Name: Heather Whitehurst
When was your SCA? September 26, 2015
Which SADS condition do you have? LQTS
How are you treated? Beta blocker, ICD, paced to not go below 60bpm to help prevent arrhythmia as lower heart rates are a known trigger for me, avoiding meds on the CredibleMeds list unless benefit outweighs risk
Can you tell us about your Sudden Cardiac Arrest (SCA)?
I had just woken up from a late day nap as I wasn’t feeling good and was making a cup of coffee before I did my night-time routine with my kids (who were 6 & 8 at the time). As my coffee was brewing, I was trying to read a text on my phone and couldn’t focus my eyes to read it and for a brief moment, I felt short of breath and severely dizzy. That’s the last thing I remember.
Luckily, my kids heard me collapse because when I collapsed, I kicked the pots and pans cabinet which made lots of noise and my head slammed against a kitchen table chair.
When I didn’t respond to my kids asking from their beds if I was ok, they got out of bed to check on me. When they couldn’t wake me up and saw that my lips were blue, they ran outside to get my husband/their father who was sitting on the front porch.
My husband immediately started CPR as he was dialing 911. There’s a fire station less than a mile from our house and they got to my house within minutes so I was only down for about 5 minutes. Once at the hospital, I had 2 more SCAs.
Did you have any warning signs of having a SADS condition before your SCA?
Yes, I did. I had over a dozen episodes of suddenly passing out, none of which was during activity. I sought out care for all but 2 of them, at the ER.
I had ECGs each time in which I was told that my heart was “perfect” even though a prolonged QT was noted and several times it was recommended I be evaluated for Long QT Syndrome (LQTS).
I was never told about it and the ER doctors noted in my record that my QTc wasn’t “long enough to be a concern”. Instead I was misdiagnosed with vasovagal faint, anxiety and/or stress.
The 2 episodes of passing out that I didn’t seek care for occurred a couple of weeks before my SCA and occurred back-to-back. I passed out, came to and immediately passed out again with coming to feeling like my body was vibrating (suspected seizure). I didn’t seek care because every time that I sought care previously, it was shrugged off as nothing to be concerned about.
What has been the biggest challenge you’ve faced as a SCA survivor and/or living with your diagnosis?
Medical professionals not understanding LQTS and/or not taking it seriously and also being chastised for being an informed/educated patient.
Being a SCA survivor, I’ve struggled with memory issues caused by anoxic brain injury and learning to accept the new “me”. One thing that has made being a SCA survivor even more frustrating, is the total lack of after-care unless I demanded it and the lack of research about SCA survivors/survival.
What is one positive thing that has come out of your SCA/diagnosis?
Meeting some pretty awesome people thru social media support groups and recently at the SADS Conference in Atlanta.
What encouragement or advice would you give someone who has just survived a SCA or been diagnosed with your condition?
Educate yourself about your condition!! Ask plenty of questions!! Find support!! Patients CAN live a “normal” life with LQTS. It’s definitely a scary condition but diagnosis and proper treatment prevents the worst from occurring and allows that “normal” life to be lived!!
What does your day-to-day life look like?
Like it did prior to my diagnosis except I pay a lot more attention to the “little things” and I forget where I had put my coffee more, LOL.
What are your favorite hobbies and activities?
Hanging out with my family and friends. Supporting others. Watching my kids grow. Collecting dolphin figurines. Starting projects that I somehow never finish!
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