Young People with Pacemakers

not quite

by dwelch - 2020-03-13 02:20:45

I was diagnosed pre-teen, and got my first pacer at 19, so not as young as you.  First device almost 33 years ago, i am on device number 5.   Mine is in the typical place which is left upper chest area. 

But my understanding is with growing kids they can/do put them elsewhere so maybe that is why that is where yours is, and expect the techs to forever not know this and have to be told.

For those years before I got my first device any time I saw any doc they saw my chart and wanted to listen to my heart like I was a lab rat.  Seemed to upset my mom, but didnt upset me.  I hope you either didnt have that experience or also tolerated it if you did.  With a pacer there isnt anything for them to listen to, just sounds normal.

I am much older than you at 52 but even now I am and will for a long time to come still be the youngest patient in the waiting room and in this practice.  That will be your normal as well unless you happen to be lucky and have a doc with more than one, or live in a city large enough.  Expect to always be the youngest, but if not then that is good.

The thing I like to say here at this site is find a doc you trust and trust the doc you find.  If you build that trust and they say we need to do X then let them do X, doesnt mean you shouldnt insist they explain everything.  Dont be afraid to "fire" a doc, this is a lifetime commitment for but it isnt for them if you arent getting the right treatment find another.  And that doesnt mean some docs are bad docs necessarily, some are, but sometimes its just a matter of communication, one doc may communicate with some folks well and not others, you need one that communicates well with you.  Just saying this as while you are well into adulthood you still have a long way to go and may changes towns or as has happened to me and probably will again insurance garbage may force you to change docs, changing jobs may force you to change docs, etc.  The doc I am seeing is an EP which is what folks suggest for us, but the pratice she is in there is a surgeon, or two/few and other docs, she manages the device someone else puts it in, I am perfectly fine with that arrangement, when I moved ot this town was very unhappy with that doc would not talk to me while doing the test or messing with the device, he adjusted my limits I had at that time been using for 15-20 years, breifly mentioned them later, and refused to discuss it further, and refused to put it back.  I think after the second visit I was done, found the pratice I use now and have been quite pleased.

Over those 33 years have had a number of docs for reasons mentioned, moved, insurance company games, etc.  Most have been very good, only a couple bad apples that I didnt stick with very long.  

Sorry for rambling.

You are not alone, you are not the only child patient here. A lot of folks here are not, are getting their first ones later in life, but compared to before finding this site where you knew zero people, you now have at least a few.  There were a couple of teens that were new to this that showed up last year, dont know if they have come back.  There have been some parents like yours and mine who have questions, have to make the tough decision.  I am happy to see some parents have come here to ask, they had assumptions that everyone has that a pacer means you are crippled or different, instead of the fact that the pacer makes you normal, not different, able to do whatever. Glad you are here and glad that your folks made the tough decision.  If you check in from time to time you can certainly help those new kids or parents, at the same time you are already a pro at this with 4 devices (I got to keep my first three, they wont let us keep them now).  And I hope some of the other lifers will comment here as well.  No doubt Tracey_E will comment, she knows a ton of stuff, someone worth listening to and is somewhere between you and me in number of years and a similar number of devices.

Welcome to the club.

Hi!

by Tracey_E - 2020-03-15 10:28:03

Glad  you found us! Like dwelch, I was born with CCHB but not paced until I was an adult. We have a few members paced all their lives like you but they tend to be out there living their lives and not post much. 

It's just the last few years that I haven't been the youngest in the practice. As I was getting my last replacement, I tried so hard not to roll my eyes at all the nurses and staff that were marveling that I'd had a pacer long enough to need a replacement, then watch their eyes bug out when I say it's my 5th. It's human nature to make assumptions. I smile and move on. 

My current ep is an adult congenital specialist. This practice is night and day from the old one! At this one, I'm the only one not using the coloring books and toys in the waiting room lol because it's inside a large university childrens hospital. I like it, tho, because my doc sees half adults like me who are congenital, and half kids so patients paced a lifetime is his normal, not the rare exception. When I was younger I didn't care so much but once I got past 50 I started thinking more about the future. The regular cardiologist would say I'm doing great see you next year. I was more interested in someone who could tell me what to do to remain feeling great, more preventative than reactive in approach. The number one thing I've gotten from this practice is stay as active as possible. We were born with electrical issues, we don't want to compound it with plumbing problems. 

Hi

by Amyelynn - 2020-03-16 03:11:17

I was diagnosed with heart block when I was three years old. I bit the Christmas tree lights out of the socket and got electrocuted. It was then in the hospital that the doctors noticed my heart condition. I lived with it okay for years until I was 12 and passed out at a high school football game. Have had a pacemaker ever since. 
mine was originally placed on my upper left hand side of my chest. However in 2008 I  had to have my pacemaker replaced as I had grown so much from the original surgery one lead was no longer attached and the other was barely hanging on. Due to the risk of removing the leads (especially back then they didn't have proper knowledge or tools for it) they capped off the leads and put new leads and a pacer on my right side. I am four surgeries in. My only worry now is what do they do with all these old leads? There are no scientific studies that say it is ok to stay in for the long term because it is not common for young people to have pacemakers. I also am not ok with having a bunch of leads in my veins as I already feel I can tell the difference with four and the blood flow when I am exercising or doing strenuous activity. 
Other than that we are bad ass machines! 🤣😎