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Long QT Syndrome: Want to connect with others

Heart Rhythm Conditions | Last Active: Jun 4, 2021 | Replies (54)
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@lynnw

I was recently hospitalized because of A-Fib and during that stay found out I have Long QT. I had never heard of it before but now know that it can cause sudden death. Can anyone tell me anything they have experienced. I thought I was tough after my aneurysm diagnosis and then A-Fib but now another area thrown into the mix has me kind of rattled. I am sure there are more people out there. I will be seeing my cardiologist next week and Mayo has a lab just for Sudden Death Arrhythmia but I want a "living with" perspective.

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Replies to "I was recently hospitalized because of A-Fib and during that stay found out I have Long..."
nene22 | @nene22 | Jul 9, 2019

I am currently reading a book "DEATH by prescription" by Terrence Young. I am not that far into it but they have mentioned Long QT and the man's daughter died after taking Prepulslid for throwing up and bloating. He blames the drug. Stay away from that drug if it is still on the market.

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penn1023 | @penn1023 | Oct 25, 2019

I hear dr Ackerman at Rochester is the best in the world for long qt

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janet26 | @janet26 | Oct 25, 2019

I see your post was from 2018 but I thought I would reply as I am frustrated with so many odd diagnosis as well.
I first found out I have a cardiac artery anomaly, Then a few years later I found out I have a celiac artery aneurysm, Now I am being told I have QT wave prolongation. This has been about a ten year journey. I am not young so I truly don't know if mine is a inherited situation or brought on by medications. All of these are rare and I don't understand why I am faced with so many. It is scary and it seems to take so long to get answers form the medical field. Sorry to complain on line but I am a little overwhelmed and a little frightened.

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