Hi,this is my first time on this website and I'm hoping someone out there has been through a pregnancy with an abdominally placed pacemaker. I'm in the very early stages of pregnancy for the first time at 44 and I just had my last pm change in May and they were forced to locate it under my abdominals (very painful). They had to place new leads externally and the ventricular lead touches my diaphragm and sometimes causes a spasm that feels like a shock. I'm worried that during pregnancy this will get worse. Anyone out there been through a pregnancy with this situation?????

 

Hi, I just found this website. My son is 15 years old and has had a DDDpacer since he was 2. He has a 2:1 AV block. He has had 3 surgeries since 1994 for replacements and leads. He played baseball, ice hockey, soccer and swimming til he was 12. Now he concentrates on soccer and swimming. He played in a National Soccer Tournament this winter and plays for two teams at all times and swims in the summer. He will also be a lifeguard this year. I have read many comments here and went through many of your similar fears and concerns. Some coaches feared my son's potential health needs so I was always at every practice and game til he was 12!
I finally found a good chest protector online that I think everyone needs to know about. M...

 

Hi
I am a 33 year old mother of two beautiful girls aged 2 years old and 6 months old and had my first pacemaker implanted in November 2007 - 3 months after the birth of my second daughter. I was diagnosed with complete heart block at 17 weeks into my second pregnancy.

I have breasfed my baby from birth, and despite assurances from my Cardiologist, I am still so nervous that the pacemaker will somehow damage my daughter since she is in such frequent contact with my chest and obviously with breastmilk produced by my body which now has a pacemaker in it! The pacemaker is just below my left collarbone. I know in theory, nothing should 'leak' from the pacemaker battery, and surely if it was to leak I'd have some kind of infec...

 

Hey guys, just wondering if anyone knows where I can get one of those jelly sport bracelets. In my opinion, they are more practical than those flashy metal ones. They look cooler too!

 

Hey! I was wondering if anyone knew of any good PM camps. Not that I need to go to a special camp, I just think it would be cool to meet other kids like me. I googled Pacemaker camps and got a website called sickKids. Why sick kids? We're not sick and I don't think that that was a very appropriate name. Maybe it was a site for other more serious conditions like cancer. I don't know. Ah well. :)

 

Do any of you have ID bracelets for your kids? If so, at what age did you get it for them? My son is almost 17 months. And I was thinking, maybe I should get one so that he gets used to wearing it for when he gets older. And then my next question would be, what information did you put on it. My son is on meds, but they can change or get discontinued, so I was thinking of putting the Walgreens phone number that we always use for all of his meds? And then, his pacer is set for VVI 80, but that could change too, so maybe his EP name and number?

Any advice?

Thanks,

Cindy

 

Hey I am 13 yrs old and I think it would be so cool to have a boyfriend with a pacer ! Probobly not the best site for this I know but I am soooo alone in this !I mean I have my parents and pacer friends but I still find myself dreaming about a boyfriend who gets it and doesn't care what I look like and what I can or can't do he likes me for me !

 

Hi! My son had open heart surgery last X-mas 2006 for a congential heart disease (hole in the septal tissue between the atriums). He had just turned 2yrs. During surgery a stitch disrupted his natural heart beat. Three weeks later he had a permanent pacemaker put in. He thinks his pacemaker is special and he asks everyone "Wanna see my 'maker?" He is a very active, healthy 3yr old now and I'm looking for some sort of gaurd for his pacemaker (in his tummy). What I have found are way too big for him. Does anyone have any ideas?

 

I was wondering if anyone has their childs pacer checked by telephone. I know for sure that they do that with adults, but I was wondering about kids. If so, when did they start doing that? And is it because he/she is in complete heart block and they are doing that for extra checks between appointments? We are currently at every 6mo with the EP. We will see her in April, so I'll ask about it then also. But, I was just wondering... And I was wondering how many parents of children with pacers there are out their that are on this board?

Ok, thanks!

Cindy

 

Hi pacers!
I need your inout. I am working on a product, along with an athletic trainer, that I made for my daughter who is now eight and has been pacing since she was three. It is a protective device/gear for when she plays sports. It is patent pending and we are in the marketing/devolpment phase. I have brought the product to both of her cardiologists(Columbia Pres. in NYC) and they both encouraged this product. I was wondering if you could give me feed back if you would use/need this type of product. You can email me directly at sspinnler@optonline.net. I appreciate your help!
Keep on Pacing!

 

Hi:
My son has had a pacemaker since he was 9 months old. He had a few complications but seems to be doing well. He is now almost 2 years old and has had phone checks every month and all results were OK. He had compete heart block...that's why they put it in....anyway....he seems to be having some trouble and i am not sure if it's from his heart or something else. he has an appt next week to check him but what's happening is that when he runs around playing....alot of running.... he gets out of breath and starts coughing....it takes him a few minutes to catch his breath.....he also has that oral cyanosis (bluish around the lips) but he has had that before and they said it can be normal for children his age.....has anyone had trouble...

 

i thought that i would say a few words to you guys. parents and kids need to spend more time together because some kids that i know say that they don't spend enough time together. i want parents to think that we are special and we need special care of us. my parents don't think about how gifted i am but i make them realize that i'm worth something. i love them but they act like jerks sometimes. but they love me and i love them and that is all that matters.

 

To admin,
I am a tad bit concerned about one of the pacer person [username removed by admin]. NO OFFENSE OR ANYTHING. I am 14 iIve had 8 surgeries not only do 2 pacers but lead replacements to (due to the fact that kids grow, therfore, their leads cannot work properly). Now [username removed by admin] has said she has gone through 1 surgery. And has had a pacer since she was less than 24hrs. old, the math is adding up to me. I am not the only kid concerned or thing she is a tad bi weird, some of the other kids also feel the math doesnt add up. Others have also had up to 8 and at least 3. Just a little concerned.
Concerned pacer kids/teens

 

Hello to all my fellow pacemaker recipients! If you or somebody you know is going to get a pacemaker, it isn't so bad. I am 13 and have had my pacemaker since I was less than 24 hours old. The only thing that I don't like is 1 that I can't play contact sports (I really want to fence!) and 2 the echos. I absolutly can not stand them! If you are concerned about iPod interference, I can tell you, I have a huge video iPod and it has not bothered me so far.

 

PM and Pregnancy

I finally got the go ahead to have a baby! I am super excited yet scared. Evidentially, Coreg is a drug that can be taken during a pregnancy so that is a huge relief!

I can guarantee that I will have the only baby in town run on my pacer! Wild huh?

Has anyone out there gone through a pregnancy with a PM?

 

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 !