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Long QT what now?

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Hello everybody!

I'm 20 years old and my sister, who's 17, had a hart attack this january. After 5 minutes without breathing the doctors were able to get her back to live.

She's now recovering, but she's handicaped... But she's very nice and we're all happy that she can live with us.

They diagnosted long qt on her, so they tested me aswell and i have it too. I'm on beta blockers now they should protect us well, untill they finished the genetical tests. My doctor said, that i should live on like before, cause i look very healthy and i had an excellent sport test.

The problem is, that i look healthy, but i also like to drink a lot of beer and smoke some cigarettes at a party. Like lot of young people do.
And i also do a lot of sports, not competitivly but on a high level.

I'm going to have an appointment with my doctor soon, but I'm a bit afraid, if i can live on like this?

Can you help me with those questions.

Thank you!

Greets

Corsin from Switzerland

5 replies

Hi Corsin,
I would listen to your doctor as what he tells you, but don't take any chances either. Beta blockers and long qt does not suit well with any alcohol products; if you drink too much, it does damage to the long qt, but enough, like a trace amount or something, can make you extremely tired, so just be careful drinking beer. As for sports, first off what sports do you play and second, it would probably be wise to just tone down a little bit, like don't play nearly as much as you do currently, but still play. Most long qt events/episodes can happen during exertion and sports, but then again some people with long qt can continue running and some can't. Hope all this helps. Just take it a bit easier until you get the all clear with what the genetical tests say.

Meg

Hi Corsin,

I have been living with a LQT for 30 years and I am on beta blockers since about half a year only. I have the same drinking and smoking habits as you do...
I believe that it is the best to listen to your doctor and especially to your body and don't take any risks, especially not in exercise.

i was diagnosed with long q.t. in 1987,when i was 2 yrs old, b/c my mother wanted me to be tested (she went into cardiac arrest 6 wks after i was born- was diagnosed, and had an ICD implanted). that being said, my family has been dealing with this for awhile. i would say it is very probable that whatever your sister's long q.t. was capable of, yours is also. for example, my mother never had any problems until 6 weeks after i was born; i never had any problems (just was on beta blockers) until 1 week after my son was born and now have a pacemaker. the best thing to do for yourself is follow the doctor's advice, or it is very likely the result will be the same as what your sister went through.

Hi Corsin,
My son was diagnosed when he was 16, after heart failure too, but luckily did not suffer any disabilities as we were able to perform CPR until EMT got there. He is now 24 and drinks some beer too - no cigarettes tho. As everyone said, listen to your doctors, be completely honest with them (it's a life and death situation). And, IF they recommend and ICD for you - don't hesitate... we all feel so much safer now that Travis has his Defibrillator/Pacemaker implanted. It seems kind of scary to get that implanted... but has not impacted Travis' life at all - and he is very active in sports too. Listen to your doctors and ask them lots of questions!

Dear Corsin,

I am glad to hear your sister survived her episode, and that you are seeking advice and support online for how to deal with being diagnosed with LQTS. I think once the genetic tests comes back, you will have a better idea of what lifestyles you should adopt. You will live on, Cosrin, and will enjoy everything ... plus you are gaining a lot of perspective from both your sister's and your diagnosis.

For now, please be conservative: we need more survivor stories! Follow your MD's advice, but seek information so that you can be active in your medical care. I can't believe how much information I have taken back to my doctors just from picking up clues and researching them online myself! I am waiting for my genetic results also, as I was only diagnosed a couple of months ago.

Take care of your self, and your sister.
~Diane~

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