St. Jude Medical Pacemakers & ICDs

Read Messages




Messages in Parents & Kids Forum



Posted by LenP on 2015-07-30 18:38. 3 comments. 117 reads
 
Hiya, I'm parent to a 5 year-old who was 'pacemakered' last week- side effect of his 2nd OHS was total heart block, hence the need for the pacemaker. Still in shock as, although I was aware of all the other risks of his surgery, needing a pacemaker, or rather- being totally pacemaker dependent- wasn't even mentioned as a possibility until the morning of the surgery when the 'small print' mentioned a 5% chance of needing a pacemaker'.
It's all quite a lot to get my head around, mainly because he doesn't have an underlying heart rate currently, and they don't have great hopes of this recovering, so I'm just terrified of something going wrong with the device, or him loosening his wire off before it's had a chance to 'bed in' properly. Pr...


Posted by BrendaK on 2015-07-12 22:44. 3 comments. 181 reads
 
Hi there,

My daughter had stomach pain for many months before being diagnosed with 3rd degree AV block and pacemaker implant 2 years ago. She rcvd a single lead pacemaker due to her small artery size but her stomach pain improved, it has never gone away. She had tons of stomach testing. scope and colonoscopy that came back normal. She has grown quite a bit and now needs her pacemaker replaced and new leads put in for dual chamber. I was just curious if anyone has experienced stomach pain and if it could be related to her heart block? Dr's say her heart will work more efficiently once she receives the dual chamber.

Posted by KeirasMum on 2015-07-12 21:26. 3 comments. 143 reads
 
Hi there,
My 9 year old daughter Keira, has just had her first pacemaker anniversary and we would love to make contact with other wired kids her age.

I, her mum BECS, would love to make contact with other mums of wired kids. We are still relatively new to the pacemaker lifestyle and look forward to hearing from others.

Thanks
Becs

Posted by abbeyrd99 on 2015-06-22 16:09. 4 comments. 285 reads
 
I have to have my pacemaker replaced in the next few weeks. This is the first time to have the procedure done. I asked several questions that they were stumped by and are supposed to be getting back wtih me so while I'm anxiously waiting I thought I'd see if anyone else had gone through this.
I am still exclusively breastfeeding my 8-month-old son and want to continue to do so at least until he is 1. I also have a very active almost 4-year-old son.
Do you know if the surgery will greatly impact my ability to nurse? (I don't necessarily mean the medication I'll receive for the surgery, more my ability to move around and the discomfort in the area.) I remember when the device was first placed (before I had both my kids) I wasn't a...


Posted by MaciesMomma on 2015-05-09 13:31. 2 comments. 227 reads
 
We are home from the hospital and my daughter is doing great from her surgery. (Leads and battery replacement). In the hospital she received the book Zip Line. Its an awesome book for your kiddos that have a pm and for other children to understand why they have a scar and how it got their. Amazing book!!

Posted by MaciesMomma on 2015-04-29 22:47. 2 comments. 264 reads
 
Hey y'all!! My daughter is almost 7 and has a pm she is having surgery on Tues to replace leads and pm but besides that she is feeling like she is the only kid her age with a pace maker. I was wondering if anyone out their with a child around my daughters age would like to be a penpal with her and they can share their pm stories and calm each other about surgeries..i feel like it would really help her to feel like she is normal and that its just fine to have a pacemaker. If anyone is interested let me know she would be so excited! Brittany

Posted by gif on 2015-04-05 12:54. 3 comments. 504 reads
 
I have a pacemaker for bradycardia, and 28 weeks pregnant. When I used to faint (prior to the pacemaker), it was sometimes triggered by (minor) pain. Otherwise the heart would just slow down at night/stop for up to 10 sec.

Prior to getting pregnant I saw a cardiologist who said "go ahead get pregnant no problem", but I needed to see a higher risk ob gyn. Now nearing the end, I was sent back to the cardiologist to discuss delivery, and the cardiologist sounded pretty set on doing a scheduled c-section (which surprised me). I dont really mind either way, in a perfect world I would prefer natural, but if there is any unnecessary risk I will of course not. I had gotten into the mindset of assuming c-section was a sure thing by the ...


Posted by Itsjustme on 2015-04-01 01:22. 10 comments. 492 reads
 
My MIL has an ICD for 2-3 yrs after a sudden cardiac arrest. She has suffered a shock at one time. She never seemed to have a driving restriction. My husband is very anxious about his mother driving with our children in the car in fear of her defibrillator shocking her and causing an accident. I'm not sure how I feel about this. I hate to put a restriction like this on grandma :( that would be quite a sting! She says she is okay to drive. But, gosh, if anything ever happened to my babies that I could have prevented I could never forgive myself! So of course I see my hubbies side too!

Can anyone offer me words of advice/wisdom/experience? What does happen if your defibrillator delivers a shock while you're behind the wheel?...


Posted by ryansmom on 2015-02-16 12:21. 8 comments. 496 reads
 
We are waiting to hear from Duke Childrens Hospital in NC because my son Ryan has to get a battery change in his pacemaker/defibulator the lead that controls his defibulator is losing power. Ryan is 17 now and just wants to go get this done I on the other hand dread the whole thing wish I could take his place. Prayers for my boy would be nice

Posted by 1942301944 on 2015-02-12 15:31. 2 comments. 423 reads
 
so my mom was supposed to be wearing a heart monitor vest and it helps keep her heart from get to beating to fast till her surgery date the 19th since she didnt will this cause any complications in her surgery

Posted by 1942301944 on 2015-01-27 18:25. 5 comments. 484 reads
 
So im not the one getting a pacemaker its my mom she is 34 and a heavy drinker is there anything i should be worried about? please help!

Posted by Kaity on 2015-01-15 05:23. 4 comments. 907 reads
 
So it's been 11yrs since my last traumatizing pregnancy, I say traumatizing cause my daughters pregnancy is what unveiled my bradycardia. I became very syptomatic during my pregnancy, fainting, palpitations, numbnessand heaviness in extremities, shortness of breath, dizziness, nausea, the works, and the whole pregnancy i was being told that i was having panic attacks, till i finally had my baby & matters got worse there after. It was only then that it occured to my then OBGYN to send me to a Neuro/cardiologist, to come find out I have bradycardia w/2nd degree heartblock. I had my pacer surgery in 2003, i struggled many yrs with it, had no quality of life for 5 yrs as i still struggled with feelings of syncopy, tachycardia... when my probl...


Posted by misscannon on 2015-01-12 16:40. 12 comments. 467 reads
 
Hello everyone I am new to this... jus hoping for some positive feed back... We'll I'm 23 weeks found out a week ago that my daughter has a 2 to 1 heart block due to my autoimmune disease I have... now I am considered high risk... when they first caught it her heart rate was at 80... 2 weeks after that they admitted me in the hospital for 2 days started me on steroids... and also this other IV medication that is suppose to help her... I have to get get fetal echos once a week now and also see the high risk doctor as well... a little frustrating but I will do what ever I can own my end to help her get here safely... any who I went to the fetal echo dr today... and her heart rate dropped again and her heart was a lil bit larger than it shoul...


Posted by lisabfit on 2014-12-31 02:52. 10 comments. 628 reads
 
I'm wondering what type of PM Dr's have implanted in young children & young adults with complete heart block-but no heart failure & normal ejection fractions...dual chamber (2 leads) or bi-ventricular with 3 leads...and if it's a 2 lead PM -has there been any evidence of cardiomyopathy after long term pacing on one side of the heart? Thank you in advance for your time...

Posted by wolffash on 2014-12-02 15:20. 3 comments. 588 reads
 
Hello All:

After a routine checkup at a new pediatrician, it was discovered that my four year old has a heart murmur. She's also small for her size and so she was referred to a pediatric cardiologist. The PC discovered an AV block. I do not know the degree yet-he did ultrasounds, ekg, and she wore a heart monitor for 24 hours.

We meet with him again in about week-we met with a genetecist to see if there were any underlying conditions that might conflict with the pacemaker-and this next appt is to discuss the plan moving forward.

I'm very anxious, worried, concerned. I'm afraid she will die suddenly (the doctor assured us this wouldn't happen at her age, but STILL), or not live a full life, etc.



Posted by cllangla on 2014-11-14 08:35. 7 comments. 678 reads
 
I am new to pacing, my 8 week old grandson has had a pacemaker since day 9. I am looking for something he can wear (under his clothes) that will protect him from wireless transmissions. I have found protective compression clothing more geared towards older kids and sports. His pacemaker is in his belly and it will be until he is closer to 10-12 years old.

Is there such a thing that would give him protection from wireless phones, ipads, computers, etc.

Cathy

Posted by talia on 2014-11-08 23:26. 10 comments. 810 reads
 
I am a mother of a child that will be having a pacemaker put in very soon. She is a sporty, fit, athletic gymnast. She is looking at working as a gymnastics coach while she studies to be a primary school teacher. She is only 13 but has already set wheels in motion for her future. She currently helps out at her gym as an aid and hopes to start her coaches course in Jan when she turns 14. We hear lots of different stories and my daughter is all about trying anything. She loves scary rides, she not scared of heights and loves playing team sports. She is also very good at athletics and she loves the out doors.
Could anyone tell me if this will be possible after she has her pacemaker and sport wise what she can and can't do?


Posted by ryansmom on 2014-10-31 14:36. 3 comments. 561 reads
 
Haven't been on this sight for awhile, but decided to drop back in. A couple yr. ago my then 15yr old son Ryan had to have emergency surgery because of a defected Boston Scientific pacemaker, that was a horrible scare, of course Ryan came through it better then mom. Today he had his battery checked and it's saying a year or less, so here we go again! Sure wish this got easier but it doesn't I'm already stressing . Ryan just turned 17 on 10-10-14 but to me he's my baby. He had to have 5 open heart surgeries by the time he was 2, and received his PM at 15mn. think I'd be use to this by now, they told us this PM would only last 2-3 years due to the leads have slipped and need to be re-positioned which they will do this upcoming change, cou...


Posted by Jacqueline1985 on 2014-09-07 17:47. 2 comments. 724 reads
 
Hi I was wondering if anyone could help? My mum had 2 stents fitted 4years ago and was fine until April this year when for 3 days she was going into cardiac arrest. She had an implantable defibrillator fitted which thank god hasn't had to do anything yet it was fitted below the collar bone but seems to have slipped down to her breast. Is this normal? Has this happened to anyone else? The wires still seem to be in place We are still learning any help would be much appreciated.

Posted by marjolein on 2014-09-05 09:44. 4 comments. 493 reads
 
Hello everyone

My name is Marjolein and I live in the Netherlands with my husband and my 2 girls. My youngest one is 5 months old and was born with a congenital heart block. When she was 1 week old, she gets a pacemaker.
She is doing better now.
I can't find much parents of children with pacemakers in Holland so i'm glad to find this website.

I would like to have contact with other parents who have a little child with a pacemaker. So I can ask their experience and so I don't feel like i'm the only mama in the world with a child with a pacemaker.

Thanks!



Member Login
email:

password:



Who's Online?
We have 546 visitors online.

Members online:
  candi
  Lauram!
  bluebowtye
  wired retiree
  donsabi
  LiquidMetal
  oldearthworm
  mfairless2122

Polls
What type of device do you have?

Single lead pacer
Dual lead pacer
CRT
CRT-D
ICD

You're Wired When...
Your ICD has a better memory than you.

Member Quotes
Stay positive and remember that your device is your new best friend.

Seatbelt Comfort for Pacemaker Patients



Site content and design © 2000-2015 Pacemaker Club Inc.
All rights reserved.