Here's What's Happening

So, I survived.

I have some badass scars (pics to possibly follow), and I haven't been having any side effects from my medications that are too disruptive to daily life. I get a little flushed sometimes, my hands shake a little bit sometimes, plus I get mudslide shits every so often, but I'd rather go through Charmin wipes at a slightly increased rate than be in a hole in the ground. I'll be on three immunosuppressants forever (one has the potential to be reduced to zero, but it's more likely to just go down to a maintenance level of about 5mg/day. They reduced my dose from 15 to 12mg/day after my last appointment, so I'm trending in the right directions) to prevent my immune system from figuring out the heart that's inside me is really an intruder, prevastatin because the immunosuppressants raise cholesterol, vitamin supplements to boost my immune system, aspirin to keep my blood nice and un-coagulated (and embarrass me when I forget to not take it and don't stop bleeding for like 20 minutes after a blood draw). I have prophylactic antibacterial, antiviral, and antifungal meds that will be discontinued in a couple more months, and Prilosec to prevent the rest of the gang from giving me stomach ulcers.
Right now I have a biopsy and clinic visit once a month, but I think after March it'll be every other month, eventually weaning down to once annually. Biopsies aren't so bad, they put a catheter in through an artery in my neck and take little snips of the heart to test for rejection. Once they do the lidocaine shots it just feels like getting mildly choked and knuckle punched in the neck for about half an hour. Not my favorite way to spend a morning but medical science hasn't come up with a better way to do it yet.


Despite it all, I have to believe I've been one lucky fucker:
My boyfriend works 8-4. If he worked 9-5 he might have been home too late to take me to the er before I passed out for good.
I "fainted" during an EKG, which showed them that passing out was related to heart function.
The doctor running the show that first night was familiar with viral myocarditis and was therefore able to hit on that diagnosis and get a temporary pacemaker/balloon pump in my heart quicker than someone who wasn't so well-versed in rare heart explosions.
I was lucky that when I died on the operating table it wasn't for good.
I was lucky to retain my mental faculties. They were unsure if there would be brain damage since the extent of how long my brain wasn't getting enough blood those first few days is unknown.
I'm lucky my bf and I both know a little sign language, so I could somewhat communicate before the breathing tube was taken out (they didn't tell me I had one in, and I was so fucked up on the meds I didn't realize it was there. I remember being really frustrated that nobody could understand what I was saying!). One of the first things I signed was "dinner," because I was worried he wasn't eating.
Speaking of mental faculties, my sense of humor was up and running before the rest of me- the head of cardiac surgery came to see me in August and I spent most of the visit winking at my nurse while pretending to pinch his butt as his back was turned.
I'm lucky I was in such good shape going in, so when I woke up and had lost 30lbs of muscle I still had enough to get back on my feet quicker than a typical patient who had been knocked out for 2 weeks.
I was lucky that my bf's schedule permitted him to come see me practically every night so I had someone to commiserate with or just plain sob on.
I'm lucky that my time on the waitlist was shorter than average so that I was able to be home for Christmas and my birthday.
When they removed my heart and began exploring it to research viral myocarditis, they stumbled upon a genetic condition that was causing the muscle tissue to be replaced by fat. If I had gotten better (which was unlikely to happen due to the genetic condition, but they didn't know I had it in the beginning), or if I had never experienced the myocarditis, I might have just dropped dead one day.
I'm lucky my parents were and are willing to financially help out. I'm lucky that they wanted to be there for me to the detriment of their own physical and mental wellbeing. Until, that is, someone pointed out that their visits were also to the detriment of MY physical and mental wellbeing.

I asked my mom to let me know what the final bill is from the main hospital out of curiosity (my parents are paying the bills [they're paying them collection-agency-late for no fucking reason, but they're paying them]; not like I have the kind of money that America requires for unpredictable and unpreventable medical misadventures). The ambulance ride from the er to the Boston hospital was $6,000. Turns out there was a screwup in the er- someone transcribed my insurance information incorrectly, so several of the initial bills from there were "denied" along with those from the first hours/days at the main hospital. There are three different hospitals in the mix, plus a local blood lab and three pharmacies, so there's a fuckton of info that my parents decided would be best if they received instead of me, the person whose name is on them, so now I have no idea where any of my medical paperwork is. I'm trying to re-establish autonomy but it's difficult when I have to rely on them to avoid going into lifelong debt. Not much of an exaggeration- the ones from the few days I was on ECMO were sent here and came to just about $30,000; Multiply that by a few months and a few surgeries and you get what's over my head right about now.

Right now I'm just supposed to focus on working out and not getting sick.
I was so thrilled when they told me I could finally go out in the general public; I missed going to the grocery store so much when I was in the hospital, and try as he might, my bf could never get the things on the list quite right. At my last visit I was told I could start using some weights and doing aerobic exercise "as symptoms permit." I'm desperate to go back to yoga, but I'm giving my sternum a couple more weeks before it has to support a chatturanga. (I'm, like, a huge yogi now. That's something I missed out on blogging about in the past year. More on that later, I'm sure.) It's made me realize I need to find an outlet for dance again, too, because I need to appreciate being able to move myself around while I can.
It's not recommended to go back to work for the first 6 months or so. When I start looking, I think I'll just be in the market for something part-time, so I can keep my disability. The long-term goal is to obviously get a full-time job, but that wasn't going so well for me before I got sick (I had a pretty shit temp position, but they might take me back p-t when I'm up for it so I won't badmouth them too much) and it's not like I can do anything about it in the immediate future so there's no sense worrying about it. Not sure how I'm supposed to address the months-year I had to take off for all this, but that's a google search I can make later.
I'm trying to set good social patterns while I'm at it, because my only goal for this year (other than health stuff) is to see my friends more often. So far, so good- decent turnout for my birthday party and a few double dates, plus a couple family functions with the bf. I also fished for some new reads/followers on 20sb last night. Most of my regular readers are now facebook friends who, far as I know, don't blog as much anymore, so I want to build up my blogroll with some good stuff again.
So far the hardest thing has been sleeping: I just can't seem to drop off at night, and once I do it's nearly impossible to get back if I'm woken up for any reason. Last night I accidentally fell asleep at around 5pm then slept until about 7:30pm. I haven't been able to get back to sleep and it's currently 7:20am. Hopefully I'll be able to stay awake all day and crash any time after my nighttime pills!

That just about wraps up as much as I want to say. It's not by any means a full account of what happened. It's barely the highlights. I keep remembering things that happened from July 31- December 2 that were either really great or truly awful. Some things are just hard to explain, like the sensation of getting chest drainage tubes pulled out while you're in the middle of a steroid freakout. Or seeing hospital transport show up at your room with a wheelchair to take you out.
The whole experience galvanized my personality. I'm likely to blurt out my opinion without waiting my turn because I know I might not get a turn if I sit on my hands. I'm the first person to crack a joke because humor can turn any situation around. I more strongly believe that there's more going on in the world than we can see, because I got my heart 15 years to the day that my bf's grandmother passed from a heart attack, and I just don't see how that could be a coincidence. I'm tougher now than ever.
I said from the beginning, and I'll keep saying it: I'm glad this happened to me instead of any of my loved ones. The end