St. Jude Medical Pacemakers & ICDs

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Posted by Capitals#1 on 2012-08-17 19:32. 7 comments. 557 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. 10 comments. 819 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. 905 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. 623 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. 381 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. 411 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. 370 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. 524 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. 2 comments. 1438 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. 772 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. 421 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. 283 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

Posted by azlilly on 2012-05-28 22:05. 7 comments. 559 reads
 
I am a special ed teacher and go in tomorrow morning to get my first pacemaker. I have told the kids that I teach that I will be going in for surgery and will be coming back to school with a bandage on my chest so not to worry.
Does anyone have any suggestions on how to explain to the kids what has happened.
They are K-8th grades Special Ed.

Posted by didi on 2012-05-17 08:14. 10 comments. 595 reads
 
Hello everyone! I just joined this wonderful club and I'm excited about finding the answers to my questions here. I was born with a large VSD and after having an operation to close it I developed a heart block which required a Pacemaker. I had my first Pacemeker at the age of 5 months. I'm now 19 years old and I'm totally dependening on it. I've changed the Pacemaker or just it's battery more than 5 times now. My question is, would I be able to get pregnent and have children normally or will I face some issues? Is the process of giving birth put my life at risk? Or I have nothing to worry about and I can be the mom I always wanted to be? Thank you in advance. :)

Posted by KJensen on 2012-05-15 11:37. 4 comments. 605 reads
 
Im scheduled to get my pacemaker implant on the 22nd of this month. I have a 4 month old daughter that i have been pretty much exclusivly nursing since she was 10 weeks, she will no longer take a bottle. My question is: can i nurse right after the surgry or am i going to have to wait till i heal a bit? Has anyone ever had this problem? Im sort of worried about the sedative they will give me and she weighs 14 pounds now! Am i going to be able to hold her to me so she can nurse?

Thank you for imput in advance
Kristina

Posted by sue burns on 2012-05-09 20:08. 0 comments. 466 reads
 
Hi, I have had a pacemaker for 37years. Currently on my seventh. My Mother died in 1947 from a heart block a few years before pacemakers were invented. My elder sister had one fitted in her early twenties, and her son had his at the age of 18years. My lovely daughter was diagnosed with the same congenital heart block last year and now has one fitted at the age of 34 . I am 100% pacemaker dependent but my daughters is on demand. I am English, but live in Spain, and have had my last two pacemakers fitted here on the national health with wonderful treatment. I also have a Medtronic CareLink Monitor which eneables me to get checked once a month without having to go the hospital. Research is being done into the rare gene that my family seems to...


Posted by abigailwinthrop on 2012-04-29 20:15. 9 comments. 454 reads
 

About 3 or 4 years ago I had an account on here, I was around 14 years old and apparently I made such a great password that now I can’t even log in, haha!

I thought that since I’ve been living with heart disease since I was born I could try to help out parents or any teenagers with questions because I can definitely relate!  Plus, I made so many friends the last time I was on here that I decided to come back and get connected with the community again! So, here I am!



Posted by shower279 on 2012-04-27 10:11. 0 comments. 313 reads
 
has anyone had the situation where you‘ve just started a new job (about 2 months now)...haven‘t told new employer..not only that you‘ve got a pacemaker but that you just found out your pregnant?

Posted by Ambre321 on 2012-04-12 22:19. 1 comments. 455 reads
 
Hello All!!! I haven't been on in a little while. I'm recovering well, though having some problems with horrible pain in my left arm, and in my chest. I don't sleep well due to the pain at the incision site.

Well.. besides all that, my boyfriend has recently started talking about having a child. I have a son, and he has children from a previous marriage. We understand the risks involved. Has anyone gone through a pregnancy with a pacemaker? My doctor states that as long as I follow instructions i will be fine.

Just looking for advice or if anyone has gone through this before.

Posted by AndyMorg on 2012-03-30 09:10. 3 comments. 992 reads
 
Kind of strange for a "newby" as I got my pacemaker Dec 26, 2011. I am a 70 year old accounting professor. Doing quite well thank you.

My daughter, who is 39 and born with Down Syndrome and a congenital heart defect, has had a pacemaker since her open heart surgery at nine months. She does quite well, although she is living with my wife and me. We honestly have loss track of how many pacemakers she has had, but we think she is on her seventh one. I think the most significant thing for me as her parent is seeing the tremendous changes in technology over the years.

Daughter will be 40 in October. She is very active in our church as well as other groups. Every where she goes, she is accepted quite well.





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