Worried mum

Hi there,
My son had a pcemaker implanted in Oct 2009 in Sydney, Australia. He was really sick for 2 years with syncope, low HR, high HR, weight loss, tiredness etc. They finally diagnosed him with complete heart block and a pacemaker was inserted the following day. Thank God his heart is not allowed to drop below 60 now (I can finally sleep at night!). I am still concerned though because his hr is still irregular and it gets up to 120/130 bpm for no good reason. He is also experiencing pain around the pacemaker site that shoots under his arm and through to his back. Doctors here do not seem to be able to give me any answers. All tests are normal. Does anyone have any suggestions

3 Comments

Thank you

by mdinale - 2010-04-16 08:04:33

Thanks TraceyE,
You have put my mind at ease. I was so happy to come across this site. Your support and advise is amazing.
Thank you!!!!!!!!!

Worried mum again

by mdinale - 2010-04-16 08:04:44

Does anyone have a pacemaker and play contact sport such as football? My son is 10 and is so upset because one doctor said no and another one said yes!!

welcome

by Tracey_E - 2010-04-16 11:04:01

Contact sports are generally not recommended for us. There are a few companies who make shirts with protective pockets to cover the pm. If he really wants to play and you are ok with it, I would check into those first. Can you distract him with another sport like soccer or basketball? Most sports are fine! He managed to pick one of the very few that isn't such a good idea. He just has to avoid a direct hit to the pm, the exertion of the game is not a problem.

Re: suddenly going too high. Two things you could ask about. See if a feature called rate response is turned on. Sometimes they turn it on whether we need it or not, and it can cause conflicts with our natural hr. With complete heart block, our sinus nodes work just fine and don't need the help that RR would give.

Or, sometimes when we have CHB our hearts just start to beat too fast sometimes. I've never heard a medical explanation but I figure it has to do with before we had the pm, the atria would beatbeatbeat, trying in vain to get the ventricles to catch up. Now we have a pm but the atria still works overtime sometimes. I dealt with this for years, it was annoying but didn't really feel bad so I just ignored it. Since my rate was regular (just too fast), my doctor was ok with just watching it. I did some research and tried fish oil supplements and magnesium to help, both are supposed to help arrhythmia. Last year (16 yrs after my first pm) I started getting high enough that it affected my workouts (atrial rate would jump higher than the pm could pace the ventricle) so I started taking a low dose beta blocker to keep my rate down and now I feel great again. But I'd consider that a last resort, esp in a child. If he can deal with it and they have ruled out anything irregular, I'd just keep an eye on it but not treat it. Ask his doctor before giving him any supplements.

Re: shooting pain. After this long, he should be healed but it could be sitting on a nerve. Is it annoying or debilitating? If he can deal with it, I'd ask the surgeon about redoing the pocket next time he has a replacement and try to live with it until then. Unfortunately there isn't much they can do other than wait it out until it heals better or reposition the device.

Good luck! There are a lot of us here with CCHB, from teens to 50's.

You know you're wired when...

You have an excuse for gaining an extra ounce or two.

Member Quotes

My pacemaker was installed in 1998 and I have not felt better. The mental part is the toughest.