My son is 18 and getting a pacemaker fitted

Hi all this is my first post - my son is having a pacemaker fitted on 10 April 2013 (next week)- he is just turned 18 - we are from N Ireland - he has no symptoms, never blacked out, never dizzy but he has a heart rate of 28/30 beats per min. He was told he has total congenital heart block - some thing he was born with. I was just wondering if he should go ahead with having it fitted as he is always healthy and his low heart rate does not affect his lifestyle in any way, he is a 6ft 2in healthy teenager - I am worried about the surgery - any advice welcome.

8 Comments

I would do it

by Tracey_E - 2013-04-02 06:04:35

I was in your son's shoes, also born with CCHB but got by through my teens without the pacer. My heart rate was a little faster than his, it stayed in the low 40's until I was 25. I procrastinated getting it as long as possible. One day my hr dropped enough that I almost died and ended up in emergency surgery and the pacer was no longer optional. This is not the easy way to do it!! I found that the surgery was easier than expected and I felt a lot better than I expected. Turns out I didn't feel quite as well as I thought I did, didn't realize how bad it had gotten until I had a normal heart beat and felt good again.

Even if he feels good, the combination of the heart always being out of sync and having such a low hr is hard on the body and it does damage to our organs. When we're kids, we can get away with it. As we approach adulthood, it's harder and harder on our body. If I had it to do over again, I would have done it when I was in college rather than wait. If my child was diagnosed with the same thing, I would schedule the surgery as you have and feel confident it's the right thing to do.

18 yr old son getting Pacemaker fitted

by blmom - 2013-04-02 06:04:53

thanks so much for your advice - this is the dilemma i keep worrying about - if he doesn't get it he may continue to be just fine the way he is BUT on the other hand he could end up the same as you and crash! thank god you are alive and healthy - the cardiologist did say she wanted to get the PM in now when he is young fit and healthy - and a non smoker - non drinker - he is heading to University in September and I would worry about him being away from home. I guess prevention is the key here. the op is being done under local anesthetic so was also wondering will he have to stay in hospital overnight??

overnight

by Tracey_E - 2013-04-02 10:04:52

They usually keep us one night here in the US. They like to check the leads the next morning to make sure everything is in place before discharging us.

CHB is about the easiest thing to fix with a pm. The heart is otherwise healthy and the sinus node (nature's pacemaker) works normally, all the pm does is complete the broken circuit. Easy!

How does he feel about it? If either of you have questions about the surgery or recovery, don't be shy.

See if he can still get a good outcome

by Terry - 2013-04-02 11:04:46

Google PacemakerPatientAdvocacy and see the latest option for electrode placement in the heart.
All the best,
Terry

I am in Ireland too...

by Jackiek - 2013-04-03 08:04:58



Hi

My little boy had a pacemaker fitted last November - He's 6!! meditron, so far we are going good, he will say it feels funny sometimes, My 82 year old dad has just had the same one fitted and can verbalise for me that the feeling funny is not a painful feeling but more like an uncomfortable feeling sometimes that he is aware of it, but overall he feels fine with it!
Josh has continued to go to school and do all normal activities - just no contact sports Rugby etc...
I am sure a cardiologist wouldn't be doing this lightly if she feels there is a real danger of him crashed they obviously feel there is a need for it! but I fully understand as a parent - you cant help but wonder if this is really necessary when you are looking at a healthy able bodied person infront of you...
The op itself is only a day surgery and they are awake for it - sometimes they keep them in overnight to do the pacemaker test and check they have the settings etc right.... Just to mention we were warned about mobile phones, magnets, shop security systems but touch wood so far we haven't had any problems with any of these Jackie

Thanks for the support...

by blmom - 2013-04-05 07:04:27

Hi all thanks for all your support and answers to my queries. Matthew goes to hospital on Wednesday 10 April - I will keep you posted on his progress - as so many of you have all said before its is a bit of a shock to find that fit and healthy kids and adults need pacemakers - especially when they are not ill or have no symptoms... thanks again everyone - the support on this site is amazing. bye for now.

PM fitted 10 April

by blmom - 2013-04-13 08:04:47

Hi All

Matthew has had his PM fitted at the RVH, Belfast, N Ireland on 10 April - all seems good at the minute, he has had a MRI compatible PM fitted. He said he is not in pain but more feeling tight on his shoulder muscles on the side the PM was fitted.... he seems to be hunching fwd instead of upright - is this normal or is he just being protective of this incision and PM? apart from that all is good - he looks a much healthier color (before he was very pale with black circles under his eyes). Phew we are just so relived it is all over!

PM fitted 10 April

by Marc51 - 2013-04-14 10:04:38

I had me PC installed April 3rd. I'm 62 and had a low heart rate and have second degree av nodal type 1. I too had shoulder pain and the hunched over feelings. Steri-strips still on but coming off. I would stretch back aa few times a day and that helped that feeling. IT gets better. Can start to lift again which is helpful since we are in the middle of a move to another home.

You know you're wired when...

Like the Energizer Bunny, you keep going.

Member Quotes

I am just now 40 but have had these blackouts all my life. I am thrilled with the pacer and would do it all over again.