Pacing 100%

Two lead Medtronic implanted 2011 for bradycardia. All going ok until cardiologist began questioning why I'm being paced100% of the time and thinks third lead should be inserted. EP disagrees and says another lead would not make a difference since I have total heart block and signals sent from atria get lost and not accepted by lower chamber. I feel the EP is the expert but the cardiologist who raises this issue at every visit has now planted doubts in my mind. Also angry that I now feel I have to incur expense and uncertainty until I get another opinion to break the stalemate. Anyone out there who is paced all the time and does it cause shortness of breath or other issues?

4 Comments

Lots Of Us Are...

by Many Blessings - 2013-05-10 10:05:26

Hi,

I, like many others out here, due to an AV Node ablation, and other issues, am 100% paced and dependent. I have a CRT-P, with 3 leads. I am super active, exercise every day, work full time, and can pretty much keep up with anyone, most of the time.

Once my settings were set correctly, I was no longer short of breath. That is important to remember after getting your procedure done. Don't panic if you don't feel well right away. Your settings most likely will need to be changed, and until they are exactly right for you, you may feel like total "you know what", or just "not quite right". BUT, if your settings are set correctly right from the start, or shortly thereafter, you will feel great!

Sometimes, getting it right, takes a couple of setting tweaks so make sure to let your doctor & PM tech know exactly how you're feeling. That way, they can help you, whether it be you're out of breath, have tingling, weakness in legs or hands, creepy feelings anywhere, diaphragmatic pacing, etc. They can fix it!

No one told me that when I got mine done, and I thought "this is the way it's going to be" (and I was NOT happy!) When everyone here suggested a setting change (especially Rate Response), it was an immediate blessing! I made an appointment, they made some changes, and like magic, I walked out of there feeling incredibly well! Who would have known, a little turn of the dial or flip of a switch (or whatever they do) would make that much of a difference.

Even though I still have chronic A-fib, Cardiomyopathy w/CHF, and all the other heart issues that were there before, I am not short of breath (which makes life wonderful!) To me, that is amazing! In fact, today we are taking off for yet another hiking trip (I'm trying to get in as many as I can this year!) I could not do that 2 years ago, and was told pretty much, my life as I knew it, would never be again. Luckily, the suggestion was made to "lets give this a try", and for me, it worked!

I won't lie, there are "bouts" of issues that you "may" or "may not" have while 100% paced, depending on your heart issues, but for the most part, if you're like me, being 100% paced will HELP you! I really think others out here in our situation will tell you the same thing. Are there times I wish I wasn't 100% paced/dependent, yes, I do have those days, but most of the time, I know it's the right thing for me.

Good luck, and make sure to get AS MANY "2nd" opinions as you need to make your decision. Don't hesitate at all, to call "just one more" cardio doc or EP doc to see what they have to say.

Also, listen to what others here have to say to you. There are A LOT of us out here 100% paced. If you need it done, you need it done, and luckily, the procedure and PMs (whatever kind you get) are there to help us live a better, healthier life, if not a longer one! My vote is for all three!

Blessings and best of luck in you decision! Keep us posted! We care!


Adding a third lead

by golden_snitch - 2013-05-10 10:05:42

Hi!

The difference a third lead would make is only that your ventricles will be re-synchronized. Numerous studies have shown that a high percentage of right ventricular pacing is associated with a greater risk of developing heart failure and atrial fibrillation. Now, the heart failure is due to the ventricles beating out of sync. Only the right ventricle is stimulated, so the electrical impulse spreads from the right to the left ventricle, which can lead to the left side pumping a tad bit later than the right side. However, this does not necessarily happen in everyone who is 100% paced in the right ventricle. In some patients it never happens; in others it happens only after many, many years of being paced; and in a very small percentage of cases it can be observed just months after the implant. So, I guess what your cardio is suggesting with the addition of a third lead, right now is only a safety measure to prevent the occurence of heart failure or at least reduce the risk. However, if you are already dealing with shortness of breath that could very well be a sign of the ventricles beating out of sync. Has your cardio mentioned that he's seen something in your echo (ultrasound of the heart)? If he's seen a significant drop in your so called EF (ejection fraction, normal is 60-80%), then this could be the reason why he's now insisting on adding a third lead.

By the way, the EP should know the difference a third lead can make in someone who's 100% paced in the right ventricle better; it can make a difference and there is in fact lots of discussion about implanting CRT devices (bi-ventricular pacemakers) in these patients.

What I don't get is that on the one hand your cardio is questioning that you need to be paced 100%, and on the other he wants to implant a third lead. If you have a complete, permanent heart block, then the 100% is a must, there is simply no way to work around that. If you, however, do not have a permanent block, but an intermittent, then the pacemaker settings can be optimized to reduce the amount of ventricular pacing.

Hope this helps.

Best wishes
Inga

PS:

by Many Blessings - 2013-05-10 11:05:55

Again, make sure to get a LOT of "2nd" opinions, feel comfortable with your decision, and either go for it, or hold off until you feel it's absolutely necessary. That is important, and my advice to you.

In case you forgot (LOL), I wanted to mention again....

I'm taking off for another hike in the mountains today! In fact, THREE days! I can't wait, and am sitting here smiling as I'm looking at my pack of what we're taking!

Thanks for listening! I couldn't help but mention it again, because I'm so excited! :)

pacing

by Tracey_E - 2013-05-10 12:05:43

A lot of us are paced 100%, if we have complete (3rd degree) av block that's to be expected, by definition the signal never gets from the atria to the ventricles.

Rather than a third opinion, you might want to consider a new cardiologist. Some drs are fast to do procedures and prescribe meds while other drs take a more conservative approach, wait and see if we really need it. Personally, I won't do anything that isn't absolutely necessary so drs that push meds etc annoy me. But that's just me :o)

If your EF has dropped significantly, if you have symptoms and are no longer able to go about your daily activities, then it's time to think about a 3rd lead. There is a chance that having the 3rd lead sooner rather than later can prevent heart failure, but they haven't been around long enough that they really know for sure and there are no guarantees you are going to end up in heart failure anyway so imo it's an unnecessary precaution. I have the same condition as you. I got my first pm in 1994. I plan to put off the 3rd lead as long as I possibly can. I feel good now so I'm going to leave well enough alone and let all those marvelous bio-engineers out there invent better and better ways to pace.

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