Thank you so much I really appreciate it! I've had it for a little over a year. It's interesting to learn about but annoying at times to have crammed in your side. Clothing often irritates it and squeezes my ICD more into my ribcage. Other than that I've been lucky enough to not get shocked yet.

Thanks for tagging me @lisalucier. Hi @cheymallery, I would like to add my welcome with Lisa's. My daughter has Long QT syndrome also and had a subcutaneous ICD implanted at Mayo Clinic a few years back. She had multiple episodes of the ICD triggering when it should not have and it was quite scary for her -- knocked her off her feet. They made some software/programming type adjustments but it still triggered with false positives. She finally made the decision to have it removed and not go back on beta blockers which caused other problems for her. With much back and forth with her doctor, she decided to go with their recommendation for a pacemaker a couple of years ago and it has worked well for her. From what she has told me is that there are several types of Long QT and I'm not able to remember which one she has. I do remember her having the same comments that you stated about clothing sometimes squeezing the ICD into her ribcage. I'm glad that your ICD is working well for you.

John

In 2015 my daughter had an electrolyte imbalance from being sick with the flu, her magnesium and potassium levels depleted, she went into Vtach, she has 4 heart defects from birth and is on her 5th pacemaker, so going into Vtach was really surprising, she was air lifted to our LG hospital, and air lifted again to Boston Children's Hospital, she has a subcutaneous iced for long at, it is between her skin and muscles under her arm, it is much too big for her 95 on frame, and is knocking her shoulders off, she wants it out, she said she would rather live 4 months of quality life than 4 yrs, of pain

My daughters ICD has shocked her 13 times after a doctor gave her tamiflu for a severe cold, created rhythm problems, she wants the pacemaker/defib all in one unit.

Hello @suebe, Welcome to Connect. Thank you for sharing about your daughter's struggle with the S-ICD. I can relate to your situation. My daughter was pretty much the same with the ICD when she kept getting shocked. She just wanted it out and didn't care. The beta blockers had an adverse affect on her so she also wasn't going to go back on them. She was ready to just go back to the way it was before the S-ICD implant even though I wasn't happy about it nor was her doctor. He finally convinced her to go with the pacemaker. She didn't want to go with the one with defibrillator because she was afraid of getting shocked again.

John

Hello@Lisa Lucier, I had prolonged QT-interval, it is drug-related, while on Cardarone (100mg on alternate days) with only asymptomatic bradycardia, for 4-5 years. Recently, it has been stopped. My indication was multiple PVCs on EKG. The there is no ventricular atypia,
and HR/PR=50-60/min. I am also on Carvedilol 10mg, for stabilizing BP, at 140/70, so bradycardia is continuing(for 2 years).Thanks for
an interesting post.