SADS Foundation :: Sudden Arrhythmia Death Syndromes Foundation

Im almost 17 and have had an icd for 3 years. I know what it's like to be scared. and it is something you get over, you just have to accept that even though it might be painful or uncomfortable it's there 2 save your life. I've had a total of 7 shocks all of which were misfires, and although they weren't comfortable they did me no harm. and i'd rather have it there to misfire than not have it when i need it.
honestly i found i had the most fear until i lived through my first shock. after that you accept you can live through it and it helps.

hey so im only 16yrs old and i have had a ICD in since i was 12 and i've know that i've had long QT since i was 8 and that's also when i first passed out. at first i used to be scared that something bad was going to happen and it was going to go off like in my sleep but after a while and getting to know my cardiologist more and doing more research i've gotten used to it and known that i won't have anything bad happen unless i need it to..plus i'm always carefull of what i choose to do in my everyday life. ..i believe that the more ppl stress about having long qt the more their going to get their heart going...i got used to having my ICD in about a year..but i would still have several dreams where i thought it would go off and i wouldn't get any sleep cuz i thought i would get shocked then.but after a while of that everytime i would or have a dream about it i look to the possitive side of it. knowing that it saved my life and that i still get to be here with my loving family and friends..i also think about it when it has gone off the 3 times i've been shocked.if you have any questions or you just wanna talk e-mail me..hottcowgirlx2@hotmail.com

I had my ICD implanted on May 7th of this year. What lead to this happening was being at church one evening, and while sitting at church I felt really strange for no longer than a few seconds and that was the last thing I remembered. I had actually died but was brought back by a defibrillator after being shocked three times. Two days later my ICD was implanted. I was a nervous wreck, just basically sitting around waiting for that thing to go off. On June 7th it went off for the first time and saved my life.

I wouldn't explain it as being something painful. It was really like a kick in the chest from the inside, but it was so quick it didn't seem painful at all to me. I wouldn't say it was pleasant, but was so very very fast that it wasn't painful. I felt myself getting that same kind of dizzy feeling, then bam, there it was. I went back to the hospital where they told me it was real and it did save my life. I actually do feel better about it now that I know how it feels when it does go off. Looking back, I would not have worried about it nearly as much as I did had I known what it was going to really be like. Just remember that it will likely save your life if it goes off, and it won't be nearly as bad as you are imagining.

Hi, I had my ICD inplanted in Nov. 2007. Living with LongQT all my life, but not having it diagnosed until about 13 years ago. For those 13 years, I had no symtoms. Under extreme emotional stress, not eating and very low magnisium levels, I had an episode. My doctor and I have talked about getting an ICD over the years, but really wanted to wait for the technology to advance enough to get it as small as possible.
Well, it was time. I took no time to think about it. I had no worries, I lost both parents before turing 12 and did not want my daughter to lose me if I could help it. I know everyone has to die, but it doesn't have to be because I am being stuborn.
Everything went fine. I think of it as my little cell phone in my chest. This past week I even start, well attempted, to start running. This I have never been able to do, because I would always pass out. I can atest that running it not natural as in heel to toe. I am more scared in my mind about passing out then having it go off.
This past April, again, being under emotional stress, not eating all day, out in the hot Florida sun all day and low low magnisum levels, I got upset with someone and felt the dizzness coming on before passing out. When coming too, I was being asked if I was ok, then he said, "Zeni, you just got shocked." I was dazed. Not sure what had happened. But continued on and even went to dinner that night. I did not call the doctor, but thought I would try out the Latitude, to see if it really worked.
My Latitude worked and the doctors office called. While in the office, the doctor mentioned I had an abortef cardic arrest. As he went on, I kept repeating those words in my mind, and finally spoke up and asked what did he mean by "aborted cardic arrest?" He said I was out. I died and my ICD saved me by bring me back.
By the reading, I was pretty gone and was lucky to have come back. Wow. I have been given another chance.
Unlike others, I did not feel the kick in my chest, maybe because I had passed out, I don't know. I am more scared at the thought of passing out then the pain this thing will give me. I have felt little, like muscle spasums in my chest. It was more of a nusence then a pain. My ICD does not bother me. I put scare cream on and this week started applying my wrinkle reducing cream, and I think it has made a difference. I thought I would be more vain, but it dosen't bother me having this cell phone shaped thing in my chest.
When you think about it, think of it as a life insurance. And if that doesn't work, think about it as a convertsation piece. Ha Ha.n You are very fortune it to have had it inplanted. I wish my mother, my niece and my brother had had it. http://www.sads.org/components/com_fireboard/template/default/images/english/emoticons/smile.png

Exactly one year ago my then 4 year old went out to walk the dog with his older brother. He passed out and went down hard. He was unconscious for about 10 minutes. My older son carried him into me. I immediately called 911. After two days(originally thinking he had head trama from the fall) we found out he had long QT sydrome and that caused him to pass out. We were extrememly lucky he survived his episode. Subsequently we had the rest of the family checked for long qt with EKG's, and stress tests. They came out perfectly normal. It wasn't until we had genetic testing that confirmed that my older son and myself also have long qt sydrome. We were extremely surprised especially since the other tests showed us as normal. My youngest son truly saved our lives. Now that we know about this condition we are being treated with beta blockers. My question is this: my doctor has strongly recommended that I get an ICD implanted. I am really having a hard time accepting this. I am amost 43 years old and have never had an episode. I have never been a very active person (involved in sports etc.) but I did go through childbbirth 3 times, had major stresses in my life (indluding a large house fire we had to escape from) and finding my son unconscious. I would think if I were ever to have had an epidode there was plenty of opportunity to have it! I really need help in making a decision on this.

Thats a hard decision. I had a lot of episodes, so an ICD was not givin a second thought. My brother, at 43, died suddenly, he was getting ready in the morning and take his 4yr old to a play date, so no stress or physical activity was involved. He was not on medication, but did have the gene. Your decision needs to be from your heart. Do not do it because you are scared. If you are at peace not having one don't let the doctor pressure you. What ever you decide, just be at peace about it.