Sometimes normal life involves taunting my dogs with donuts on a Sunday morning
Sometimes normal life involves having coffee in a hospital after having an ICD pocket revision.
I remember the day I got married. It was hot and the tulle of my dress was scratchy against my legs. Our vows said “until our days on this earth are over” rather than the traditional “until death do us part.” Little did I know just how wise this choice of words would turn out to be.
In the months after our wedding, people would ask “how’s married life?” I never understood this question. I usually replied “it’s like normal life, except I am married now.” Some people would laugh at this response. Others would act as if I was being sarcastic and not answering the question. I was though! My entire life didn’t change when I got married. Some things changed, sure. But a lot remained the same.
Same could be said about life with Long QT Syndrome (LQTS). It’s like normal life, except with LQTS.
I don’t remember the day I was diagnosed with Long QT Syndrome (or a very long time after). I was 24 years old, and was in a hospital in my home state of Indiana. I’m not actually sure if the diagnosis was made while I was in a hypothermic coma or after. I was diagnosed with congenital LQTS after surviving an out of hospital sudden cardiac arrest (SCA).
How I was diagnosed is not the ideal way to be diagnosed, but it’s certainly not the worst. I was incredibly lucky to have survived with the outcome I have had. I had a recovery ahead, one that’s difficult to quantify. I walked out of the hospital a week after after arriving by ambulance, was mostly OK by a few months after, and then continued to work out the kinks over the next few years. I did not retain many memories from this period. Nonetheless, I adjusted to life with an implantable cardioverter defibrillator (ICD). I adjusted to life with a LQTS diagnosis. I adjusted to this new slightly different version of me.
Today, I am a 32 year old who lives a normal life. Well, as normal as life can be with a genetic heart rhythm condition and an ICD and a portion of my twenties absent from my memory.
In the 7 years since my diagnosis, I have had 2 ICD shocks. One was appropriate (‘lifesaving’) and one was inappropriate (not ‘lifesaving’). I have had genetic testing (positive for LQT2) and provided that information to family, so they could be tested. I have had a complication of my ICD that caused me to be in pain and eventually prompted a premature replacement of the generator and a revision of the pocket in my chest. I’ve had lots of medical appts. These things aren’t exactly normal, I suppose. Most of my peers don’t deal with these things.
I’ve tried to wear this patient hat with grace and style, and I’ve tried to make it as fun as possible. I’ve been involved in advocacy efforts and learned everything I could about my new reality. I’ve made some friends along the way. I’ve attended conferences and taken road trips and ran a half marathon. I found my tribe, my peers who DO deal with things like cardiology appts and ICD shocks and all these not quite normal things I have to deal with sometimes. This has been my silver lining.
I don’t know what my life would have been like if I didn’t have LQTS. This alternate reality is not something I think about often. I used to. I used to imagine what it would be like to wake up one morning and find out this has all been a bad dream. Though perhaps wishing away this reality was wishing away the good stuff too. And there has been a lot of good stuff in my life the last 7 years.
I was lucky. My life went on. It will likely keep going on for a very long time, now that I am diagnosed and properly treated. When I think of my future, I imagine a whole lot of normal stuff with some of that not-so-normal-heart-patient stuff thrown in the mix.
After 13 years of marriage, now if someone asked me “how’s married life?” I’d probably think that was a strange question. It’s just life. No, it’s just a part of my life. Thankfully I have learned more social graces in the last 13 years, so I would probably just smile and say “life is good.”
After 7 years of living with LQTS, my answer for life with LQTS would be the same.