St. Jude Medical Pacemakers & ICDs

Read Messages




Messages in Parents & Kids Forum



Posted by Jobo81 on 2012-10-25 19:50. 5 comments. 805 reads
 
Hi,

I last posted just after my baby received his pacemaker at 5 days old. The help and support I received was invaluable and helped me through a very tough time. My little boy is 7 months old now and is amazing! He's doing really well, so well in fact that it does occasionally slip my mind about his PM. He's got a 6 month check up next month and as odd as it may sound I'm looking forward to it. It will be nice to see the cardiologist & nurses who looked after me so while I was pregnant only this time I'll have my little boy with me to show off to everyone and hopefully I won't be crying all the time!
The reason I'm posting is because I have a 4 year old son too. He's an amazing big brother and adores and dotes on his baby...


Posted by gaugesmom on 2012-10-17 00:36. 8 comments. 648 reads
 
My 5 year old gets his first pacemaker this month. Just found out today, but we have been talking about it for a month
I'm really scared!!!!! Any advice??? Please.

Posted by Ouchthatssore76 on 2012-09-23 18:00. 5 comments. 744 reads
 
well tomorrow three of my children have ECG to check for LONG WAVE Q T SYNDROME and im terrified for them :( i know that if they are positive they can be monitored ect but doesnt help my mind accept the situation :(
Has anyone else passed on a hereditary heart condition to their children and how did you cope with the guilt?
Abi

Posted by GeneWinkler on 2012-09-22 02:57. 3 comments. 498 reads
 
http://readingeagle.com/article.aspx?id=246961
Just wanna say that im still here to tell the story of my life and the day that change it.

Posted by sescutia on 2012-09-17 11:18. 7 comments. 811 reads
 
Hello,

Currently I'm 26 weeks pregnant. I had a PM put in for severe bradycardia about 6 years ago. Since I've been pregnant my cardiologist has increased my PM to min 80BPM but I still have lots of cases of difficulty breathing, lightheadedness and even loss of vision. I'm worried as the baby gets bigger this will get worse. Or even worse, more harmful for her.

I've given up exercise and even taking the stairs, but the episodes still happen on a daily basis. So far my cardiologist feels this is the pain for the gain. Does anyone else have similar symptoms or know if there is something different i can do to help?

Posted by heartoflove on 2012-09-15 21:34. 3 comments. 735 reads
 
What is the best birth control to use with a pacemaker? I am changing form the pill to the patch.

Posted by Godincontrol on 2012-09-01 23:25. 1 comments. 453 reads
 
I have been struggling on how to talk to my children about my heart issues. They know mommys heart is weak ,and I need a new heart, but I dont think they fully understand. Does anyone know where I can find reading material for their age??? They are 9 and 6. Also, how do I possibly prepare them for the posibility I may not make it thru the sugery or my body will rejest the transplant?? How do I prepare them for my possible death??

Posted by ZoieS on 2012-08-18 20:57. 0 comments. 525 reads
 
Please visit our website www.paceguard.com for your protection during sports or other physical activities for implant devices.
Thank you.

Posted by Capitals#1 on 2012-08-17 19:32. 7 comments. 704 reads
 
I was 13 months old when I was diagnosed with third degree heart block. I am 11 now and have had three pacemakers. So far I have only met one kid with a pacemacker and would like to meet more, even if just on the computer.

Posted by MelissaB on 2012-08-16 22:25. 11 comments. 1453 reads
 
Hi, I'm semi new to this website. I discovered it a little while back but I haven't gone on it much. I'm 16 years old and I have had a pacemaker since around 6 hours after my birth because of congential heart block and basically I didn't have a natural pacer. I've never had life without it, but I just feel so alone sometimes because I've never talk to another teen who has had a pacemaker too. I just want someone to message or email.

Posted by Smellienellie03 on 2012-08-11 01:09. 11 comments. 1538 reads
 
My daughter is 3 years old. She is in Complete Heart Block, has a pacemaker, and is paced 100% of the time. The atrial lead is fractured and needs to be repaired, although the CV surgeon and the heart doctor both say lets wait out the surgery bc she is 100% reliant on the ventricular lead, and doesn't put her in any 'immediate' danger.

The public schools here in the area do not have a school RN that is on campus all day. I really need, and her doctor really wants her to be in a private school that has an RN (Registered Nurse) on site from the door open to the door close. I can't afford to pay for the private school, can't afford to stay home, need to work badly, but do not feel it is best to work with her having all of this goi...


Posted by KelsieM on 2012-07-26 05:25. 13 comments. 916 reads
 
Hi, I’ve had a pacemaker since May of 2000 and I’ve had one battery change. I’m coming up on needing another battery change within the next year. What happens if I am pregnant and need a battery change?

Posted by Peas Lettuce Turnip the Beets on 2012-07-25 19:19. 3 comments. 491 reads
 
Hey parents and kids!

Want to be in an art exhibition?

On a postcard, write down a memory you have about living with a medical implant and mail it to me.
I will choose an artist to illustrate your memory and both will be shown in an art exhibition in British Columbia, Canada.

OR (even better!) make your own drawing about living with a medical implant and mail that to me!

In return, you will receive a printed exhibition catalogue which includes all of the works from the show.

If you are interested in participating, please send your postcard or drawings by September 2012. Please include your mailing address if you would like to receive a catalogue in return!

Thanks for y...


Posted by MomofCHDhero on 2012-07-18 03:33. 7 comments. 528 reads
 
Hi Jobo81!
My son's dr.'s told me not to worry about cell phones. My 4 yr old loves to get on my iPhone and he hasn't had any issues because of it. I wouldnt worry :) Hope that helps, :))

Posted by MomofCHDhero on 2012-07-18 03:29. 2 comments. 542 reads
 
Hi! I am so glad to see other moms like me out here! I have had experience with a small child having a pacemaker for 2 years now so please ask me any questions you have! I also have a support group of Facebook that I would love to invite you to! My son was born with VSD, pulmonary and aortic stenosis which was all repaired in 2010. However his heart beat never cam back after surgery and so 5 days later he had a permanent pacemaker implanted. You would never know it of you see my active, break dancing lil man. Please write back soon :)

Posted by Jobo81 on 2012-07-15 18:45. 4 comments. 707 reads
 
Hi,
I'm fairly new to this site and can't tell you how pleased I am that I found it!
My baby has a pacemaker. When it was fitted we weren't warned not to use mobile phones around him but I've read on the Internet that they should be kept about 6 inches minimum away from his tummy (where is PM is). I don't use my phone close to him but I worry if it's in my pocket when holding him or if it's generally near him.
Firstly what is the situation with mobile phones and PM's and secondly is there anything else we need to be careful of using / having near him?
Thanks in advance.

Posted by maxthehandyman on 2012-07-14 09:30. 3 comments. 2863 reads
 
Hello:
I am not a pacemaker wearer. My son is. He was born with a congential heart defect which was corrected by surgery. A year ago he was given a pacemaker to correct a chronically low and irregular heartbeat. When he was discharged he received a flyer from the manufacturer warning him about the danger of arc welding. He is currently enrolled in a diploma program for welding/metal fabrication. It is his passion. Not welding is not an acceptible solution. It has set me out on a mission to find a way to protect him (and maybe you too)
I am not a scientist but I know that sensitive electronic devices can be protected from EMI by a device known as a Faraday Cage. I believe that a garment impregnated with metal fibers and properly g...


Posted by Jobo81 on 2012-07-08 20:16. 11 comments. 944 reads
 
Hi,

I'm new to this site and was hoping to find support from people in a similar situation to myself.
When I was 19 weeks pregnant I was told I had anti ro antibodies and my baby was diagnosed with complete heart block.
For the rest of my pregnancy I did nothing but worry, I was put On medication which increased his heartbeat from 50 up to 70. I had check ups every week and fortunately got to 39 weeks.
He was born by emergency c section a week early. Over the next few days His heartbeat was unsteady dropping to 48 at times and he got tired very quickly drinking his bottle. It was decided he would need a pacemaker and was transferred to a children's hospital over an hour away.
He had his pacemaker at 5 days...


Posted by marcieschell on 2012-07-05 23:49. 5 comments. 558 reads
 
Hi folks. I'm new to this site. I came across it while looking for something to help my daughter cope with being a teen with an ICD. We live in a rural area of Pennsylvania, and no one else here can understand quite what she's going through.
She's 14. She was born with a VSD, got her first pacemaker at the age of 4 and her first ICD in 2010. Please message me if you can give us some advice!

Posted by uvagershwin on 2012-06-28 10:04. 0 comments. 393 reads
 
I was tipped off that there was an anxious member out there whose 4 year old is facing implantation. I can (sort of) understand your fear. I was getting my 3rd pacemaker at age 4. I know that doesn't really help, but I can tell you all about what your child will experience. Please message me!!

Syd



Member Login
email:

password:



Who's Online?
We have 6342 visitors online.

Members online:
  phyllandrew
  donr
  DampDog
  Artist
  Cally90
  billyxoc1@gmail.com
  Lurch
  Barnes42
  Megan
  PatCan
  GoodDog
  Sunnystives
  Lucinda1406
  Grilor
  Tattoo Man
  Woodsey
  paulc1950
  Bionicwoman
  BrynaR
  gojack
  becky1958
  TraceyE

You're Wired When...
You invested in the Energizer battery company.

Member Quotes
My muscles are very sore but each day it gets better and my range of movement is improving.

Bra Strap Comfort for Pacemaker Patients



Site content and design © 2000-2016 Pacemaker Club Inc.
All rights reserved.