Act 0: Deterioration
(Artwork courtesy of my sister.)
This pseudo-Act covers Hisao’s time in the hospital, from his admission to his discharge (and a small bit beyond).
It’s first purpose is to probe deeply into Hisao’s condition, reconcile what we see in-game to reality, and patch the holes and inconsistencies in the canon explanation of his condition. Everything you see here with regards to Hisao’s condition is, to the best of my knowledge and research, either established medical fact, or could be easily extrapolated from the same. I also try to remain as consistent as possible with respect to canon, but I always sided with realism over consistency if they came into conflict; there is one (possibly two if you squint) major case where this happens, but even then I tried to patch it over-- you’ll know it when you see it.
This story also serves as a look into Hisao’s character, and examines why and how he became the shell of a man we see in the beginning of the main KS story. There’s really not much to add, regarding this; we all know how this begins and ends, so relax and enjoy the middle parts.
This is, by far, one of the longest monolithic stories I have ever written, at around 10k words. I feel like I passed a milestone of some kind...
As always, any feedback or criticism you could give me would be greatly appreciated.
Anyways, enough chit-chat. Thanks for reading, and… on to the story.
[ Out Cold ]
There’s a young man. He has the steady fire of life in his heart, the wonders and mysteries of science in his mind, and a light in his eyes that looks to cherished friends and a bright future.
He wants to live.
And with that anticipation,
Hisao Nakai, high school student, steps into the stark white snow, and towards the naked trees of a hill in winter.
--
There’s a young man. He has the fire of compassion in his heart, the wonders and mysteries of science in his mind, and a light in his wide eyes that looks to cherished colleagues and futures preserved.
He wants to help.
And with that confidence,
Dr. Nakamura, resident internist, steps into the stark white lighting of the Intensive Care Unit.
[ Admission ]
“Todai, Medic One-Eight-Five enroute. Patient is Code Three, Level One at this time; seventeen year old male, found unconscious with agonal respirations. Patient is currently unconscious, GCS is 3. Vitals for you are… blood pressure 68 over 44, heart rate 118, sinus on the monitor with intermittent non-sustained VT, O2 sat 82 percent. Patient is currently intubated with two peripheral IVs, we’re running 100 percent oxygen, chilled fluids and dopamine. Be advised, we’ve transmitted a twelve-lead, ID 1-3-3-8. ETA 5 minutes if you have no further.”
“Tokyo University copies, room one on arrival.”
--
“He doesn’t look great, I’ll grant you that. But he won’t code in the elevator, so he’s stable enough to move to ICU in my book.”
--
I slouch, ever so slightly, in my conference room seat. My head feels fogged up and slower than normal. My eyes are becoming ever harder to keep open. It’s been 24 hours since the last time I’ve even closed them for longer than 10 minutes.
I down my entire cup of coffee in one go.
The room is still filled with the sounds of talk and discussion.
Oh, right. We’re still doing rounds.
Why are they looking at me?
“Dr. Nakamura? You still with us?”
That voice… it’s, uh. The attending physician. Right.
“Sorry, sir. Just a bit tired.”
He smiles in sympathy, and I find the same sympathy in the eyes of the rest of the doctors at the table. We’ve all been there, I guess.
“We’re about to start discussing the case of Mister Nakai in Intensive,” he prompts me.
Oh, that kid. I did his history and physical, I should have his file somewhere here…
I shuffle my papers, looking for the appropriate file. It takes me a hazy minute, but I find it.
I blink my eyes and shake my head a little to keep myself awake, then I launch into the case presentation.
“Hisao Nakai is a 17-year old male presenting for sudden cardiac arrest and chest pain. He’s had no prior history of heart or chest trouble of any kind and no previous medical history.
“Patient has remained unconscious thus far, so we haven’t been able to get an ROS yet…
“Patient has no known allergies and isn’t taking any medications. Family history… first-degree relatives are noncontributory, though the family did report some extended relatives having unspecified ‘heart problems’…”
--
What’s… happening? Where… where am I?
I try to open my eyes a little bit, but a bright white light forces me to close them again. It hurts a bit less when I try to open my eyes the second time.
It feels hard to breathe. I take a short, little breath, and my lungs nearly fill with air, which startles me.
I feel cold for some reason, and start to shiver. I can’t tell if it’s the room I’m in, or if it’s just me. Every part of me seems cold, from my head to my chest to my toes.
There’s a grey circle above me. I realize that it’s a light fixture, and I’m looking at the ceiling. I try to move my head to get a better view, but realize it feels impossible. Instead, I settle for simply moving my eyes.
The first thing I notice is the plastic tubing everywhere. There’s a tube coming from my chest, right in front of my face, two coming from my arms, one coming from my
mouth, and several others connecting pieces of equipment to my sides.
The clothes I’m wearing are unfamiliar; they’re a light shade of blue, and feel very coarse and uncomfortable. I can smell bleach in the air, which makes me even more uncomfortable.
The tube in my mouth feels really uncomfortable, too.
It seems to take a monumental effort to move my arms up to the tube, but I manage to grasp it with both hands. It seems to be firmly lodged in my throat, and when I try to wiggle it free, all I manage to do is disconnect part of the tube. I can hear air rushing from it as it swings free.
Some kind of alarm goes off, a shrill beeping sound filling my ears. Within moments I can hear someone opening a door. She’s dressed in blue clothing that looks fairly similar to mine, except it has a deeper blue color. It’s only when I see the emblem on her chest that I realize where I am.
I’m in the hospital.
[ Diagnosis ]
I give the cardiologist a look. What the hell kind of terms did he just throw at me?
“I’m sorry sir, cardiology isn’t my specialty. Could you repeat that?”, I tell him.
“Arrhythmogenic. Right-ventricular. Cardiomyopathy,” he repeats. “Inherited heart muscle disease. Causes the right ventricle wall to progressively become thin. And by thin, I mean
piece-of-paper thin. It also causes people to go into V-tach and V-fib often, usually when they’re exercising. Seems to be associated with adrenaline,” he explains further.
I scribble that down onto a sheet of paper, suddenly thinking that I might be far too tired to process this information.
“His heart isn’t going to suddenly tear open and make him bleed out on us, is it?” I ask.
“Nah, that’s not what happens. Usually, patients are asymptomatic… until they hit adolescence, then they drop dead due to sudden cardiac arrest.”
“…really? That can actually happen? So wait, what do we do?”
He thinks for a while, and looks at an MRI we took of the patient’s heart.
“I’ve never actually seen this myself, to be honest. I read about it during my fellowship, of course, but I’ve never run across anyone who actually
had it.”
He takes a deep breath, and circles something on the MRI.
“Alright, so… the big parts are the right ventricle wall becoming very thin and the potential for ventricular arrhythmias. The first part’s not that big of a deal, actually. Sure, it means his heart’s not pumping as well as it should, but it’s not outright failing. Yet, anyways.
“The second part, with the V-tach and the V-fib? That’s the lethal part. To be frank, he’s really, really freaking lucky to be alive right now. Again, the first symptom patients usually present with is SCD: they drop dead out of nowhere.
“Now, treatment normally is like every other condition that causes ventricular arrhythmias: we stick an implantable cardioverter-defibrillator in them. We get them to the cath lab, pass some leads through their veins and into the right ventricle, then we slip the ICD right under the skin, and the patient goes on to live a nice, long, and normal life.
“Normally you put the leads on the right ventricle wall, but for this disease we’d put the ICD leads onto the ventricular septum, because, you know, we don’t want to poke a hole in his right ventricle and cause cardiac tamponade.
“Unfortunately, if this MRI’s right, then his ventricular septum’s also become involved,” he says, pointing out the thinner than normal barrier separating the two ventricles.
“That makes things a lot harder,” he explains, “because now when we go to implant the ICD we run the risk of basically giving him a ventricular septal defect by accident. And it might not even work once it’s in, because the disease progression might render the part of the heart muscle we attach the leads to nonconductive.
“Even still, though, my recommendation is that we still try. No matter how you put it, an ICD is the best way to prevent sudden cardiac death in this case.”
--
After taking about ten minutes to fix myself up and figure out how I’m going to deliver this, I find myself standing in front of the patient’s door. I look at the plate, nervously.
Room 352. Hisao Nakai.
Faintly, I wonder if I should be even doing this. I’ve got like two hours before I’m done with this 30-hour shift. I could just ask someone else to deliver this, I think.
But I push those thoughts to the back of my mind. He’s
my patient, so in a way, I have to do this. It’s what’s right for him, and it’s the only way I’ll learn how to do my job.
I plaster a big bright smile on my face to hide my nerves, and I open the door.
--
A doctor walks into the room, and sits down by my bedside. His face is stretched in a smile that seems too enthusiastic to be real; is he simply trying to be happy for my sake?
“Well, uh, hello there, Mr. Nakai. I’m Dr. Nakamura, and, um, I’ll be the one taking care of you while you’re here in the hospital,” he says. He sounds like he’s trying to be casual.
A silence hangs in the air for a second before I respond.
“Hi? Could you call me Hisao?” I ask him. “’Mr. Nakai’ sounds like my dad.”
He’s briefly surprised, and his eyes go wide for a second. I can see they’re a bit bloodshot.
“Eh? Okay? Sure!” he replies hastily.
“So,” he begins tentatively, “I’m guessing you have at least some idea about why you’re here.”
No. I really don’t. And I would kind of like to know.
“I really don’t. All I remember was a sharp pain in my chest… and then I woke up here.”
He looks at me for a second, seemingly thrown off by my answer.
“Oh, I didn’t… um. Well, you had a sudden cardiac arrest. Your heart suddenly stopped.”
That’s… not comforting, to say the least. I thought those only happened to old people? There’s a bigger question on my mind, though.
“What caused it?” I ask.
He sighs, now looking back on track but simultaneously a bit downcast.
“Well, that’s what I was going to discuss with you. We think you have a… condition, called arrhythmogenic right ventricular cardiomyopathy.”
The words are strange and foreign; they don’t seem to fit with the rest of the sentence.
I stay silent, and he takes that as his cue to continue.
“It’s a rare, inherited, progressive disease of the heart muscle. It… causes the outer wall of the right ventricle to become thinner and thinner, and disrupts the heart’s electrical systems,” he explains, though there are holes and pauses in his speech.
“Since the heart’s electrical pathways are disrupted, it tends to beat erratically,” he continues.
“And occasionally, the heart can begin to beat way too fast, which can be fatal. This usually happens when there’s a lot of adrenaline going around the body… so things like exercise and sports can cause these symptoms to manifest.”
I think back to the forest and the snow. There was definitely a lot of adrenaline going to my heart, then. But… will this happen
every time, now? Will I suddenly die because of a little adrenaline rush?
The worry must be clear on my face, because the doctor quickly interjects.
“D-don’t worry! We can’t cure the underlying disease, but we have something to help treat it.”
He pulls out a sketch of some kind of device. It’s small and oval-shaped, with a long wire coming out of it.
“We can place what we call an
implantable cardioverter-defibrillator. It looks a bit like this, and it’s essentially a miniature defibrillator that’s always on. It constantly monitors your heart rhythm, and if your heart is in a dangerous rhythm, it’ll deliver a shock to correct it. You could return to your normal life in a few weeks like nothing even happened.”
That’s calming, though other concerns come up. What about batteries? What do I do if I damage it? I don’t voice these, though, because it looks like the doctor has more to say.
“The procedure does have its risks, though. Especially in patients with your condition, there’s a chance we could end up puncturing the walls of the heart, or the walls separating the chambers inside the heart, and there’s a chance the device may not work once it’s implanted. Still, it remains the best and most effective option for patients in your case.”
The idea of having a hole in my heart is terrifying.
Still, this disease is clearly no laughing matter, and if I have the chance to have a normal life… I’d take the risk.
[ Treatment ]
The two days between the diagnosis and my procedure pass in the blink of an eye. The doctor describes the procedure, alternatives, and risks a bit more for me. My parents, Iwanako, and what seems to be most of my class all visit at some point, even if only briefly. A flood of cards seems to arrive at my room: a nonstop parade of ‘get-well’s and ‘hope-you-feel-better’s rapidly accumulates on a table near the side of the room.
I try to keep a cheerful face on through it all—at least people actually seem to care about me-- but even so I can’t help but feel a bit apprehensive in the face of this upcoming operation.
I’m sure my fears will come out to nothing; this is, after all, a fairly routine and noninvasive procedure. It’s not open-heart surgery or something like that, as my doctor explained.
It’s also better than a lifetime of medications.
Soon enough, I’m lying on my back in what seems to be an operating room. It doesn’t seem to be quite as big, or as crowded as I’d expected an OR to be, though.
A woman in scrubs looks down at me from my side. When she speaks, she seems relaxed and maybe even a bit friendly. She holds her arm out and gestures to the room.
“Welcome to the cath lab. You know what we’re about to do, right?” she inquires.
So, I’m
not in an OR. I nod.
“We’re going to keep you awake for this procedure. We’ll make sure you don’t feel any pain, of course, and we’re going to administer something to keep you calm. But we’re not going to fully knock you out.
“I’ll have to ask that you try not to move at all while we’re doing this, okay?”
That sounds agreeable. I’d much rather not be unconscious again, and I didn’t plan on jumping around while they messed around with the insides of my heart. I nod.
“Great! Let’s get started.”
They inject something into my chest, underneath my collarbone, that makes part of it go numb, and then they make a small cut and start inserting a tube into it.
The novelty of having another thin plastic tube going into my chest wears off after a bit, and I zone out, thinking about how life is going, outside of the hospital. My thoughts drift to Iwanako.
When she first showed up at my door, I was elated. We’d have a chance to patch things up.
In the end, however, we ended up saying nothing to each other except for the usual, routine things: ‘how are you feeling’s and ‘I’m fine, how about you’s. She didn’t seem to want to bring the subject up, so I went along with it and stayed silent.
She did say she’d come to visit me after my procedure though, which offers a bit of hope.
Tomorrow, I tell myself.
I’ll be able to patch things up with her tomorrow.
I’m thinking about ways I could bring the subject up, when a sharp pain in my chest interrupts my train of thought. I tense up, involuntarily, and the doctor notices.
“Huh?”
She notices something on the monitor, and goes pale, her eyes widening in shock.
“Oh shit, I think the stylet just tore his septum wide open.”
It suddenly becomes a lot harder for me to breathe, and I can feel my heart start to pound away like a jackhammer.
What’s happening? What’s going on?!
I start to squirm a bit in panic, but this seems to make things worse.
“Sir? Sir, I’m going to need you to stay still—fuck, now there’s a hole in his right ventricle—sir, stay with me here…!”
I can feel panic making its way through my system as the edges of my vision go dark.
“Shit, I think he’s crashing, page cardiothoracic surgery,” is the last thing I hear before everything goes completely dark.
--
After a good eight hours of sleep, I’m feeling back on my feet again.
I step back into the ICU with a pep in my step, which fades when the nurse hands me not one, but
two operative reports. I scan over both of them; they’re about Hisao’s ICD implantation.
…advancement of the second ICD lead was attempted, but was interrupted … due to a sudden rupturing of the ventricular septum…
Shit, shit, shit. We were afraid of that, weren’t we?
…patient began to involuntarily move due to chest pain, causing additional damage to the septum and perforation of the right ventricular free wall before additional sedation could be administered…
…acute pericardial tamponade ensued, and patient was referred to cardiothoracic surgery for emergent ventricular wall and septal defect repair.
That’s… bad. Actually, that’s about as bad as it could have gotten.
Fortunately, the second, emergency surgery seems to have gone a lot smoother. According to the report, he’s stable now, though I imagine he’s lost a lot of blood.
One last part near the bottom of the second operative report, however, draws my attention.
Patient is now showing 2:1 Mobitz II atrioventricular block, presumably secondary to injury to the ventricular septum and Bundle of His. Implantation of a permanent pacemaker is recommended.
Are you kidding me? Now I—
Hisao, I remind myself—now
Hisao has to deal with this on top of his existing condition? The first thing it strikes me as is
unfair.
Then the guilt hits. I mean, even if I’m only a first-year resident, I’m still taking care of Hisao. I could have said something, maybe. Maybe if I’d been more awake, more inclined to think, then, I could have done something.
I go to page for a consult with Cardiology. Time to figure out where we’re going with this.
[ Consultation ]
“Well, damn, Nakamura. Looks like you’ve got a really bad case, here.”
I look up from Hisao’s patient file. No shit, it’s bad; I didn’t need him to tell me that.
I bite back telling him
that thought, however, and try to move forward.
“…okay. If it’s as bad as you say, where do we go from here?”
He thinks for a minute, leaning back for a chair and looking up at the ceiling.
“Well, we saw how ICD implantation went: poorly.”
No need to say
that again.
“But I think that might’ve been a one time thing. Another try may be warranted in his case.”
Wait, what? But didn’t we just agree that it went badly the
first time? Why try it
again and risk a second set of complications?
I’m about to ask him why, but he changes the subject first.
“I went ahead and took the liberty of printing out a couple of reports on the disease, if you want to look over them,” he says, pushing a somewhat thick stack of papers my way.
I look at the article at the top of the stack, and read its title aloud.
“
Arrhythmogenic Right Ventricular Cardiomyopathy Type 5 Is a Fully Penetrant, Lethal Arrhythmic Disorder Caused by a Missense Mutation in the TMEM43 Gene. That’s…,” I say, a bit lost for words.
“One hell of a title, isn’t it? But I mean, it gets the point across. And yeah, I also ordered a couple of gene tests run while you were out. Hope you didn’t mind,” he fills in for me.
I really don’t mind, but I’m also very confused.
“Thanks, but… why? Don’t you have your own patients?” I ask.
“Admin actually told me to help you with this guy due to his ‘rare condition’ and ‘unique circumstances’, so I’ve been meaning to catch up to you ever since you came in this morning. And frankly, I’m not complaining, or anything: this is the most interesting case I’ve seen in a while.”
Something about the way he mentions Hisao irks me.
“I mean, scientifically speaking, I think we’re treading new ground here. ARVC is rare enough, and I couldn’t find anything like
this in any of the literature I’ve looked at. We could write a paper on this, or something,” he says, somewhat excitedly.
I move the stack of papers to the side so I can look at my patient files again.
“So… treatment options?” I prompt.
“Oh, right. Yeah, an ICD is… in the air. You do realize we’re going to have to implant a pacemaker too, right? And we could run into the same problems as with the ICD.
“Anyways, our second-line options are drugs. The two main ones we’re going to use here are sotalol and amiodarone; the first is a beta-blocker, the second is the antiarrhythmic we all know and love. Together, they help prevent some of the dangerous ventricular tachycardias from happening.”
This is the first time I’ve ever heard of sotalol, but I’ve heard of amiodarone; it’s used in ACLS protocols for ventricular tachycardia and fibrillation, among other things.
“Oh, and don’t worry. I’ll write this down for you. Anyway, there are going to be a few more drugs we’ll have to prescribe.
“Next drug up is an ACE inhibitor to hopefully slow progression of the disease and reduce the effects of heart failure. I’m thinking ramipril for that. Now, we’re not going to start him on anticoagulants yet; not until his heart fails more. We’re also going to need drugs to manage his post-op pain, so that’s going to be opioids for the next few weeks, maybe something weaker for long-term use if the pain turns out to be chronic.”
Alright. Sotalol, amiodarone, ramipril, and pain meds.
“Is that it?” I ask.
“For now, yeah. We’ll have to see what side effects start happening, of course, before that’s definite,” he answers.
“So, anything else besides drugs?”
“One more big thing for therapy: he’ll have to change parts of his lifestyle around. You know how I said that adrenaline tends to cause cardiac arrest with this disease?”
Yeah, that part sticks out in my head. Mainly because Hisao seemed to nearly panic when I mentioned that to him for the first time.
“Well, as it turns out, it doesn’t
just cause ventricular arrhythmias to occur. As it turns out, adrenaline—or really
exercise I think—seems to aggravate the disease as a whole. Makes it progress faster, manifest sooner, and so on,” he says with a wave of his hand.
“So I’m guessing no more sports for Hisao?”
“Well, most of the literature I’ve read actually goes a bit further and says no strenuous physical activity at all. There was actually a whole study done on this; I think it’s
in the stack, there,” he mentions, pointing to the stack of reports he passed to me.
“Kinda counterintuitive, isn’t it? You’d think exercise would make his heart stronger, but nope, exercise makes it
weaker,” he quips, chuckling slightly.
“On a more serious note,” he continues, “… well, there’s a reason why most of the people who suddenly die with this condition are athletes.”
That dour note in the conversation leaves us both in silence for a couple of seconds. I’m almost afraid to bring this next subject up, but our discussion has been steadily veering towards this for a while, now.
It’s also something I
know I’ll have to convey to Hisao sooner, rather than later.
“Speaking of… death,” I begin tentatively, “what’s his prognosis?”
He sighs, leaning back in his chair. There’s an unreadable expression on his face. He glances at
a few graphs in front of him.
“…honestly? Not good. That’s why I’m pushing for the ICD and also a pacemaker now,” he says. He leans forward, eyes focused on me.
“Ultimately, there are three different things coming together to kill him: sudden cardiac arrest and potential complete heart block in the short-to-medium term, and progressive heart failure in the long run.
“Those first two, the SCA and the AV block, are pretty similar in terms of treatments and timeframes: if we can get
both of those two devices implanted, Nakai should be able to live out a long, though maybe not
full lifespan.
“If that can’t happen, however? Like, if it turns out we can only get
one of those devices in, or if a lead fails or something? Then we’re looking at a 10-year prognosis of 50% for him, or less.”
He pushes
a piece of paper across to me.
“See the top graph, there? Graph A? He’d be in the
control group, for that study.”
I look; he seems to have drawn a line around where the 50% cumulative survival mark would be… and it meets the graph at around the nine-and-a-half year mark. Going by the graph, he’s more likely than not to be dead before he reaches 30…
“If he makes it into his 50s and 60s by some miracle, then he’ll have heart failure to contend with. At that point, the wall thinning will have spread to
both ventricles,” he finishes, leaving me in stunned silence.
…
What? Seriously?
Even though I’m not the one with that dismal prognosis, I can’t help but feel shocked. I didn’t think it’d be
that bad.
I mean, I guess it’s a better prognosis than if he’d had, say, a STEMI. But still, for someone so young…
“…so I guess our only option is to have him go in for implantation again. Or is a transplant an option?” I ask.
He simply gives me a
look.
“Do you know how hard it is to find organs for transplantation in this country? He’ll probably be dead long before he has any chance of getting off the waiting list.”
Oh, right. Damn.
We sit in silence for a while. I eventually bring up the question on both our minds.
“…how are we going to tell Hisao?”
[ Disposition ]
It’s been a week since I woke up from my surgery, and my third week in the hospital overall.
According to the doctors, I’d been in emergency surgery to close holes in my heart that formed while they were trying to implant the device in my heart.
Now everything hurts like hell. Especially my chest. They’re giving me medications to reduce it, but I can’t help but wonder how long I’ll have to keep taking them. Weeks? Months? Years? The rest of my life?
On that note, my thoughts drift to my heart. How long will I have to live with
this, too? Am I going to be stuck taking pills for the rest of my life and hoping my heart doesn’t kill me out of the blue? How much of… well,
my life will I have to miss out on because of this?
I try to watch some television to get my mind off things. It’s really the only thing I can do anymore; I’m not really allowed to walk around, anywhere, since I need to be constantly hooked up to the ICU monitoring equipment.
I eventually land on a channel showing something that isn’t sports, news, or soap operas. It’s an anime… a slice-of-life one, by the looks of it.
After only a few minutes, I can’t help but feel bored. This is just normal life. Why would anyone watch this?
Escapism? They want to imagine themselves in a normal life... in place of their normal lives? Or because their life isn’t normal?
And that’s when a realization hits me.
That’s exactly what I’m doing.
The next few minutes are a blur. I think I panicked and frantically mashed the power button as hard as I could, but I really don’t remember much. My mind was spinning far too fast to pay attention to that.
Am I really ‘abnormal’ now? Am I a disabled person?
Is that who I am, now?
I close my eyes and force myself to calm down, before a nurse comes rushing in to see what’s wrong.
I really don’t feel like watching TV much, after that.
--
A week and a couple of medical scans later, my doctors want me to go in for another try at the device implantation. Apparently, due to ‘complications’ from the previous attempt, I now need
two devices implanted; one to fix my original condition and another to cover for the damage caused by the surgery.
Apparently, I’m going to be completely anesthetized this time around; they don’t want to risk a repeat of what happened last time. They want to make absolutely sure I don’t move during the operation, in other words.
They repeat the same assurances from before: you’ll be able to head back to your old life, you’ll be able to enjoy a healthy lifespan, these two devices won’t be an inconvenience at all, we probably won’t poke a hole in your heart.
I’ve started to tune them out, however. So far, nothing they’ve said has actually happened or come true, and I’m slowly realizing that none of that will probably
ever come true.
I go along with what they’re saying, though, to keep them happy. It seems a lot easier than protesting. Nod as they explain things. Say yes if prompted, or no if it’s a bad thing like sudden death.
I wonder when I started thinking of sudden death as merely a ‘bad thing’. I make it sound like an inconvenient rainstorm.
Your forecast for today is cloudy, with a chance of sudden death. Be sure to keep an umbrella handy!
A voice brings me out of my thoughts. Someone’s asking me something.
“Sir, I’m going to put you under, now. Could you count backwards from 100, for me?”
Sure, that sounds easy enough.
One hundred. Ninety-nine. Ninety-eight. …ninety-seven.
…
Ninety… six…
--
The next thing I know, a full day has passed.
My chest doesn’t hurt any more than normal, which I think is a good sign. There is also a new lump right underneath my collarbone, which I also take as a good sign. It’s hard and about the size of a wristwatch.
My shirt can hide it pretty well, but I’d hate to see how people react when I take my shirt off. My first thought is gym class and the locker room, but if I remember my doctors correctly, that’s something I won’t be doing anymore once I get out of here.
Well, to be fair, my surgical scars would probably be more noticeable than the incongruous lump by my neck. I’m really starting to look like Frankenstein’s monster, now.
Unbuttoning my clothes and inspecting my chest, I can see there’s one huge one running down the center of my chest, looking like stereotypical stitching; a smaller one right above the lump; and several down by my sides.
It’s only when I look up that I realize that Iwanako’s been watching this whole time. She turns bright red and practically runs out the door when our eyes meet.
I hastily button my shirt up again, and she nervously reenters the room after a few minutes.
“If—if you’re, um…
busy…” she starts, “I-I could come back later.”
I should probably be embarrassed, but I can’t find it in myself to care about her insinuation. I’m more worried about my chest, to be honest, though in a different way than usual.
It feels like I’ve exposed a part of myself, a deep and personal portion of myself. It makes me slightly uncomfortable.
We don’t say anything to each other for a few minutes. Occasionally, Iwanako’s eyes will drift over to my chest, up to my heart, then dart away, and she’ll look guilty. And then it’ll happen all over again.
I try to get us out of this awkward silence and stimulate some kind of conversation.
“So, what’s going on with… um, class?” I ask, realizing that I sound like my mom.
“…boring,” Iwanako replies after a few seconds.
I want to bring up that snowy day.
…but I have no idea how. It seems almost impossible; I’d have to get the atmosphere right and segue into the topic and all that stuff, and that just seems too monumental to undertake right now. And besides, even if we did start talking about that… where would that go? What would we actually do, have a date in my hospital room?
I could get a candlelit table, then probably burn to death as I realize that the room air is ninety percent oxygen or something. Or I could try and eat dinner with her—and spill half of it onto my bed and clothes, wouldn’t that be just great?
Or I could sit in this silence, which seems to be just as painful. But it lingers, and eventually, she picks her things up and leaves, as silently as she came. We said maybe all of three sentences in total to each other.
[ Prognosis ]
It’s been about four and a half weeks since Hisao’s been admitted to us. In that time, he’s become stable enough to be moved out of the ICU, and to the cardiac high-dependency unit. The change seems to have done him some good; he’s stopped staring out the window for hours on end, and started reading various books to pass the time.
I open the door to his room slightly to make sure he’s awake. He’s currently engrossed in a book, but he looks up as soon as he hears the door open.
I try to give a friendly wave, then the four of us file into the room: me, the cardiologist, and then Hisao’s mother and father.
The parents take up positions by Hisao’s side, and the cardiologist and I move towards the front of the room, facing them. I glance at the cardiologist for a sign. He nods, and I proceed.
“Hello, Hisao. How are you feeling?”
“Fine?” he replies, warily glancing from side to side at his parents.
I nod at that, and give a weak smile.
“So… today I’d like to discuss your treatment plans from here… and your prognosis.”
His parents seem startled by this, but Hisao looks terrified. Undoubtedly, he’s thinking of medical dramas, stories of cancer patients, and the ‘you have one year left to live’ death knell.
And… well, I can’t say he’s
wrong.
“So, I’m fairly sure you already know about the two procedures Hisao’s undergone for implanted defibrillator and pacemaker insertion,” I continue.
His mother raises her hand.
“Er—we’d knew he’d undergone a second procedure, but… we’re not sure how that went. Someone tried to explain it to us, but…”
I glance at the cardiologist, who shrugs. I’m a bit thrown off by this; did no one actually explain the outcome to any of them? How did we miss that?
Oh well. This is as good a time to go over that, as any…
“Oh, um… so… the procedure was met with mixed success. We were able to implant a pacemaker for your heart, but we couldn’t find a place to put the defibrillator leads without either risking either further damage to your heart or negative interactions between your pacemaker and the defibrillator. In the end, we chose to only insert the pacemaker,” I explain. The three of them nod in understanding.
“I’ll leave explaining your treatment options to Dr. Akimoto, here. He’s an attending cardiologist, here.”
I motion for the cardiologist to take over from here.
“So, with ICD therapy conclusively ruled out, our primary treatment route is going to be medication. For the most part, these will be aimed at suppressing life-threatening arrhythmias and slowing down the thinning of the heart walls. Over the coming weeks, we’ll be working with you to determine a medication regimen that will hopefully reduce the chances of cardiac arrest and heart failure.
“Now, before you came here, did you do any sort of competitive sports or regular exercise?”
His father interjects this time.
“I know he played some soccer, but I’m not sure it was competitive.”
Hisao shakes his head, silently. Non-competitive, then.
“Okay, then. I’m afraid you won’t be able to do that any longer. Putting stress on your heart—for example, through aerobic activities such as running, soccer, and basketball—seems to aggravate this disease, making it progress faster and making sudden cardiac arrest more likely.”
The parents look a bit scared, understandably, but Hisao simply nods glumly; was he expecting this? The cardiologist waves his hands around slightly and gestures for them to hold up.
“Now, that’s not to say you can’t do anything physical,
period. Lighter activities should be okay; your heart won’t fail just because you went for a short jog or swam around for a bit. If it’s not too hard on your heart and it’s not endurance-based, you should be fine doing it in short periods,” he explains, causing Hisao to perk up slightly. Why do I get the feeling he’s only going to care about this part?
The cardiologist nudges my arm a bit, and I take over again.
“As far as treatment goes, that’s all we can do. There isn’t really a cure for this disease, seeing as it’s genetic in nature. Actually,” I add, remembering something, “both of you may want to get screened for this disease as well. Even if neither of you are showing symptoms, at least one of you must have the disease. I further recommend that any extended relatives on the affected side of the family get tested as well.”
The mother looks shocked, and the father’s hand briefly begins to move towards his heart, dropping before either Hisao or his mother notice. I think I can guess what side of the family it runs in, now…
I choose not to bring it up, however. This is better done in a private talk.
Instead, I bring up the other subject no one wants to talk about.
“So, about your son’s prognosis.”
His mother seems to shrink, drawing her hands close to her chest in scared anticipation. His father puts a supportive hand on Hisao’s arm. Hisao looks downcast, but stares ahead at me, regardless.
“Your son, unfortunately, is affected with one of the most severe and, yes,
lethal variants of this disease. The primary cause of death from this disease is sudden cardiac arrest, which can occur fairly randomly. The second major cause of death with this disease is progressive heart failure, which will begin to manifest when he’s 50 to 60 years old.”
There’s the primer. Now for the news…
“However, with cases like yours, where ICDs are not offered or cannot be given… half die within ten years.”
They’re all shocked by this. There’s silence, and staring.
I try to inject some hope.
“Now, that’s not to say he’s hopeless. His prognosis is certainly far better than some other cardiac diseases, and it’s not like his condition’s going to steadily worsen until he’s bedridden and dies. If he’s smart, doesn’t stress his heart too much, and keeps emergency treatment close at hand, he may well live a full life.”
But I wouldn’t count on it, is what I leave unsaid.
[ Progression ]
The days blend into each other, from there.
The bright florescent lights above me are always on. The city is always just outside the window.
The rhythmic beeping of the ECG is always in my ears. The strong smell of antiseptic is always in my nose.
There’s always a book in my hands. I think reading is about all I can do, at this point.
--
I learn a lot more about my condition. Or
conditions, I think—keeping track seems pointless, at the rate I seem to be gaining them.
In the end, I give up on trying to untangle the medical word salad, and pick out the one word that seems to be coming up the most often in relation to my heart.
Arrhythmia.
A strange word. A foreign, alien one. One I don’t want to be in the same room with.
From what I gather, it’s a rare condition. It makes the heart beat erratically, and occasionally it makes the heart beat way too fast; this is often fatal.
It’s congenital, of course. They said it was no surprise, that I was able to go on for so long without anything happening; but they also said it was a miracle that I survived, and that most people with my condition die suddenly without ever being diagnosed.
I guess it was supposed to make me more appreciative of what life I have left, but it doesn’t really do anything to cheer me up.
In any event, there’s a lot of things I have to avoid, now.
I have to avoid hits to the chest, for example. Apparently, this may set off an ‘episode’ inside my heart; I think it has something to do with either the pacemaker or the medications.
I have to avoid strenuous activity, too. This makes more sense; stressing the heart would naturally seem to make it more likely to fail suddenly.
I also have to avoid alcohol (which sounds easy enough), caffeine (which sounds harder), and adrenaline (which sounds impossible). Supposedly, these substances make me more likely to have heart ‘episodes’.
I’ll have to avoid these for the rest of my life because, of course, there isn’t a cure.
There’s only
treatment, to prevent the symptoms.
Which is why I’m staying here.
--
Sometimes Iwanako visits. Sometimes she doesn’t. When she does, we simply sit in silence.
What is there to say? What would we do, make plans for a future that I know won’t happen? Resurrect a relationship that had no chance of survival in the first place? Say words to each other that we already found impossible to force out, what seems like an eternity ago?
I conclude that there’s nothing I can do, here. Eventually, she disappears.
--
Sometimes my parents visit. More often, they don’t. When they do, we sit in silence.
We’re all at a loss. I’m not sure how I’d even get started with trying to comfort my mom, who by all signs seems likely to outlive me. I’m not sure how I’d try to comfort my dad, who seems to have aged 20 years and who now has a strange-looking lump in his chest, underneath the collarbone.
I force myself to be honest, and realize there’s nothing I can do, here. Eventually, they disappear too.
--
My old friends already disappeared a while ago, so I’m left with just myself.
I should probably resent them for leaving, or feel guilty for pushing them away… but I can’t find it in myself to really care about what they do.
I mean, they have things to do and lives to live out, right? And while they go on, I’ll just be… here, I guess. There’s nowhere else I’m going, right?
There’s really nothing else I can do, here.
--
I’m not sure when the realization comes—hours, days, and weeks all feel the same, now—but eventually, it hits me.
I’m
already dead, aren’t I?
Not in a literal sense, obviously. But metaphorically; a ‘death of the soul’, as the literature I’m reading might put it. Ultimately, however, it’s a fairly simple concept to grasp.
Hisao Nakai has, for the most part, passed on. He died, that day, on that snow-covered hill.
His friends and family received the news, they grieved and mourned their losses, they buried him in a sterile, solemn tomb… and their lives continued after that. His parents, and a girl who may have been his lover, came to visit, of course. But eventually, they moved on.
And, left behind, I remain. Like a ghost, or a remnant. Unable to move forward with the whole, unable to pass on fully.
--
The nurses and doctors all start to blend together, like the time; blue scrubs without faces and white coats all alike come and go from my room with regularity.
I suppose if I cared enough to focus and actually look at who they were, I’d be able to distinguish between them and even recall their names. But I usually don’t need to do that.
The routine interactions happen silently: a nurse walks in, perhaps holding some kind of equipment. Sometimes they wave, but eventually they go about their task silently. Sometimes I have to sit or stand up, but I usually know when that has to happen, so I do so almost automatically. Sometimes I have to nod or shake my head to answer questions, but I do that silently too, of course.
Occasionally, I’ll need to give a more detailed response, and when I do the coarseness and unfamiliarity of my disused voice always surprises me.
Sometimes I can see their feelings in their eyes, and catch looks of pity, sadness, resignation, and guilt fairly often. But no matter what they feel, they do their jobs like clockwork.
--
I’m assigned new patients, of course. Work continues. I see the young and the old, the chronically ill and the acutely infirm. I see trauma patients, cancer patients, STEMIs, CVAs and more.
But Hisao remains constant. He is stable.
His condition beyond that, however, is not much better.
Clinically, I can see why it happened. He withdrew into himself, abandoned his support network, and in turn his support network abandoned him. He has nowhere to go, no one to turn to.
And yet, he lives. Even if it is only because we won’t let him die.
Not yet.
Over the course of weeks, we work out his medication regimen; it’s a delicate biomedical balancing act, a series of pills that act and react and effect, and eventually cancel out to, hopefully, leave behind a Hisao that’s slightly less likely to die, and nothing more. No added nausea, no added hypotension, no added hyperkalemia.
It doesn’t all cancel out, though.
His QT interval is now somewhat longer than normal, and he can add acquired long QT syndrome to his laundry list of conditions; there’s no avoiding that when combining amiodarone and sotalol, however.
Sometimes his pain medications don’t work at their normal efficacy, and he’s left with a lingering, distracting pain in his chest.
And yet, if it weren’t for the medical gown and the monitoring equipment… he would look perfectly normal, on the outside.
It’s a bit strange, how someone with insides as messed up as his could look so
normal. But I suppose that’s simply how it turned out.
I try to do what else I can to make him comfortable and improve his potential outcome, though it’s not much.
I order an electrophysiology study and a catheter ablation procedure to try to reduce the severity of the disease, if only for a short while. It doesn’t seem to work, of course: new arrhythmogenic foci seem to crop up within weeks of the procedure, rendering that effort null and void.
I order an exercise stress test, and the results come back dismal. He seems to accept the results quickly, however; probably, because they merely reinforced our initial recommendation of exercise restriction.
I try to find a crack in this disease, something we can exploit to treat it maybe just a bit more effectively, something to use to try and claw out just one or two more years of expected lifetime.
Eventually, I come up empty, and my energies are shifted elsewhere. There are others, I realize, who could better use my help.
There’s nothing more I can do, here. For the most part, I move on.
[ Discharge ]
But, every day I am here, I must make rounds, and I see him, if only for fifteen short minutes. We sit in near-silence, I go over what’s changed in his medications and ask if he’s feeling anything new. Nothing has, so he shakes his head and I leave.
During my short lunch break, however, I overhear parts of a conversation between two of my colleagues from Neurology. I hear something about a school—I catch the name
Yamaku Academy—and I’m intrigued, so I walk over and ask about it.
It’s a school for the disabled, offering a top-notch education and a ‘crack medical team’; apparently, one of our own internal medicine residents transferred there to work as a head nurse after finishing his residency, two years ago. I end up writing down some basic contact info for it.
--
Hisao’s out-of-hospital continuing care plans pose some difficulties. I think it’s in his best interest if we get him out the door as soon as possible, of course. But how?
His medications need to be monitored, adverse effects need to be watched for, his lifestyle change must be enforced, and someone needs to be there if worst comes to worst.
Otherwise, all of this would have been pointless.
A public high school probably isn’t the best place for him to recover, in light of this. Monitoring is nonexistent, complications could arise from the pacemaker, and if another cardiac episode occurs at school, the chances of him surviving are slim.
I pull a piece of paper from my pocket. There’s a name, a web address, and a phone number on it.
--
I make some inquiries and do some research on Yamaku; as it turns out, they’re fully equipped to do intensive outpatient monitoring. This isn’t the first kid with major internal disease they’ve seen, and it certainly won’t be the last.
After a short discussion on the phone, they send over a few transfer forms for Hisao.
--
I wrap up my explanation and introduction to Yamaku fairly succinctly.
“… and that’s why I recommend we transfer your son to Yamaku Academy for the remainder of the school year.”
Hisao’s parents seem fairly impressed by the school, and their curiosity seems to overtake their worry about their son, for a moment.
The father speaks up though, after a minute’s silence.
“Wouldn’t this be hard on him, though? What about his friends at school, and that girl who used to visit him a lot?”
I glance to the conference room door, as if I could look down the hallway, to room 352 and its isolated inhabitant. I sigh, and collect my thoughts.
“… You know your son better than I do, and you’re right to be worried. But, as his assigned physician and as the person who has been overseeing his care for the last three months… well, to be frank, I’m not sure he has those friends anymore, and I’m worried about how he’d resume life at his previous school.”
They’re confused, understandably. How long has it since they’ve been around, again?
“No one comes around to see his room anymore. Even the high-dependency unit nurses seem to have picked up on this.
“And, although I’m not a psychiatrist or any kind of mental health professional… the way he’s reacting to this does not seem healthy. Nor does it seem conducive to patching things up with his former friends.”
They don’t look confused, anymore; instead, they seem guilty. Haunted, perhaps. They must have noticed
something was off, but maybe they didn’t know he was
this isolated?
Given how Hisao reacted when his friends
were coming around to visit, I suspect that he’d merely attempt to avoid the subject—or possibly even
them altogether—for the rest of the year. Or possibly take his bottled-up resent out on them. Or simply mope for the entire year and remain a loner. Or be ostracized by the rest of his class as a ‘cripple’.
All told, his prospects at his previous school do not look good.
Hisao’s parents mull over their choices for a few silent minutes. They briefly glance at each other, after which the mother speaks up.
“Thank you, Dr. Nakamura. I think we’ll have to go and take a look at this Yamaku Academy for ourselves, though, before we make a decision.”
I nod, we all stand, and I shake their hands.
“Understandable. In any event, when you’ve reached your decision, you can simply contact me and schedule another meeting; we can settle any needed paperwork and follow-up then. It’s been nice meeting you.”
--
In the end, Hisao’s parents decide to transfer their son to Yamaku, as per my recommendation.
The paperwork takes a few days to get sorted out, but finally, Hisao’s transfer is finalized.
I hope I got the orders and recommendations section correct in his Yamaku medical file; I marked off ‘Sports’ and ‘Phys. Ed. Classes’ under restrictions, but since I didn’t want to
completely limit his options, I left ‘Other Physical Activities’ unrestricted.
I sincerely hope that’s not interpreted to mean that he can start an exercise regimen, or something.
The rest of the forms were easier to fill out, and there’s only a few other notes I had to add:
“PT must avoid physical shock to chest area to avoid pacemaker lead complications.”
“Acquired LQTS and electrical instability of heart muscles may make PT highly susceptible to commotio cordis
—again, physical shock to the chest must be avoided to prevent induction of ventricular tachycardia or ventricular fibrillation.”
“Medications may have unforeseen side effects in out-of-hospital environment; please report these to hospital physicians at once.”
“Regular checkups should be conducted to assess heart function and electrical characteristics; please record at least an ECG. If possible, an echocardiogram with ventricular ejection fraction measurement should also be recorded. Please report any changes to us as soon as possible.”
[ Bundle of Hisao ]
With all the paperwork complete and all the preparations made, there’s not much more to do, except observe Hisao’s condition and wait as his scheduled discharge draws ever nearer.
It comes, right as he crosses the four-month hospitalization mark.
--
He’s set to be discharged in the morning; it, of course, just
coincidentally seems to be scheduled at the tail end of a 30-hour shift. I’m much more used to it, after four months, but even still I’m sure there’s some tiredness showing on my face.
His parents show up a few minutes before the scheduled time. They’re somewhat dressed up, as if we were going to hold a celebration in Hisao’s room. The thought’s laughable.
The walk to Hisao’s room is short and silent, as always. When we get there, I tuck my patient files underneath my arm and take a breath. I put a weak smile on my face, mostly to mask my fatigue, and step into the room.
His parents fan out, and take their usual positions by Hisao’s side.
I prepare to give him the news, but quickly realize that I need to pull something out of his file, first. I end up spending a bit of time rifling through and sorting the files in my hands. I move the required paper—Hisao’s prescription—up to the top of the stack, set it aside, and sit down on the bed to give Hisao the news.
I look him in the eyes for a moment, and wonder how to start.
--
“Hello, Hisao. How are you today?”
I don’t answer him but I smile a little, back at him.
“I believe that you can go home; your heart is stable now, and with some precautions, you should be fine…”
--
In the end, there’s a young man. The steady fire of life is all but extinguished in his damaged heart, fear and dashed hopes fill his mind, and his eyes look out onto an uncertain future.
And still, he wants to live, once again.
And with that uncertainty, he steps into the sunlight, towards the gates of a school in spring.
[ End of Act 0 ]
