In mid-June, I had briefly chatted about how I was going to be undergoing a heart procedure to treat one of my illnesses, which would then have vastly improved my health. That procedure took place on June 25th and, unfortunately, it was not a success. Today, I wanted to provide y’all with a small update and sort of use this space as a sounding board while I process everything that has happened in the last couple of days.
The procedure that I was supposed to have done was one where the doctors would insert a camera into my heart so they could examine the portion of my heart that was causing me to have what is essentially an irregular heartbeat. Then, they were supposed to insert a balloon into that section, expand the balloon, send an electric shock through it, and basically “kill” that part of my heart to prevent the irregular heartbeats. However, once they got the camera in my heart, they discovered that I have a congenital heart defect—a hole in my heart, to be specific—and it is much worse than imagined because the hole is rather large. My doctors are stunned that I am still alive given the sheer size of this thing.
Suffice to say, they couldn’t move forward with the procedure because to do so would create some severe complications and the risk of me not surviving it had increased vastly. So… my treatment did not go as planned. I’m still on recovery for two weeks because the incisions and insertion of cameras and things did their painful gig and need time to properly heal. But, now that this procedure was inconclusive, what does that mean for my future?
I have to have open heart surgery to treat the hole in my heart. That is the only way to treat this defect, particularly since it’s so fricking big. According to my cardio-surgeons, I have had this opening since birth. It was supposed to close on its own as I got older because when I was a baby it was a tiny thing. But that didn’t happen. It kept growing, and since it is positioned awkwardly within my heart, it wasn’t showing up on any of the numerous tests that my doctors ran prior to setting me up with this recent procedure. If I didn’t do the procedure, I actually may never have gotten diagnosed, or the diagnosis would have arrived way too late. So, in that sense, even though shit hit the fucking fan, in a way it was a blessing in disguise.
I’m not going to lie. I am freaking out. Open heart surgery and heart transplant surgeries are something that I have always been against. My brother died from a failed heart transplant surgery. This entire ordeal has been so incredibly triggering for me on a deeply personal and emotional level. On top of that, due to COVID, I was completely alone in the hospital when all of this went down. My parents dropped me off and then had to leave immediately. I underwent the procedure alone. I woke up alone. I learned that I have what can amount to a semi-terminal illness alone. My brother died alone, which has exasperated everything further.
If I could place all of my current thoughts and feelings on the table right now, there would be three neat piles. The first pile would be of validation and relief. I have suspected that I’ve had this illness for years, but no one ever believed me. I did a lot of research on my own when my symptoms first began manifesting many years ago, and my loved ones thought I was being a paranoid hypochondriac. At some point, I started to believe that maybe they were right, and my instincts were grotesquely wrong. But that’s not what happened. My instincts weren’t wrong at all, but right on the fucking money. This goes to show us that sometimes what we feel with regard to our bodies is right and ignoring those gut instincts and vibes is probably a big mistake. So, I’m fucking glad that I wasn’t just some paranoid freak. I was right and it’s… remarkably freeing. Granted, I wish I could’ve have been right about something far less dangerous.
Then there is the second pile where I’m also really pissed off. Maybe if people stood by me and supported me more back then, and helped fight to prove something was wrong rather than writing me off as a crazy idiot then I wouldn’t have to deal with all of this shit right this second when I have so many things I’m trying to accomplish, but may not be able to complete now thanks to this condition. Like finishing my fucking college degree or trying to become published as an author. I am so mad and feel like I can’t catch a goddamn break, and my mental health is really starting to take a toll, y’all.
Which brings me to the third pile: fear. I don’t want to die. I am not ready to die and I’m fucking terrified I will.
Open heart surgery is no fucking joke. They are going to saw open my ribcage, put me on a machine and then cut into my heart to repair it. It’s one of the riskiest surgeries that person can undergo and I’m only 32! I joke around about how old I feel with my achy bones and things, but I’m not really that old at all. Aside from my heart defect and my body weight, I am incredibly healthy otherwise (which did blow my mind a bit). My brother died when he was 30. He accomplished a helluva lot more in his life than I ever did (so far), but it doesn’t mean that I don’t want the opportunity to at least try.
I want to publish a book.
I want to co-write a comic.
I want to get a college degree, even if all I can do is a Bachelor’s and nothing more.
I want to get my JLPT certification.
I want to buy my first home in a city I don’t hate.
I want to travel to a different country.
I want to meet some authors I admire one day.
I want to help build a sanctuary for homeless kitties.
I want to complete my transition from my assigned gender to my actual gender.
I want BiblioNyan to hit 2,000 followers one day, and The Djinn Reader to hit 1,000.
I want to watch my best friend open her first restaurant or finish making her first film.
I don’t want my last moment to be of me lying on a silver slab in the hospital, completely alone with my chest ripped apart like a fucking xenomorph baby just birthed itself from my decaying flesh. Although… it would be low-key cool if it were a xenomorph and not heart disease.
I want to live. I want to be alive. But I am fucking scared to death (bad word choice).
So, what’s going to happen now? Well, I get to meet with heart specialists to figure out how to proceed with getting treatment, which means setting up the open heart surgery gig. If I successfully survive the surgery, then I will have a minimum of three to four months of recovery. The average and more realistic recovery time is approximately six months to a year. During this time, there is little that I shall be able to do since I’ll be out of commission for the most part. If I don’t successfully survive, well, then I’ll be dead.
Gloomy, I know.
So, that’s the update.
Since my plans for getting a regular job have also been indefinitely postponed with the severity of my condition (was originally going to work at my college’s libs), I will be setting up a Patreon in the coming month so I can have a way to supplement my income. Trying to stay on top of bills and costs of medication while dealing with surgeries of this calibre are going to be tough, and I’m going to need all the support I can.
Anyway, that’s pretty much all that I have to say. I’ll definitely keep y’all updated as things progress and I’m sure I’m going to have days when I’m just going to want to sit down and cry or vent or just… maybe even give up. Even though the urge will be there, I promise I won’t stop fighting, no matter how daunting or frightening the circumstances.