Name: Natalie J
Which SADS condition do you have? Long QT
When were you diagnosed? August 2010
How are you treated? (Beta blocker, ICD, etc.) Beta blocker and ICD
How/when were you diagnosed?
I was diagnosed at 17 after years of syncope episodes. I would sometimes pass out multiple times a day. At the time it was thought I had idiopathic seizures. One day i told my neurologist my heart was racing before passing out. This prompted him to refer me to a cardiologist. At the cardiologist appointment I had my first EKG. I was not told the results but the doctor told my mother I need to see an electrophysiologist ASAP. I went to the EP on a Friday. At the appointment I had another EKG and a stress test. At the end of the stress test I was told I had LQT and needed an ICD. I was admitted into the hospital, started nadolol, and had an ICD implanted on Monday morning.
What has been the biggest challenge you’ve faced in living with your diagnosis?
The biggest challenge I faced was my two pregnancies. One of the only side effects of nadolol I had was growth restriction during my pregnancies. Both of my daughters were born in the 5th percentile or less. This meant a lot of extra prenatal appointments and ultrasounds. They both have LQT but are doing great on beta blockers.
What is one positive thing that has come out of your diagnosis?
I’m still alive without going into sudden cardiac arrest. I passed out more times than I can remember. Any of those times could have lead to cardiac arrest.
What encouragement or advice would you give someone who has just been diagnosed with your condition?
It’s not a death sentence! You can still live a normal, fulfilling, happy life!
What does your day-to-day life look like?
Well, I’m a stay at home mom of a 2 year old and an eight month old with a husband that works 12 hours on a good day. My days are fun and hectic! It’s a good day if I can take the kids to do a fun activity and if I can get a good workout in.
What are your favorite hobbies and activities?
I love the ocean. It’s my happy place. This is a picture of me in Maui on a snorkeling tour.