How often do leads break?

Hi! I am new to this site. My daughter received her first pacemaker when she was 4 months Old. She is now 2 and we were told today that she has no resting heart rate when they challenge her heart. My question is since she relys on her pacemaker 100% of the time what are the chances she will break a lead? Her doctor was very matter of fact today and told us it will kill her if a lead breaks. I feel like we already shelter her as it is but now I am even more stressed over her daily activity.

7 Comments

leads

by Tracey_E - 2012-09-12 01:09:58

Sounds like your doc could use some lessons in bedside manner. It's one thing to be matter of fact and informative, it's another to worry you needlessly. As PacerRep said, they don't die suddenly. If one goes, you'll have plenty of time to take care of it safely. That's why we have regular checks, to keep an eye on things like the life of the leads. Usually it's ok to wait until the battery goes and replace everything at once. It's an inconvenience, not an emergency.

I had a lead go bad after 10 years, but I kept it for another 5 after that. It worked, it just drained the battery faster, sort of like running the AC with the window open. The house still cools but your power bill goes up. I'm also fully dependent, have a very low underlying rate, and the lead that went bad was the one I use for every beat I take. My doc was never in any hurry to replace it as long as it stayed stable.

As someone who grew up with heart problems, I have so much respect for my parents. They kept an eye on me, of course, but never held on too tightly, or when they did they were subtle about it. Now that I have kids of my own I really don't know how they did it! IMO, the very worst thing you can do is be overprotective which will make her feel like the odd kid out. She'll probably get at least some of that at school, try not to give her more of it at home. I wasn't able to keep up with the other kids (they didn't give kids pm's in the 70's so I was untreated until I was an adult), I was teased, there were times I wanted to jump in and play but the teachers were afraid and held me back. No kid likes to be different from the other kids. I won't even mention the times I had to go to school with a Holter, but they sucked.

My parents kept me busy with the things I could do and never focused on the things I couldn't do. They helped me understand that different is not a bad thing, God chose to make me different for a reason. They had me doing volunteer work so I was always aware there were kids a lot worse off than me. That support and positive attitude meant I grew up happy and secure with good memories far outnumbering the bad.

Please don't let the dr make you feel like you need to wrap her in cotton. It's ok (and normal!) to want to, but keep reminding yourself she has a problem but she also has state of the art, highly dependable technology that fixes her problem. Celebrate that, so many kids aren't as fortunate as we are. I'm 45 now, have two teens, own a business, do boot camp daily, hike or ski most vacations. I am healthy and active, I look just like all the other moms in the carpool, all the other folks sweating it out at the gym. Your daughter has a bright future, too.

Oh! And that resting rate thing can change. Mine has been anywhere from 10 to 70 over the years when they turn off the pm but it averages in the 20's.

a mother's love

by Hope - 2012-09-12 02:09:03

Hi! Your daughter is so fortunate she has you as her Mother. You have a loving heart and a calm head on your shoulder, eager to know how to help your daughter instead of wasted panic or denial. Yep, those precious two's can be plenty active, so your concern is valid, but try not to let it consume the joy of observing your daughter explore life. I hope you have strong family support. We are here anytime, also. Hopeful Heart

A Mother's Quest for Knowledge

by Grace18 - 2012-09-12 04:09:59

Thank you to those of you that offered your knowledge and experience to my question. Not knowing ANYONE that has ever had a pacemaker at such a young age I had hoped to find a site that would offer non biased, respectful thoughts to questions posed. Never did I think I would be judged or made to feel like a "self serving emotional" parent...and yes, you are a jerk! Shame on you! Don't talk statistics to me...my daughter is 1 of 28 people in the world living with her syndrome ....how about those odds!?! We do let her live a full and productive life! I merely asked the question in hopes of getting "real" answers and experiences rather than the open ended answers we receive from her doctors. This site is not for me.

Why do you ask...

by donr - 2012-09-12 08:09:14

...about the chances of breaking a lead?

Why did you not also ask about the chances of her PM failing?

Don

A mothers OCD

by ILoominatedEKG - 2012-09-12 12:09:16

Let's not confuse love with self serving emotionalism. She has more of a chance of getting killed in the car on the way to the doctors office or drowning in the bathtub. Maybe you should just wrap her in 120 pounds of bubbke wrap and roll her to the doctor's office. Heck, why not just strap her to a bed and only let her up to hug you?

Catastrophies happen and no one can stop them all. Believe me, your doctor is cognizant of the risks and will advise you accordingly. If anything, the doctors are a little too cautiuous due to all of the scum sucking lawyers out there. Perhaps you should talk to a professional about your inordinate fear rather than screw up your daughters life with it.

Yeah, I know guys. I can be a real jerk sometimes........

8-10 years

by PacerRep - 2012-09-12 12:09:38

Typically Epicardial leads (what your daughter has) last around 8-10 years. I've seen cases where they last longer, but epicardials you can get about a decade out of them. Usually around the age of 8-10 they will implant your daughter with intravenous leads as her body begins to grow and the epicardial leads will just be left in place and deactivated.

Intravenous leads can last anywhere from a year to 30 years. It all just depends on proper placement and a little bit of luck.

Just make sure your taking her to her regular pacer checks. When a lead begins to fail it doesn't happen overnight (except for a few defibrillator leads that are on recall) It takes time for it to fail and there are measurements we look at that warn us far before it happens.

LEADS

by pete - 2012-09-19 05:09:19

Pacemakers very rarely fail. So no worries there. The problem area is the leads. They do have a life of around 25 to 35 years if you are lucky. They dont suddenly fail but give indications of degradation giving plenty of time to find a resoultion to any problem. Dont worry. I have no resting heart rate as well ( also called a rescue rhythym or residual pacing) . But I am doing well. I am due to have my pacemaker replaced in just over 2 years. Peter

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