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...