SADS Foundation :: Sudden Arrhythmia Death Syndromes Foundation

Hi friends,

I was diagnosed with Long QT Syndrome not too long ago and am still learning to adjust to the situation. In fact, I just had an ICD implanted and now I go about my day feeling really uneasy. I am so scared of having an episode where it fires. Or what if it fires on its own without there being an actual arrest? Can someone tell me what it's been like to live with one of these for a while--does it scare you? Or can you get used to it after a while?

My son got his ICD implanted when he was 8. 2 months after he had it implanted it fired 5 times. They said it fired appropriately. It has been a year and a half now with no troubles. He does worry that it will happen again, and talks about it daily. He said it doesn't hurt it is like having someone throw a ball at your back. I think I am more scared than he is though.

Hi, AlGal. I have LQTS, and I have had an ICD since 1991. I remember how scary it was when I first got it! So I do understand your worries.

I have had so many zaps from mine that I have no idea how many. It hasn't happened in over 11 years now though.

It's hard to describe what it feels like. Yeah, like a VERY hard kick in the chest, only from the inside. I won't lie to you!--I hate it. A LOT. But--every time it has happened, it has saved my life. I remind myself, would I rather get a kick in the chest and keep on living? Or no kick in the chest, and no more life? I'm really happy I'm alive.

Yes, I did get used to living with it. I do not think about it every day, or even every week. I pretty much only think about it if I start feeling those irregular heartbeats, because I know that, if worst came to worst, the ICD would save my life. As it has many times already.

So, yeah, it's scary, and it's awful when it does fire, but it would be a lot worse if it didn't.

That's just my own experience. I've actually talked to people who don't particularly mind it when their ICD fires. Is there anybody out there who has a different experience to relate?

- Sylvia

Hi My name is Jackie, I've had a ICD for six years along with my Mom, Sister and Niece and we have never had a problem. We have Long QT also. Try not to worry you will be fine, you need to worry more, if they didn't find your LQT. They didn't find it in us until it was to late to save my children.Please try and relax you will be fine.
Jackie www.jimmyandcrissy.embarqspace.com

Hello ,

My name is Corinne. My daughter Olivia died 4/22/04 at the age of 14 due to LQTS. I am trying to connect with other parents in California with hopes of starting a California SADS Chapter. If other parents would please reply to my request, maybe together, we can move forward with organizing one. Would love to hear from you with any thoughts, ideas, plans to put into place to get this started.

My life is not same with out Olivia but I do not want her death to be in vain. My dream is to never have our children forgotten, to honor all of them by speaking out and educating other parents.

Look forward to hearing from all of you soon.

God Bless,
Corinne
Olivia's mom

I would love to help you, but I live in Indiana
Jackie www.jimmyandcrissyembarqspace.com