St. Jude Medical Pacemakers & ICDs

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Posted by mereiriz on 2013-01-01 03:18. 12 comments. 808 reads
 
My last post was on September, celebrating the news of my first pregnancy. Today I cry with complete emptiness, sorrow, rage, because I lost him. There are no words on any alphabet to describe what I'm feeling. We love you, baby Dylan, our little angel.

Posted by Jobo81 on 2012-12-05 19:39. 8 comments. 592 reads
 
Hi,
I've posted a few times and have always found you guys to be very supportive and helpful. I'm struggling with things at the moment and was wondering if anyone had been through a similar thing.
My baby had his PM at 5 days old, he's doing amazingly well and is now a fantastic little 9 month old.
I've struggled to come to terms with what happened over the past 9 months, I've jumped from coping fine and accepting things to breaking down & struggling daily. I've now been diagnosed with post traumatic stress.
Anyone relate to this???
Thanks. X

Posted by concernedmama on 2012-12-04 13:59. 11 comments. 691 reads
 
Hi, I was just wondering if anyone else has a child with complete heart block, who also lives in Canada?

Posted by siderider2 on 2012-11-25 18:29. 3 comments. 410 reads
 
My 4 yr old granddaughter will be getting a pace maker next week as she was born with heart abnormalities. After surgery last week to remove scar tissue around her aorta her heart went into complete heart block stage 3. After waiting 10 days for it to regain a regular beat her doctor decided on a pace maker. Her surgery will be at St Joseph's Children's Hospital, Tampa, Fl.
Will let you know how it works out. Thanks for letting me share.

Posted by lizzylyn on 2012-11-21 21:29. 4 comments. 649 reads
 
Wow! I am new to this site and really am dissapointed I didn't know it existed until now. What a great resource and how it could have helped me a lot in my pregnancy. I didn't know there were so many people like us!
My 8 month old baby was diagnosed with complete heart block with I was 19 weeks pregnant with him. He started developing hydrops when I was 29 weeks pregnant (HR was only 30ish), so they took him by emergency c-section. He lived in the NICU at a children's hospital for the first 4 months of his life. He could get his pacemaker until he was big enough so for 3 months he was externally paced, then got his pacemaker and still took a month to get better from that.
He's doing really well now, we are still on oxygen...


Posted by hellua on 2012-11-19 05:34. 3 comments. 783 reads
 
Hi, I had a small scare yesterday when my 9 year old (who has had his PM for a year and a half) told me last night he was feeling funny near his PM. He said it felt like little shocks, although he couldnt really describe it very well. He had been playing with a magnet set that someone gave him for his birthday. I had told him not to put it near his chest, although it was just a kid's toy, not industrial strength magnets!! Does anyone have any ideas on this? Could it be related? I was a bit afraid it was the power of suggestion as I had told him just in case to be careful. We decided to put the toy away for a bit and see how it goes. Has this happened to anyone else? Thanks! Sharon -Luca's mom

Posted by ryansmom on 2012-11-17 19:59. 3 comments. 449 reads
 
Thank you for all the comments concerning my son Ryan!! Ryan is actually out tonight helping with a community dinner for Thanksgiving that will be going on tomorrow, he was so excited and that made me soooo happy!! I had someone ask if I was a praying Mom...you bet I am and very proud to be, I know Ryan is here with me because God has much bigger plans for Ryan, he was a very sick little boy when he was born but you'd never know it now ! I do thank all of you who offered advice, just like someone said it's hard to watch your child suffer but I pray in time this to shall pass with Ryan , he's only been home 1 1/2 weeks so things are still healing, we go back to the Dr. for a check-up on Monday, and hopefully he'll get to take a nice showe...


Posted by Jobo81 on 2012-10-25 19:50. 5 comments. 678 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. 564 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. 602 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. 416 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. 661 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. 624 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. 384 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. 431 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. 595 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. 1055 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. 1197 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. 768 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. 413 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...




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