Fear for the W 😮‍💨

1 December 2021.

I shot up out of a deep sleep in a panic, drenched in sweat. Thinking to myself, “what the hell is happening?” My chest was beating so fast, but the skipping and fluttering of my heartbeat was prevalent. Fear, I knew in my heart (pun intended) something was wrong. A year to the date had passed since my last surgery, this couldn’t be fucking happening again or was I having a bad dream? I wanted to be naive for once about my heart, just one damn time I wanted to be normal. Does the desire to be normal ever go away, not just for a day, or a few weeks, but for long enough to just get a breath fresh of air. 

I’m 33 & all I’m craving is for normalcy & I don’t even know what the hell that consist of? Had separated, being a parent, stressed, over stimulated, realizing who my real friends were (are), so many acquaintances, student loan debt, understanding my new self, navigating a situationship, fuckgirl (depended on who you asked), homeowner, & realistically just trying to live. Is this the new normal, because normal felt like it was ripped away from me 5 years ago when this disease started controlling my life. 

Fuck, one thing I’ve learned throughout this adventure is procrastinating anything related to your health is a HARD NO. Panicked and scared, I immediately reached out to my surgeon explaining my heart was beating uncontrollably and it wouldn’t stop. Transmissions is this device that resembles a remote and it’s held over top of your heart and you watch this screen that seems like it’s in the Flintstone era to complete a transfer of data and then place the remote back down. It takes all the data that’s in my current ICD (internal cardiac device, pacemaker/defibrillator) and transmits it for my physician to view. 

Tossing and turning, struggling to fall back to sleep until I finally had given up. 

It’s shortly past 9 and Dr. Genius calls, “Jess, I’ve reviewed everything and nothing is coming from your ventricles. Are you sure you haven’t done anything abnormal or out of routine? Is this the first time since your surgery at UPENN (University at Pennsylvania?)

“My brain was shit, but yeah I hadn’t recalled any other events. I’ll keep paying attention and I’ll contact if it happens again.” I said, 

What the hell. I know what I was feeling was valid and I know he wasn’t trying to medically gaslight me, but I don’t understand why it wasn’t showing on my transmissions. Not feeling well and not understanding what the hell is happening to your body and not getting answers is probably one of the worst and most frustrating feelings.

Unfortunately, there truly are providers out there that medically gaslight patients, even though I knew this wasn’t happening in this moment I still wasn’t understanding why it wasn’t reflecting on my device. If there’s anything that you take from this blog other than listen to your body, it’s to never accept medical gaslighting.

Confused and irritated. Fucking weak, tired, and just overall drained I had no other option than to continue on about my day. Thinking to myself, am I being paranoid and overthinking, delusional? Maybe it’s a virus, Covid possibly? There’s no fucking way, I know my body better than that. Don’t I? A few days pass and I can hear the gym calling my name.  Mid-lift & my heart starts fluttering again. My chest felt like it was clenching up and I was continuously gasping for air. I started checking my pulse. Why the hell was my pulse reading substantially low. When I say low, I’m meaning my pulse was in the low 30’s.

What in the hell is happening? Why, why the hell is this happening? The aggravation was setting in. Now I know I’m not crazy because although I am in the middle of a work out this isn’t something that commonly happens, nor is it something that I’ve experienced in the past. 

Again I reached out to Dr. Genius & submitted my transmissions….I needed answers. I felt scared. I  knew something was wrong, but why wasn’t it showing on my transmissions. 

Throughout my medical journey, mind over matter was always my go to until 2022 happened (different story, different post).

Dr. Genius’s name is flashing on my phone and my body froze. 

“Jess there’s still nothing on the transmissions but at this point, I’m concerned that it’s not in your ventricles, but your atriums.” Dr. Genius had said. 

Mind-blown.  “What the fuck” I mutter. 

Dr. Genius continues to say, Can you come in today so we can get a more in depth idea on what’s happening.” 

I pause, still mind-blown, but quickly say, “I’ll see you this afternoon.” Thinking to myself what the hell, why the fuck can’t my heart just get its shit together. A year, a solid year in with minimal arrhythmias but my gut was telling me something was different this time. In that moment defeat consumed me, even with as much optimism as I try to posses over my disease and life choices. It’s now been five years and when we finally think we’re going right with my heart, we immediately get hit with a quick left. Stress and fear consumed me.

A 45 minute drive felt never ending.

“Valet, yes!” Thankfully, because whatever was now occurring was limiting my ability to walk the distance from the parking garage to the office, although it was less than a tenth of a mile.

The valet gentleman approached my car, “Mam, are you here for an appointment?”

“Unfortunately” I manage with a small crack of a small and a little bit of a fake laugh as my daughters would call it. 

“I’ll keep your car upfront. When you’re done, come to me directly to get your keys” the valet gentlemen states. 

“Thank you” I say as I squeeze pass him in order to get out of the car.

Here we go, I remember thinking to myself & just trying to take in a few deep breaths before I made it up to that 3rd floor. My stomach was in knots & the fear consumed me…..

The news shattered me, yet again, but I made a promise to myself I’ll remain being the best patient I can; my kids need me I’d always say.

The ekg showed so much more & something new & different nothing similar to the past….