Pacemaker for 38+ Years

EF

by annieg - 2020-08-04 16:57:48

Thank you Swangirl. I've not heard of the EF so will ask during/after my echocardiogram. One thing is - my leads are OLD - one from 1994 & one from 2008. I got my latest device in 2017 and they chose to just use the old leads because it's not a great procedure to get them out when they've been in there so long. I'm hopeful that possibly a lead change will help things. But my mind keeps wandering to how long can I go without damaging my heart? And it's tough to find any documentation. I just looked at my report from my device check yesterday - it says EF % Unknown so will see what that is after my echo later this month.  I have started a list of questions for my cardiologist, appreciate your input. 

Leads

by barnet38 - 2020-08-04 17:11:31

Hi!

I am 39 and received my first pacemaker at 17 due to CCHB.  I'm on pacemaker #3 with the original leads.  The ventricular lead malfunctioned 2 years ago, but my EP was able to get it working in bipolar mode.  My EP specializes in extraction and will be extracting/replacing the lead if it shows any "noise" or during my next battery replacement, whichever comes first.  He thoroughly explained the process to me, and explained how it has become much safer in recent years.  

I'm going to the device clinic for a check up next week and plan to ask about the heart muscle damage you are concerned about.  I'll be sure to share any information I receive!

Right ventricular pacing

by Gemita - 2020-08-04 21:21:33

My understanding, as a patient, is that sometimes with chronic right ventricular pacing alone, some of us, although certainly not all of us, will develop heart failure symptoms either quickly or over time.  This can occur as a result of a loss of balance (synchronisation) between the two ventricles.  One means of restoring synchrony would be to upgrade your pacing system with an additional lead to the left ventricle (known as CRT - cardiac resynchronisation therapy).  Your echo will be looking to see whether there has been any deterioration in your ejection fraction and if this has occurred and you are suffering from heart failure symptoms, your doctors may recommend CRT.

But from your post you sound in really good form so hopefully your long history of pacing has not had a detrimental affect on your heart.

In case of interest, I found the following link to be really helpful in explaining pacing induced cardiomyopathy which may be reversed in some cases by CRT.

https://onlinelibrary.wiley.com/doi/epdf/10.1111/jce.14277

noise

by Tracey_E - 2020-08-04 21:22:23

Yes, it's possible to have damage after a lot of years paced. However, had we not been paced all those years the damage would be much greater. My ep specializes in adult congenital. I always worried about my function dropping off at some point, but he said that if it doesn't happen i the first 5 years paced, he rarely sees it happen after that, at least as caused by pacing. We are the first generations to be paced for a lifetime so there is a lot they don't know. I switched to the adult congenital practice a few years ago, it's so different from the regular practice where I was their only long term paced patient! 

I've only heard of noise used to describe a lead that is starting to age, not in relation to function. I had one with ruptured insulation. They were able to program around it and keep it working another 5 years before I had it replaced. I'm 53 with one lead from 1994, one replaced in 2010. Welcome to the site! Glad you found us. 

Pacemaker Induced Cardiomyopathy

by AgentX86 - 2020-08-04 22:49:11

As others have noted, the issue is the lack of synchronization (dyssynchrony) between the right and left ventricles caused by pacing in the left ventricle only.  In a normal heart, the impulse that starts the ventricle's contraction is passed from the atriu, through the AV node into the Bundle of His, and eventually is split into the right and left bundle branches.  Since this is symmetrical, both ventrcles contract at the same time.  The problem with pacing in one ventricle only is that the pacing signal enters the right ventricle and necessarily there is a delay between the right and left ventricle. 

My cardiologist explained it to me by a mind experiment.  Think of a water baloon in your hands.  Squeeze one side and it bulges out on the other.  Now squeeze the side that's expanded and the other bulges out.  This can cause the heart to enlarge (cardiomyopathy).   This causes the left ventricle to become less efficient (measured by the "ejection fraction", or the percentage of the blood in the left ventricle that's pumped out with each beat.   A "normal" heart will have an ejection fraction of 55-60%.  Anything under 35% (or 30%, depending on who you talk to is considered cardiomyopathy. The ejection fraction can be measured with a sonogram (in the case of the heart it's called an "echocardiogram").

Pacemaker Induced Cardiomyopathy isn't always permanent.  In many cases it can be reversed by resynchronizing the ventricles.  This is done with either a CRT (cardiac  resynchronization therapy) pacemaker or a pacemaker with the ventricular lead place into the bundle of His.  Both are tricky and require a specialist trained to do the procedure and they're not always successful.

The bottom line is that you want the echocardiogram.  It's a simple, completely painless, and pretty quick (half hour, max) procedure. 

Welcome!!!!

by dwelch - 2020-08-07 01:28:08

Happy to see you here, you are a long timer like Tracey_E and myself and a few others.  

I have had pacers for 33 years, my guess is you have heart block like myself and some others and started young.  I am on my 5th device.  

AND

Yes, this exactly happened to me.

And this is not uncommon for folks like us, being paced for 15+ years or 25+ years or whatever depending on what you read or talk to, being paced from one side in a place that is not where the body naturally paces from, can over a long period of time affect the heart negatively.  They know a lot more know than they did 30+ years ago, so in another 30 years will see how the new folks are getting on.  When I/we started removing leads was not a deal, now it is.  I have a 33 year old lead, a broken not being used 33 year old lead, a 24 year old lead and a few year old lead.

Probably in that 15-20 years with pacer range my docs (I have moved and because of how insurance companies worked have had a handful of docs over that time) started me on echos, looking exactly for this issue.  It finally happened a few years ago, my EF dropped and got below 40 deeper into the 30s.  normal folks are above 50 or something so even 40s was not ideal, but when it finally over all these decades dropped it was time.

I now have a three lead, bi-ventrical pacer, meaning one upper lead and two lower, so that they can independently fire the ventricals rather than a pulse wave starting on once side the crossing the heart to hit the other side.  

I was under the impression that it would improve my EF, then after the first echo after the new pacer it had, it jumped up.  But the doc had said she expexted it to just stop falling.  So I guess that was extra special.  And I dont need to do echos anymore, have been doing them forever now once a year.

I have complete congenital heart block which is another way of saying, third degree heart block from birth, wasnt found until my early teens, waited a while and first pacer at 19, am now in my 50s.  The broken lead is still in there I apparently have enough room for four, so we didnt have to remove it.

So happy to see you here, within the pacer community those of us with decades and many devices are not unicorns but not all that common either.  And you started really young so you have some stories to tell I bet.  There were some teens that stopped by a year or two ago one was being bullied by kids at school, I hope that didnt happen to you.  Sometimes we get a parent here now and again with a child like you and they naturally are quite worried.  Hopefully you can give them some insight on what life with a pacer is really like.

Anyway, hope you stick around.  As far as what is going on with you, it is not uncommon, it is expected for some percentage of us.  WHEN it happens varies, but being paced from one side does have long term effects on the heart, three and four lead pacers are not a new/specia/experimental thing.  I started echos over 15 years ago, and when I moved here and got a new doc was when they explained it to me, the prior one had not (was a very good doc too, just had me do the echos I didnt ask he didnt volunteer).  Has nothing necessarily to do with starting as a kid, it is just long term unnatural pacing from one side thing.   One more step in your journey with pacemakers.

They actually cut pacer number four short, it didnt get to live out its full life it had like 3 or 4 years on it when we did this swap, my others have done okay 7+ years.  It was supposed to be a 13 year pacer, oh well we will never know now.

History

by annieg - 2020-08-10 12:30:55

I was born with congenital heart block - 3rd degree. When I was 5 I was walking home from kindergarten and fainted. I was lucky to get my care at the University of Iowa and my first pacemaker implanted under my ribcage. A couple months down the road - lead issues so another surgery. Then my next pacer in my shoulder at age 14, suffered a staff infection and laid in the hospital for 45 days without a pacer trying to get rid of it, put a new pacer in my right shoulder. I have had several replacements since then. My heart beats about 30 bpm without it. I think it's interesting because I never have cared much about the details of why I have it - since it's just always been there and my parents took care of everything till age 24 or so! Now my care is at the Iowa Heart Center in DSM and all going well. Looking forward to my echo later this month and I'll share what I learn. Thanks for all the comments - I am so glad I found you guys. - Ann