Saturday, February 27, 2021

The Not-Talked-About Heart Issue We Should Talk About

What I see when I get dizzy and
lower my head...

   Let me start by saying I'm really a very private person. That might sound odd for a novelist, but sharing my thoughts, ideas, and opinions is a very different thing than sharing ME. I mean, sharing personal stuff, like health stuff. I don't, really. It's generally not professional, but beyond that, it's intrusive. Thoughts and opinions are things I've learned and experienced. It's different. It can change over time (and should). It's fluid. It's meant to be shared. My health is personal.

Other than that, I don't like to hear details about people's health issues ad nauseum. I don't. Not because I'm callous, but because I'm intuitive/sensitive and I prefer not to focus on things that can go wrong.

However, in recent years, I've learned I have had a health issue likely all of my life that I didn't know about. It involves the heart. After being diagnosed after a medication sent me to the ER with severe long-lasting palpitations where the nurse who seemed very disinterested asked if maybe I was having a panic attack and treated me like I was wasting her time, my doctor, at the follow-up, actually looked at the EKG results enough to find the problem:

Long QT Syndrome

Have you heard of it? Probably not. It's an electrical issue with the heart where it takes longer to recover between beats than it should. Research I found calls it rare, but I tend to think it's less rare than it is undetected. There are two types: Inherited and Acquired. Acquired LQTS is generally brought on by medications, and when the meds stop and time passes, it heals. With any luck, it doesn't cause a heart attack first. Inherited LQTS does not heal. It's life-long. Many never know they have it. 

The first symptom is often death.

Read that again: the FIRST symptom is often death. 

Back when I was in school PE class and we were all forced to run a mile around the track on a semi-regular basis, I always ended up walking in between. Because it hurt my chest. It hurt enough to be scary. So fine, I was marked as lazy or too out of shape or whatever, when really, I wasn't too terribly out of shape, considering. I grew up in dance. I bicycled a lot. I walked a lot. I swam. I played softball. However, I could not run any distance at all. And no one gave a thought about figuring out why I shouldn't be able to.

You know all of those otherwise healthy young athletes who suddenly die of heart attacks and no one ever knows why? I'm no doctor, but I have a strong educated opinion on that.

So what I want to know is: WHY do we not hear about it? Why are athletes not screened for it? It causes death. In young people. Not many, thankfully, but unnecessarily. My stubbornness to not give in and run when I knew I shouldn't turned out to be a good thing.

In the past two and a half years, I've been doing walking challenges, trying to stay fit and healthy. They're meant to be running challenges, but I don't run. I hate to run. Always have. However, last summer I thought maybe I'd worked up enough to give it another try. Slowly, I worked up to a 17.3 minute mile by mostly walking but running some in between. And for about a week afterward, I was sidelined. It hurt. And it was scary. I think I might have liked to run if I could, but thankfully, this thing was discovered, albeit rather embarrassingly, and so I walk.

And I avoid strong meds. I avoid too much caffeine. I drink plenty of water. I add a bit of potassium when I think I should (research this on your own, but when I was in the ER, they gave me potassium because it was very low and it worked well). I don't push workouts too hard. I also did the medic bracelet thing to alert anyone who needs to know not to give me Zithromax (a very big no, no for LQTS, apparently) or other high-risk drugs. I let a very small circle of people know in case they needed to know.

But it saddens me that this is not being talked about. February is heart health month and the whole focus is on cardiovascular disease, which everyone is well aware of already. It's important, since heart disease is America's number one killer. I'm glad it's highlighted. However, other heart issues also need to be highlighted. So, at the end of heart health month, I decided to break my personal silence. I'm good. I'm taking care of it. I'm body intuitive so I know when to back off, etc. I just really want to make more people aware of it so they can find out how to deal with it.

Awareness matters. We have awareness months and days for everything under the sun, most of which most of us are all very aware of. Maybe we could start concentrating just a bit more on things we aren't so aware of.

If you know a young person, or not-so-young person, who talks about their chest hurting with exertion, or who gets dizzy upon standing, or who faints for no obvious reason, don't ignore it. It's a very easy check by EKG. And it's easy enough to work with if you KNOW what you're working with. 

Do the research. You can start here (I had to search for it on the site):


CAVEAT: I am NOT a medical professional or anything close to that. This is not medical advice. This is a plea to be aware of Long QT Syndrome with a bit of opinion mixed in. I am a novelist, after all. 

Now returning to my irregularly scheduled writing and life related posts.


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