan for problems I didnt understand to know what to even ask and was lead to believe I took up too much time trying to explain what was wrong.  I have had a-fib since my 30's and am 64 now.  I had an ablasion in 2013.  In november I was told I have sss with bradycardia and needed a pacemaker and was in total denial.  I saw the pacemaker rep in jan instead of waiting untilmthis mondays real first visit.  I guess Im so sensitive I felt every time it turned on, so he finally turned off my electrodes to my leads so I didnt feel them going off.  Im still waiting to feel better, but have break through a-fib and weakness, confusion, and other problems on top of it and I really dont want to ask him questions that dont pertain in my 15 minute allotment for my visit.  Does he need to know my symptoms to know what to do with my settings or can he tell by looking at my tape from over the last month?  Just not sure how to ask.  I have the feeling of not having control over my own body anymore and this is causing alot of anxiety and panic.  What are the proper questions or things the rep needs to know and what do I wait to ask my doc the end of february?  Thanks everyone ahead of time.  I dont want to waist his time again not being able to explain myself or what he needs to know?

6 Comments

I understand

by Gotrhythm - 2017-01-22 13:57:44

I don't really know the answer to your questions, but I do know how you feel. To me the hardest part about dealing with a pacemaker was learning to understand enough to be able to ask an intelligent question. The frustration of being unable to communicate with the people who are really trying to help you is incalculable. And it can't be good for your heart!

When they make you feel like you're wasting their precious time---ooooh!

I don't know what to tell you. Honestly, I finally got the point accross that the pacemaker needed some adjustment when I arranged to collapse in front of the tech. Not an option for most people.

"Turning off the electrodes to the leads" doesn't sound right. It seems like you do need a better understanding than you have of your condition and how a pacemaker can help it. You can find excellant animations of the electrical system of the heart on YouTube, and that might be a place to start. Hopefully someone here can offer some more specific directions. 

Thanks Gotrythm!

by bucky - 2017-01-22 14:18:56

Thanks for your answer and Im glad Im not the only one confused on what to ask...!  Confusion is part of my symptom Im left with, so its extra hard to come across intellegent and to the point.  I thought Ide write down my symptoms and hand them to him and let him pick the ones that pertain to him?  Just so I dont waist his time.  I just think something isnt right and I will go to you tube and watch whats happening on there so I have a better understanding on what is going on.  I think I ment to say he turned off the sensors to my leads--he said it would still work the same but I would no longer feel when it has to work. He was really surprised that I could feel them even after he turned them on low, so he turned them off.

see the doctor

by Tracey_E - 2017-01-22 14:35:27

You don't need 15 min with the rep, you need an appointment with the doctor. I would ask to be seen before the end of Feb. All the rep will do is see that it's pacing, maybe tweak the settings. Settings are a prescription so the rep can't do much without the doctor's permission and if you have a lot going on, the rep will wait for the doctor. Afib can cause a lot of symptoms, so it's more likely that's your issue than the pacer. The pacer can't stop afib, it's a gas pedal, not a brake pedal. Some pacers can try to pace out of afib,. but again, that's the doctor's call not the rep's. And if they've turned it off, the pacer isn't doing anything. 

rep questions

by bucky - 2017-01-22 17:52:19

Thanks everyone for the great advise.  I know this will help and maby Ill get some sleep tonight having my list made out finally!

Here's a neet 7 minute movie that explainis how the heart works....

by Terry - 2017-01-23 00:47:53

....and how the pacemaker works with the heart, especially advanced implanters like Mayo and university hospitals around the country. See: His-pacing.org

 

Pacemaker was reset yesterday

by bucky - 2017-01-24 14:41:16

Thanks again for all of your comments...  I went yesterday and the rep reset my pacemaker so Ide have more energy and less dizziness and confusion.  Worked out well for the first few hours after I left and no have new issues.  Is it me, or does it take awhile for my system to get used to the new setting?  Seems like its almost better to deal with how it is because when you have them try to tweek it for a better life, there seems to be a trade off from the old issues and new ones?  Is this common?  I dont mean to sound so negative.  Im just trying to learn how to deal with this and figure out what is common and what isnt.  Its been 2 months.  Am I expecting too much?  Its also about 200.00 dollars every time I go, and I know you cant put a price on health....  The rep says its hard to set my pacemaker because my system is so sensitive to anything he does, like my feeling the pacemaker every time it has to come on and he is trying to get a happy medium for me, but he cant follow me around until its as good as it can get. Thanks everyone.  Youre all fantastic!

You know you're wired when...

You invested in the Energizer battery company.

Member Quotes

I have had my pacer since 2005. At first it ruled my life. It took some time to calm down and make the mental adjustment. I had trouble sleeping and I worried a lot about pulling wires. Now I just live my life as I wish.