a medical degree in fashion from france 

Over the weekend, I passed my two year anniversary of that time I almost died all over the place.  

I actually didn’t give it a single thought until it popped up on my Facebook feed as a memory I might want to revisit (thanks .. ?), which is actually kind of excellent. I mean, I’m not totally fixed yet – I’m still taking 85 pills a day (aka 7, three of which are not even related to my heart) and experiencing an occasional side effect or two – but my forgetting the Incident means that my health continues to be so much better that I have the luxury of not dwelling on it. Does that make sense? It does to me, but I have a headache and words don’t make sense anymore, so ymmv. 

I continue to be grateful and hashtag blessed that my life not only continues, but is filled with so much fun and ridiculousness that a lesser Kimli could literally not even. 

the amount of pleased i am is the precise amount this carved ivory baby is not.

update my heart

I’m still alive!

After a battery of tests last Thursday, I had an appointment this morning to go over the results. There were a lot of complicated words and assurances that my liver has not fallen out (more on that later), but the bottom line is that my heart is operating at 35%.

As terrifying as that sounds, it’s actually an improvement! When I dragged my half-dead ass into the ER, I was actually much closer to three-quarters-dead: my heart was operating at 20%. The drugs I’ve been taking and my steadfast, noble refusal to run any marathons no matter how tempted I am has brought me UP to half-dead, which feels pretty good (so that should give you some idea of how terrible 3/4 dead really felt).

Because I have ovaries and also am not a cardiologist, math is hard. It took some mental gymnastics to figure out my Ejection Fraction, which is not only a thing but also the name of my death metal Starship cover band:

Ejection fraction is usually expressed as a percentage. A normal heart pumps a little more than half the heart’s blood volume with each beat. A normal LVEF ranges from 55-70%. A LVEF of 65, for example, means that 65% of the total amount of blood in the left ventricle is pumped out with each heartbeat. The LVEF may be lower when the heart muscle has become damaged due to a heart attack, heart muscle disease (cardiomyopathy), or other causes.

An EF of less than 40% may confirm a diagnosis of heart failure. Someone with diastolic failure can have a normal EF. An EF of less than 35% increases the risk of life-threatening irregular heartbeats that can cause sudden cardiac arrest (loss of heart function) and sudden cardiac death.

That cheery information comes with a handy chart:

EFM

you could be getting down to this. irregular. beat.

It always comes as somewhat of a surprise to me just how REALLY FUCKING SICK I WAS/am, because I am adorkably naive when it comes to my own person. I’ve honestly just been going about my business as usual and treating all of this as a minor annoyance like a cold or not enough ice cubes or my handmaidens missing a spot when they anoint me with fragrant oils, but I guess it’s much more serious than that. I mean, look at that chart. I am at risk of life-threatening irregular heartbeats! That doesn’t sound like much fun at all.

As of today, my heart is ejecting fractions at 35%. That is officially one half of normal, so it’s not great by any stretch of the imagination .. but it’s so much better than where I was, so things are looking good. The meds are doing what they’re supposed to, Doc Awesome is pleased at my progress, and he doesn’t know why the hell I’m so itchy all the time either.

Apparently, most heart failure patients have their follow-up ultrasound done 6-9 months out. Mine was done pretty early, but I’m glad it was – this gives me a good idea of where I’m at (and also a much needed reminder that it’s okay if I feel lousy sometimes because I am really for real sick and not just a big baby for not powering through it). I’ll be scheduled for another one come January.

The only real downer news from the appointment is that I’m going to be married to this old person pill sorter for the foreseeable future – I’ll be taking this delightful assortment of medication for something like 18 months. That’s insane! At least my medic alert bracelet investment won’t go to waste, though. That’s good.

I was completely a little worried going into the appointment this morning, because it felt like the ultrasound took an inordinately long time. Ramon the Technician prodded at me for what felt like hours, and seemed to be rescanning certain areas repeatedly while peering at the screen with a furrowed brow. That’s disconcerting at the best of times, let alone when you’re waiting to find out where you sit on the scale of one to dead. However, I’m pleased to report that I’m very slowly but very surely getting better. Hooray! Unless you hate me, at which point I apologize that I’ll be sticking around for some time yet. Sucks to be you!

but no one hates me because i'm awesome, right? :(

but no one hates me because i’m awesome, right? :(

 

health update: three fifths vs two thirds

Tomorrow will mark four weeks since the night I dragged my two-thirds dead ass into the ER and learned that I wasn’t crazy; something new and different was really wrong with me. I had my first official checkup with Doctor Awesome yesterday, to see how I was taking to the medication and if I was feeling better.

I’m pleased to report that I am definitely feeling better – I’d be truly terrified if I wasn’t, because holy crap you guys I felt so fucking awful before the hospital. Things were so better almost immediately afterwards that I was partially convinced the whole thing was psychosomatic. The medication made a huge difference, and the bloodwork I had done last week showed that things weren’t getting worse (which is awesome). It also showed that my kidneys are super great (I hadn’t really followed up on how my kidneys recovered from the infection of ’12, so I was glad to hear they were back to superstar status), I don’t have diabeetus, and I am definitely not pregnant. All good things!

A lot of the really horrible symptoms I was having have gone away, too. I no longer sound like I’m dying in my sleep, to Ed’s eternal relief. The utterly insane sweating while sleeping, sitting, standing perfectly still, thinking, etc has dramatically lessened, and I mostly don’t feel drained to the point of tears after standing up or getting dressed. I still get swooningly tired much more easily than I should, but I can move around and do things and go for short walks so that’s nice. My chest no longer rattles! I don’t sound like Darth Vader eating Pop Rocks at night! HOORAY!

Not everything is perfect, but I’m slowly getting there. My heart is still broken (wahhhh) and hovering around 20% functionality, so fluid remains an issue. I may need to increase my medication dosage, which is doable because I’m apparently on a crazy low dose of medicine and obviously responding well. A bump in making me pee more isn’t going to hurt – in fact, it’ll probably help. I’ve had a couple barf-up-fluid incidents over the last week, so my next step is to take a double dose of diuretics and spend my days in the bathroom. Good times.

I’m really glad I’ve got permission to work from home when necessary, because all toilets on the floor I work will be out of commission tomorrow and the next day. I am NOT going to increase my pee pills and then work where there are no bathrooms. That is madness.

Missing toilets aside, work has been great about all of this. They know I can do my job from pretty much anywhere, so I have permission to take care of myself and work where I need to. That’s super helpful as I’m so much more productive at home anyway – and not having to feel my misplaced guilt over not physically being in the nest is a big relief. I stress out over the stupidest things, and that’s one of them.

I’ve got an ultrasound scheduled for the end of May, by which point Doc Awesome says I should be only 1/3 dead instead of 2/3. If not, I get more meds. In the meantime, I’m supposed to go see him as soon as I have any weird or worrying symptoms or if I want to go to a really, really crazy nice office staffed with catalogue-handsome people. This is excellent advice, and for once, I will listen to it.

Oh, and I have a medic alert bracelet now. I am clumsy and I wander off a lot, so I thought it best that I have some sort of notification that I’m broken hearted and allergic to penicillin. I am getting really good at common sense! I should write a book.

.. after I get lunch. I’m still not very good at eating, but I’m trying.

unbreak my heart

Hi!

It’s been an interesting 24 hours!

Last night around 9:30, I started to wheeze. I decided that the time was as good as it was ever going to get, so I asked Ed to take me to the ER in North Vancouver (closest one to our place). We got there around 10pm, and settled in for a long, long night of waiting.

Blood was drawn and x-rays were taken and the doctor determined that they couldn’t determine anything other than the fact that what I have is definitely not asthma. My blood was showing something, but more testing was needed to figure out what. They discharged us at 3am, and told me to be back at 7am for a CT scan. Okay then!

The ER visit itself wasn’t going all that well, because before we left the house I threw up .. which made all the rattling stop. As expected, when the doctor listened to my lungs, there was nothing amiss. Luckily (I guess) I had another barf attack at 2am, and violently and loudly threw up in the triage bathroom. This was enough to make the doctors say “wtf is that”, and soon after I was told I needed to come back in 4 hours. As shitty as that was, I was actually thrilled .. they were listening to me. They knew something was wrong. They weren’t going to send me home to keep an eye on things for myself. Praise Jeebus!

So, home. I managed to get onto the couch around 4am, and slept fitfully/sweatily for an hour before I had to get up and head back to the hospital. I took a cab so Ed could get more sleep, and checked myself in for some CT scans and bonus vein trauma. My veins have always been dicks when it comes to getting blood drawn or IVs inserted or my next fix, but today they were brutal. It took 7? needles, an IV technician, and finally the old standby – a baby needle in the back of the hand – to get anything in or out of me. I’m covered in bruises and sticky residue from my elbows to knuckles.

The CT scan was interesting, what with the injection that makes you feel like you’re peeing yourself, but when it was done they propped me up in a chair to await my fate. It was handed down soon afterward. The good news: there were no blood clots in my lungs. Hooray!

The bad news: heart failure.

The doctor was quick to assure me that “heart failure” is really a catch-all term for anything wrong with the heart that isn’t out-and-out cardiac arrest. Basically, all my symptoms were being caused by my heart not operating at 100%, which caused fluid to back up, which made my lungs work harder, which made it hard to catch my breath, and so on. I was going to be sent for an echolocation and an ultrasound, and we would see what was happening. Also, I’m pretty young and all, so do I want them to do everything possible to save me if it gets to that? Yes, that would be lovely, thank you. I understand it’s a routine question, but HOLY JESUS WHY.

I had the tests done, I ate my hospital lunch, and .. I don’t have any other news. I’m in the hospital overnight, as I have yet to talk to the heart doctor to find out what the bat test and ultrasound showed. I’m clammy and bored and don’t want to be here .. but at the same time, I DO want to be here. I’m almost giddy with relief that the doctors and nurses listened to me and realized something was wrong and ordered the tests that could solve this once and for all. The nurses here have been amazingly nice, I’m fully connected to the outside world thanks to Ed bringing my laptop and Renee working her wifi magic, and I’ve already had awesome visitors bearing flowers and sparkly pandas riding unicorns. Yes, I’m uncomfortable and filthy and they keep pumping my IV full of stuff that makes me pee the universe and wish I was at home, but I’m being taken care of and that’s all that really matters right now.

I haven’t spent the night in the hospital since I was 5 and had my tail removed. This is really weird.

More details when I get them, but for now, I’m #stillalive.