Complete Heart Block

Hi everyone, my battery was changed in 2019. I'am going on 32 years now as a pacemaker dependent. I have 3rd degree heart block... and I have been doing well for the most part, ... I did experience a lead fracture in 2009, but that was fixed.. It has not been until lately, that I have begun to worry about my condition since I have been a dependent for more than 30 years now.. I feel blessed but occassionally wonder if anyone has been a pacemaker recipient for this many years or longer than I have? My concerns are based on the leads. I did not have the fractured lead extracted, it has not caused issues...but I'm thinking of long term possible issues...

 

thanks ~ 


3 Comments

hello!

by Tracey_E - 2020-03-08 17:49:55

You're a few years ahead of me, I'm coming up on 26 years paced. I also had one lead replaced, in 2010, the old one is still capped off in there and not causing any problems. We have a handful of members who have been paced longer than us and continue to do well.

Something you might want to do is find an adult congenital clinic. When I turned 50, I switched from a regular cardiologist to someone who specializes in adult congenital. My old cardio was fantastic but he didn't have any other patients like me. He kept an eye on my pacing reports and ejection fraction, but that's about it. He'd always say I'm doing great, see you next year. No talk of the future, or how to make sure I keep doing great.  The new ep sees people paced for a lifetime all the time so he has a different perspective. We had a great discussion about long term prognisis, what he considers my risks to be down the road.

I always figured my biggest risk would be loss of function (EF) but he said that if people go 5+ years being paced without a loss in function, he almost never sees it happen later. He said my biggest challenge will be when one of my current leads goes bad and I'll need an extraction. He's not particularly worried about that, but the day will come because my current leads aren't going to last forever. He encourages me being highly active, said he expects me to be able to keep it up and my joints will give out before my heart does. I've never once, in all the doctors I've seen since I was diagnosed, been told this will shorten my life.

This is where I found an adult congenital clinic

https://www.achaheart.org/your-heart/clinic-directory/

Thanks for sharing

by Nina38 - 2020-03-08 19:04:38

I will definitely do my research on this. 

 

thanks~

almost 33

by dwelch - 2020-03-13 01:54:38

My first device was implanted in may 1997.  You, me, Trace_E and others have CHB.  One of my original leads broke during the replacement 7 years in and a few years ago switched to a three lead, so there are four leads in there one capped, three brands three ages.  No other issues, pacer looks great. 

My EF had been dropping and once it got into the 30s we switched to a three lead/biventrical, and it came back up.

Do they do the test where they basically turn it off and watch the underlying rythm?  They do for me and while they may or may not use the word dependent, a lead breaking is not necessarily instantly fatal.  If that is what your concern is.  Last visit there was a nurse/tech in training I guess and she showed this person that specific test which if you have/had been shown that it is very easy to see CHB, doesnt take a stress test, etc, just a few seconds worth of monitoring.  

While all procedures have risk, lead replacement is not uncommon now, supposedly the surgeon in the pratice I see is the local guy you want to use, I assume/home each good sized town has one ore more. (I have no way to know since my EP is in the same practice, but I trust her so as a result trust the surgeon, he has done my last two pacers and this new lead).  Back when my first lead broke I was told removal was not possible, now these decades later and as you see in other posts, it is a thing now.   Likewise back then they didnt know what caused CCHB, now they do.

One main conversation we had with my last device was because I already had three leads is there room for four and what did we want to do about that if there wasnt.  Put the fourth one in and remove the bad one or tunnel over to the other side.  Fortunately Im a big guy and I guess there was room.  as part of that conversation the doc mention preserving the right side for the future.  Meaning at some point we may need to move over to that side.  

So I started at 19, am around 33 years in, who knows how long I will live, but in theory decades on the other side for new devices starting with whatever lead tech is available at that time.  

This is not just me its you its Tracey_E and the rest of us with a lifetime of pacers.  We have the other side and there are other places to put a pacer.  And as some folks have asked or pointed out maybe some new tech will come along if we wait long enough.

I hope this helps.  Im not worried about my pacer or leads.  I dont know what age you started, I took a day off on what I estimated to be my half life day for reflection, half my life with a pacer half without, from that day to now it has been more than half my life.  No worries nor regrets.

 

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