January 19, 2017
Bad things come in sets of three, though in my own experience, bad things come in sets of two-dozen.
I had a very very very long day at the clinic. I’ve got a shortcut to ‘911’ on my home screen (because that 5 seconds it takes to hit ‘phone, keypad, dial, send’ might be the difference between…whatever) and a verbal agreement with the heart guy that I’m to use that number if I feel more “off”. You know, if it’s extra difficult to breathe, if I can’t even sit up without fading, or have palpitations that don’t stop after a few seconds. I don’t know if verbal contracts are binding in this state or not. Not that it matters, because I have no intention of actually calling 911.
My primary doctor has been trying to shoo me away to the cardiologist since I dumped the heart dude when the itty bitty amount of pericardial inflammation I had resolved. Every time I see him, my heart is pounding away with the occasional gallop. He put my heart rate on a graph in my EHR and showed me that it has been trending upward (the cost of having a manchild?). “Now, go forth and conquer!” POTS is technically a benign condition, right? It’s something I have to live with and if it’s not going to kill me and there’s nothing I can do about it besides sodium and fluid loading (contraindicated when one has CKD, I might add), there’s no point in wasting anyone’s time.
My tachycardia is influenced by just about everything, from anemia to viral illnesses. When my stomach refuses to hold its contents, I get dehydrated. My heart rate skyrockets. When my asshole refuses to hold its contents, I get dehydrated. My heart rate skyrockets. When my holes are behaving and I’m otherwise well, I might go to the store or at the very least, make dinner that includes more than opening a box and throwing it in the microwave. Being on my feet makes my heart rate skyrocket. When I’m angry, yup, it goes way up then too. Anxiety? Yep. Viral infections throw my neurological system even more out of whack than normal, and seeing rates over 200bpm isn’t that uncommon. The only time my heart gets a break is when I’m asleep, and sleep is a rare bird around here.
POTS symptoms can be alarming, but I’ve learned to treat them like an annoyance rather than a threat. Almost six months of listening to the devil on my shoulder earned me an extremely tired heart. I was good about not pushing it and listening to the cues my body gave me. Then I exceeded my limit, and you know what? Nothing bad happened. At least, not immediately. It’s interesting that I assumed if I overdid it, I’d go up in a puff of smoke (fuck adrenals, who needs ’em). How the possibility of a cumulative effect of being a dumbass escaped me, I don’t know. I had other things to worry about, like making sure MC didn’t die from an infection because he was too goddamn stubborn to clean his incisions daily.
ECG and echo confirmed that I’m dealing with a bit more than a case of ‘bad’ nerves. The cardiologist informed me I have DCM (dilated cardiomyopathy) that has made my mitral valve extra leaky while also causing a transient abnormal tachyarrhythmia originating in the lower part of my heart. This might explain my…uh, heartache and that “OMG I’M GOING TO FUCKING DIE” type of feeling (not to be confused with the ‘omg, I want to fucking die’ feeling, all lower case).
What’s unclear is why, at least until I run through a gauntlet of tests. He says it’s probably a combo-deal of anemia/malnutrition (remember beriberi? sounds like a fruity kid’s cereal but is way less tasty?) and chronic tachycardia (my heart is running an ultra-marathon while being starved), but he must rule out ischemia and send some shit in for genetic testing. Then of course, there’s the possibility that we’ll never know why, aka idiopathic DCM (aka doctors are idiots). Too much Sudafed? Too much cocaine? Nah, never enough cocaine. Too many repeats of critically high potassium levels? My ECG’s in November didn’t reveal any of this crap, even if the murmur has been around since I was 19. An insignificant amount of mitral valve regurgitation. Not that big of a deal, although my cardiologist in SC wanted to shove an implantable cardiac monitor into my chest to record for six months. My response to that: “Okay, thanks…bye.” I never saw him again.
Cardiologist 3.0 started putting in the orders to have me admitted to keep tabs on the arrhythmia and start chipping away at additional testing. Nope. I’m not doing that. See above “verbal agreement”. I was prescribed amiodarone to keep the arrhythmia stable so it (hopefully) won’t precipitate into a fatal arrhythmia and was also prescribed a very low dose of extended release metoprolol that’s supposed to keep my heart rate from spiking. I haven’t taken them yet because it doesn’t make any fucking sense to me***. My BP is already low. Lower it any more along with a heart rate that’s too low to perfuse my brain at the pressure, and I’ll have to undulate across the floor like a slug to get from point A to point B (something that if recorded, could very well make me internet famous). Maybe someone smarter can explain this to me. Telling me ‘that’s how we treat it’ doesn’t help me understand, especially when my brain isn’t getting enough fucking oxygen to operate my eardrums and eyeballs.
Whatever is wrong with my heart isn’t nearly as serious as what’s wrong with my brain. I’ve hesitated to talk about this because it’s overwhelming. I’m not sure how I feel about it, or if I even believe it. It still feels like POTS, but with more gnats and chest pain. I don’t trust doctors and I don’t trust myself.
“I’m not sick, but I’m not well and I’m so hot, ’cause I’m in hell.”
***Bad idea – don’t be a dumbass like me, please. Ideally dosage would have been titrated while plugged into a mobile telemetry monitor…in a hospital. Where they can save my ass