Monthly Archives: November 2015

Not quite dead yet…

…depending on your definition, that is. I’m still here, above ground, and I still have a pulse…most times, at least.

So here’s a rundown of the last few months. The meds were working, and then not so much. I could feel it; the increasing fatigue and the slight but familiar fogginess in my head. I remembered this feeling, but I hoped it was just a busy haul-out season in the massive marina where I’m dock-master. Once things started to slow down I’d get more rest and feel better. At least that’s what I told myself.

Things did slow down, but so did I. I was still exhausted, far more than I wanted to admit. I was getting dizzy, not bad, but enough to give me the uneasy sense things weren’t quite right. I saw my cardiologist, we reviewed my meds and he ordered some tests. The following day I had an episode, the first since last winter and ranking right up there in the top ten worst ever.

What’s an episode? That’s what it’s called when I’m symptomatic, yet another fancy term for the debilitating waves of pain that radiate through my core (something to do with the whole vassal-vagal reflex,) while my blood pressure does a nosedive, depriving my brain of fresh oxygen, resulting in degrees of consciousness ranging from:

DEFCON 5: I feel like sh!t for a minute or five, but it gradually subsides, leaving behind a general uneasiness and a sense that I’d dodged a bullet. But my body was firing warning shots, and I’d be on alert for a while to follow. Or it continues, which brings us to:

DEFCON 4: It’s not passing. It’s getting worse, but still under control. I’m still able to stand and speak, but I feel it coming. It could still pass, or not. Now’s the time to start seeking a safe place to ride this out, and go into defense mode if at all possible. I’d tuck myself in a tight ball — ‘crash-position’, I called it, but it seemed to help in some weird way. Turns out it wasn’t just me curling into fetal position — it helped to compress everything and raise my blood pressure.

DEFCON 3, aka: Semi-Zombie Mode: Still walking and talking, but not so good. I’m feeling queasy, starting to sweat, sounds are amplified, my ears are starting to buzz, and gravity has abruptly doubled.  I must must must sit/lay down or I know I’ll fall. Observers tend to believe I’m drunk/stoned as I stagger to a gravity-neutral spot, preferably as far from moving traffic as I can get.

DEFCON 2, aka: Zombie Down: The dreaded, most dreadful phase. By this point I’m going down, voluntarily or not. I’m horribly nauseous, burning up, sweating, and shivering all at once. Brains…I need brains. Or at least my own brain, but that’s already starving for blood flow and the less critical functions are the first to go. Walking is no longer an option, even hold my head up seems impossible within the super-amplified gravity pulling me down. Speech is impossible; it’s too much effort to even mumble my slurred, barely audible words. My husband has learned to ask ‘yes/no’ questions that require no more than one knock or two as reply. Zombie Down is awful; the blurring/dizzy/slurring to ears-ringing/blackness-getting-darker/I-feel-like-I’m-dying-but-can’t-move-or-speak-oh-god-let-this-pass terror. My consciousness slipping away from me. It feels as though my heart’s stopped, and I’m dying, each and every time. It’s terrifying, not knowing if this is the time everything will go black and stay that way. You’d think after enough years I’d get used to it, but trust me, I haven’t.

And last, but certainly not least, there’s good ol’ DEFCON 1: Actually, DEFCON 1 ain’t so bad, at least for me. Once I’ve reached that point, I’m unconscious, down for the count, feeling no pain, or much of anything else for that matter. Coming around, on the other hand, sucks. Now I get to ride the same roller coaster, just in reverse. Back through DEFCON 2, then 3, and so on. I’m still dizzy and disoriented as blood flow and oxygen return to my brain, rebooting me into fresh confusion. I’ve woken alone, having only the wall and bathroom sink to break my fall; other times I’ve woken to frightened, worried faces, and I’ve woken to plenty of bumps and bruises. Zero memory of what happened, or how I wound up face down on the floor, or collapsed while I was crossing a road, or numerous other occasions. DEFCON 1 tends to upset onlookers the most. Well meaning bystanders prop me up, or quickly try to get me to my feet, which essentially pushes the ‘repeat’ button, and down I go again.

Before going on Fludrocortisone, those episodes in one degree or another had been a fact of life, and had been worsening for years. On Fludro, I’d gotten my life back. I could drive again, function like a normal human being, even find myself as dock-master at a large marina, which often had me walking  3-5 miles a day. I’d never felt better, and the episodes were nothing but a bad memory…until a few weeks ago. There I was, minding my own business, when I got hit by a full-on, high-speed DEFCON 2. No warning, nothing gradual. In seconds I’d gone from perfectly fine to May-Day-May-day-I’m-going-down-fast. That same sickening, heart-stopping, dying feeling I remembered only too well. I braced myself in a corner, slumping over the counter beside me for support, and it was over as fast as it hit, though it left me physically weak and mentally rattled. I really thought I’d put that b.s. behind me. Hours later, half-way into driving home, I pulled over and called for backup while I sat on the floor in the local Acme, wishing who-ever the hell was in the bathroom would get out so I could splash my face with cold water. That seems to help.

I was certain things were getting worse, and a worried call from my cardiologist soon confirmed my concerns. The implanted loop recorder, aka: my ‘Booby Black Box,’ which until this point had done nothing more than chafe inside my bra, recorded my heart ‘pausing’ for four seconds at the very time I’d had my episode. Not beating, not in any way that kept any blood pressure.

Image.#1: Can you spot what’s wrong in this picture?Screen Shot 2015-11-29 at 4.04.50 PM.png

Imagine a Wacky Waving Inflatable Arm Flailing Tube Man, flapping merrily away until someone shuts the fan. No air/blood pressure = no wacky waving, or much else for that matter.

Looking at the printout of my pretty damned flatlined pulse (Yeah, I know technically those feeble blips mean some part of it was trying to keep the beat) all I could think was, “I told you so!” I’d been insisting something was wrong for too many years. I’ll never forget standing in a cardiologist’s office 27 years ago with my then infant daughter in my arms, telling the doctor I was weak, dizzy, prone to fainting, and certain my heart was stopping at times. I was assured it was nothing of the sort, I was a perfectly fit and healthy young woman. I was suffering from anxiety, he diagnosed, something easily remedied with the right mental therapy and medications. I had anxiety alright…anxiety that I’d pass out with my baby in my arms and hurt one or both of us. But I digress, which I’m prone to doing these days. It’s hard to stay focused when your brain isn’t getting enough fresh blood. I’m cutting my neurons some slack; after all, they need oxygen to keep those trains of though on track.

Annnnyhoo…back under observation I went, waiting (hoping) to see if it was just a single, isolated event, or something more. It wasn’t a long wait, and the next episode was bad, though certainly not my worst, a classic Defcon 2, the blackness washing over me, almost, but not entirely taking me down. The Black Box recorded 7 seconds of ‘pause.’ No heartbeat. No pulse. Nothing. Nada. Zip. Only seven seconds of I’d term as a pretty damned flat looking line. Those episodes I’d been having for years, that dreadful dying feeling, THIS was what it looked like.  That sensation of my heart ceasing to beat, my blood pressure plummeting and my whole body shutting down — was exactly what I’d always believed — and exactly what had been dismissed for decades.This wasn’t mental, this wasn’t emotional. And just how many times has my heart stopped over the years? According to the Black Box, it’s paused nine times in the last few weeks. If 7 seconds translates into DEFCON 2, just how long do I go without a heartbeat to reach DEFCON 1? Did I really want to find out?

Image #2: I call this one ‘Vindication.’ My daughter’s BF declared it proof that I can’t be killed — my heart just restarts. I’m going with that. Just so long as it keeps restarting, I mean.

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But there it was. Undeniable proof I’ve what I’d said for years. My slow-idling heart WAS stopping. I’d often joked were the zombie apocalypse to hit, while I’d be hard pressed to outrun even the slowest of the staggering, incoherent, dull-witted corpses, I’d be safe —with my sluggish pulse and absurdly low blood pressure, they’d just think I was one of them. My doctors, however, were taking this matter a bit more seriously. (Trust me, so am I. Sick jokes are simply my preferred way of dealing with reality.) And so, in honor of my new high score, I was informed I’m getting awarded a PRIZE!

Yes, friends, it’s… a NEW PACEMAKER!

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(Technically that’s an OLD Pacemaker, but a fine one indeed. Unfortunately, I suspect that’s not covered by Blue Cross.) No, the Pacemaker I speak of looks a bit more like this:

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(Individual models may vary. I want one I can download music onto, if that’s an option.)

So there you have it. In eight days I’m going in for my new high tech electronic distributor (I’m gonna call it ‘Sparky’) to keep my heart (aka ‘Skippy’) company and keep up the beat. I’ll be getting one bitchin’ cool scar, I’ll be able to set off store security alarms, and according to the warnings I should keep power tools such as circular saws at least six inches from my implant/heart region. Implant or not, I’d say that’s just common sense, but warnings exist because someone out there had to be told. And with my new high-tech cyber/bio heart, I’ll be downright unstoppable – or at least that’s what I’m hoping. Either way, I’m practicing my diabolical laugh, and putting every moment of down-time into this novel I was desperately trying to finish up.