Pre-Pacemaker

NOT correct!!!!!!!!!

by Tracey_E - 2018-03-17 19:36:36

Please beware of Dr Google!!! There are so many fallacies on the internet along with the good information. We are the first generations to be paced long term so you won't find any studies or solid statistics, just conjecture. We have a few members here who have been paced since the 70's and are still doing well. We have members in their 20's who have been paced since infancy. We have others my age who have been paced 20 or 30 years or more. 

I, too, have CCHB. I'm 51, healthy and active. I'm already on my 5th device, have been paced since 1994, though I should have had one when I was closer to your age because that's when I first started getting symptoms. There's nothing I want to do that I cannot.  I ran a Spartan a few weeks ago, was skiing last week with my daughter who is your age, do Crossfit daily, kayak every chance I get. I've never once had a doctor tell me that this will shorten my life expectancy. 

I switched to an adult congenital practice last year so he has lots of patients like us. CCHB is rare so a regular cardiologist may only see a very few of us in a career.  I had to travel to get to him, but it was worth it because he has a lot of experience with young paced patients, with patients who have been paced many years. I adored my old cardio, but I spent 20 years being his youngest paced patient. I asked my new doc how long I could keep up Crossfit, he predicted my joints will give out before my heart. See if there is one near you, it's well worth the trip even if you just go once for a consult. https://www.achaheart.org/

If your rate is 30, you will probably be shocked how much better you feel after being paced. My symptoms came on so gradually,  I had no idea how bad off I was until I felt good again. My energy skyrocketed, no more being tired all the time and dizzy, I had stamina for sports I couldn't play before. Regardless of how we feel, it's hard on our bodies having the heart out of sync and having a low rate. Our organs are deprived of oxygen they need. Getting it is the right choice. Being paced is the key to us living a long, healthy life. Without it, our rate will drop even lower, which is much more dangerous. 

Not correct

by Chooka - 2018-03-17 23:03:39

I got my first pacer at 17.....I am now 50. I got my 6th pacer 4 years ago, and will get number 7 in about 6 or 7 years time.

Not sure where you got those figures from, or if it was just outdated information, but it is definitely false.

when I was first implanted, people and some doctors couldn’t believe someone so young would have a pacemaker, now they’re putting them in babies and young children.

Don’t get hung up on how many devices you will get, battery technology is rapidly evolving. My first pacer lasted 15 months, my second lasted 11 years (and this was back in the 80’s), 2 lasted 3 years because I had a 20 year old lead. They’re expecting my current one to last at least 10 years, if not more.

Thanks for the replies

by Grantbibby98 - 2018-03-17 23:40:03

That is a relief, think I am just overthinking it. to be honest I'm excited to start feeling more awake. the reason i found mine so quickly was because i was doing 80 hours+ with an hour drive to work each day. This combined with my heart block caused some serious fatigue. I was driving home one night and either fell asleep or passed out at the wheel and flipped my car into a tree.

Luckily i was unharmed but it did have a silver lining. I usually keep a brave face for my family, pretending i don't care but i do care really, but only how it affects them rather than myself.

Thanks again guys.

familly

by Tracey_E - 2018-03-18 10:21:08

Family is going to worry, that's what they do. It's ok to keep up a brave face for them, but it's also ok to let them  know you are scared so they can support you. Or tell a friend,  have at least one person you can be open with. Or talk it out here. Bottling up the fears just makes them grow bigger and take over our head. It's normal to be scared at any age. It's extra hard being a teenager with a heart condition. Our friends are wrapped up in cars, school and dates, while we are spending time at doctors offices where most of the patients are the ssame age as our grandparents. It sucks. 

I found that the anticipation was way worse than the reality. The surgery was easier than I'd  built it up in my head, I felt better after than I ever imagined.

Also to give you a heads up, doctors talk about the physical healing but there's an emotional component also. Some folks go through a period of blues as they heal, they worry and/or they get down. That's normal and it's ok. Or you could be llke me, I felt so energized that I was practically giddy with it and I never looked back. 

Wishing you an easy surgery and recovery. If you have questions, please ask away. There are a lot of us who have been in your shoes and we're happy to help you through this.. 

10 year life

by LondonAndy - 2018-03-18 11:21:13

I wonder if what you found was referring to the life expectancy of THE PACEMAKER before the batteries start running out, as I have seen this figure often given as an estimate.  There are frequently references to "End of Life", but these are referring to the device, not the person :)

LondonAndy

by Grantbibby98 - 2018-03-18 11:34:18

I think that is brrilliant. Made me laugh a little actually, could have been the case.

Thanks again guys everything you have said is really helping and I'm happy to be part of a new family where i feel comfortable sharing my thoughts. Look for ward to also helping others on here when I'm a pacemaker veteran.

Andy, you are brilliant

by Tracey_E - 2018-03-18 13:57:51

Why didn't any of us see that right off?? lol  

Pacemaker end of life

by LondonAndy - 2018-03-18 16:44:14

Well, it IS a bit alarming when they refer to 'end of life', and if you are super-tired it is easy to make that mistake!

Hi!

by Pinkit94 - 2018-03-18 21:09:15

Hi there, I know how you feel. I was 22 when I got my pacemaker/icd fitted in an emergency setting. Although I did have some issues, but they were resolved with no lasting effects. It will get better with time, and these devices are advancing at an enormous pace -( trust me I conduct research on these devices!), they last longer and longer, yet they are getting smaller and smaller. Your live expectancy actually increases, those statistics usually geared towards kids that were born with severe malformation of their hearts, or are in heart failure, be careful where you get your stats. The device DOES not define you, it’s just there to help you, I am pursuing a medical degree in cardiology - electrophysiology, plus I do cardiology research at two major hospital in NYC, despite the fact that I nearly died twice and have received 2 icds/pacemakers. Go ahead and just enjoy your life!

End of life

by Chooka - 2018-03-19 07:04:20

I once posted a pic on Facebook of the gauge showing how close I was to ‘End of Life’....I posted it because I thought it was funny, but I totally forgot that non-paced people don’t know the terminology. One co-worker thought the battery would run out any minute (I actually had more than 6 months worth), and another took it quite literally. 

ditto

by dwelch - 2018-03-29 04:41:52

My story is very similar to TraceyE and now yours.  I was pre-teen when they found I had complete congenital heart block we watched it for years and at 19 I got my first pacer.  And then they were not as common as they are today.  I agree that our doctors even though they see many pacer patients, even at 50 years old now (yep 31 years with pacers on number five), will continue to be the youngest patient in the office, they dont necessarily have a lot of us if any other than us.  As a parent of a teen I cant remotely understand how my folks dealt with this.

Do not get worked up about number of devices, the devcies get smaller and better every time around.  As already mentioned above they try to get them to last 10 years give or take.  I have not seen that a couple at 7 years, one maybe made 10, last one was three or four as I had to get a three lead to deal with a low EF.  This is something you will need to deal with at 15-25 years in or as in my case and some others on this site later than that.  pacing from the side over decades is not normal pacing so the heart eventually gets unhappy with this and the docs will deal with it.  all the life you have lived so far, you have another couple of decades or more before you need to remotely care about this.

Broken leads and room to fit spares in is another issue, based on others on this site remove is now not a big deal, when I got my first one it was, broken lead putting in number two have been carrying around that lead all this time, so running off of one 31 year old lead, a 24 year old lead and a less than year old lead, with a 31 year old lead taking up space.

When I got my first one they didnt even know what caused complete congenital heart block.  Now they do...

So if you DONT get a pacer, yeah, dont start a relationship, put your affairs in order now.  But if you do, that will make you normal, no reason to deviate from a normal life with a spouse and kids or a motorcycle and a sleeping bag, whatever it is you think life is all about.

The stats that I can no longer find showed making it to 19 was a low percentage deal for us.  But now they say we all get our pacers at birth and survive.  You/me/we at least didnt have to deal with the issues of being really young with a pacer in the belly then moving to the shoulder, some folks talk of the stuff being left in.  so good thing is you are past that phase.

Surgeries always carry risk, so naturally the docs/lawyers/insurance companies are going to want to minimize these, including not removing old devices if they are moving to a new site.  You will also get the extending the life of the battery stuff that perhaps other folks dont hear as they are not facing a half dozen to dozen devices over their lifetime.  Stretching out a device a few months over that devices life is not worth quality of life, you dont want to be improperly paced or out of energy, etc just to try to stretch a battery out not worth it.  Never trust the estimate on the printout as to how long the battery has to go, when it gets to a few weeks of battery life, okay that estimate is probably okay.

So get the pacer as soon as they offer it.  Esp if you are still on your folks insurace at least get many/several years before you have to pay for the next one (ideally through your own insurance).  Mine have cost me various prices based on insurance plans over the years, last one I basically hit my annual deductable a bit sooner that year than other years.  Go play all the sports you werent able to play before the pacer.  Find a spouse have kids or whatever you think life is about.  Go to college get a career, etc.  Now being a lineman (eletrician that works on power lines) or some flavor of arc welder using electricity vs gas for welding, you probably want to give up on those dreams, while technically possible you are dealing with fields that can affect a pacer, likewise working at hoover dam next to the generators there.  Anything with a high electromagnetic field that you have to get close to are not good for pacers, you pass out someone has to drag you out of the field then you are okay.  Have kids, grand kids, play pro sports, get a desk job, whatever, your heart is definitly not stopping you.  Heart block is one of the easy ones for a pacemaker.

Curious to know if currently you feel your heart beats I assume they are telling you your heart is getting too big because it has to work too hard, muscle wall is getting too thick.  I could see my heart beats between my ribs, and feel every single one it was just normal.  When they put the pacer in it was disturbing for a bit, felt empty inside without that constant rythm but got used to it.  curious to know if you are in the same situation.  and if so dont worry just keep checking your pulse to confirm you are still alive.