A Quick Hello, Update and New Years Wishes!

Posts from Jan 1 2008 thru Dec 31 2008

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Momof2HeartKids
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A Quick Hello, Update and New Years Wishes!

Post by Momof2HeartKids » December 29th, 2008, 3:29 am

Hi Everyone and welcome to everyone who is new...wow...every time I log on I see so many new names and stories - a big hello to all of you. Thanks Helen for keeping everyone updated.

I hope you all had a wonderful Christmas and holiday you celebrate! Jake is doing so much better than he was and has adjusted nicely back to school. Of course there is always something though.... they now have found he has another cardiac gene mutation - Long QT type 2 - Im still trying to wrap my head around how he has this and Brugada - but maybe this will help them tie together things that they always found strange with his ekgs and such. So now we have to have more genetic testing done - Todd and I and the girls will have it done this week to find out if Todd or I passed it on or if it was a spontaneous mutation and to make sure neither Katie or Hayley have it. We are still adjusting emotionally to him not having the ICD, lots of checking on him and we have an AED that goes everywhere Jake goes and Jake is off the Quinidine like Helen mentioned and back on a beta blocker. Thank God we stopped the Quinidine because it is contridicted in Long QT.

We really had a wonderful christmas - although we gave Jake an over indulgent gift I swore I would never let the kids have at such a young age...a cell phone..mainly because he wants to be able to text katie up at college....I still think its not a grewat idea but with the year he has had I think Todd would have tried to get him the moon if he asked for it!

I want to wish you all a happy and healthy and zap free new year and you will all be in my thoughts ! Allen, I am sorry to hear you have been back in the hospital and not feeling well and I want you to know I am sending hugs and prayers your way!!
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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Lazydays
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Post by Lazydays » December 29th, 2008, 7:26 am

Cyndie

Thanks for the update on Jake. I think many of us on the forum take a particular interest in how Jake is doing because he is so young and has endured so much and had many hospitalisations - especially this year. Not only does Jake have a hard time - your whole immediate and extended family must have had a torturous year.
I wish you all a happy and healthy 2009.
Gary

Life Can Sometimes Be A Shocking Experience

March 1994 - MI
June 2003 - Stent
July 2008 - VT - Stent & ICD fitted
Dec 2008 - Appropriate shock
Sept 2011 - Ventricular Ablation (failed)
May 2012 - Ventricular Ablation
May 2013 - Ventricular Ablation (failed to induce VT )
June 2014 - Ventricular Ablation
25mg Spirolactone
5mg Bisoprolol
10mg Ramipril
40mg Pravastatin
Warfarin
Disopyramide - 400 mg

TravelingMan
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Post by TravelingMan » December 29th, 2008, 7:55 am

Glad to hear Jake is doing so well. Hopefully the genetic testing can provide some answers.

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uksteve
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Post by uksteve » December 30th, 2008, 2:24 pm

Hi Cyndie,
Thats great news,its been a tough old time for you all and its good to hear things are getting a bit better, I think Jake deserves the moon so a cell phone is a good substitute lol My love to you all and may 2009 be a great year for your family , Take care and best wish's UK Steve
They say lightning does'nt strike twice...."They" dont have an ICD!!! -Steve G

I believe in re-incarnation , my headstone wont say RIP instead it will say BRB

"The mind is like a parachute, it only only works when it is open"- Frank Zappa (In Memory of Mark)

Mark

Post by Mark » December 30th, 2008, 3:48 pm

Cyndie,

Good to hear from you and about Jake. All my wishes for you to have a smoother 2009 for all of you. Hang in there, it's gonna get better... a little bit at a time.

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Momof2HeartKids
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Post by Momof2HeartKids » December 30th, 2008, 4:34 pm

Thanks Steve and Mark and all, and we wish you a happy and healthy too!!!
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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