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.
Doctor, patient and mother
by kymera_editor | Jan 20, 2017 | Uncategorized | 1 comment
I am at the beginning of diagnosis and extremely scared. I have my EP appointment today as they found a long QT interval on one of my EKGs and now I am petrified. I am 46 years old and have lived with Mitral Valve Prolapse my whole life, but just a mild regergitation. What worries me is that my dad died at 42 of a massive heart attack. They said it was from a bad valve that needed to be replaced but now I am thinking maybe he had this long qt syndrome and now I have it. I have 3 children 2 adopted so they won’t be affected, but my youngest who is 6 is my biological daughter so I am extremely scared for her. I have never passed out or had a seizure in my life. I am so scared and confused right now much more for my little girl then for me. It is just not fair. I suffer from anxiety since I was diagnosed with uterine cancer 5 years ago and I have been doing really well since then. Just need to get answers and someone to talk to and to understand. Can you live a long normal life with this condition?