by Rachelle | Jun 15, 2018 | Connecting with others, CPVT, HCM, ICD, Long QT Syndrome, Research, Sports/Exercise, Sudden Cardiac Arrest, Timothy Syndrome, Uncategorized
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,...
by Kristie Lindblom | Jun 13, 2018 | ICD, Long QT Syndrome
Kristie Lindblom, 38, has Long QT Syndrome Type 2. She was diagnosed in 1999 at 19 years old. Her treatment includes a beta blocker, spironolactone, and an ICD. How/when were you diagnosed? I was diagnosed during my freshman year of college. I had been passing out...
by Erin McGuire Clark | Jan 23, 2018 | ICD, Long QT Syndrome, Parenting, Sudden Cardiac Arrest
WHEN PIGS FLY 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...
by Kellie Moore | Jan 13, 2018 | ICD, Long QT Syndrome, Online Patient Communities, Parenting
For Natalie Moye, what started as a basic wellness check led to a life-changing diagnosis. She was 26, and she had just given birth to her first child, Elliot, 8 weeks earlier. She wanted to lose the baby weight, so she decided to join a weight loss and healthy...
by Jon | Dec 20, 2017 | ICD, Online Patient Communities, Research
As a fast growing online patient support community with 5700+ members, my Facebook group “Living with an ICD” is attracting the attention of researchers. More and more, they discover the potential of social media to reach patients for medical studies. Unfortunately,...
by Aimmy | Aug 29, 2017 | ICD
After a few years of my initial implant of my ICD, I started to have pain in my incision. The pain started out as mild and only occur occasionally. After my first replacement in 2004, the pain started to get more moderate and it occur more frequently but I did not...
