St. Jude Medical Pacemakers & ICDs

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Posted by japresler on 2013-03-11 02:55. 1 comments. 574 reads
 
I couldn't help but be touched by your post. My granddaughter had congenital heart block and was also paced at 3 days old and has had two replacements since then. She also has a comewhat enlarged left ventricle and has been on meds since 5 days old. The first two years were the hardest for my daughter and she also had Ptsd. She was so afraid of everything, checked on the baby 5 times a night, and we were all worried about her too. Aletheia (my granddaughter) is now 8 and a half - and she is doing really well. Her heart enlargement has not gotten worse and she is quite a happy little girl. She has had her struggles - her last battery replacement made her just plain mad - and we let her be. But one day after the surgery (which was d...


Posted by dg83 on 2013-03-08 00:47. 5 comments. 538 reads
 
Hi everyone. My baby boy is about to have a pacemaker implanted in the next two weeks or so and have found this site helpful in seeing how many uplifting stories and experiences people can have.

A bit on background – We live in Melbourne, Australia and my son was diagnosed with complete heart block at the age of 5 and a half months. We went to see a specialist because his reflux was getting worse and as the doctor was examining him, he found the slow heart rate, just by chance. To say it was a shock is a complete understatement!

Because he has no symptoms, he has had regular bimonthly appointments. Up until his last appointment he was doing well. He is now 16 months old and although he still has no symptoms, tests h...


Posted by Annelise on 2013-02-17 02:50. 10 comments. 601 reads
 
Hi everyone! So releaved to have found this wonderful support group. I'm a mother of 2 children,a daughter turning 8 in June,and my son turning 3 in May. My 1st son was born in 2004 but died on the 4th day after birth,due to a very rare heart defect. To make a long story short,it seems the genes in our families males are bad news!! My husbands grandfather died when 35,had a slow heart rate,and on 35 it stopped! While still pregnant with my son Jayden,who's turning 3 in May,my dr picked up an irregular heart beat on the sonar,and with my 1st born's history,they monitored him well till after birth. A few days after he was born,we took him for a heart sonar where they did NOT pick up any low heart rate,just the extra pulse which made it irreg...


Posted by graham1 on 2013-02-07 05:21. 4 comments. 486 reads
 
Hi.
Any have any experience of links between pacemakers and tricuspid regurgitation.
Regards.
Graham

Posted by mereiriz on 2013-01-01 03:18. 12 comments. 730 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. 533 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. 559 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. 365 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. 583 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. 652 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. 400 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. 613 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. 511 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. 523 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. 369 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. 575 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. 525 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. 341 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. 392 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. 547 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.



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