Problems with being 100% paced

long time paced

by Tracey_E - 2017-11-27 14:12:10

Does your doctor have many younger patients with CHB? At the risk of disagreeing with a professional with more education than me, it sounds like he doesn't have a lot of experience with av block. It's normal for heart block to progress to the point we are 100% paced. Most of us are 100% paced from day 1. I wouldn't call it the heart getting lazier so much as the normal progression of the condition. The pacer always gives the heart a chance to beat on its own before it paces. It's reactive for us, not pro-active. 

What has he tried to get the heart to beat on its own? With av block the signal between atria and ventricles has broken down so there isn't a fix other than pacing. It can't be physically repaired, meds won't make a difference. You can tinker with the settings to make a longer delay for the ventricles to beat on their own, but if there's no signal coming from the atria, it's not going to matter how long you wait for the ventricles to beat, no signal is no signal so the pacer will always take over. Does that make sense?

It's good to have an annual echo to track function. While it's possible for heart function to drop after years of being fully paced, it's not a given. I've been paced every beat since 1994, my EF hasn't changed. I switched to a congenital specialist last year and he said that in his experience, if we go 5 years of pacing without a change in EF, then he doesn't consider it a significant risk. 

I've never been told to expect more problems as I age. In fact, I've been told that I'm healthier than a lot of patients that aren't paced and that it shouldn't have any impact on my life expectancy. My biggest risk is when my leads go bad and need replaced. I had one replaced in 2010, my other is original from 1994 so I'm out of space. If one of them goes bad, I'll be high risk due to how long I've had them so I'll be referred out to a specialist and traveling to a bigger city. A hassle, probably a bit scary, but nothing I lose sleep over. When the day comes, I'll deal with it then get back to being active and living my life. I do Crossfit, hike, ski. When I met the congenital specialist, I asked about my ability to stay active as I age. He said he predicts my joints will give out before my heart. 

My personal opinion, I would not consider beta blockers for one short and isolated incident. But I hate drugs and won't take them unless I can't talk my way out of it, lol, so take my advice with a grain of salt. More than one episode, sure. Sustained, absolutely, I'd even be discussing switching to icd depending how high and how long it stayed there. Just once that was super short? I'd be drilling them on the odds of a blip in the pacer report rather than my heart actually going that fast. At the very least, I'd ask for a Holter to see if there's any other VT going on that the pacer isn't picking up. YMMV.

Advise

by liz - 2017-11-28 13:13:18

Tracey and Robin, thank you for your time and it really gave me a lift this morning. I am usually very positive but this was starting to get me down, all doom and gloom. I take on board what you both say and will ask for the holster. Interesting to hear that you can ski, my doctor told me no skiing, no yoga, no tennis and try not to use the left arm.

feeling more positive!

get another doctor

by Tracey_E - 2017-11-28 15:46:13

Why on earth would they tell you no to all of that?? Do you have anything else going on other than the av block that would be a reason for all those restrictions? Even the most conservative doctors I've hard of aren't nearly that restrictive. My exact instructions are stop if it doesn't feel right and don't do anythig stupid (had the same doc for 20 years, he knows I like to push it lolol). It's time to find a new doctor, preferably one active him/herself and with other active patients.

If you don't use that arm, you will develop shoulder problems. Something to think about... the leads go into the heart, come out of the vein where they are screwed into the pacer. There is usually slack that is coiled behind the device. By the time the leads have been there a few days, scar tissue is building up holding them in place. No amount of moving the arm is going to dislodge them all the way down in the heart. After a year, it takes a special laser to get them out. Arm restrictions are for the first 4-6 weeks only, even that  much is debatable and new studies are showing it's not necessary. Beyond that? Crazy. I was lifting 100# overhead yesterday at the gym. I deadlift my bodyweight. I'm almost up to my bodyweight on squats. I've been doing the heavier weights since 2010, no repercussions with the pacer no lectures from my doctor. 

The best thing we can do for ourselves is stay fit, keep the heart muscle healthy and strong. We already have a compromised electrical system, it would be just plain foolish to not take care of the muscle with exercise and the arteries with eating well. A doctor who doesn't agree with that and loads you up with needless restrictions is not doing you any favors.