The worst thing about having a reasonably rare genetic heart condition is that it's often difficult to find other people to go "hey, is this normal" to, when your EP tends to focus on the clinical presentation rather than symptom management.

The second worst thing is going from having all the energy in the world, to having none and feeling really, really bad.

Yes, I'm in that second phase right now, and work isn't done for the day. Yes, it's my usual Friday exhaustion trough, exacerbated by being AuDHD.

But... I ... am wording bad right now. #chronicIllness #heart #health #LongQT

I found this last weekend when tidying. It’s my first #ILR implanted loop recorder, something which failed to detect my #LongQT

I have a smaller one now. It’s still there, in my chest, but it’s dead. It also failed to diagnose me, but a stress test off meds did!

That used to be in me!

So, time for another #LongQT post.

I’m lucky. Mine is kept in check with meds. Today though, My heart is very unhappy. Got shakes, PVCs and weird palpitations.

Good news! After a second visit to the doctor, and her checking out my still infected ear, we’ve got a path for a different medication to try* and I had my ear (which was clear on Tuesday) flushed out.

My ear drum is still angry, but less angry than it was, and I can now hear much better than I could with all the infectious gunk cleared out.

But here’s the thing. That new medication? The only one that’s really safe for me to have because of my having #LongQT? It’s nearly $200 AFTER a discount code AND factoring in insurance.

We have an HSA. I’m good. We can afford this one drug this one time.

But holy mother of frick does this highlight, yet again, that #LateStageCapitalism will fuck with your health at every turn to make a quick buck for some rich ass bastard in a guilded room somewhere.

Essentially, my having a genetic condition means that some big Pharma CEO can have the another pound of Wagyu beef with their lunchtime dinner date.

#UniversalHealthcareNow #EatTheRich

Pretty sure I’ve lost more hearing overnight. My late sister was profoundly deaf and I can’t imagine how scary it was for her to become deaf as a young child… But now I understand a little more than I did.

Luckily for me, this is just an ear infection.

I’m also pleased to report that my body has adjusted to the first dose of antibiotics, so here’s hoping that continues and I don’t spend all day in the bathroom as the medicine warns I might. Because honestly, as someone with #LongQT, that’s darned dangerous for me, too.

#HearingLoss

It’s official: after five years, my Borg implant (my implanted Loop Recorder) is going low power.

Because I’ve been diagnosed with #LongQT I don’t need another one, and they’ve said I can keep this one in me with no worry.

Unless I suffer a cardiac arrest or need pacing, hopefully this is the last implanted device. Given that neither my mum nor my late sister had their implanted devices until later in life, I’m not going to say never…

The good thing? The meds, while they have some nasty side effects, keep me alive* :) no shocking required!

*Not so long ago, a diagnosis of #lqts meant you got an implanted defibrillator as a routine matter. Then cardiologists realized most people don’t ever use them, so they ONLY give you one now if you have a cardiac arrest caused by the condition… I know.. It’s weird. It’s why I carry an #AED when traveling, and why I can’t work out alone… or swim.

My brain: “Now Nikki, you could do some cycling after work today on Peloton as we haven’t ridden for a few days!”

My legs: “Yes yes yes!”

My heart: “ahem… do you remember the LAST time we tried to work out in the evening and you were alone? I went up to 230 without any problems!”

My Brain: “Well, shit….”

TLDR: my heart is too unpredictable in the evening to safely work out alone. It’s fine in the AM but… by evening (when I take my beta blockers) all bets are off.

Bugger it. I was really getting hyped up.

#LongQT #Health #fitness #Peloton