The evening took a sudden turn

Well, it’s happened again.  And, once again, I’ll share my story with you.  You can check out the previous iterations here and here (there was another episode in January 2015 that apparently I did not post about in detail on this site).

First, I have to say that 2016 has been a beast full of personal tests – not the smallest of which is continuing exhaustion and other symptoms related to PVCs.

I’ve had to take a temporary step back from Storychick – and that’s why no posts since February.

But 2016 also is a year of reckoning and not just taking back, but seizing, the reins.  I’ve gone through several second opinions to land with a physician in Boston who actually has seen my condition before.  Hopefully, and with luck, we’ll end this all soon.

Back to the story.

The other night, Joel and I were putting together a rough, late supper.  As I picked up the box of frozen pizza to open it, I felt exhaustion start to pull at my head – much like someone yoinking at a chunk of my hair above my left ear.  I told Joel I’d need to sit. He took over the pizza while I sat on the floor with my back against the gumwood doorframe.

We were talking about some political stuff I had heard on the radio while out running errands and getting the pizza.

My head started to spin, not like being dizzy after dancing in circles, but a deeper, scarier spin that I had felt before.  The last time my  response was “Not good. Not good.”. This time, all I could say to convey to Joel that danger was here, right now, at this moment as we talked politics and prepped frozen pizza, was “Oh, my god.” Three times I said it.

A chrysanthemum firework flashed at the back of my eyelids. An intense metal sound filled my ears.  As if someone was playing a really nasty chord and I was standing in front of a mega-amplifier.

Then I was in a 60’s sitcom kitchen – perfectly perfect in black & white.  The politicians we had been discussing were also there, wearing frilly, flowered half-aprons.

Just as quickly, my eyes opened.  I was now on my back on the kitchen floor – my elbows glued to my sides and my forearms finishing a flail.  I kicked a cat food bowl.  Joel stood over me, phone to ear, asking what had happened.

“How did I get here?” I thought. “Why am I on the kitchen floor? When did Joel get on the phone?  Who is he talking to?  What’s up with the pizza?”

Those first moments are so confusing.  When I passed out in the shower in January, 2015, I had to piece together where I was: “White. … Porcelain. … Bathroom. … Shower.” Much the same this time (realizing it was MY kitchen took a moment).

ecg_hypokalaemia_torsades
 

This is not my heart, but a bit like what I saw- an example of Toursades de Pointes – the freakout.

 

My heart had gone into freakout mode.  Actually, there was a bad beat, a PVC, followed by a bit of a pause, and then the freakout – 300+ non-productive beats a minute – the EKG read from my defibrillator looks like an angry scribble.  Once again, my bionic device brought me back. Saved me.

My heart tried to freak out a couple more times before I got to the Emergency Room, but each time righted itself before I passed out, before the defibrillator needed to fire.  The thing is, my battery needs replacing, and if it HAD needed to fire again – it might not have been recharged in time.

In a little over a week, I head to Boston to have multiple steps taken – another ablation to reduce or eliminate the bad beats, a new battery, and a new atrial lead – this 2nd line from my defibrillator into my heart might be able to right things in that small pause – before a freakout can occur.

I find myself spending my time trying to be supercognizant of what I’m feeling – wary of any start to the head-spinning that is the first indicator of blood not getting where it should.   And I think about those moments – from that first bit of spinning to opening my eyes confused.  I need people to understand what this is like, to hear this story and try to put themselves in this place.

Heart rhythm disorders aren’t as easy for people to identify with, to understand, as heart disease.  And after trying to find doctors who understood my PVC-triggered Ventricular Fibrillation (and were able to name it), I know how unlikely it will be to find someone in my same shoes. So I share my story.  In hopes that it can help you understand what is happening.  For you to know what it is that scares me and makes me soak in the wonder of life as much as I can.

And I wonder – have others, who have emerged from the edge themselves (even if driven there by different issues), marked these moments?

This “dream state” seemed very related to what had happened immediately before – but the last time I saw flashes of bombs and explosions and doom.  Why THOSE images?  Is that common?

I tried a search at the library.  But “near-death experiences” gives you the stories of those who technically died and came back.  And I’m not sure what to call almost dying, but not quite.

I want to explore this further – to search for such stories.  It’s something just starting, but I’m hoping a collection of these will add great perspective for those who don’t have to go through it themselves.

*I’m posting this now, and plan to tell the story on ROC Soup, in a pre-recorded broadcast for October 1st (10am), while I recover from the Boston procedures. You can listen at WAYO 104.3FM in Rochester, at wayofm.org, or via the Tune In app.*

Do you know anyone who has a story like this, or has been through an experience where they were lost and came back to reality? Please let me know, I’d love to talk to them – you can comment or email.

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