Pacemaker recipient since birth

Hi, my name is Aletheia.  I just turned 19, but I was given my first pacemaker at 3 days old in 2004.  I also had heart failure shortly after that.  I'm also on several heart meds.  A couple of years ago one of my leads broke and I got a new three lead pacemaker.  That new pacermaker has helped my heart a lot and I've gone from moderate to severe heart failure to mild.  My life is pretty normal except for the fact that I have never been able to be in PE or in active sports.  I struggle some with being "different" and really wish I could talk to some young people like me that I could relate to.  I've never met another person my age with a pacemaker.  I am a good student and very musical - I will letter in Madrigal Singing when I graduate from HS in 2024. Thank you.


9 Comments

welcome!

by Tracey_E - 2023-12-21 21:59:45

We are glad you found us! We do have members your age, but most of them don't post often. I hope one sees this and says hi. 

I also have congenital heart block and grew up not able to do sports or PE. It's hard to be different! I'm sorry you are dealing with that also. It's great you've found music. 

Thanks for responding.

by AletheiaO - 2023-12-21 23:04:02

Were you paced when you were young?  I'm going to look for a job soon and I'm not supposed to lift anything over 20 pounds - did this ever happen with you?  How did you handle it.  Did you have a hard time coping with the pacemaker?  I've just never had a change to compare my experience with anyone who isn't very old.  I don't mean to be too nosy. 

 

AletheiaO

by Good Dog - 2023-12-22 08:33:33

Wecome AletheiaO! 

I am sorry to say that I was not real young when I received my PM. I was 38 years old which I considered young, but not quite as young as you are looking to connect with. I have had my PM for 37 years. As Tracey indicated, there are plenty of young folks that pop in here from time to time, so hopefully you can connect up. 

I just want you to assure you that by asking the questions you asked you are not being nosy. Not at all. In-fact, that is the whole purpose of this forum. We share with each other our experiences and learn from others. To do so we need to ask and answer any and all questions that anyone has (when we can). I think that most of us will tell you that life with a pacemaker, if that is the only issue you have, is pretty darn normal. As I said, I have had mine for 37 years and my life has been absolutely normal in every way. If you follow this forum you may get the impression that people with pacemakers have a lot of issues, but that is just not the case. The people with issues you read here are in a very, very tiny minority of pacemaker recipients. The vast majority of folks with pacemakers live normal lives and never vist this website. However, this is a great resource for getting questions answered and learning (which is why you are here). We learn form each other. So I hope you will hang-around and not be bashful. If you do not get a response that you want and your post moves down the page, it may be wise to post again so that your post is closer to the top of the page and more noticeable. I am confident that at some point you will meetup with someone in your age group eventually. 

I am getting an upgrade from my 2-lead pacemaker to a 3-lead CRT in a couple of months. I have heart failure too. I am hopful that this will improve or resolve it. Although I have heart failure I am not symptomatic. I can pretty much do anything I could do before I had it. However, my ejection fraction is only around 40 now and headed down. That is the result of poor lead placement and the dyssynchrony for over 35 years. The 3-lead PM will fix the dyssynchrony and I hope it will improve my EF. In any case, I have to run for now. Please hang in here for as long as it takes and know that you are welcomed here. 

I wish you the very best!

Sincerely,

Dave

Thank you for responding

by AletheiaO - 2023-12-22 16:20:45

I have had my pacemaker almost 6 years. I will be getting a new pacemaker change  this summer of  2024. I am not thrilled at all about it 

Generatpr change

by Good Dog - 2023-12-23 12:59:44

Since you said you dread going-in for your generator change I just thought I'd let you know that you are not alone. I always dread it too, but when it is over I always think; OMG, that was really quick and easy! This will be my fourth-time. I think it is just that we get sick and tired of the "need" disrupt our lives to do something we don't want to do when in fact; normal people don't have to go through this! No? Really though; it is not a big deal! 

BTW: You said that you are not suppose to lift over 20 lbs. Why not? Even after getting your new CRT?

I wish you a merry Christmas! I am assuming you celebrate it......

Sincerely,

Dave

Pacemaker from teen years

by Charli - 2023-12-23 18:04:15

Hi! I was 15 when I got my pacemaker and I'll be turning 30 next year! I used to be into music when I was at school too learning saxophone and clarinet.

I wouldn't worry too much about getting a job with a pacemaker, I've not had any issues and I've had a few different jobs. When you do get a job, mark it down as a disability so they have to consider you pacemaker in the role they give you. Honestly the biggest issue I've found over the years was which roller coasters had magnetic breaking.

Thank you for responding

by AletheiaO - 2023-12-23 23:28:27

Oh I'm so sorry I meant 50 pounds I'm also very petite and can't lift much than 20 to 25 pounds anyways. I absolutely lothe roller coasters with magnetic breaking. I was never a fan of amusement parks anyways 🤣 take me to San Diego zoo instead 

lifting

by new to pace.... - 2023-12-24 10:53:23

Thanks for correcting your lifting ability.  You should not be lifting more than 25 lbs  anyway.   I wish i can lift more than 5 lbs now with ease because of my spine fractures.

new to pace

Hi

by Tracey_E - 2023-12-27 13:55:22

My apologies for taking so long to respond, I was away for Christmas. 

I was only told not to lift over 20 pounds until I healed. Now, I do what I want. I've done crossfit where I lifted triple digits overhead and deadlifted my bodyweight. My doctors have always encouraged me to be as active as possible and have not given me restrictions. 

I got my first pacer at age 27. When I was first diagnosed (1970!) they did not give pacers to children unless it was life-threatening. Hence, all of the restrictions on activity. The day I was cleared for activity after I got my first pacer, I joined a gym, and bought a tennis racket and rollerblades. I haven't really slowed down since! 

I had a hard time when I was old enough to understand that I would one day need a pacer. I was in high school then. By the time I actually got it, I had it built up in my head as something awful and I was terrified. But also, by the time I finally got it, I felt AWFUL and had been struggling for several years. I was procrastating because I thought it was going to be so awful. Then I got the pacer and suddenly I wasn't dizzy, I wasn't tired all the time, every little thing didn't make me out of breath. So actually getting it I felt so good in comparision that it was an easy adjustment for me. 

You aren't being nosy at all! Ask my anything. You can post here or use private messaging, or I'd be happy to share my email address. The unknown is scary and it's no fun feeling alone. 

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