Long Term Prospects

Our daughter had her regular 6 monthly check-up this week and, fortunately, all is still well with her (she has complete congenital heart block and has had a pm since 10 days old, she is now 8yrs old).

We were just generally chatting to her cardiologist when she mentioned that there are reports suggesting that long term pacing can lead to the heart not functioning properly at all, even with a pacemaker.

She has been asked to talk on the subject but admits herself that there is not a great sample group to use to justify or refute the suggestion.

Our real worry is that, because her pm does pretty much all of the work in making her heart beat, our daughter will, possibly, suffer the effects of long term pacing much earlier.

Is there anyone out there who has similar symptoms to our angel? If so, have you had any problems? What age are you now?

Any replies are appreciated.

Thanks.

6 Comments

RV pacing issues

by Angie_O_Plasty - 2007-11-16 03:11:56

It is true that long-term right ventricular pacing may be problematic; I just recently read an article on that topic for school. The issue is that when you pace from the right ventricular apex (which is where the lead usually is), the two ventricles contract slightly out of sync and that is what can weaken the heart over time in some people--in the normal heart, the electrical impulse basically starts in between the ventricles thereby stimulating both at the same time. It's similar to having a left bundle branch block, where the electrical impulse takes longer to reach the left ventricle and causes dyssynchrony. The article I read suggested some possible fixes for the problem, including different lead placement in the right ventricle (closer to the bundle of His), placing the lead in the left ventricle rather than the right, or the use of the newer biventricular (cardiac resynchronization therapy) pacemakers that are currently used for people who already have heart failure. It seems this hasn't been studied enough yet to make recommendations, but I think this may change in the next few years (hopefully). Hope this helps!

Hi,

by Gellia2 - 2007-11-16 08:11:33

I also was born with complete heart block. Back then, there were no pacemakers so my parents were told to take me home to die. SURPRISE! I'm still here, although the doctor has since passed away. I got my pacemaker in 1975 at age 26 (electrical activity can last longer than you think) and have right paced continuously for over 32 years now. I have had (knock on wood) no problems. My doctor does do echos on a fairly regular basis to check the ejection factor and I watch for feet and leg swelling, but again, no problems, so far. I do hope your daughter does as well as I feel I have.
Hope this helps.
Best to you both,
Gellia

thanks

by jessie - 2007-11-16 11:11:14

thanks for your own experience gellia2 as it is firsthand and so so important. it is important to be so positive and you are. not even doctors know everything soi am glad you have a good one and have done so well. i can only think that this doctor gave this family more to worry about than necessary. i believe with this question they ask another opinion is needed and the question put to a new dr. i myself have not heard this jessie

Hello

by Christmmpace - 2007-11-16 12:11:34

My name is James and it's nice to meet you in this club. I also have a daughter and your story is touching to me.
I have no answer for your question, but, I would like to tell you how much my heart goes out to you and your family. Ever lasting life on earth and in heaven for your wonder young daughter. I pray her heart beats forever. Every day is a blessing to share with our kids. Let your hearts beat for one another. Take care and I will send to the heavens a prayer for your daughter if you don't mind.

Christmmpace

Jessie

by scotsman - 2007-11-17 05:11:55

Jessie,

To be fair, I would put my complete faith, always, in our consultant cardiologist - she has been nothing but a source of complete honesty and support for the past 8 yrs. In no way did she set out to worry us, she was merely expresssing her professional experiences and thoughts. If anything, despite mentioning the subject, she actually helped a little bit by stating that the potential sample group to prove/disprove the theory is not either big enough or suitable enough....yet!.

All your comments so far are hugely appreciated, I must admit that I joined this site years ago but, because she has been so well, I have neglected it a bit. I promise this will end!!!

Gellia - your experience fills us with faith.

Thanks to all, Scott

another thought

by slarnerd - 2008-01-06 02:01:12

I asked our pacer NP about this and she said that before about age 10, they don't see these problems developing because before that age our smaller children are generally not engaged in athletic/aerobic activity that raises and maintains a higher heartrate out of synch. So while long term pacing would have a negative effect on the function of an adult heart if not synchronized - it would not have the same impact on a younger's child's heart. I think that after that age, a dual chamber, rate responsive pacer would alleviate that concern as the ventricular rate would be paced from the natural atrial rhythm. My son is almost 18 months and b/c of a broken atrial lead, is now operating with just a ventrical lead set to motion.

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