Tuesday, April 18, 2017

The Third Seizure Part 2 and Diagnosis #Meg's Long QT Journey

I ended the last post stating that long qt syndrome was a possible diagnosis. Here's the rest of how that became official.

Getting a second opinion meant going through another round of tests for both cardiology and neurology. On one side, my cardiologist needed to make sure it was long qt and not anything else heart related. At the same time, my neurologist still had to rule out epilepsy and anything else brain related. Most of the tests were what I had before: EKGs, echo cardiogram, EEG, a sleep deprived EEG, stress test, and an hour long MRI of my brain. Not that it matters (and this won't be in the published book form of my story), I had the MRI on my 14th birthday. The results pointed to the long qt and proved that I didn't have epilepsy.

That would've been great, if only my doctors could agree on a diagnosis. My cardiologist wanted to diagnose me with long qt, but he couldn't until my neurologist ruled out anything brain related. Even though I was cleared from having epilepsy, my neurologist wasn't satisfied and wasn't going to be satisfied until she could come up with some way to diagnose me with it. No lie, it's what she actually told us. All of the tests were done in March and April. May came around and we were still waiting on an official diagnosis. On May 14, my neurologist wanted to do another test: a 24 hour in-hospital EEG. That was my first ever night I spent in the hospital - hooked up with wires connected to my head with a monitor watching my every move at the bottom of the bed. It would've been okay if I had actually needed it done. It was all worth it because when I got discharged the following evening, I had what I needed: answers.

May 15, 2001 was the day I officially got diagnosed with Long QT Syndrome. It was, once again, a bittersweet moment. I was relieved that I finally had an answer after a two year battle that included having three seizures and what seemed like, endless tests. However, it became real. I was beginning to understand what it meant and how it was going to affect the rest of my life, as I was only 14. I was supposed to be looking forward to graduating eighth grade in June and starting high school in a few short months. Instead, I had to accept the fact that I had a heart condition and would have to take medication for the rest of my life despite that I looked and felt perfectly normal.

Coming up next: what exactly is Long QT Syndrome?


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