I thought about us. Our hardest moment comes right after our wave of relief; explaining why we had been passing out or having unexplained seizures. Sometimes, it was even an aborted cardiac arrest or another family member that died to get us tested and diagnosed. I live these moments with patients all the time, the moment when life will never be the same again. I know exactly how they feel. But the wave of relief we feel after getting it finally sorted out is quickly replaced by horrific fear and many questions. The one that comes up fast and furious is – what’s next? And how do I go forward thinking I might not wake up in the morning?

What I can tell you is only my experience. I did feel relief quickly tempered by fear. But the statistics you read about cardiac arrest from SADS conditions are the ones that aren’t well managed and expertly treated. I don’t have those specific numbers but they are much lower than the ones you read when you google your newly diagnosed condition. First step, get a good doctor, in fact, get an expert if you can. We can help you do this. Next step, partner with your doctor to get individualized care. Then, walk out the front door. Much like the person with life threatening anaphylaxis being afraid of bees was natural, but never experiencing the grass barefoot in the summer or a hike in the woods is equally tragic.

This blog is for you. We hear your questions posted on other forums and can’t always answer them. So let’s hear them again. What keeps you up at night? While this blog is not intended to provide individualized medical advice and cannot be a substitute for a relationship with your care provider, it can help fill a void we sense is clearly there. The one that only you feel when you are left to sort this out. You aren’t alone. Let’s do this together. I’ll start.

Recent conversation:

Sam (my 11 year old with LQTS2) “Why can’t I have a cool medic alert bracelet that looks more like a fitbit like my friend David. I hate wearing this dumb thing on my wrist because it clinks on the desk every time I go to write.”

Logan (his 8 year old brother with LQTS2 following suit) “Sam – change it to your left wrist like I did and if it looks like a fitbit when you pass out and need the AED on your way to david’s riding your bike all alone no one will know you have long QT because they think you have a fitbit and NOT a medic alert.”

Brilliantly stated.

Yes, get a medic alert. And it should look like a medic alert, not some cool piece of jewelry, it is universally known entity in the medical world. Trust me. A bracelet is better than a necklace.

What should it say?

Diagnosis simply stated, medications and devices, nothing too fancy.

What does Logan’s say?

Long QT syndrome

takes beta blocker

Here is my story – after a brief fainting episode during an exercise class 3 years ago I wound up getting a stress test and noticed my own ST segments looked funny. That led to an ECG that demonstrated a QTc of 513 and a new diagnosis of long QT syndrome. I started nadolol and had very low heart rates and went in to get a pacemaker to tolerate my beta blocker and had my first documented Torsades in the electrophysiology lab. Best place ever to have Torsades! That led to an upgrade to an ICD, genetics came back positive for LQTS type 2 and 2 of my 4 kids were genetically positive as well. I remember the moment when my world changed. I was the healthiest person I knew, running 7 minute miles and training for a half marathon, and now, I had an congenital arrhythmia that could potentially kill me and 2 of my kids at any moment. How could I go forward?  What helped was you guys, support from those that had already been there. Clearly this makes me a better doctor,  to be able to understand how it truly feels to live those worst moments, the ones where life is never the same again. I get it. And so, this blog. It is here for you. To answer the questions that keep you up at night. The ones that your kids and my kids ask at the dinner table so casually that they break your heart. Let’s answer them the best that we can, with the evidence we have from both life and literature as a doctor, a mother and a patient. We want to hear your thoughts and questions. Please post comments and questions and we will address them in blog posts based on needs assessed.