As the loud telephone ring startles me from my sleep,  I inexplicably collapse to the floor and am rushed to the hospital where my heart monitor repeatedly goes crazy with bouts of cardiac arrest as I am inappropriately treated for a gamut of suspected conditions including, due to recent travels, malaria (and quinine, an enemy of the long QT wave, certainly does not help matters)….

If you’d asked the medical staff who defibrillated me over 70 times over that three-day period if I would be–well, since “blogging” wasn’t a word yet in the 1990s, let’s say–”journaling” about my dramatic Long QT diagnosis over 25 years later through a world wide web (words which most likely hadn’t hit the dictionary yet either), they probably would’ve thought:  “WHEN PIGS FLY!”

If you’d asked me, after spending nearly a decade of searching for the doctors who could even try to answer our questions, if I thought that my entire family could be diagnosed and treated for Long QT Syndrome simply through a blood test, I would’ve responded the same.

After tirelessly advocating and fundraising just to get an AED on the wall of my son’s elementary school (once we were able to move beyond ECGs to get an accurate Long QT diagnosis between birth and Kindergarten), if you’d told me that by the time he got to high school there would be an AED less than five minutes away from any point on campus with several portables available for field trips, I definitely would have responded, “Yeah, right, WHEN PIGS FLY!”

After trying to explain to my son, year after year, why he couldn’t try out for the team and painfully watching him desperately try to fit into a young boy’s social world with this little black cloud (and AED) following him around to all the adventurous places he was determined to go, you can certainly guess by now what I would’ve thought if you’d told us that he would be allowed to play sports his freshman year of high school and completely beta-blocker free by his senior year following denervation surgery.

Finally, you can only just begin to imagine my response just seven years ago, after finally trading my debilitating beta-blocker fatigue for an ICD which initially came with its own set of anxiety issues, if you’d told me, after never having run a full mile in my life, that not only would I be meeting and running with other heart patients with implanted devices from all over the world, but also training to run my 15th half-marathon in Cincinnati which just-so-happens to be called          –wait for it–“THE FLYING PIG Half-Marathon!”                               

Will there ever be a complete cure for Long QT Syndrome?