Hi Everyone,

I'm new to the club -- thank you to the gentleman who responded to my contact regarding trouble joining... trying again worked.  Don't know what happened the first time, but happy it went through the second.

I got my first pacemaker at 6, almost 50 years ago, due to nerve damage from a VSD repair.  I'm about to get my 9th...10th? (yes I've lost count)...this Friday.  

I'm so grateful to have found a place where I can ask others like me questions about their experiences.  Those here who have had pacemakers for most of their lives know how hard it can be to find anyone with similar experience.  Where I live, even most of the doctors have no experience with patients like me.

I'll do some more browsing and searching on the forums, before I start inundating people with questions. :-)  Happy to be here,




Welcome to the club!

by admin - 2019-09-10 20:04:31

We're glad you found us too!  I'm also happy you were able to join when you retried.


Fifty years?

by AgentX86 - 2019-09-11 09:06:46

Tenth pacemaker? We're the ones who should be asking you questions! ;-)

Welcome to the group and I hope you're a regular participant.



by Tracey_E - 2019-09-11 09:11:03

Glad you found us! I'm a newbie compared to you, 5 devices in 25 years. :o)

Welcome. You've come to the right place.

by Gotrhythm - 2019-09-11 13:12:07

Having a pacemaker so young, and when not that many people of any age had one, must have been very lonely at times.

Glad you found us.


by TreLL65 - 2019-09-11 16:43:05

for the welcome.  You're all so kind!  I'd love to be able to help others out with answers to questions.  Though I'm dubious that I have many answers. :-)  My experience seems so basic compared to the experiences of many people who post.  For example, until I read posts here, I didn't even know there were special terms for when the demand function shutdown and when the battery was actually dying...EOL and ERI.  I just knew what they felt like and what needed to be done.

For the heck of it, I posted a massive BIO of my pacemaker experiences -- because I'm obviously so fascinating that everyone's going to rush to read it, LOL -- and, unless I somehow missed a device, I can say with assurance that I'm about to receive my 9th generator.

Very interesting and thoughtful comment, Gotrhythm.  I don't know that I thought about it that much one way or the other when I was young.  It's been more since I've experienced doctors as an adult, that I've wished for other people in my situation, so I could compare experiences and care.

32 years

by dwelch - 2019-09-16 00:40:12

I am 32 years with pacers, on my 5th pacer.  Started at 19 years old.  You are way ahead of me too.

I read your whole BIO, all the way to the end (thank you for that).  I too have many questions for you, but will hold back.

Even at this age you/we are still the youngest patients in the doctors office.    And I have retired one doc as well, expect to retire more.  Just how it is.  The nice thing is that when you go for an echo or something like that, even at 50 years old its the one hospital visit where they call you and treat you like a young person.  Every other visit, its the "well just get used to it" kind of thing.

Glad you found the site, if you stick around you will be able to help so many people.  Tracey_E and I are ceratinly not the only ones with decades of pacers, but you/me/we are the exception not the rule.  Saw a teenager post sometime this year, kids would tease her, I assume you had that your whole life too.  

I have a broken lead from...25 years ago.  Then because of the low EF had to go with a three lead biventrical on number 5 cutting number 4 short.  Four leads total on one side was a concern, talk of moving to the other side began, but they managed to get the fourth one in so that discussion can happen some other day.

May ask, did they remove your childhood pacer and leads?  And did they remove all the left side hardware as well?  Some folks have said they leave the childhood ones in.  The time period when you were transitioning to an adult pacer is probably similar to my first device, you are 2 years older than me from your bio.  With the broken lead between my first and second was told by that doc then that you cannot remove leads without open heart surgery.  Today it seems like it aint no thing so long as you have a good surgeon.  At that time they didnt know what caused my heart condition, now they do.  

Not so much anymore, but certainly as a kid would have docs listen to my heart more than needed for that visit, would upset my mom more than me.  I actually think it is good, particulary the years before I got my pacer, how else is a doc going to know what these conditions sound like?  Perhaps today there are countless recordings they can download and listen to...

Sounds like you have had more bad docs than I have, I have had mostly good ones, had one I had to "fire", another was pre-pacer and we moved.  Hope you have better luck going forward.

It does feel good to find a site like this right?  Even with decades of being on your own in the dark figuring things out, and having figured many things out.  Hearing the different experiences, finding out that sometimes our docs were better, sometimes not.  

They let you keep your devices?  I kept the first three, but because of legal fears they wouldnt let me keep the last one.

Glad you stopped by, glad you wrote that bio, maybe I should write one, I tend not to do those kinds of things, I just write overly long posts that I regret shortly after...Your bio is good, please leave it there, no regrets. 

Today with these home monitors, is so different from back then.  My first doc didnt have the phone check box, I would get a checkup every 6 months as we got close.  Second doc did, but phone checks were spread out to three months aparat.  At least two of the first three went into the whatever safety mode, locked at 65 BPM.  Third doc, phone checks every month as it got close, doc(s office paid for them as insurance wouldnt).  I dont have a take home box for this one, so six month visits instead of annual, no phone checks, I still have both of my phone check boxes from way back when.  I guess we will see what happens as this device gets closer.  Still just barely into it so have a long way to go.  On the flip side my doc told me that insurance companies dont want to do early replacements and are likely to force the patients into that mode before they will replace the device.  So everyone will get to enjoy what it feels like in that mode.

Please dont hesitate to post more questions, and or some way open up a dialog so that we can all share experiences.  How things are different now vs then.  How folks like us who are used to how it was back then should be asking different questions now or have different expecations based on what is available now.



Looong reply to dwelch and anyone else who's interested

by TreLL65 - 2019-09-19 20:58:27

Hi dwelch, and everyone else,

Thank you for your post and for sharing your story.  I very much appreciate it.  I’ve read some of your previous posts as well, and it sounds like you’ve led a ‘very interesting life’ too. :-)  I don’t know why you’d regret overly long posts…unless it’s the amount of time they took to write, LOL.  I’ve enjoyed them.  Sometimes it takes a lot of words to be sure we get our full experience and intention across.  You’ll see I’m *very* wordy and wouldn’t know a short post if it walked up and bit me.

I’m glad you found my BIO worthwhile.  It’s such a long story, it’s hard to decide what people would find useful and not.  So, I figured just reference in-context experiences in posts and stick the full version in BIO, so people could check my bona fides if they wanted.

I certainly know what you mean about being the youngest patient in the waiting room!  I will say, after leaving my childhood EP, I’ve found my doctors to be far more cautious and conservative.  I could never decide if this was a general move toward conservatism from EPs, or because they weren’t used to dealing with normal prime-of-their-life adults with PMs.

It’s a shame that the doctors’ lingering over you bothered you mother, but I understand how it could be upsetting.  I was lucky that my condition was ‘easy’ to diagnose and fix, but every doctor I know has made a point to introduce me to any student or protégé that’s around.  Like you, I’m happy to add to their learning.  I’ve often thought I’d make a good visiting lecturer for EP students.

You suspected your first pacer corresponded to my transition to an adult pacer.  If you consider the activity demand to be my first ‘adult pacer,’ then yes, I think our timelines do correspond from there.  I just tend to think of my first ‘adult pacer’ as the first one they placed in my chest, at around 12, since my doctor described it as the ‘adult placement.’  We do seem to have had very similar experiences, so many years with PMs, broken/bad leads, ‘threats’ of moving to the right side.  At least I’ve been lucky and haven’t had the triple lead pacer suggested.  I say lucky because I assume it’s even bigger and I don’t know how they’d squeeze that into my chest.

So much information to share where to start --

Old hardware:   All of my old generators have been removed at the time of replacement.I can’t imagine leaving a spent generator in a person. Through all my changes, I’ve had only one generator returned to me.  Happened in the 2000’s and shocked me.  After I got over the surprise, I thought ‘why not; I paid for it.’  Or insurance did, but I worked to have the insurance, LOL.

I have 5 leads, none removed.  This new doc said he could do the surgery to remove the ‘newest’ leads…three from the 2000’s, all intravenous, I think.  He said the oldest two from the 1970’s, and outside the heart, would require OHS and he wouldn’t touch them.  Since I didn’t get a new lead when I got the activity demand pacer, we can’t compare that to you.  Do you know if your first lead was intravenous?  If it’s outside the heart, I’d say you’re in the same boat as me and open heart is still necessary.  What about your second lead? Outside/inside?  My outside leads don’t bother me at all.  The only reason I’d like them removed is to make me MRI safe, but OHS isn’t worth that.  The doc did say an MRI might still be possible if it was absolutely necessary.  I suspect life threatening issue was the kind of necessary he was talking about.

Our phone check experiences are a little different, but you still had the same issue I did with neither phone checks nor office visits catching how close your device was to shutting down.  They tell me it can’t be estimated to more than a couple months, but I think they should be able to tell to within two weeks. JI won’t have to initiate checks with this new one.  It has the equivalent of Bluetooth.  Medtronic is sending me a box I’ll place next to my bed.  On a designated night while I sleep, probably every three months, it will communicate with the pacer then send the info to the doctor’s office.  My neighbor’s husband had this kind and my impression is that I won’t have to initiate anything after setting up the box.  I’m ambivalent about this, since I’ve always felt like I could feel the checks.  We’ll see if I sleep through them or not.

Having a pacemaker as a teenager:  I would be happy to talk to any teenager or parent whose child is getting a pacemaker now, though today’s experiences are vastly different from mine.  It would be best if there were someone on here that was a PM teenager in the 90’s or later willing to talk to others.

I was lucky, or maybe thick-skinned as far as teasing goes.  I kind of remember one girl asking about my scars once in the high school locker room, and it coming across as a morbid type of curiosity.  I just shrugged, gave a short explanation about surgery and needing a pacemaker afterward and let it go.  Maybe there was no teasing because I honestly didn’t care about the scars or what others thought of them.  I was alive thanks to those scars.

On the flip side, I dreaded team sports in gym, when students got to pick teams.  Obviously, I couldn’t keep up with my peers physically, and I was always one of the last to be chosen.  It’s a sad state of affairs when you’re pathetically grateful that you were only the next to last to be picked. :-)  I think that’s partly why physical activity and being good at tennis is so important to me now.

I agree with you about starting conversations and sharing information.  Next time I have time to post, I’ll start my first one, on the appropriate forum, with a left versus right debate. :-)

I’m also open to any and all questions anyone wants to ask me about my personal experiences.  You can ask in the forums or PM me.  And, I’m finally shutting up; I promise!

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