St. Jude Medical Pacemakers & ICDs

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Posted by ryansmom on 2015-02-16 12:21. 8 comments. 321 reads
 
We are waiting to hear from Duke Childrens Hospital in NC because my son Ryan has to get a battery change in his pacemaker/defibulator the lead that controls his defibulator is losing power. Ryan is 17 now and just wants to go get this done I on the other hand dread the whole thing wish I could take his place. Prayers for my boy would be nice

Posted by 1942301944 on 2015-02-12 15:31. 2 comments. 287 reads
 
so my mom was supposed to be wearing a heart monitor vest and it helps keep her heart from get to beating to fast till her surgery date the 19th since she didnt will this cause any complications in her surgery

Posted by 1942301944 on 2015-01-27 18:25. 5 comments. 351 reads
 
So im not the one getting a pacemaker its my mom she is 34 and a heavy drinker is there anything i should be worried about? please help!

Posted by risser on 2015-01-26 13:57. 2 comments. 229 reads
 
Hello! I just found out I am pregnant a few days ago. This is my first pregnancy and I am five weeks along and other than being incredibly shocked and scared I am wondering about what others have experienced with pregnancy and pacemakers. What makes being pregnant so complicated for me other than the abdominal pacemaker is that I have had a prior fontan procedure. I also have ASD, VSD, L-transposition, and a murmur. I have my pacemaker in my abdomen, although I've had pacemakers all my life (since 3 months, now I am 22), this one was implanted in April 2013 so I'm not worrying about the battery life.

I'm more worried about how a pregnancy may impact someone who has also had a fontan procedure as a child since I have CHD. I can't...


Posted by Kaity on 2015-01-15 05:23. 4 comments. 462 reads
 
So it's been 11yrs since my last traumatizing pregnancy, I say traumatizing cause my daughters pregnancy is what unveiled my bradycardia. I became very syptomatic during my pregnancy, fainting, palpitations, numbnessand heaviness in extremities, shortness of breath, dizziness, nausea, the works, and the whole pregnancy i was being told that i was having panic attacks, till i finally had my baby & matters got worse there after. It was only then that it occured to my then OBGYN to send me to a Neuro/cardiologist, to come find out I have bradycardia w/2nd degree heartblock. I had my pacer surgery in 2003, i struggled many yrs with it, had no quality of life for 5 yrs as i still struggled with feelings of syncopy, tachycardia... when my probl...


Posted by misscannon on 2015-01-12 16:40. 9 comments. 270 reads
 
Hello everyone I am new to this... jus hoping for some positive feed back... We'll I'm 23 weeks found out a week ago that my daughter has a 2 to 1 heart block due to my autoimmune disease I have... now I am considered high risk... when they first caught it her heart rate was at 80... 2 weeks after that they admitted me in the hospital for 2 days started me on steroids... and also this other IV medication that is suppose to help her... I have to get get fetal echos once a week now and also see the high risk doctor as well... a little frustrating but I will do what ever I can own my end to help her get here safely... any who I went to the fetal echo dr today... and her heart rate dropped again and her heart was a lil bit larger than it shoul...


Posted by lisabfit on 2014-12-31 02:52. 9 comments. 387 reads
 
I'm wondering what type of PM Dr's have implanted in young children & young adults with complete heart block-but no heart failure & normal ejection fractions...dual chamber (2 leads) or bi-ventricular with 3 leads...and if it's a 2 lead PM -has there been any evidence of cardiomyopathy after long term pacing on one side of the heart? Thank you in advance for your time...

Posted by wolffash on 2014-12-02 15:20. 3 comments. 413 reads
 
Hello All:

After a routine checkup at a new pediatrician, it was discovered that my four year old has a heart murmur. She's also small for her size and so she was referred to a pediatric cardiologist. The PC discovered an AV block. I do not know the degree yet-he did ultrasounds, ekg, and she wore a heart monitor for 24 hours.

We meet with him again in about week-we met with a genetecist to see if there were any underlying conditions that might conflict with the pacemaker-and this next appt is to discuss the plan moving forward.

I'm very anxious, worried, concerned. I'm afraid she will die suddenly (the doctor assured us this wouldn't happen at her age, but STILL), or not live a full life, etc.



Posted by cllangla on 2014-11-14 08:35. 7 comments. 531 reads
 
I am new to pacing, my 8 week old grandson has had a pacemaker since day 9. I am looking for something he can wear (under his clothes) that will protect him from wireless transmissions. I have found protective compression clothing more geared towards older kids and sports. His pacemaker is in his belly and it will be until he is closer to 10-12 years old.

Is there such a thing that would give him protection from wireless phones, ipads, computers, etc.

Cathy

Posted by talia on 2014-11-08 23:26. 10 comments. 632 reads
 
I am a mother of a child that will be having a pacemaker put in very soon. She is a sporty, fit, athletic gymnast. She is looking at working as a gymnastics coach while she studies to be a primary school teacher. She is only 13 but has already set wheels in motion for her future. She currently helps out at her gym as an aid and hopes to start her coaches course in Jan when she turns 14. We hear lots of different stories and my daughter is all about trying anything. She loves scary rides, she not scared of heights and loves playing team sports. She is also very good at athletics and she loves the out doors.
Could anyone tell me if this will be possible after she has her pacemaker and sport wise what she can and can't do?


Posted by ryansmom on 2014-10-31 14:36. 3 comments. 416 reads
 
Haven't been on this sight for awhile, but decided to drop back in. A couple yr. ago my then 15yr old son Ryan had to have emergency surgery because of a defected Boston Scientific pacemaker, that was a horrible scare, of course Ryan came through it better then mom. Today he had his battery checked and it's saying a year or less, so here we go again! Sure wish this got easier but it doesn't I'm already stressing . Ryan just turned 17 on 10-10-14 but to me he's my baby. He had to have 5 open heart surgeries by the time he was 2, and received his PM at 15mn. think I'd be use to this by now, they told us this PM would only last 2-3 years due to the leads have slipped and need to be re-positioned which they will do this upcoming change, cou...


Posted by Jacqueline1985 on 2014-09-07 17:47. 2 comments. 550 reads
 
Hi I was wondering if anyone could help? My mum had 2 stents fitted 4years ago and was fine until April this year when for 3 days she was going into cardiac arrest. She had an implantable defibrillator fitted which thank god hasn't had to do anything yet it was fitted below the collar bone but seems to have slipped down to her breast. Is this normal? Has this happened to anyone else? The wires still seem to be in place We are still learning any help would be much appreciated.

Posted by marjolein on 2014-09-05 09:44. 4 comments. 358 reads
 
Hello everyone

My name is Marjolein and I live in the Netherlands with my husband and my 2 girls. My youngest one is 5 months old and was born with a congenital heart block. When she was 1 week old, she gets a pacemaker.
She is doing better now.
I can't find much parents of children with pacemakers in Holland so i'm glad to find this website.

I would like to have contact with other parents who have a little child with a pacemaker. So I can ask their experience and so I don't feel like i'm the only mama in the world with a child with a pacemaker.

Thanks!

Posted by nato on 2014-08-03 16:27. 2 comments. 582 reads
 
Hi All,

Hope all is good and your PM is giving you the best out of it.

May god be with you all and continue to give you support each day.

Question,

Mom with kids in the USA, can you give an average cost to change the battery on a kid age,8 yrs old.

Appreciate your response...

Posted by sbutleremmett on 2014-07-15 07:27. 5 comments. 591 reads
 
Hi all,

our baby has been diagnosed with a 2-to-1 block and we have subsequently been informed it was caused by Anti-RO antibodies that my Mom has. The baby is currently at 30 weeks and is doing fine - we are expecting delivery at 35 weeks if all goes well. We realise we have a real journey ahead of us, but great to stumble across a group that has been through this.

Steve

Posted by tammythomas on 2014-07-10 19:36. 6 comments. 538 reads
 
Hi i need a little advice, me and my husband want to try for a baby. I have a pacemaker since i was a baby. The reason for that was fellows.. I spoke to my doctor at my last appointment and he said i should arrange to seek advice else where.He is unsure if there will be any issues. I am looking for some advice, please.

Posted by Dolphinsapphire on 2014-06-27 19:54. 4 comments. 628 reads
 
Hi everybody, I'm new to this website/club, I'm 16 and I have had a pacemaker all my life, but i have never met that many people my age with pacemakers, is there any other teenagers on here?

Posted by Bily11am on 2014-06-16 14:08. 3 comments. 521 reads
 
Hi,
I am new to this website and 'club' in general. I am getting a pacemaker this Friday, and am currently breastfeeding my 3 month old son.

I am under the impression from the doctor that I will be 'in and out'- unless there are complications, it doesn't sound like I will be staying the night. He also didn't express any concerns about me breastfeeding. Depending on what anesthetic they give me, I will be not feeding for a certain amount of time, but what I am worried about is feeding during recovery. I have no idea what to expect regarding pain, etc. It seems that everyone has very different experiences but I have yet to hear of anyone in my situation. I am also concerned about managing my son. I will have a lot of help, ...


Posted by vbilbrey on 2014-04-27 12:41. 6 comments. 625 reads
 
Hi there. I am about five months pregnant and am starting to think about how I'd want to deliver. I feel that God intended us to deliver naturally and that by doing so we can become closer to Him in that we will really recognize how sinful we truly are and have no hope but in Him. (It all goes back to Genesis where because Eve deceived Adam and went against God's command of eating of the tree of the knowledge of good and evil that God said women will now have painful labor.) I've just started thinking lately that the medication given at hospitals and things really are a way of taking away what God intended us to experience and thus distancing ourselves further from Him. Anyway you don't have to agree with me but with that being said, ...


Posted by nato on 2014-04-26 21:43. 0 comments. 359 reads
 
Hi All,

Does anyone had a child who suffers with febrile seizures and has a PM.

Question;

How long after did your child took to grow it out without having any more seizures.



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