St. Jude Medical Pacemakers & ICDs

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Posted by Cally90 on 2016-04-04 16:41. 6 comments. 323 reads
 
I am 29 weeks pregnant with identical twins we found out at 24 weeks my 2nd twin has heart block doctors said we have to prepare for the worst and they can do stuff when our is baby born but depends when he is born and the weight of him I get scan two times week to keep eye on both babies our 2nd twin heat rate is stable at 50-51 which is low the doctors are hoping our baby will stay stable till I am 32-34 weeks then deliver the babies then I am so scared this being my first pregnancy I worried every day that I am going to lose one of our babies and not knowing what going to happen to our baby when he is born any advice or support would be great

Posted by Robin Kaye on 2016-02-13 17:04. 4 comments. 612 reads
 
I posted this 5 years ago:

"Our 11 year old daughter has double inlet left ventricle with the Fontan repair and complete heart block. She got her first pacemaker at age 5, and had surgery in '08 (atrial lead + new pacemaker); '09 (ventricular lead replacement) and again just on 8/9/10 to implant her third pacemaker and another new ventricular lead. Post-op visit indicated that her threshold was 4, and they can't double that to set the preferred safety margin of 8 -- pacemaker only goes to 7.5. Battery life will be severely reduced since the threshold must be set so high. Dr. says probably because of scar tissue. Probably looking at another surgery way sooner than we care to think about...

Anybody out there with a simi...


Posted by momtolily on 2016-01-17 02:15. 3 comments. 481 reads
 
Hello!
I just wanted to introduce ourselves. I'm mama to Lily, a three year old who was paced 5 months ago at 2.5. She is a twin and we discovered her third degree heart block just last year. Things moved very quickly. They do believe it was caught from a virus but some doctors believe from birth. Very confusing but we are doing really well, I'm saying me too :)

Anyway, so happy this community exists and looking forward to hearing and sharing as things arise.



Posted by nato on 2016-01-13 02:57. 1 comments. 422 reads
 
Hi All,

Happy New Year to the entire club.

Are there anyone on this club who has a child with a PM and lives in Trinidad?

Thanks and appreciate your feedback.

Posted by Meri on 2015-11-14 17:17. 4 comments. 996 reads
 
Hi to everyone who's going to read this message. I'm not sure from where to start, but as you can read from my previous messages, I've been diagnosed with congenital AV block 3rd degree, since 2007, and I wasn't put on thr pacemaker list so I don't have a pacemaker. However, then I had 21 years, and now I'm 29. I got married and I want to have children. So, is there someone who can say a word or two to me, what to do. My doctor said that because of the absence od the symptoms there is no need of a pacemaker, and that I can have a baby without any problems. But the question is : Is there a risk for me or the baby if I get pregnant without a pacemaker?
Thanks to everyone

Posted by CCG on 2015-08-13 14:07. 4 comments. 1346 reads
 
Hi all,
I am searching for women who are or have been pregnant and whose babies have been diagnosed with heart block in utero. I am currently almost 32 weeks pregnant and my baby was diagnosed with 2:1 heart block. I'm getting monitored closely and I guess we won't know anything for sure about baby's treatment until he or she comes into the world. Anyone willing to share their experiences with me? I'm worried about next few weeks. Hoping baby can make it until 37 weeks.
Thank you :)

Posted by Tonks on 2015-08-11 20:23. 6 comments. 1439 reads
 
My 16month old just had a pacemaker put in on 6/30/15. I'm wondering what kind of life she'll have in store for her. Will she be able to do dance, gymnastics or even marching band? What happens when she's school age and has to take P.E.?

Posted by Jim417 on 2015-08-06 13:52. 5 comments. 1190 reads
 
Hello. I am new to the group. My son is just shy of 13 and has a Medtronic pacemaker. He would like to play laser tag with friends and his cardiologist said ok. Have any of you, or your kids, with a pacemaker ever played laser tag?

Posted by LenP on 2015-07-30 18:38. 3 comments. 1133 reads
 
Hiya, I'm parent to a 5 year-old who was 'pacemakered' last week- side effect of his 2nd OHS was total heart block, hence the need for the pacemaker. Still in shock as, although I was aware of all the other risks of his surgery, needing a pacemaker, or rather- being totally pacemaker dependent- wasn't even mentioned as a possibility until the morning of the surgery when the 'small print' mentioned a 5% chance of needing a pacemaker'.
It's all quite a lot to get my head around, mainly because he doesn't have an underlying heart rate currently, and they don't have great hopes of this recovering, so I'm just terrified of something going wrong with the device, or him loosening his wire off before it's had a chance to 'bed in' properly. Pr...


Posted by BrendaK on 2015-07-12 22:44. 3 comments. 1393 reads
 
Hi there,

My daughter had stomach pain for many months before being diagnosed with 3rd degree AV block and pacemaker implant 2 years ago. She rcvd a single lead pacemaker due to her small artery size but her stomach pain improved, it has never gone away. She had tons of stomach testing. scope and colonoscopy that came back normal. She has grown quite a bit and now needs her pacemaker replaced and new leads put in for dual chamber. I was just curious if anyone has experienced stomach pain and if it could be related to her heart block? Dr's say her heart will work more efficiently once she receives the dual chamber.

Posted by KeirasMum on 2015-07-12 21:26. 4 comments. 528 reads
 
Hi there,
My 9 year old daughter Keira, has just had her first pacemaker anniversary and we would love to make contact with other wired kids her age.

I, her mum BECS, would love to make contact with other mums of wired kids. We are still relatively new to the pacemaker lifestyle and look forward to hearing from others.

Thanks
Becs

Posted by abbeyrd99 on 2015-06-22 16:09. 5 comments. 764 reads
 
I have to have my pacemaker replaced in the next few weeks. This is the first time to have the procedure done. I asked several questions that they were stumped by and are supposed to be getting back wtih me so while I'm anxiously waiting I thought I'd see if anyone else had gone through this.
I am still exclusively breastfeeding my 8-month-old son and want to continue to do so at least until he is 1. I also have a very active almost 4-year-old son.
Do you know if the surgery will greatly impact my ability to nurse? (I don't necessarily mean the medication I'll receive for the surgery, more my ability to move around and the discomfort in the area.) I remember when the device was first placed (before I had both my kids) I wasn't a...


Posted by MaciesMomma on 2015-05-09 13:31. 2 comments. 591 reads
 
We are home from the hospital and my daughter is doing great from her surgery. (Leads and battery replacement). In the hospital she received the book Zip Line. Its an awesome book for your kiddos that have a pm and for other children to understand why they have a scar and how it got their. Amazing book!!

Posted by MaciesMomma on 2015-04-29 22:47. 2 comments. 663 reads
 
Hey y'all!! My daughter is almost 7 and has a pm she is having surgery on Tues to replace leads and pm but besides that she is feeling like she is the only kid her age with a pace maker. I was wondering if anyone out their with a child around my daughters age would like to be a penpal with her and they can share their pm stories and calm each other about surgeries..i feel like it would really help her to feel like she is normal and that its just fine to have a pacemaker. If anyone is interested let me know she would be so excited! Brittany

Posted by gif on 2015-04-05 12:54. 3 comments. 1125 reads
 
I have a pacemaker for bradycardia, and 28 weeks pregnant. When I used to faint (prior to the pacemaker), it was sometimes triggered by (minor) pain. Otherwise the heart would just slow down at night/stop for up to 10 sec.

Prior to getting pregnant I saw a cardiologist who said "go ahead get pregnant no problem", but I needed to see a higher risk ob gyn. Now nearing the end, I was sent back to the cardiologist to discuss delivery, and the cardiologist sounded pretty set on doing a scheduled c-section (which surprised me). I dont really mind either way, in a perfect world I would prefer natural, but if there is any unnecessary risk I will of course not. I had gotten into the mindset of assuming c-section was a sure thing by the ...


Posted by Itsjustme on 2015-04-01 01:22. 10 comments. 886 reads
 
My MIL has an ICD for 2-3 yrs after a sudden cardiac arrest. She has suffered a shock at one time. She never seemed to have a driving restriction. My husband is very anxious about his mother driving with our children in the car in fear of her defibrillator shocking her and causing an accident. I'm not sure how I feel about this. I hate to put a restriction like this on grandma :( that would be quite a sting! She says she is okay to drive. But, gosh, if anything ever happened to my babies that I could have prevented I could never forgive myself! So of course I see my hubbies side too!

Can anyone offer me words of advice/wisdom/experience? What does happen if your defibrillator delivers a shock while you're behind the wheel?...


Posted by ryansmom on 2015-02-16 12:21. 9 comments. 892 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. 748 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. 803 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 Kaity on 2015-01-15 05:23. 4 comments. 1457 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...




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