Peri-Code

Day 1: He wakes up from surgery. The last time he was awake, he arrived at the hospital having a massive heart attack. He signed the consent forms, chewed up 4 baby aspirins, gave his arms to nurses to put in multiple IVs. And while he was still awake, they threaded catheters from his groin to his heart, seeking to open up his vessels. Which they said they would. Which we did. But, at some point after that, he didn’t get better. He was still alive on the table, but his heart, which was no longer actively dying, had been hurt badly and wasn’t yet working on its own. Yet. So, And we put it in the consent form and we’re sure it was technically mentioned as a technicality, they put him to sleep and inserted a pencil-shaped machine into his chest to perform the function of his heart. Just until the heart improves enough to work on its own. They closed him up, sent him up to the ICU, and he woke up there, tethered to a machine that was keeping him alive, for now.

Day 2: Phew, he got through the worst of it. He feels awake. He’s an active guy: active physically, active in his community, and active intellectually. But no one feels good in the ICU, of course. His machine is set to level 8. His heart is barely beating, but he feels good because the machine is doing all the work.

Day 3: He hadn’t planned to have a massive heart attack, of course, so his life isn’t arranged to accommodate his sudden absence. He knows he has to stay and heal. His pastor goes to his house to feed his cat.

Day 4: His brain is awake, he is awake, he is bored. His body is tired but his brain is trapped. Can someone get him a laptop? Social work will come to find out if that’s possible

Day 5: Sorry, social work will come today to see if that’s possible

Day 6: Social work will come we promise

Day 7: Congrats! You’re a week out from your heart attack and a week out from getting the machine! We know it’s been a rough week (sorry social work didn’t come until today), but it’s probably been enough time for your heart to heal, so let’s turn down the machine and see what you can do on your own!

Day 7.5: Oops, never mind. His brain has been muddy for several hours now because his heart couldn’t get enough blood to it. And now his kidneys are bruised, too. We turned the machine back up. Sorry about that. Good news! Social work got you a laptop. But he sleeps the rest of the day, too foggy to type

Day 8: They say it was a fluke. He learns they won’t push it today because now his kidneys need a chance to recover too, just like his heart. Physical therapy comes by. He doesn’t work with them. He’s tired from yesterday. He needs to go home. The pastor is feeding his cat but who is paying the bills?

Day 9: Hi good morning, you really need to work with physical therapy to get stronger. We know you’re tired but this is how you get better.

Day 10: His heels hurt and ache and press and burn. He’s tired of the boots he’s tired of sitting up he’s tired of lying down he’s tired of the cushioning pads. Sorry sir, the way to make your heels feel better is the boots and sitting up and the cushioning pads. Did you do physical therapy today?

Day 11: He does physical therapy. He wears the boots. They turn down the machine again. His heart and brain and kidneys turn off again. He’s tired.

Day 12: He feels better today, enough to ask if he can go home to settle some things. He has bills he has papers he has a life. Can he please go home, just for an hour, just to grab a few things and do a few things? He can’t. He doesn’t actually have a heart. He can’t leave without his machine, but he can’t leave with it.

Day 13: Can

Day 14: He

Day 15: Please

Day 16: Go

Day 17: Home.

Day 18: The pastor comes to the hospital. His heart isn’t working and it’s not getting better. The machine was only supposed to stay in for a week. He needs a different machine if he wants to have a heart. And he needs a heart to be alive. It’s a big surgery. He will need time, money, and help. Lots of help. He helps people for a living, but does he have people to help him live? He can’t go home alone. Oh you live alone? You can’t. You need help. The options:

1. Surgery. Machine. Heart. Life. Months of recovery. Therapy. Help. But in a few months you won’t need help. You’ll just need a big backpack to hold the battery that runs your heart. But right now you need help

2. They can make it so it won’t hurt. But they’d turn off the machine keeping him alive. He might be able to go home, not sure for how long, but he might be gone too soon to see that.

We can give you time. We can give you resources and counseling. We can connect you to peer support. But we need to know what you want.

Day 19: What

Day 20: Do

Day 21: You

Day 22: Want?

Day 23: And why did you refuse physical therapy? Don’t you know you need it to get better? (You’re not getting better, why not?)

Day 24: The surgeons talk to him. He still isn’t sure he wants to go through with it.

Day 25: Financial services approves full coverage for the surgery

Day 26: He has a CT, MRI, and echocardiogram

Day 27: He’s making up his mind, he might do it

Day 28: Sorry, the scans showed you’re actually not a candidate for the surgery. Thanks for considering your options. You actually didn’t have any.

Day 29: He uses the laptop they gave him to finish a grant proposal. He writes to the city asking for money to house the homeless. He likes to support his community. Maybe his heart is broken and his heels have bedsores, but he can still help people.

Day 30: We need to wean the machine. (This will kill you). Can we do it today?

Day 31: We understand you need more time

Day 32: Can we do it today?

Day 33: Thank you for letting us wean it today. Today we will go from 8 to 6. Wait, you want us to stop? You want to turn it back up? (We understand it makes you feel bad. Dying makes you feel bad.)

Day 34: Ok we can let you rest

Day 35: We will wait to let you die until you have your affairs in order. (But you can’t go home to put your affairs in order)

Day 36: (There’s always more patients needing beds)

Day 37: And your affairs, are they in order yet?

Day 38: Do you want to talk to social work about your affairs?

Day 39: (We can’t keep going like this much longer)

Day 40: Can we do it today?

Day 41: From outside the room, he hears them talking about him. They want to sedate him so they can turn the machine off. They know he doesn’t want to die. He hasn’t gone through the stages of dying yet. But he can’t stay alive. He’s not really alive, is he? If they and their machine are the only thing keeping him alive, is he alive? But every time they try to let him die, he doesn’t want to. They want to sedate him while he dies so he can’t ask them, again, to stop doing it, to stop making him die, today

Day 42: He doesn’t want to die, but that’s the only way forward. Palliation. Titrating vasopressors. Weaning the machine. Letting his body fail, the way it has been failing the whole time, just hidden by the machine

Day 43: His

Day 44: Heart

Day 45: Has

Day 46: Failed.

Day 47: His pastor comes. His affairs are not in order. His house is not in order. His heart is not in order. His pastor will clean up the mess. His grant is pending. His cat is fine. He will die.

Day 48: He

Day 49: Will

Day 50: Die.

Day 51: He

Day 52: Will

Day 53: Die.

Day 54: he

Day 55: will

Day 56: die

Day 57: he