What I'd Wish I'd Known to Ask...

I've had my PM for SSS for almost 5 months. I will be meeting with a Rep. for the first time Jan 7th. Since I'm new to all of this:
Q:What should I ask him about???

I am really young, I was very active prior to heart issues, and I have several autoimmune diseases (if that makes any difference). Advice/questions to ask would be very much appreciated!!

Thank you,

Spunky_1

2 Comments

Thanks so much!

by Spunky_1 - 2015-01-02 10:01:50

Thank you so much, TheKnotGuy, I really appreciate you taking the time to answer my questions.

I have asked for a printout before at my EP's office the PA really acted weird about it so I never asked for another one. The EP is great, his staff - eh, not so much. I can see why it would be beneficial though - I usually like to keep track of that kind of stuff so thank you for reminding me that I need to ask for this.

My autoimmune has caused a whole lot of issues. My body is still attacking the pacemaker site as well as the rest of my chest wall. I have to go back in to have another lead placed into the ventricles on Tuesday. The problems leading to needing a second wire are ventricular pauses, mis-timed beats due to slowed A/V node conduction and fainting. The EP is hoping a second wire will fix everything. I am hoping that it provides a better window into what is going on. The pacer (as of now) says everything is normal, but I have passed out 8 times in the last 5 months and the majority of them have been when I was lying down or sitting. One was while I was exercising and the last one was standing. I just want to stop this. And I would really like to drive again at some point!

I think this second surgery will probably compound the autoimmune issues.

I never adjusted to the Metoprolol - my EP switched me to Pindolol which I tolerate better. I was still having tachy runs and felt crummy so they added in Cardizem. I started fainting again so they repeated a ambulatory telemetry. Twice. They were unable to determine the precise rhythm although they said it looked like it could possibly be A-Fib or A-flutter or some sort or reentrant tachy so they added in Flecainide.

I still had issues, but they said that my heart rates were not fast enough to cause the fainting - especially lying down - so there must be something else going on. I pushed for the addition of a second wire in the hopes that it would A) fix the fainting or B) at least provide a window into what the heck is going on. The EP agreed.

Thanks for all your advice - I hope that they are able to invent something or develop something that will be helpful to you in the future. When your heart doesn't work right not much else matters.

Spunky_1

Get PM report

by Theknotguy - 2015-01-02 12:01:23

You'll want to get a printout of your PM report. That's the first thing to ask. Second is to ask if any abnormal stuff. Third is to ask if there is anything else you can do to help your situation. Some of the questions will have to be addressed to your EP as the tech can't answer any questions that might be considered practicing medicine. Some techs are pretty touchy about it because they've gotten in trouble with doctors.

While you may not be able to read everything on your PM report, it's good to have around because you can see for yourself what changes have occurred. It's also good to have past reports future readings because you'll have a history to consult. (Not necessarily at the doctor's office, but when you get home.)

Based upon past posts, you've had problems because of autoimmune situations. Questions along those lines would be if you've noticed any new problems and what to do. Also if any changes in medications are indicated at this time. Mostly you know how you feel and what needs to be addressed. Be prepared for no good answers. (My doc told me we were doing everything we could and most of my issues were hereditary. So not too much else could be done.)

Are you still having problems with Metoprolol? Any suggestions for changes?

Sounds like you are adjusting well after the initial rocky start. Hope things continue to get better for you.

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