So you’re going to the Mayo Clinic…

by Rachelle C. Seeing the doctor is always stressful. It’s even more so when you’re from out of state (like me) or even out of country. It can be very overwhelming. I admin a group and we get a lot of questions from people asking what it’s like, where to stay, where...

Why I’m At Peace With Giving A Beta Blocker To My Baby

By: Kellie M. When I was pregnant with my daughter, I knew there was a chance she would have Long QT Syndrome. I have it, both of my siblings have it, and my mom has it. So do my grandma and some of her siblings. For us, Long QT Syndrome is a normal part of life. So...

Our Journey of Uncertainty and Hope

My name is Angela and I am married with two children ages 2-1/2 and 6 months. Our journey through serious medical uncertainty started when I got pregnant with my 2-1/2 year old son, Azariah. From the onset of my pregnancy things became complicated. At my antimony scan...

Abbreviations commonly used in cardiology

A list of abbreviations commonly used in cardiology DFT- Defibrillation threshold testing VT- Ventricular tachycardia VF- Ventricular fibrillation AF- Atrial fibrillation EKG/ECG- Electrocardiogram PVC- Premature Ventricular Contraction PAC- Premature Atrial...

One Long QT Journey

By: Jett H. My experience with Long QT Syndrome began at about age 7, or at least I think it did. One of the funny things about this condition is you don’t know for sure if it caused you to lose consciousness if you don’t have an EKG or some other kind of heart...