St. Jude Medical Pacemakers & ICDs

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Posted by Kimberlee on 2013-05-11 20:40. 4 comments. 412 reads
 
A little over a year ago I took my son in for his annual echo, (he has cardiomayapathy, not sure I spelled it right) and was told that the heart wall had thickened enough that his doctor want a defibrillator place right away. That caused my first panic attack. The surgery went amazing, and I felt some relief knowing it was there. Just under a year latter the device saved his life. That was about 2 months ago and last week it fired again. Now it has moved over to the side near his armpit. I am sick of people around me telling me that I'm over reacting. It feels like I'm not reacting enough, and I don't think they understand this is my child. I really think I'm at a point where I need other parents support who do understand.

Posted by donr on 2013-05-03 14:00. 12 comments. 1102 reads
 
Here's what Frank's son, John, reported to the PMC on 21 April. Obviously not everyone saw this. It generated 53 comments from members.

Don
Frank Passed Away Last Week
Posted by ElectricFrank on 2013-04-21 18:12

Hello, my name is John and I am Franks son. Frank passed away last week. I know he truly enjoyed being a part of the pacemaker club. He did not die from a failing heart or defective pacemaker. In fact I'm certain he would have wanted this post to actually read, "Slightly used pacemaker for sale. Perfectly calibrated and only slightly used. Installation instructions included. Sold as is."

While Frank was in great health for 82 he was also in a fair amount of pain. He chose to leave this w...


Posted by deargirl3 on 2013-04-26 22:14. 11 comments. 844 reads
 
My daughter is having her pacemaker put in on the 10th of may. She is 10 years old and always been very healthy. almost a yeaar ago she broke her arm and had to be put onder to have it reset while while this was going on the doctors found that her heart rate had dropped down to 37. we left one hospital in our area and drove her to UPMC in pittsburgh. There they diagnosed her with complete heart block. They said that they can not tell us what caused this. They told us that she would need the surgery at some point. Just about 1 month ago we noticed she was getting tired during dance and softball also turning pail and not feeling well at all. We took her back to the doctors in pittsburgh and they told us she could not wait any longer. I am ve...


Posted by jonie.pierce on 2013-04-25 22:15. 12 comments. 826 reads
 
My daughter was diagnosed with bradycardia at 7. She has complete heart block. Now her cardiologist thinks it is time for a pacemaker. He wants to have the leads sewn onto her heart and implant the pacer into her abdomen. I guess this is a fairly common surgery, but the thought of my little girl going through this has me tied in knots. The surgery is scheduled for June 6. I guess I'm just looking for a little reassurance. This is hard for the whole family. No one wants her to have to go through this!

Posted by blmom on 2013-04-02 17:56. 8 comments. 1117 reads
 
Hi all this is my first post - my son is having a pacemaker fitted on 10 April 2013 (next week)- he is just turned 18 - we are from N Ireland - he has no symptoms, never blacked out, never dizzy but he has a heart rate of 28/30 beats per min. He was told he has total congenital heart block - some thing he was born with. I was just wondering if he should go ahead with having it fitted as he is always healthy and his low heart rate does not affect his lifestyle in any way, he is a 6ft 2in healthy teenager - I am worried about the surgery - any advice welcome.

Posted by Momofironman on 2013-03-19 22:01. 3 comments. 569 reads
 
My son has complete HB and a PM. I want to know if there are other tweens that he can relate to on this board. We are facing our next surgery soon. We have had three PMs and need to choose one that will be great for a golfing teen and young man. Any help? Good models, bad, ugly?!!!

Posted by INFANTJS on 2013-03-17 07:13. 9 comments. 1311 reads
 
My son is teenager, recently he fainted and got injury, when consulted the Doctor, after Holter mapping, they advised to go for a Pacemaker. His lowest pulse rate is at 40 during night. I am deeply worried and in deep sorrow to hear this. Please advise if any alternate methods to cure bradycardia without Pacemaker. Pls help.

Posted by japresler on 2013-03-11 02:55. 1 comments. 616 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. 582 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. 647 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. 531 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. 782 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. 572 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. 643 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. 394 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. 623 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. 730 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. 421 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. 651 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. 543 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.



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