"BREAKING IN A DEFIBRILLATOR" IS THERE SUCH A THIN

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JOHNCDEANS

"BREAKING IN A DEFIBRILLATOR" IS THERE SUCH A THIN

Post by JOHNCDEANS » September 24th, 2006, 6:57 pm

MY SIXTEEN YEAR OLD NEPHEW HAD A DEFIBRILLATOR IMPLANTED JUST A FEW MONTHS AGO. HE HAS HAD PROBLEMS OF SOME SORT EVER SINCE. HE IS VERY DEPRESSED AS IS HIS MOTHER VERY MUCH SO. IT IS VERY HARD FOR ME TO IMAGINE COPING WITH SUCH A THING AT HIS AGE, OR ANY AGE FOR THAT MATTER. HE WAS A PREMATURE BABY AND HAD HEART SURGERY FOR CORRECTING SOME PROBLEMS WHEN HE WAS JUST A BABY. IN FACT, HE SPENT THE BETTER PART OF THE FIRST YEAR OF HIS LIFE IN THE HOSPITAL HAVING SURGERIES. HIS PARENTS HAVE TAKEN HIM TO SPECIALISTS IN CLEVELAND, CHARLESTON, ATLANTA AND NOW CHARLOTTE. IS THERE ANY ADVICE OR HELP OUT THERE FOR US ?

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SheilaP
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Joined: April 18th, 2006, 8:19 pm
Location: Victoria, BC

Post by SheilaP » September 24th, 2006, 10:29 pm

This is tough stuff! I am 37 and just had my ICD implanted in January. I am still having a hard time adjusting. The ICD area is tough to protect and I like to play hard. I personally chose to go on anti-anxiety/depressant drugs to help me get through this time and find my joy for living again. I am doing much better. I also got myself personal counselling to help deal with it. Sounds like your nephew has had a lot to deal with in his life.

My experience is their is not enough supprt for people making these big changes. There are other young people on this site, many who post fairly often. Does he have a computer connection? Perhaps someone younger could send him an email.

I would also encourage you to put this post on the main forum area, not just the kids area. There are many great people who would be willing to give you some of their own advice! (Young and Old!)

Thanks for trying to help! :D
Long QT Syndrome.

Jan 28 2006: ICD Guidant Vitality 2 T175 implant
Revisions: Jan 31 2006 (pocket failure), July 25 2006 (pocket failure & device wandering), March 5 2007 (sub-pectoral implant - success!!)
WAIT! April 5, 2007 Guidant ICD recall. October 15, 2007 Sprint Fidelis Lead 6948 recall.

Dec 28 2011: ICD St Jude's Current VR RF Model 1207-36 implant

Implanted in previous sub-pectoral pocket, laser lead extraction, St Jude's Lead installed (T.B.A).

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Momof2HeartKids
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Post by Momof2HeartKids » September 25th, 2006, 8:19 am

John,
I feel for your nephew and his mom. I am a mom with a defibrillator and I have to children with them 7 & 17 (5 & 15 when implanted). It is tough on anyone getting a device and a teen has their own set of issues to deal with. Teens dont like anything that makes them feel different or for people to look at them like something is wrong with them. This can be depressing to them. My teen daughter initally had a hard time as well. But I can tell you this... mentally it does get better.

As for mom - boy can I relate. There is nothing harder than seeing your children suffer in anyway. The fears, the unknown, the new adjustment, it can all be overwhelming at times. There is most definately advice and help out here and I think you came to a great place to start.

Im not sure what sort of ongoing problems he has had since the implant but if you care to share more maybe we can be of some more help. We have had our share between the two kids as well.

There are also support groups in many communities although these are lacking in support groups for ICD kids or teens, but maybe mom can attend somewhere local. But inthe meantime - tell her to come and visit here.

I would be more than happy to talk with them, I have done so for quite a few families of kids and teens. I will pm you my number. They can both come on here to talk and ask questions, share their fears, etc. You are all welcome anytime!! I think you will find this to be a great group of people with lots of different views on many different subjects. It helps to be able to come to a place where everyone can relate in some way to what you are going through.

Hope to talk to you soon. You can always post in the main forum with general stuff too. I know a lot is different for kids in many ways but a lot of the general stuff and the emotional end is the same.
Wishing You a Zap Free Day,
Cyndie


(Brugada Syndrome, Long QT Syndrome, Sick Sinus Syndrome, ICD & 2 children one with Brugada, ICD and one with Brugada, Long QT and removed ICD due to staph)

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