It's Friday and my brother is dying.
I didn’t realize this immediately. There’s been a progression, but I’ve been moving too fast to notice. He was moved to the ICU this morning. Yesterday, they said something may be wrong with his brain. The smell of his failing liver was noticeable; his room started to smell like death. Bad sign, but the concern on the doctor’s face appeared to be managed. After all, just three days ago, he was fine. His skin had a sickly tint, a shade of I need to go to urgent care yellow, but he felt fine. Now he doesn’t.
When illness strikes, it can be remarkably, brutally fast. Yesterday—only yesterday—Jon and I were walking around the halls of the hospital. He joked about how old the transplant ward felt. Not a lot of otherwise healthy 19-year-olds here. He used a walker, but didn’t seem to need it.
Now, at the University of California San Francisco Hospital, I tap a button to open the sliding doors of the liver ICU. I see my brother round the corner. He’s up again. Except this time you could barely call it walking. Five nurses in scrubs surround him, each clinging to some part of his body or the massive automated walker he’s holding onto. He doesn’t want to walk, but the nurses keep telling him he needs to so that he’s strong enough for the surgery. He looks annoyed and tired and weak. And sick. Very sick.
In this moment, like so many others in the blur of the last few days, a thought crosses my mind, one I’ve never had to seriously contemplate before: What if he actually dies?
Four days earlier and across the country, I’m in a Lyft on the way to the Cambridge Apple Store when my mom texts me.
“We are in the ER - jon woke up w yellow eyes and skin and the doctor talked to him about all the symptoms he has been having and told us to get him to the ER.”
Jon is on a gap year, living at home and spending his days teaching guitar and making music. This morning, he woke up early, as usual. He got up and came downstairs to eat breakfast, as usual. My mom, Kristin, was downstairs, making breakfast for my youngest brother Danny. As usual.
Jon was planning on a normal day: working on his album in the morning, a couple of lessons in the afternoon, and an evening at his rock climbing gym. When they meet in the kitchen, my mom stops, startled. Jon is yellow. His eyes are yellow. His skin is yellow, an extreme, abnormal shade of yellow. Describing it to me later, my mom would use the term “obviously fucking weird.”
Jon says he’s tired. He’s been tired a lot recently. Climbing has been harder. He’s been skipping performances at the open mics downtown. No one really thought anything of it, because Jon’s always been kinda sickly. When he was younger, he used to vomit a lot. He has allergies and anxiety and just gets inexplicably fatigued sometimes. Last week he went to the doctor and---like so many times before---they said something nebulous about an infection or a nutrient deficiency and told him he needs to get some rest.
But really, I feel fine, he tells her. They argue. She gets him to concede that being yellow is by definition not fine.
Thirty miles away, Jeff Bunting, my dad, is driving to work from the gym. He is still blissfully uninterrupted in his routine, making the same 90-minute commute on California Interstate 880 to his job at a hard drive company. The monotony is interrupted as my mom calls. She tells him she is on the way to the pharmacy, that Jon is yellow. She thinks it’s because of an iron deficiency, so she is getting him some vitamin supplements.
Immediately, my dad knows it is not an iron deficiency. Years ago, he watched one of his best friends die of liver failure. Towards the end, my dad spent a lot of time with him in the hospital. He knows very well— and he’ll never forget—what jaundice can mean.
“You need to take him to the doctor today,” he says.
She does, and five hours later I stare at her text and feel a twinge of worry. I Google “yellow skin fatigue”. Mono pops up. Ah, it’s probably that, I think, relieved. Mono is not a big deal. Of all the ways for a teenage boy to be sick, mono is objectively one of the funnier causes. I text my mom to let me know when they learn more, and return to getting my iPad’s Smart Keyboard fixed.
When a healthy 19-year-old turns yellow, mono is the only non-severe cause. All the other possibilities run the litany of disorders and infections; the one commonality being that most of them begin with "severe". As the hours at the urgent care clinic drag on, everyone—my parents, Jon, and the doctors—hold out hope that it is mono. Then the test comes back negative.
I get a text from my mom saying Jon going to be in the hospital for a few days at least. That night, the doctors first bring up the possibility of cancer. It doesn't feel real. I spend hours pacing around my apartment, disconnected from everything and worried. I learn that liver cancer has a 31 percent five-year survival rate. For the rest of the night I cannot think about anything else. I’ve been living across the country from my family for almost four years. This is the first time I feel like I made a terrible mistake going to school so far away.
On Tuesday morning, I call my mom and ask if I should come home over the weekend. She asks if I can leave tomorrow morning.
A lta Bates Summit Medical Center feels more like a hotel than a hospital. For one, there’s a reception area. Not the kind of front desk/waiting room combo most hospitals have, but a full-on lounge and check-in desk and couches. This literally looks like a Hilton, I think to myself as I walk in for the first time. I’m tired from a 6am flight from Boston and buzzing with a nervous energy, excited to be back but dreading whatever is to come. My mom comes down to get me and cries when she sees me and I realize how hard this must be for her. I feel guilty that I wasn’t here sooner.
We go up to the room. Surprisingly, Jon looks okay. He’s lying in his unexpectedly spacious hospital room, and the light from the window hits him just so that some of the edge is taken off his yellow tint. Seeing him here is inherently goofy to me. The last time I’ve been in a hospital was when my youngest brother, Danny, was born.
“How are you doing, buddy?” I ask.
“Hey, thanks for coming,” he says, awkwardly. I'm very close with Jon, but like many male sibling relationships, this closeness does not always extend to expression of emotions. I look at my Aunt Lori, who is also here from the East Coast, and think about how strange it must be to be the kind of sick that requires people to come to you.
I catch up quickly: Jon is waiting for a biopsy of his liver, which will determine whether or not it is cancer. He has been waiting for a long time, something we will learn is a core tenet of Hospital Life. There’s talk of a nice night nurse named Tabitha, who is both very funny and intensely strict. The current nurse is neither of those things, I am told. No one likes her. I sit down in the big armchair next to the couch. The Waiting begins.
H ospitals are incredibly boring. But it’s a tedium you feel you should appreciate, because at least it means nothing bad is happening. I spend hours staring out the window of the hospital, marveling at the view of the Bay Bridge in the distance and sort of just wishing I was at home. Nurses come to take Jon’s blood pressure every hour. Eventually, this is becomes the exciting event. I start planning what I will have at the cafeteria for dinner so I have something to look forward to.
Jon spends the day not eating and drinking in preparation of a biopsy that never seems to come. Finally, the Unpopular Nurse comes in and tells us the obvious: the biopsy isn’t happening today. His blood isn’t clotting, meaning it isn’t safe to do anything that could lead to blood loss. They need to transfer some plasma into him overnight. He still can’t eat anything. But now he feels like shit and doesn’t want too anyway.
The next day I’m in the same spot. I’m reading a medical textbook called “Diseases of the Liver and Bile Ducts: A Practical Guide to Diagnosis and Treatment” on my phone.
“Wilson’s Disease is an autosomal recessive disorder due to inheritance of two mutant alleles,” I get through the introduction and my eyes glaze over. I have no idea what the book is saying, but I feel like I am accomplishing something by reading it. Wilson’s Disease is the new working theory of Jon's doctors. Essentially, his liver is unable to filter out the copper that we all naturally absorb through food. If unmanaged, the copper can build up throughout your body, poisoning and eventually killing you. There are fewer than 20,000 cases a year in the United States. It rarely comes on this quickly.
Jon is staring at the wall. He is still waiting for the biopsy. We are alone for the first time since I got here. My mom is in the cafeteria downstairs eating, my dad is at work, and Lori took Danny home for the afternoon. We sit in silence; Jon is in the grips of thirst and doesn’t feel like talking. For my part, I don’t know what to say. I hope you don’t die?
The room’s phone rings. We look at each other, confused about who could have the number. I tentatively pick it up. It's Doctor Rabosky, Jon’s primary doctor. He teaches during the day, so he’s only been around at night. I haven’t met him.
“Is Jon awake?” he asks. He has a very thick Russian accent. I say yes, and introduce myself. He asks if Jon’s parents are here.
“Ah, they actually are both gone right now. I can get my Mom if you want? She’s here, just eating downstairs.”
“That would be good,” he says harshly and I start getting nervous. I hand the phone to Jon and send a text to my Mom.
It’s a quick conversation. The longest sentence Jon says is “No, I understand.” My mind races with all the possible things he may be understanding. I stare at his face desperately hoping for some indication of what is being said.
Finally, he hangs up. “He said they think its Wilson’s Disease. I’m probably going to need a liver transplant. They want to transfer me to the hospital in San Francisco.”
I don’t know what to say. Finally, “Wow.”
“Yeah,” he says, staring ahead.
“I’m gonna...I’m gonna go get mom,” I say. I feel my heart beating fast, I just want to get out of the room.
Running down the hallways to the elevators, past the trendy wooden nurses’ station, I feel guilty for ever feeling bored. Four hours later, Jon and I are riding in an ambulance over the Bay Bridge into San Francisco. He falls asleep. I watch the city come into view as we drive in the darkness across the empty bridge.
J on, what day is it?”
My brother stares pensively at the new doctor, who is a slender, tall man in a blue vest. The nurse with him has a clipboard, and writes something down while Jon thinks. They’ve been asking him a lot of questions like this. One of the symptoms of late-stage Wilson’s Disease is brain damage, something we all just learned when we got here.
“It’s Wednesday, right?”
It’s Thursday. The nurse writes again while the doctor tries to give Jon the benefit of the doubt, “It’s been a long day, you’re probably just tired.” He glances at the nurse. I see a flash of concern. She looks back apprehensively.
Jon catches it too. “Well, it has,” he says, “but I feel like from that look you two just made at each other that you might think it’s in my brain already.”
Jon has become increasingly paranoid that the doctors are not telling him the truth about anything. Brain damage, his liver’s condition, even if he’s going to live. I see the growing desperation in his eyes.
The new hospital is less hotel and more medical facility. The beautiful view of the Bay Bridge is replaced with a brick wall. There’s no couch. My dad stays with him, as he has every night since Jon came into the hospital. The rest of us drive home in silence.
As we get closer to home, we get increasingly urgent messages. They are taking blood, giving him a chest x-ray. Tests throughout the night. Getting him ready for a transplant. They think his liver is failing. My aunt and I start drinking whiskey, not really seeing the irony. Finally: they think it may be in his brain already. And if it is, the damage may already be permanent.
This is the worst moment. my mom locks herself in the bathroom and starts sobbing. My Aunt sits on the couch in the living room and does the same. I don’t know what to do. I don’t feel like crying. I don’t know how to help, which is the only thing I feel like I want to do. I decide I should find Danny. He’s twelve, and I imagine this is hitting him hard.
Danny has Asperger’s. It does not define Danny, but one thing that it does mean is that I am unsure how much of this he has processed. Whenever we’ve been alone, I’ve tried to ask him how he’s feeling. “It sucks,” he said once, “hospitals are really boring.” And he started he taking about YouTube.
I find him in my parent’s room. He’s different now. He’s crying.
“I don’t want Jon to die,” he says. “I don’t either,” I say.
I don’t really know what to say. All of a sudden I feel like a parent who is choosing whether or not to lie about the existence of Santa Claus. I finally go with what I’ve been thinking for the last week: “I really hope not.”
I wake up at 6 am to more bad news. Jon is being moved to the Intensive Care Unit. His test results are getting worse. The copper levels in his blood are increasing. Thankfully, the copper hasn't built up in his brain yet, but time is running out.
We drive fast to the hospital. There’s a 20-minute period in which my dad isn’t responding to messages. We are convinced Jon is dead. He isn’t, of course, my dad just picked an odd time to take a shower. We pull up outside the imposingly grim hospital. It’s cold and foggy out, the kind where you can’t see the street in front of you.
My dad’s eyes are red when we get there and I realize I’ve never seen him cry before. I don’t like it and then I feel guilty for being so judgmental. Jon is moving to the ICU for liver failure patients. We walk down a series of hallways.
Everything in the ICU feels more serious. Jon is hooked up to vitals now; a rope of wires extends down from the IV in his arm and into his gown; the BEEP BEEP BEEP heartbeat monitor is muted. A poster on the wall depicts a large marshmallow-looking cartoon man who stresses the importance of using hand-sanitizer. He has a cape and is called “Anti-septic Man.”
Only two people are allowed to visit him at a time now. To get into the ICU hallway, you press a button that opens the massive automatic doors separating the ICU from the rest of the hospital. Half the time, the door doesn’t open, but there’s a large “DO NOT PRESS TWICE” sign taped above the button. I spend a lot of time staring at the sign and wondering what the proper etiquette is for when the door doesn’t open on the first press. When it happens, I mostly just stand near the door and wait for someone else to push it again. I'm scared that the nurse at the reception desk is going to get mad at me if I press it twice.
Around 2 pm, one of Jon’s doctors comes to visit. My dad is somewhere with Danny and Lori is trying to work in the waiting room, so it’s just my mom, Jon, and me. Doctor Flynn is soft-spoken and disarming. She has a Stanford class ring around her finger. Jon’s paranoia is at the ready.
“Am I getting worse? I feel worse,” he asks.
“Well, I certainly don’t want you to think you are getting worse,” she says, before telling us about the difference between objective measurements—things like test results—and subjective measurements—how Jon actually feels at any given moment. Objectively, Jon is “currently not getting worse.”
She gets up to leave, stepping through the sliding glass doors. Jon’s eyes follow her suspiciously as she stops to talk to a nurse.
My mom gets up to make a phone call, leaving Jon and me alone. Whenever I’m alone with Jon, I feel the urge to ask how he is feeling. I’ve asked him this question at least five times today, so I say nothing and we sit in silence for a bit.
Suddenly, a loudspeaker goes off: CODE BLUE, ALL ON CALL TO THE LIVER ICU repeats over and over. Sitting across from Jon, I can see blurred commotion through the sliding glass door.
“Look up what that means,” he asks, trying to sit up.
I hesitantly pull out my phone, “It means someone is dying.”
“Huh,” he says quietly and lies back.
O ur lives begin to revolve around the hospital. By the end of the day, this new place feels like all there is to my universe. We develop strong opinions on what waiting rooms are the most comfortable. My aunt likes the Liver ICU waiting room, but I’m more partial to the 9th Floor one; it’s more roomy. We complain about people who leave the TV on too loud and debate the best items at the cafeteria.
Jon has a team of doctors now. Twelve people crowd into his room for rounds. A dignified looking man in a lab coat does most of the talking. His name is Bilal Hameed, and he is Jon’s main Hematologist.
“So we are planning to put you on the waiting list for a liver transplant,” he explains.
“Okay, how long do you think it will be?” Jon asks.
“Well, we have some time, if your copper levels drop anymore we can put you on a machine that will filter out the copper for you. It basically does the work of your liver for you.”
Jon is moved to the top of the list. Kristin asks if that’s because he’s young, and Dr. Hameed hedges. “That’s certainly a consideration.”
Later, my dad looks up how the liver transplant list works. It’s not based on age; it’s based on severity. Jon’s at the top of the list because he needs the liver more than anyone else. He doesn’t tell us this until later.
The same day, at a prison in southern California, an inmate has an aneurysm and dies. He’s 27-years old. We don’t know his name. But we do know he was an organ donor, and his liver is healthy.
O n the day of his transplant, Jon is lost in his head. He still is unable to eat or drink. But this time, he isn’t even allowed to suck on ice cubes. He tries to trick the nurses into letting him drink water, but he’s delirious and they are professionals, so it doesn’t work out. When the surgeon comes in to explain the risks of a liver transplant, Jon’s first question is when will he be able to drink water after the procedure. The doctor says around an hour after and Jon rolls his eyes dramatically.
I am convinced Jon is the bravest one out of all of us. Perhaps it is because of the thirst, or the exhaustion, but he has not shown any fear.
The closest he comes is towards the end of the day. My mom asks me to show Jon his phone. He’s barely looked at it since he went to the hospital. There is an avalanche of well-wishes. Friends, family, fellow musicians, people he knew from kindergarten, my high school girlfriend. We scroll through them together. I see he’s crying.
“Are you okay?” I ask.
“I just thought there would be more,” he says.
I count the messages, there’s at least sixty. What more would you want, I ask.
“It’s not that,” he says, “it's just...I thought there would be more. This could be it, you know? I mean, did you tell people how sick I am?”
“I’m trying to, but there are some people I don’t know how to contact.”
“I just, I thought more people would care,” he says. I realize I’d probably think the same thing if I was in his position.
H is surgery starts at 9 pm. There is remarkable precision involved in this timing. When Jon leaves for the surgery room, the liver is still in transport from Los Angeles, hundreds of miles away from San Francisco. It makes the journey on a private plane and then moves immediately into an SUV. The surgery team wants to minimize the time the liver is outside of the body.
“That’s crazy,” I say to my Dad when he tells me this.
“It’s so cool,” he says.
The surgery usually takes between four and eight hours. We make camp in the liver ICU waiting room. No one has any no idea what to do. Lori and my mom go on a walk. My dad and I order pizza from a place that's really expensive and really good.
I’ve never seen my dad so nervous. He paces back and forth through the waiting room, continually telling me that the operation has a very high chance of survival but that it is also the most invasive surgery one can have outside of a heart and lung transplant. Sometimes he sits down to watch the Lifetime Original Movie on the television. He never stays for long. I eat enough pepperoni pizza for the both of us and take an anxiety pill my aunt gave me.
An hour in, a security guard enters the waiting room. She looks angry. The dirty pizza boxes don't help. “This waiting room is closed,” she tells us.
“My son is getting a liver transplant tonight, the nurses said we could stay in here until they bring him back,” my dad says.
“The nurses don’t decide who can stay in what room. We do. We’ve been having a lot of large families staying overnight and it’s really a security risk. How many of you are there?”
There's a big family in the waiting room down the hall. We've talked to them a few times. The grandfather is dying of cancer. I feel a twinge of anger that she just brought them up so callously, like we're all just here because we want to be. “Four of us,” I say.
“Where are the other two?”
“Out for a walk,” I say.
“Okay, well, two of you can stay. The others have to wait in the general waiting room downstairs.”
Suddenly, I feel incredibly angry. “Why?”
“It’s a security risk.”
“Okay, so,” I hear my voice crack pathetically and try to power through it, “my brother is getting a liver transplant and might die. And if he dies, my mom won’t be able to be with us when we find out because she needs to stay downstairs. That’s what you’re saying?”
She suddenly looks very tired, “I...two people, yes.”
“That’s fucking ridiculous.” I feel in control of the situation for the first time in a week. It feels good and I want her to get angrier.
Instead she takes pity, “Listen, if they get name-tags at the security desk downstairs they can come up. It's just hard letting everyone have visitors when big families are all staying in the waiting room. But four people will be okay.”
I suddenly feel deeply guilty. I wonder how often desperate families yell at her for something she can’t control.
“Thank you. Um. I’m sorry I got mad there,” I pause, “your job sounds really hard and I’m sorry.”
She walks out and I wish I wasn’t such a dick to her. When Lori and my mom come back, we sleep on the floor. My dad sits in a chair in the corner and waits for a phone call.
J on’s liver was black and wrinkled. According to the lead surgeon, it probably only had hours left before it failed. But it didn’t. The new liver, fresh and healthy, is now in its place.
“A glass of water would be fucking great,” Jon says to the nurse when he gets back, slurring immensely.
Over the next few days, we all think about how lucky we are. Lucky that Doctor Rabosky knew what Wilson’s Disease was. Lucky that we live in a city with an incredibly good hospital system. Lucky that we have insurance, bosses and teachers that allowed us to disappear fully into caring for Jon.
On the last day in the hospital, Jon loos at my dad and asked him why he got a new liver when so many other people didn’t. What is special about him? Why did he deserve to survive?
There’s not an answer to that question that satisfies him.
Because the patient recovery timelines are based on the senior citizens who are the most common liver recipients, Jon beat all the expectations for recovery. Two months later, he can drive again. The staples are out of his stomach, giving way to a gnarly six-inch long half-square of a scar that will fade over the years but always will be present. The immune suppressant is making his hair fall out in large clumps. He will be on some form of medication for the rest of his life. But he is alive.
And yet, I haven’t been able to sleep much in the last few months. I catch myself drifting; things I usually do easily now take longer. I try to explain the feeling to my girlfriend and the best I can come up with is that nothing feels right. That I feel like I'm still in the hospital, waiting for bad news.
On a chilly late-fall morning, I walk into the Tufts Medical Center in Boston. I’m here to get a litany of tests to see if I have Wilson’s. I realize it’s my first time being in a hospital since Jon got sick. The white hallways, the colorful scrubs of people who live a life in constant proximity to death... all hospitals look the same. I try not to think about it.
I explain my story—as I have seemingly a thousand times over the last few weeks—to the nurse. His supervising doctor comes in to look at my eyes for copper deposits. They take my blood and give me a comically large jug for urine collection, housed mercifully in a tasteful white shopping bag for transport.
There is a 25 percent chance I have Wilson’s Disease. As I walk through the halls of the hospital, I decide I’m not scared of having Wilson’s. What scares me is that I have no control over it.
T he day after Thanksgiving, my family and I drive through Joshua Tree National Park in Southern California. The desert extends all around us, spectacular collections of rocks form massive hills in the distance. We park and start walking towards one of the formations.
It's been a tough trip. I still can't quite get a handle on myself. I wake up in the mornings with my heart is racing. I can tell everyone is on edge, desperate to make the brief time we are all together worth it. Yet we keep getting into stupid arguments, the subtext of which is pretty clearly unmanaged anxiety developed over that horrible few weeks in the hospital.
But as we walk towards the massive cliffs in the distance, suddenly none of that matters. The vastness extends all around us; there's not a building or another car in sight. I feel like I can breathe for the first time in months.
The rocks are smooth. Jon's always been a better climber than me, and recovery hasn't changed anything. He moves significantly higher and faster than me. Straining a little, he manages to summit the top of the rock. He sits down, staring out in the desert.
“It’d really suck if I just fell now, huh,” he says.
I agree. “It really would.”