I had a few minutes and was looking online for a support group, information on pacemakers and stumbled on this site - and it's seems perfect. One month ago this evening, I was en route with my youngest daughter (11) to Children's Nat'l Med Inst. in DC for her first pacemaker. She's done really well. We've known for several years that a PM was in her future, we were just hoping that we'd be able to get her a little older - but there wasn't a lot of info to go on (case history) for her problem - so the course was uncertain. She has a progressive type of heart block - prior to her PM, her HR would go down into the upper 20's at night, average for 24 hrs in the 40's and the biggest change was that she now was having pauses in the 4 & 5 secs. - but she had been fairly asymptomatic - and can't really tell a whole lot of difference (I sleep much better at night!) except at times she can feel it pacing her (set at 50) and it's a little irritating, just not used to it yet. It's knocked her out of winter swimming while she heals, but hopefully she'll be able to do a spring sport.

Was wondering if there were some other kids out there who'd like to chat back and forth with her - how would she catch up with them? She's been very accepting of everything - and the only time she shed a tear (that I've seen) was when I told her it was time and we needed to be on the road within 45 minutes (drs. waiting at hospital 2 hrs away for her) - but I know she must have concerns or just have a need to connect with others who can really understand what she is going thru. Will go for now, thankful for finding this wonderful site, 2010 is already starting off on a good note! Happy New Years to you all and best wishes for a healthy year!

 

 

And this is a great place to do it! She's very brave & must be disappointed to have to give up sports for awhile but she'll be better than ever soon! It doesn't matter what age we are, we all have our own fears & she can get much reassurance by hooking up with the good folks on here, young or older. Wishing her improved health & much happiness in the New Year!

 

Hi Dana! You've come to the right place. We have some other kids here, hopefully one of them will say hi soon. They don't visit regularly, but they do pop in from time to time. There is also a yahoo group called heartblockkids (or something similar to that) where she might meet some other kids to chat with.

Kids are amazingly resilient! I was born with a third degree block and other than tiring easily, was more or less symptom free until my early 20's. Young bodies can adjust to a lot. I've had a pm for 15 years now and feel great! I'm a mom of two girls your daughter's age, have my own business, volunteer a lot... I don't let a little thing like a heart condition slow me down.

Has she been back for a check yet? They sometimes start it a little high then turn it back once the body's had a chance to get used to being paced.

Even though she wasn't symptomatic, she may find that she has a lot more stamina once she heals.

If either of you have any questions, please don't be shy!

 

hey DanaH(:
well my name is hailey. im 14 years old - im a freshman in high school - i also have a PM ! i had mine implanted when i was olny 4. i live the "normal life" just as every other kid, be sure too let your daughter know just because she has a pacemaker, it shouldnt hold her back from anything let her follow her dreams & be who she wants too be. but i would love too chat with her & get too know her a bit more their are about two other kids i talk too on here. we text alot ! if your daughter ever has any questions or needs a n y t h i n g im here. ive been living with my pm for 10 years now so i know a little bit more then the avrage 14 yr old(: you was saying your daughter started too cry - well in elementary school i had a very rough time actually being "okay" with myself. i used too cry and ask my mom why this happened too me - how come i cant do the monkey bars at recess or participate in P.E! i used too feel alone.. it used too hurt alot, but my mother would tell me "babygirl god blessed you with a pacemaker because he knew you we a strong enough girl too handle it" just let your daughter know she is one of the chosen few angels! hope we can talk more(:

 

I am in my 40s now but went through my pre-teen and teens waiting for that day that i would get one. I was still active but had to give up some sports. The pacemaker made me normal, and I am so happy that for what I felt at the time was being strange and unique to find that there are so many of us that had or have heart problems as kids and that pacers are readily available. Since I had my first pacer they have learned so much about my condition and now can detect it before birth (not 12 years later as happened with me) and are willing to and CAN treat it through childhood. i did some reading last night and the stats for CAVB are a bit scary, I am lucky to be typing this. Have had pacers for half my life and look forward to having many more.

 

I have had a pacemaker implanted in me since 1973 and since that I had more than 10 implanted. I also changed from a single chamber to a dual chamber PM. I live everyday with the best outlook on life and feel thrilled because I am different. In my early years I was always compared to the Energizer Bunny ( I used it to my advantage and loved most of it).