New Here — Intro

Hello. I'm new here and thought I'd introduce myself and provide some background...

My cardiac journey started with my daughter, who had been diagnosed with "epilepsy" at age 12 due to seizures.  

Fast forward to her age 20, after multiple "seizures" she when to the doctor where her heart stopped.  It stopped multiple times between the doctor's office and the hospital (what I now know is called an electrical storm).  A great cardiologist diagnosed Long QT Sydrome an not epilepsy and said it tended to be genetic.  I explained I had a history of fainting, but no heart problems (oh...if I knew then what I know now!).  

Fast forward 5 more years and I'm in the cardiologist office for palpitations.  I'm now diagnosed with LQTS as well and put on beta blockers.  

Fast forward again 5 more years and genetic tests are available.  We now know that only one of my children and none of my grandchildren have inhertited the mutation--just the one daughter.  

I received my PM/ICD in March 2020.  I always knew it was a matter of "when" rather than "if".  I'm still mostly controlled with beta blockers (Nadalol/Cougars), but it's nice to have the back up when I need it.

I'm glad I found you  Even after nearly 25 years of navigating the medical system and 15 years of watching my daughter adjust to her wired state, I still have questions and concerns.  It's such a relief to know I'm not the only one...

 


3 Comments

Glad you both made it

by crustyg - 2021-10-09 16:37:53

Not that many years ago, LQTS was a hotly debated cause of sudden death in young people - that could only be diagnosed during life!  Score one for the cardiogist.  Medical science has moved on a *lot* in the last 20+ years.

Actually the genetic diagnosis of some of the more common cardiac conditions is still not great - e.g. HCM where positive genetic findings sits resolutely at about 30% - and the clinical diagnosis is pretty certain, DCM, much more common but genetic diagnosis sits at about 20% of cases, and I don't think we even have candidate genes for the SA-node failure so commonly seen in endurance athletes.  So there's still a lot of work to be done.

Welcome.

Endurance athletes

by AgentX86 - 2021-10-09 21:36:03

I don't think you'll find any genetic cause behind the heart damage due to endurance athletics.  These isssues are easily enough demonstrated to be due to fibrosis caused by the abnormal muscle mass and stroke size of the heart over a period of years.

welcome

by Tulp - 2021-10-09 22:59:30

Hi and welcome

We all have our reasons to be here, hope you will find your answers

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