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...

 

Hi!

I'm writing because my 5 year old son was born with HLHS (Hypoplastic Left Heart Syndrome). He has Sinus Node Dysfunction and will need pacing in the future. We are anxiously awaiting that time, but right now he is having Holter Monitor tests every 4 weeks. He is symptom free in every way (activity level, energy, etc...) but has a very slow heartrate which even dips into the 40's when he's in a deep sleep. I'm SO EXTREMELY nervous because of the fact that Tate will have to have his chest opened up for placement of the pacemaker due to his HLHS anatomy. Since he has already had 3 open heart surgeries, this will be a very tedious task trying to get through all of the scar tissue. I was wondering if anyone else in this ...

 

Any young pacer moms out there?
How was your pregnacy any issues because of your pacemaker?

Im 24 and starting to think about a family in the next few years.
Any insight would be great.

Thanks
-Jenn-

 

Has anyone experienced interference from their IPod? I have a 5 1/2 year old boy and he wants an IPod. He listens to his brother's regularly, but we make sure the IPod isn't close to the left side of his abdomen. The next time we see the Cardiologist, I may take the IPod to see if we can cause interference.

 

Hi! I am 12 yrs old and jst found this website.( Isn't that sad ?) Anyways I love to talk and answer any questions you have (my mom also). So feel free to contact me about anything !

 

MY mom like tottaly turned crazy when she found out about this web site. I think it's really Kool to interact with other special people like me!!!
I am 11 years old and got my first Pacer when i was born. This is my last year in Elementary school.
I have lots of friends who are there to help me through my life.
When you first meet me i just seem like a normal kid with a normal life but people need to know that i am special in a special way. My fave Band is Marianas Trench, they are now on their conquer canada tour. I can't wait to meet others like me.
The coolist thing in now : Tech Decks
Cassie A.k.a MTrencher07

 

Hi all,
I am the mother of a child with a pacemaker. My daughter is totally pacemaker dependent and just entered kindergarden. She had her pacemaker implanted the day she was born--she was born with complete heart block. I am concerned about rought recess play since her pacemaker is in her abdomen and her wires are external to veins at this point.

Anyone have any experience with public schools? Any suggestions for an anxious parent? I have already had a meeting with her teachers, principal, etc. and as of yet they have not been overly helpful.

All suggestions for dealing with this problem are appreciated, send email to me at pk0503@yahoo.com.
Thanks!
pk

 

I'm marisa, i'm 14, i have a congenital (born with) heart problem, I have gone through 8 surgeries and 5 pacemakers, my last surgery was october 2006. For anyone who has just recently got a heart problem and is trying to cope with their peers like i have over the gazillion school years dont stress and be self councious of others staring at you.

 

all of you afraid kids out there that is goiong to have surgery you will be just fine i am 11 yrs. old and i have a PM also i got my first PM when I was about 3yrs. old i just got a new PM in november of 2006 and looking at me now doing everything a normal kid would do!!!!!!!!!

DONT WORRY YOU WILL BE FINE
GOD BLESS!!!

 

I'm 29 and have had a pacer since I was 17. Things have gone well over the years and I've only had 1 battery change since but my doctor tells me that in the next 2 years I will probably need the surgery again. He also said I could be considered high risk because of a slight arythmia. Of course, my husband and I talked about having a baby in almost exactly 2 years too. I don't take any meds and I'm very active but I'm concerned.

For those of you who have had children with a PM - did any of you have an arythmia or were any of you considered "high risk"? Do you know how long you have to wait until after your surgery to consider giving birth? And did your ob gyn and cardiologist work together through the pregnancy for any reason?

click to read more...

 

Hello new friends,

WOW! This is all so new to me. Please offer any information that might be helpful to us. Our soon to be 5 year old son (Tate) will receive a pacemaker on Monday, Aug.6, 2007. Tate was born with Hypoplastic Left Heart Syndrome and has recently developed a slow heartbeat & irregular heart rhythms. Tate has had 3 open heart surgeries & several heart caths during the past 4 1/2 years. He has gone into total heart block on 4 different occassions. We knew he would have maintenance type stuff along the way with his complicated defect, but never imagined he would be receiving a pacemaker.

He will get the kind that goes into the abdomen. We've been told that it's an "on demand" pacemaker. This is al...

 

Hi Dan my name is Ashley Amaro I just turned 18 on june 18,2007 anyways I just read your story on pacemaker club and you said do you know anything about pacemakers will iIdo I had mine inplanted on December 19,2001 scince then I got to do everything from fishing to rock climbing to playing basketball to hannging out with my familay and friends so lets keep in tauch and if you have a questions on coucers just give me e-mail at dolphinfan4@verizon.net.

 

happy father's day to all the father's out there. our sight is made up of young old men women and there are many father's who to-day are honoured for being there. as for my own father he was great. life was different then and the expectations were different. all i can say is he took little for himself and saw that all five of us were educated and could fend for ourselves. he stayed when many would not have. he didn't have a father long himself so he had no one to identify with. so my advice is look for the positive and don't stay focused on the negative. we all have faults. we are human. so agin happy father's day jessie

 

A hard working man, never having time to spend with his son. One day would understand how important it was to walk by his side. After years of ignoring his son he one day was forced to a choice of seeing his son and understanding his presence in his life. He decides to take time out from his busy schedule to spend father and son moments together. Everyday, him and his son would walk through this open field and they would stop at a rock where his son use to love playing on. Both of them looking at the rock, would think of how much fun it would be to just go ahead and try it, but, neither would dare to step on the rock. Day after day, they would walk to this rock and not a word was said. One morning the father wake up and there, in hi...

 

I am new to the pm world, so I was curious if pregnancy has more complications with a pacemaker than a normal pregnancy? I am 28 and had a catheter ablation that went awry, which led to me having heart block, and then the pacemaker...but I really want to start a family soon...any advice out there?

 

This is my second time trying to post this, so apologies if the last one went through and I am repeating myself.

Hello Everyone,
I am looking for thoughts or advise from mums with pacemakers on when is the best time to get a pacemaker.

I have a complete congential heart block, but to date I am relatively asymptomatic. I have been doing alot of reading re congenital heart block and it has scared the living daylights out of me. On my last visit to my cardiologist we decided that mayve the time is right to get a pm.

Now that I have made the decision I would rather do it asap, and not have it hanging over me.

However, I am pregnant and due in November. Since radiation is used during the impl...

 

This is my second time trying to post this, so apologies if the last one went through and I am repeating myself.

Hello Everyone,
I am looking for thoughts or advise from mums with pacemakers on when is the best time to get a pacemaker.

I have a complete congential heart block, but to date I am relatively asymptomatic. I have been doing alot of reading re congenital heart block and it has scared the living daylights out of me. On my last visit to my cardiologist we decided that mayve the time is right to get a pm.

Now that I have made the decision I would rather do it asap, and not have it hanging over me.

However, I am pregnant and due in November. Since radiation is used during the impl...

 

I am a 46 yo father who lost his daughter to cpvton Nov. 14th 2002. She had 2 blacking out episodes prior to this and her mom did every thing to find the cause to no avail. She was swimming on her swim team and died on the third lap. They tried to revive her for 3 hours to no avail I went and got tested thru the Mayo clinic and tested positive for CPVT. Needless to say I had a Medtronic pace defib installed. Today the results came back for my sister (positive) and she is upset but I told her it will all work out. I hope you all have the best of luck going down this road.

 

My 16month old has no ventricular rhythm at all (no underlying rhythm as they say). He has had his pacemaker for 3 months and now that he is very mobile and running around and climbing all over the place I am getting more and more worried about potential dangers - not that I really feel that I know fully what the dangers are. Does anyone else out there share our circumstances? Particularly anyone with a child with no underlying rhythm? Cath

 

Hi! This website is a godsend.
Anyway, I am only 25 and need a PM. One of my biggest concerns is that I have a 1yr old and not much help. I have read that recovery can be pretty painful and there can be lifting restrictions. Is there anyone who has recovered with a baby to take care of? Will it really be 4-6 weeks before I can pick her up?

Alesia