colour me blue, chapter one (branjie) - holtzmanns
(read on ao3) | (tumblr: plastiquetiaras) | word count: 7422
Vanessa knows as much about the heart as any cardiologist in a hospital.
The four chambers and the valves that connect them. The way that they’re responsible for pumping blood around the entire body, spreading oxygen to where it’s needed the most and keeping the cells alive. How the heart is like the engine of a finely tuned machine, a ticking clock beating out a rhythm that the rest of the body falls into step with.
Vanessa also knows what happens when the heart begins to fail.
AN: This fic started as a drabble to take a break from my WIPs but then turned into its own beast. It was…an absolute process to write but definitely pushed me in ways that helped me grow as a writer, which is always a good thing. CW in this fic for medical terms, hospital stays, uncertainties re: long term illness. I usually don’t like to give away spoilers, but I will say that there will no main character deaths in this fic, just to be clear. Writ is the absolute best - not only for giving me the prompt, but helping me brainstorm, pushing me to keep writing when I was ready to leave this fic in my google drive forever, and being the best encouragement one could ever ask for. They deserve the world <3
Vanessa knows as much about the heart as any cardiologist in a hospital.
The four chambers and the valves that connect them. The way that they’re responsible for pumping blood around the entire body, spreading oxygen to where it’s needed the most and keeping the cells alive. How the heart is like the engine of a finely tuned machine, a ticking clock beating out a rhythm that the rest of the body falls into step with.
Vanessa also knows what happens when the heart begins to fail.
Her dad keels over during Christmas Day brunch when she’s five, clutching the dining room table with a grip that loosens as he falls off his chair and onto the floor. Vanessa doesn’t understand what death means at the time, not really, at his funeral. The fact that her dad isn’t away on a work trip, that he isn’t ever coming back. That he isn’t going to walk in the door one night in his uniform the way that he always does.
That the stone in the cemetery bearing his name is a finality, a marker that takes his place in this world, now that he’s no longer here.
Vanessa is twelve and her lungs feel like they’re clawing their way out of her chest in gym class, when the teacher is making them run faster, damnit. She doesn’t know that she isn’t supposed to feel like she is going to pass out when she jogs, or as if her insides are collapsing inside of her ribs. She’s not supposed to be seeing white spots in her vision as some of her classmates carry her to the sidelines when her body can’t push her any farther. She shouldn’t be constantly lightheaded, grabbing onto tables and bookshelves and chairs just to keep herself upright.
There’s appointment after appointment and test after test, specialist after specialist because Vanessa’s mother is fiercely protective, overwhelmingly worried after their unit of three becomes a unit of two. She pushes and pushes and pushes until they get an answer, but it’s one that makes Vanessa’s mom nearly keel over, too.
It’s genetic. Autosomal dominant. Passed on from Vanessa’s dad, making the walls in the chambers of her heart stiffer, rougher. Keeping them from being able to properly pump blood to where her body needs it the most. Enough to create the possibility of heart failure at any time, when the well oiled machine will simply crumble under the pressure.
Vanessa’s told that she’s lucky that they’ve caught it so early. That this means they can test solutions and try different medications to maybe make it easier for her heart to pump, to reduce the strain that it constantly shoulders. When the medications don’t work it’s okay, really, she’s told, because there are less invasive surgical options. Ones to try that don’t put her under for that long or have an extended recovery period and will allow her to bounce back quickly.
Except that she never does. Her heart never heals, never reaches its maximum potential. Hell, her heart never lets her be a regular person, because it’s breaking down more and more no matter what the doctors do. No matter how many surgeries she has.
Vanessa’s twenty five and has to quit her job because she’s used up all of her sick days, and because getting up out of bed in the morning is impossible when her body feels so weak.
Her mother hopes, prays, lights candles for the possibility that things will get better. That Vanessa will bounce back, that she’ll get to go back to living without having it snatched away from her like it had been from her father.
Except life doesn’t feel like it’s being snatched away, to Vanessa. It’s being dangled in front of her, possibilities that she isn’t quite able to reach because she’s too weak and can’t exert herself because her heart can’t take it, and maybe, just maybe, another procedure will work. Another surgery.
Until she’s twenty six and lying in a hospital bed and in complete heart failure because nothing has worked, and she can’t walk the five steps to the bathroom without the support of a walker.
Because Vanessa needs a new heart.
Vanessa’s been in the hospital for three months and her current nurse on the cardiology floor is making her scowl.
“It’s not going to be forever. Probably just a few weeks. Then when the floor is less busy, they’ll bring you back.” Asia’s trying to explain why they’re moving Vanessa to another unit the best she can, Vanessa knows. Vanessa just doesn’t get why it has to be her.
“I’ve been stuck here long enough. Why are y’all moving me? Why not someone else on the floor?” Vanessa crosses her arms, careful not to tug on the various wires attached to her chest that are connected to the monitors behind her displaying her heart activity.
“Because apparently the universe wanted to make my day harder and give me a headache, like the one that I’m getting from this argument with you.” Asia lightly swats her shoulder before her features soften. “Look. They don’t move people to other floors unless they’re stable. Which must mean that the team needs to keep less of an eye on you, which is a good thing.”
“I guess.” Vanessa grumbles as she says it, because still. Being the one that gets booted off of the cardiac unit because it is too full isn’t a good feeling, not in the least. Instead, it makes her feel like she doesn’t matter to the team, not if they’re fine with pushing her somewhere else.
“Look on the bright side,” Asia tugs on Vanessa’s phone charger from where it’s hanging off of the side of her bed, blending in with the various wires that are protruding from Vanessa’s frame. “Maybe the room you’re moving to will have an actual working outlet.”
“It better.” The electrical outlet closest to Vanessa’s bed is sporadic, often failing to charge her phone when she plugs it in. She uses the call button more often than not to get the nurses to plug her phone into outlets that she can’t reach from her bed, ignoring their muttered comments of that’s not what the call button is for, Vanjie.
“Besides, you get to bond with a new crop of nurses.” Asia fiddles with the monitors above Vanessa’s bed. “Aren’t we boring you yet?
“What are you talking about? I love kiki-ing with y’all.” It’s true. Being in the hospital for an extended period of time can be…lonely. There’s only so long that friends and family will continue to visit, before they realize that the hospital is Vanessa’s new normal. Before they get bored of her.
Before they stop visiting.
But she’s got nurses and therapists close to her age, ones that she’s trying her best to bond with. It’s worked with most of them, especially Asia. The cardiac nurses get her. They’re nice, they gossip with her about their lives and feel like coworkers, at most. Coworkers that give her medication and help her transfer out of her bed and try to keep her alive.
“I’ll miss your ass, that’s for sure.” Vanessa sighs as Asia fiddles with the electrode stuck to her collarbone.
Asia snorts. “Will you miss me prodding your arm at 7 a.m. to take your vitals?”
“Better you than some random whack nurse I don’t know.”
“Hey, don’t be mean to them before you even meet them. I heard the general internal medicine team is nice. Kameron is, at least.” Asia’s voice rises slightly as she says the name, and it piques Vanessa’s interest.
“Who’s Kameron?”
“No one.”
Vanessa narrows her eyes. “That sounded hella suspicious.”
“She’s a friend.”
“A friend, huh?” Vanessa nudges Asia’s side, laughing as she scowls.
“So goddamn nosy. Tell me why the other patients don’t needle me like you do?”
Vanessa grins. “‘Cause I know you love spilling shit too, that’s why. I’ll be sure to say hi to Kameron for you.”
Asia’s cheeks turn slightly pink. “Don’t you start.”
The general internal medicine unit is chaotic.
Doctors, nurses, family members running back and forth between rooms, instructions being yelled left and right, beeping machines that somehow did not seem as alarming when Vanessa had still been on the cardiology unit.
While on the cardiology floor, Vanessa had shared her hospital room with a pleasant enough elderly lady who slept for most of the day. So much, in fact, that Vanessa had never actually spoken to her.
Vanessa’s worried about who they’ll place her with now, as she’s wheeled into her new room. Someone in the throes of delirium who will be up at all hours of the night? Someone who turns the TV up way too high, not letting her sleep? Someone who has too much family that comes to visit, meaning that the room will never be quiet again?
But the girl lying in the bed closest to the window is none of those things. Her hair, albeit mussed, is pulled back into a high ponytail, and her makeup-free face is somehow the most beautiful thing Vanessa’s ever seen.
“Hi.” The girl waves at her, a tentative smile on her face and Vanessa realizes, coincidentally, that she has forgotten the entirety of the English language.
Vanessa’s normally bold, brash enough that she has the confidence to go after girls that she’s into. Except that it’s easier when she’s wearing more than a hospital gown, when she’s standing on her own two feet and not feeling like she’s weaker than a year-old baby.
Vanessa squeaks out something that sounds close to a hi, and wants to groan when it makes the girl’s brow furrow.
“You okay? Not in too much pain, are you? I can call the nurse with my call bell-”
“Nah, I’m fine.” Vanessa mumbles the words under her breath, trying her best to tame the mess of her hair with her fingers as discreetly as she can.
“Okay.” The girl shifts in her bed slightly to face her, and Vanessa notices the way that she flinches in pain as she does. “So, fellow inmate. What are you in for?”
The words make Vanessa let out a surprised laugh, make her feel less wound up. “Got a heart that’s been right messing with me.”
The girl raises an eyebrow. “Why, did someone break it?” Her expression is deadpan as she says it, and it makes Vanessa snort.
“Funny. What about you?”
“Appendix nuclear explosion.” The girl points to her abdomen, and Vanessa’s eyes widen at the sutures that criss cross it. “They didn’t get it fast enough and now it’s a mess that they’re still trying to clean up.”
“Damn.” Vanessa lets out a whistle. “So, Miss App-app-appendick, what’s your name?”
“Appendick?” The girl holds back a giggle.
“What?” Vanessa shrugs. “It sounds right, don’t it?”
“Close enough.” The girl’s smiles are reaching her eyes, and the sight makes the tightness in Vanessa’s chest lessen, if only a little. “Brooke. Yours?”
“Vanessa.” She’s not sure, really, why she doesn’t tell Brooke that her name is Vanjie, considering that most people call her that, anyway. But something about the girl makes her want to hold back on it, see what the girl thinks of her actual name.
“Vanessa. I like it.” A small smile builds on the edge of curve of Brooke’s lip, and for a second, Vanessa feels her regular confidence flow back towards her.
That is, at least, until a nurse bounds into the room, muttering about how it’s about time that Vanessa goes to the bathroom, since she hasn’t had a bowel movement since yesterday, and we can’t have that, can we?
Oh, well. She’ll get her game back, somehow.
Vanessa finds out that she likes having a roommate who’s actually awake for most of the day.
Brooke is fun to talk to, almost enough to sometimes make Vanessa forget that she’s stuck in a hospital bed. Almost. Vanessa learns that Brooke is a ballet dancer, part of the corps and working towards becoming a soloist. She’d been performing in a matinee when her appendix ruptured, managing to hold off from collapsing in pain until the curtain call, when she could safely bend over in the wings without any audience members seeing her.
Brooke’s form underneath her gown is toned, long, looking every part of the graceful dancer she is. Vanessa’s lying if she says that she isn’t mesmerized by the way that Brooke reaches over to grab water from her bedside table, especially with how it’s done with an air of delicateness, lightness.
“What about you? What’s your story?” Brooke’s propped up by pillows, turned on her side slightly when she asks the question. Her grey eyes aren’t cool but rather they’re warm, inviting, waiting for Vanessa to talk.
Vanessa, for her part, pauses.
“Oh, y’know,” she tries to keep her face light, her voice casual, “Some shit happening with my heart. Felt some weird beating the other day and they wanna look into it more.”
It’s a lie, maybe, but she doesn’t regret it.
Ever since she was young, Vanessa’s only been known as the sick girl. The girl who’s always in the hospital. The girl who had missed so much school when she was a kid that she’d had to be taught by a teacher in the hospital. The girl who is unable to keep a job for too long because she has to take off work again and again, days when she’s so weak she can’t get out of bed, other days spent in clinics and at appointments with specialists monitoring her useless excuse of a heart.
Vanessa hates it. Being defined by something that she has no control over, something that she wish could fix itself because it’s taken over way, way too much of her life. For once, just once, she doesn’t want it to be a big deal. Even though she’s in a hospital.
Brooke, for her part, buys it. “Wow. Hope they find out. Nothing too serious, you think?”
“Nah.” Vanessa shrugs. “I’ll be out of here in no time.”
God, she wishes.
“What do you do for work?” Brooke looks at her expectantly and it surprises Vanessa, almost, how fast she lets the subject change, because she’s not used to it. Her friends, her family draw out conversations about her shitty heart for ages, fake pitying expressions on their faces that Vanessa wishes she had the power to slap away.
“Makeup artist.” Vanessa grins when Brooke’s face lights up. “I work at MAC, and got a few freelance clients on the side.”
So what if MAC shifts are far and few between because she’s not a dependable employee anymore? She’s trying. It helps to be in a job where she gets to rest, sit down quite a bit. Her body wouldn’t be able to handle it otherwise.
“Is that why you still have mascara on while in the hospital?” Brooke’s smile is cheeky and it makes Vanessa snort.
“Maybe. Can’t ruin my brand and be fully makeup-free.”
“You’re still cute without it, though.” Brooke winks at her, or at least Vanessa thinks so, and the sight makes her heart do a little flip in her chest. Is she flirting with her? Vanessa can’t tell. But she’s absolutely going to play into it.
“So are you, you tall, leggy model.” The words leave Vanessa’s lips before she can stop herself, but Brooke is grinning, thank god, hasn’t taken them in a bad way.
“Leggy, huh? You can tell even under these blankets?”
Vanessa shrugs. “You can’t get up and show me, so a girl’s gotta assume. How tall are you?”
“Five eleven.”
“What?”
Vanessa’s mouth drops open and Brooke’s laughing, laughing at her, but goddamn. Brooke really is an Amazon.
“Why, how tall are you?” Brooke can’t tell from all the blankets that Vanessa is under, but she doesn’t want to answer, really, not after hearing that Brooke is five eleven.
“Five three.” Vanessa mumbles the words, scowling when Brooke claps a hand over her mouth. “What?”
“You’re tiny!”
“Am not.”
“Practically pocket-sized.”
“I’m tall in personality!” Vanessa huffs and crosses her arms. She’s not that short, she isn’t.
But Brooke’s still grinning. “So tall. Though I do like short girls.”
Vanessa’s brain is about to short circuit. Is Brooke flirting with her? Or is the extended time being cooped up in a hospital bed making her brain go a little bit loopy?
Vanessa normally has game. But right now she can’t do much more than stare at Brooke open mouthed, something that Brooke is clearly enjoying.
“You’ll let bugs fly into your mouth if you keep it open any longer.”
“Shut up.”
They’re eating shitty hospital food for lunch and Brooke is antsy beside Vanessa.
“Okay, what?” Vanessa turns to Brooke because she’s been tapping the railing of her bed for the last half an hour. Vanessa wouldn’t press the issue except for the fact that Brooke keeps biting her lip, clinking her fork on her plate, her eyes all shifty.
“Nothing.” Brooke looks away from her, down at the pasta on her tray that doesn’t appear to be very appetizing, from the way that most of it is still in the bowl.
“Doesn’t look like nothing.”
Brooke bites her lip. “They rounded this morning while you were asleep.”
“As they do every morning at 8 a.m., yeah.”
“They wanna do another exploratory surgery.”
“For your appendix?” Vanessa’s eyes widen. Brooke’s complications must be worse than previously thought.
Brooke pauses. “Hey, look at you pronouncing appendix correctly.”
“Shut up.” Vanessa sticks her tongue out at her. “We’re talking about you right now.”
Brooke sighs. “They wanna see if they’ve missed things. I mean, aside from the first surgery, I’ve never really had any, and I don’t want to go under again. What if things go wrong?”
“Hey, hey.” Vanessa wishes that Brooke were closer so that she could reach over, squeeze her hand. “They do tons of surgeries every day here. They know what they’re doing.”
“But what if this time, they don’t?”
“You don’t know that. But you gotta trust that they do without assuming the worst before it even happens.”
“I guess.” Brooke sighs, and Vanessa wants to tell her, she really does, about the various procedures that she’s gone through as a child to make Brooke feel better, but at the same time…
It’s nice not to be the focus of medical attention for once.
“When are they thinking of scheduling it for?”
”A week.”
“Does this mean I can film you coming out of sedation?”
“What?” Brooke looks over at her, lets out a laugh, the exact effect that Vanessa wants.
“Bet you’ll say hysterical shit.”
“You better not.”
Vanessa grins. “Sorry, didn’t hear you there. Can’t wait to hear all the crazy things you say.”
“Nooo.” Brooke whines, and Vanessa doesn’t want to tell her that she won’t come back to the unit until the sedation has worn off, because her reaction is making her crack up.
“Maybe you’ll spill all your deepest darkest secrets.”
“Absolutely not-”
“Maybe you’ll confess your love for your nurse.” Vanessa holds back a laugh at Brooke’s look of horror.
“Anita’s at least 60!”
“And quite the looker. Hey, maybe you’re into cougars.”
“Ugh.” Brooke makes a face but she’s grinning too, Vanessa can see it. “Definitely not my type.”
“So what is your type?” Vanessa meets Brooke’s gaze with a raised eyebrow, a challenge. Two can play at this game.
“Wouldn’t you like to know?” Brooke wastes no time in answering, winking again, and Vanessa’s definitely not imagined it this time around.
She’s glad that Brooke goes to take a sip of her coffee, so she can try to come up with at least something coherent. Sure, she’s become more used to being Brooke’s hospital roommate as the days go by, but her gay ass sure hasn’t yet.
Vanessa’s cardiologist and physiotherapist and nurse pop into her room one day while Brooke’s asleep.
“Bad time?” Nina’s holding a clipboard, rifling through the sheets in front of her. Vanessa’s known her cardiologist for long enough that she doesn’t have to call her Dr. West anymore. It’s both a great and terrible feeling.
Vanessa gives her a look. “You really think I got anything else to do right now?”
Her physiotherapist, Kameron, snorts, though tries to stifle it under Nina’s gaze.
“Fair enough.” Nina leans against the wall, peeking over at Brooke. “Are you worried about her overhearing? We can move you outside into the hallway if you want-”
“She’s asleep. Doesn’t matter.” Vanessa waves a hand. “So, any news on the waitlist?”
“Moved up a couple spots, though not by much.” Nina’s face is apologetic, and it makes Vanessa want to scowl.
“Why am I so damn low on it?” Vanessa doesn’t want to show how scared she really is about it. She’s been waiting for months, months, unable to do much or exert herself lest her heart give out on her. Waiting for the other shoe to drop and for things to go south. It’s like she’s walking on a minefield, about to step on explosives at any time that will finally take her out.
She wishes it could stop.
“You’ll move up soon enough. These things are dynamic, they fluctuate.” Nina’s words don’t even look as if they’re convincing to herself, which bodes well for Vanessa. “In the meantime, we’re thinking we may trial another medication. We’ll see if it helps with oxygenation a little bit more.”
“Sure, why not.” Vanessa’s resigned as she says it, because really, will it even make a difference? Will anything actually change for the better?
After so many years, she’s stopped hoping. It’s hard to hope when it feels like she has no fight left in her anymore.
Her situation has been the same since before she was a teenager, and nothing’s changed. She’s still living a half life, one that she can’t fully enjoy because she always has the worries in the back of her mind. Ones that keep her away from everything that she wants to be able to do.
But she has to tolerate it. She has no choice, not when her doctors and nurses are walking away, waving at her as they go to consult on another patient. Not when they have nothing left to give to her.
Vanessa and Brooke fall into a routine, of sorts. They binge shows, alternating episodes of Schitt’s Creek and 90 Day Fiancé because they can. They complain about the shitty hospital food, trying to bribe the nurses to get them something better from the cafeteria, a tactic that never quite works.
It’s another week before Vanessa meets Brooke’s family, arriving in a flurry of buttoned up peacoats to fawn at her bedside.
“Honestly, Brooke Lynn, why do you have to work so far away from home?” Brooke’s mother is smoothing her hair, tucking it behind her ears, and Brooke looks younger than Vanessa’s ever seen her.
“I can’t control which ballet company gives me a job, Mom.” Brooke’s eyes are happy, when her sister and her mom pull up chairs at her bedside. It makes Vanessa’s heart tug, just a little.
“Still, I wish you were closer and we didn’t have to take two flights to get here.” Brooke’s mother sheds her coat on her chair. “Though the food they gave us was quite nice.”
Brooke snorts. “You’re the only person who actually likes airport food.”
Brooke’s sister turns towards Vanessa then, and the sudden eye contact makes her freeze. Vanessa hadn’t wanted to bother Brooke and her family; she had wanted to look busy, but it’s too late, because Brooke’s sister is waving at her.
“B, you didn’t even introduce your room buddy.”
Brooke wrinkles her nose. “Room buddy?”
“Hey, it fits.” Brooke’s sister shrugs.
Vanessa finds her voice then, because Brooke’s family looks nice enough. “Vanessa.”
“Nice to meet you, dear.” Brooke’s mom has kind eyes and Vanessa feels a longing in her heart that isn’t being caused by her existing cardiac problems.
“Nice to meet y’all, too.” Vanessa grabs a book from her bedside table, buries her face into it while Brooke and her mom and sister continue talking, trying to ignore the realization that her own mom hasn’t visited in weeks.
It’s not her mom’s fault, it’s really not. Vanessa has to remind herself of that. She gets it.
The fact that her father died of the same thing makes it…eerie. Vanessa feels like a ticking time bomb, one her mom clearly doesn’t want to watch as she slowly reaches end of her timer, when history will inevitably repeat itself. Vanessa understands why her mom wants to stay away and avoid watching her daughter go down the same route. Save herself from the pain as much as possible and instead burying herself in her work.
It doesn’t stop Vanessa from feeling lonely, though.
She misses having people. Having her mom brush her hair out of her face, hold her hand while she’s getting tests done. Be there to listen with her with the doctors spew more and more predictions about how her heart is going to hold up.
It’s not that Vanessa can’t handle the burden, be the foundation on her own. She just misses having reinforcements, strengths around it.
She misses her mom.
Brooke’s mom and sister leave for the night, but not before bringing the two of them McDonalds. The sight of the bags, with the mouthwatering smell from the food inside wafting around the room, makes Vanessa pause.
Technically, she’s supposed to avoid foods with excess sodium, as the extra salt makes her heart work harder than it’s supposed to, wears it down faster. But at the same time, she can’t bring herself to care.
She picks up a burger.
“I haven’t had McDonalds in ages.” Vanessa’s missed burgers, she really has, because there’s only so much bland hospital food she’s been able to take.
“I’m more of a Swiss Chalet fan, myself.” Brooke’s still munching on her burger, but Vanessa tilts her head.
“The hell is that?”
“Food place in Canada. Lots of roast chicken and gravy.” Brooke’s eyes are already getting a wistful, a faraway look in her eyes as she’s thinking about it.
Vanessa wrinkles her nose, because it doesn’t sound that appetizing. “That’s some white people fast food.”
Brooke shrugs. “It’s good. The gravy is nectar from the gods.”
“I’ll have to take your word for it.” No wonder Brooke doesn’t mind the hospital food as much. Vanessa looks over at her, the way she’s tossing back some French fries. “Real nice of your mom and sister to bring me some food, too.”
Brooke smiles, her face all warm and Vanessa’s glad that she has support from her family, at least. “They’re great.”
Brooke pauses then, looking over at her, and Vanessa can tell that she’s figuring out how to word a question. One that Vanessa already knows is coming.
“So, I’ve never seen yours come to visit.” Brooke’s voice is light as she looks down at her food, clearly trying to avoid eye contact. “Do they live far, too?”
Vanessa bites her lip, takes a bite of her burger to give herself time before she has to answer. “Oh, y’know. My mom works a lot, that’s all. Besides, we talk here and there on the phone.”
It’s a lie, and Vanessa knows it, and Brooke does too, from the way Vanessa can see the gears turning in her head. “I’ve never heard you talk to anyone on the phone except-”
“It’s while you’re asleep, drop it.” Vanessa scowls, crossing her arms. She doesn’t mean to snap, she doesn’t, but she doesn’t want to talk about the fact that her mom doesn’t fucking visit and that her friends are too busy with their own lives and settling down and she’s been left behind.
She doesn’t want to.
“Okay, sorry.” Brooke holds her hands up in defeat and Vanessa almost feels bad. Almost. “Won’t bring it up.”
“Good.” Vanessa takes a bite of her burger, chewing with a little more force than necessary, and she wonders why she’s feeling a bit more out of breath than usual.
Kameron knocks on their door while Vanessa and Brooke are discussing the finer points of the latest season of Stranger Things.
“I’m just saying, the ending was a cop out-”
“Was not- ”
“Ahem.” Kameron’s grinning at both of them when Vanessa’s about to talk about the next potential season. “As much as I want to join in this discussion, I gotta take you one after the other for physio.”
Vanessa lets out a grumble that is mirrored by Brooke, and it makes Kameron snort. “Y’all are quite a pair. So, who’s gonna suffer first?”
Vanessa’s mouth drops open when Brooke immediately points in her direction. “Traitor!”
Brooke shrugs. “You snooze, you lose.”
Vanessa huffs but does her best to sit up nonetheless, letting Kameron bring her walker over to the side of her bed.
“Can I ditch this thing yet? I feel old as hell.” Vanessa hates the damn walker. It only serves to remind her of how weak she’s gotten.
“As soon as you can walk the length of the unit without near collapsing on me, it’s gone.” Kameron’s hand is on her back to steady her as she stands. Vanessa hates how much she has to lean her weight on the thing.
“Walkers are for the elderly.” Nonetheless, Vanessa clutches the handles to keep her balance.
“Technically, it’s a rollator.”
“Giving it a fancy Transformers name ain’t helping.”
Brooke’s watching them with a thoroughly entertained expression. “You always this much fun in physio sessions, Vanessa?”
Vanessa sticks her tongue out at her. “I’m a delight.”
“Not sure if that’s the word I’d use.” Kameron snickers, poking her shoulder when she begins to protest. “C’mon, time to walk and build up that strength.”
Vanessa’s drained after one lap around the unit, gripping the handles of the walker with shaky hands and Kameron’s hands keeping her half-upright. By the time they get back to the room, Vanessa’s bed feels like heaven rather than the prison that it usually is.
“You good?” Brooke’s brow is furrowed in concern as she sits up from her own bed, ready for her turn to walk with Kameron.
“Yeah, fine.” So what if the words come out in a slight wheeze? It doesn’t matter. It doesn’t mean anything. “I’m good.”
Except that Vanessa feels like her body’s made of lead, pulling her down, down, down into the earth to never be able to get up again. Not with the way she’s exhausted from just one lap around the floor.
“That tired you out more than usual.” Kameron’s brow knits in concern as she lowers the head of Vanessa’s bed.
“I’m fine.” Still, Vanessa has to close her eyes, catch her breath as she says it. Not a convincing lie.
Thankfully, Kameron lets the subject drop, and part of Vanessa hopes that Brooke’s laps around the floor take longer so that she has a second on her own to contemplate how messed up her life really has become.
“So, she says it’s to match the ‘rainforest’ theme that’s been chosen for the party, right? Well, get this. She goes orange and green. Orange and green! Who fucking wants that for a look?”
Brooke’s laughing at everything Vanessa is saying and Vanessa can’t help the way she preens a little, embraces it. “What did it turn out like?”
“Oh, hideous.” Vanessa waves a hand, laughing when Brooke claps a hand over her mouth. “She looked like a fucking weird snake creature.”
“Oh my god. You’re ridiculous.” Brooke’s giggling, and Vanessa never, ever wants to stop hearing the sound of it. “Are you this indulgent with all your clients?”
“Only the crazy bitches who’d try and fight me if I didn’t do exactly what they wanted. Even if the final look was more scary than anything.” Vanessa pauses, remembering the client, along with every other person she’s done makeup for. “Didn’t want them to speak with no manager.”
“You should do my makeup sometime. It would be fun?” Brooke phrases it like a question, and her smile is tentative, but it makes Vanessa gasp, try and sit up, before falling right back down on her pillow.
“Are you kidding me? Absolutely. I’ll make you all banjie, fit my aesthetic.” She’s excited just thinking about it. Brooke’s high cheekbones, her eyes, her bone structure-
Vanessa’s only ruminating on all of it because of the possibilities for makeup, that’s all. No other reason.
Nope.
Brooke wrinkles her nose. “What’s banjie?’
Vanessa can’t help but grin. “Oh, this is gonna be fun.”
Vanessa makes a mental note to her own body to get its shit together. To allow her to fucking sit up again without running out of breath, becoming light headed, feeling weak. She has a new client, after all.
The attending doctor and resident and nurses pass by for their evening rounds as Vanessa’s describing the kind of makeup look she wants to try out on Brooke. The attending frowns when he looks up at the monitors above Vanessa’s bed, a sight that makes Vanessa’s stomach churn in unease. She hates that look.
“Miss Mateo’s sats are getting pretty low, aren’t they?”
“Hello? I’m right here.” Vanessa stops just short of lifting up a hand, snapping it in the healthcare team’s faces. She hates the way they pretend to talk above her sometimes, as if she’s not privy to conversation about her own body.
The attending pays her no mind, turning towards her nurse instead. “I’d say lets try nasal prongs for the next couple hours, see if that increases her oxygen saturation.”
Vanessa tilts her head slightly, looking up at the monitor behind her. Eighty nine percent. She knows from years and years of being in the hospital that anything below ninety five percent is considered low, and that dropping saturation levels mean that she’s not getting the oxygen she needs, that her heart isn’t doing a good job of pumping the blood to where it’s supposed to go.
She doesn’t want a tube by her nose, though. It would make her look sicker than she already is.
“Don’t I get a choice?” She grumbles the words and only the resident hears her, sympathetically reaching out to pat her shoulder.
“It’s only to help you.” The attending doctor doesn’t even look up as he says it, and it makes Vanessa bristle.
The doctors to round on the next patient without much room for argument, and Vanessa’s nurse is apologetic as she brings over a set of nasal prongs.
“They’ll make you feel better, promise.” Scarlet hands over the tubing to Vanessa so that she can put it on herself, and part of Vanessa appreciates it, that someone at least is recognizing her competency.
“Don’t mean I gotta like it.”
Brooke turns to her as Scarlet leaves the room. “Gotta say, you pull them off well.”
“Don’t you even start with me.”
“Latest fall trend?”
Vanessa snorts in spite of herself. “I know what you’re tryna do.”
“What?” Brooke’s face is the picture of innocence, and it makes Vanessa feel a little bit lighter, with how she’s playing along.
“Tryna make me feel better.”
Brooke tuts. “I’m doing nothing of the sort. Just saying that you’ve started a new couture look. Might have to pick up a pair myself.”
Brooke winks at her, and Vanessa can’t help the small smile that’s growing on her face. “Still. Thanks.”
“I get how it feels, being stuck in here. It’s…not easy.” Brooke bites a lip. “I’m glad it’s you that I’m sharing a room with, and we have a blast, but I feel-”
“Powerless?”
“Yeah.” Brooke’s looking up at her, all traces of previous joking gone. “Like we’re disconnected from everything on the outside.”
“God, I get it.” Vanessa really does. Everyone’s moving on without them, getting farther and farther in life. Working, settling down, doing something with themselves. “Everyone’s doing things while we can’t.”
“At least this isn’t going to be forever. We’ll be back out there in no time.” Brooke’s smile is encouraging, and it makes Vanessa’s stomach turn a little, because Brooke will.
She won’t.
Though she doesn’t want Brooke to know. Doesn’t want her to worry.
“Yeah, we’ll get better before we know it.”
If only.
Their room feels just a little bit too empty to Vanessa when Brooke is whisked away for her surgery. It’s strange - back on the cardiology unit, she had relished the chance to have some peace and quiet. Now, though? She can’t stand the silence.
Their little micro-universe feels like it’s slipping away as Brooke begins to heal. She needs to stay in bed less, being less tired as the days go on, walking more and more with physio.
Vanessa’s happy for her, she is, because being stuck in a hospital bed is not something she would wish on anyone. The mundaneness. The feeling of helplessness. Watching everyone come and go, walking past their room without any inkling of how lucky they are just to be up and moving.
But at the same time, she wishes she was improving at the same rate. It doesn’t feel like it’s going to happen any time soon. Vanessa’s been needing the nasal prongs more often than not, no matter how much she grumbles as she wears them. She gets lightheaded, weaker, without them, closer to passing out the longer she tries to keep them off to prove that they’re not necessary.
Her stupid excuse of a heart is truly testing her patience.
Kameron doesn’t push her to walk anymore, something that makes Vanessa pissed, because she’s still gotta try, damn it. But at the same time, she’s grateful. She doesn’t want Brooke to see how weak she’s gotten. Hell, she doesn’t even want to know the whole scope of it herself. She doesn’t want to deal with it anymore.
She wants things to go back to normal. Well, as normal as they’ve ever been. For Vanessa, normal is being able to walk and talk and work and not be in the hospital. That’s all that she wants.
Brooke is dangling her feet from the edge of her bed one afternoon when they’ve finished a Jeopardy episode. “I’m still hungry.”
“We just had lunch.” Vanessa’s half right, because Brooke had her lunch. Vanessa’s not that hungry.
“You haven’t been out of bed in days. Let’s go somewhere. Let’s grab coffee from the cafeteria.” Brooke’s looking excited by the idea, standing up and slipping on her shoes. Without her walker, since she doesn’t need it anymore.
Vanessa’s only a little bit jealous.
“I’m tired as hell.” It’s not a lie, because Vanessa really is. Except that there’s not a time these days that she isn’t.
“Are you sure? Want me to bring you something back?” Brooke’s question makes Vanessa smile, just a little.
“I’m fine.”
Vanessa doesn’t want Brooke to know that Kameron downgraded her to using only a wheelchair, rather than the walker. It’s embarrassing. She doesn’t want to use it. So, she’s not going to. So what if she’s going to be in bed forever now?
Brooke is unfazed. “‘Kay. I’ll be back.”
She’s waltzing out of the room before Vanessa can even say goodbye, past the four walls that are slowly becoming the only part of the world that Vanessa is exposed to these days.
Vanessa tugs off the nasal prongs when Brooke gets back. Brooke raises an eyebrow as she does, but doesn’t comment. Hands her a muffin instead.
“I wanna get out of here.” Vanessa’s made up her mind.
Brooke takes a sip of her soft drink. “Thought you were tired.”
“I’m always tired. I don’t wanna be tired here.”
Vanessa doesn’t want to have to die while staring at the same four walls day in and day out. A prison of her body’s making, her heart the instigator that’s dooming her to a half, trapped life that may not even last that long.
If this is all she’s going to get, if this is the extent of her future? She doesn’t care anymore.
“Are you even allowed to leave the unit?”
Brooke’s question is valid, but it makes Vanessa scowl, tuck the red bracelet that denotes she can’t under her sleeve. “Doesn’t matter.”
Why should it even be an issue? Why does Vanessa have to spend her already shitty existence trapped where she doesn’t even want to be?
“Pretty sure nursing will ream you out if you try and go.” Brooke’s biting her lip now, and Vanessa’s starting to regret ever roping her into it. Someone who still has an inkling of self preservation left, someone who’s still trying to play within the rules.
Brooke deserves better than her.
“They’ll get over it. Come on, it’ll be fun.” She wiggles her brows, and she can see Brooke’s resolve beginning to break. “We can be like Bonnie and Clyde or some shit.”
“Okay, but didn’t Bonnie and Clyde rob people-”
“Irrelevant.” Vanessa waves her hand before pointing at the wheelchair in the corner of the room, still folded up and unused. Brooke gives in, walking over to grab it and bring it towards the side of her bed. Success.
Vanessa takes a deep breath before attempting to get up. Sure, physio and nursing had drilled the importance of having two people helping her transfer to and from the bed. Saying that she’s a falls risk, that she can hurt herself with the slightest of missteps.
But when Vanessa’s able to get her butt into the wheelchair with just a smidge of exertion, she smiles for the first time in days. Nursing and physio can suck it.
Brooke giggles as she pushes Vanessa’s wheelchair into the hospital’s atrium, past the piano and the front desk and the small garden. “I feel like we’re fugitives.”
Vanessa cranes her neck to look up at her. “Does that make me precious cargo?”
Brooke snorts. “You’re priceless.”
Vanessa can’t help the way that she peeks around the hallways as the walk, eyes out for any nursing from their unit, any therapists or physicians that could spot them and wonder why she’s not on the unit.
It’s fine. She’ll be fine. She can go without her nasal prongs for twenty minutes. She can handle being up in the chair for the length of time it takes to get a fucking coffee.
At least, that’s what she’s trying to tell herself as Brooke pushes her up to the Starbucks.
Brooke’s debating between a London Fog or a latte, and Vanessa’s never noticed, really, how pretty Brooke’s eyes are. How her face lights up while she’s scanning the menu, how delicate her movements are as she goes to pay. Even as a patient in a hospital, Brooke manages to glow. Vanessa’s not sure whether to be jealous or infatuated.
But by the way she can feel her own cheeks heat up as Brooke passes her drink to her, she has an inkling of which one it could be.
Vanessa’s breathless as they head back, dropping her head to rest on her hand. She’s still giggling over the pianist’s song choices in the lobby, and can hear Brooke doing the same as she pushes her chair.
The elevator ride back up to the unit feels final, as if they’re reaching the end of something. Vanessa tries to ignore the feeling and push it away, to focus instead on how she and Brooke had people watched in the lobby, giving every passing by patient or doctor or nurse an outlandish backstory. How Brooke had given her a sip of her drink, taken a sip of hers in return. How Vanessa hadn’t felt like a patient for once, ignoring the aches and pains in her body and the straining in her chest so that she could focus on the way Brooke beamed at her, eyes alight and full of so many possibilities.
Except the lightness in her chest drops, pulling her back down deep into the earth like an anchor as soon as the doors of the elevator open back up.
Because there’s a gaggle of nurses. Doctors. Her cardiologist. Her… mom?
A group of people looking very, very, mad.
Vanessa shrinks in the wheelchair as she hears Brooke gulp above her.
Whoops.
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Iain Hess - phaware® interview 300
In our 300th episode, Iain Hess discusses his lifesaving double-lung transplant he received two years ago on January 17, 2017. Iain is a former pulmonary hypertension patient from Colorado who was diagnosed at age 5.
My name is Ian Hess, and I'm here to share my story.
One year ago, I was standing on top of one of Colorado's 14,000-foot peaks. It was a difficult climb to the top, but overall it was one of the most rewarding experiences of my life. It was something that I'd wanted to do for a long time, but never had the opportunity to, because for 12 years I had lived with pulmonary hypertension [PH]. Doing something like this was just simply impossible. But thanks to my physicians, nurses, parents, people at the pharmaceutical companies, friends, everyone, I was able to do such a thing.
Going back to 2004, two weeks before a planned family trip to India, I was diagnosed with pulmonary hypertension. At the time, I couldn't really comprehend what my diagnosis meant, but the doctors essentially told my parents that if I were to go on a flight pressurized to 8,000 feet, it would be a big mistake. So, 10 days later I had a right heart catheterization, which confirmed that I have super systemic levels and I immediately was diagnosed and had a central line put in and was put on a CADD pump which administered Flolan.
For years after diagnosis, the progression of the disease was constant, but it was not frightening. In a way, it was like boiling the proverbial frog in that I couldn't feel the difference day by day, but overall and after time, my body was taking the damage. There was a lot I could no longer do.
Since I was two years old, my family had started me skiing, but as soon as I was diagnosed I could no longer go to high elevations or do anything of that sort. So initially ,that didn't really affect me too much. But as time went on and my siblings started skiing and my friends started skiing, I definitely felt like I was missing out.
Being connected to a central line and pump obviously had many drawbacks. Number one, it would fail if it got wet. Number two, I had to carry a backpack with the CADD pump in it at all times. This proved difficult when it came to do activities, mainly swimming. I would have to wear a dry suit. For me, that was just one of the biggest pains because swimming was always something that I had wanted to do and always had kind of a passion for. But as soon as I had to put on that dry suit, it just took the fun out of swimming for me.
That dry suit did its job perfectly, but on the few occasions I may have ripped it or something, but water did get in on a couple times, which caused the pump to fail or my Broviac to get wet. Which in many cases, which happened many times, I either had my pump fail, which meant me not getting my medicine, which resulted in the paramedics having to come and do whatever they do.
The worst situation with my central line, overall, was probably when my parents were having a dinner party and the kids were running up and down the house, just having a good time. All of a sudden, my dog took one misstep, stepped on my central line and ripped it right out of my chest, basically causing blood and Flolan to spray everywhere. So, my dad called the paramedics and fortunately they came in time and took me down to the hospital. My dog didn't even bark when about 10 first responders came in just of the shock. In thinking back, my parents had to always be at the ready, so to speak, in case something like this happened because even the smallest situation could turn into a big deal.
Despite many drawbacks, pulmonary hypertension came in handy once or twice during my life with it. Again, once or twice, not often. I would use it to skip a class or turn in an assignment late once in a while. But the biggest positive came from the Make-a-Wish Foundation.
My dream car has always been the Bugatti Veyron. And for those of you that don't know, it was at the time, the fastest car in the world at 267 miles per hour and had a price tag of over $1 million. So, I just loved everything about it. What Make-a-Wish did for me is they sent me to France, to the Bugatti facility in the Alsace region of France in a town called Molsheim. The special thing about this trip, is that it had never been done before, first of all. Bugatti generally only lets their customers on the grounds. So, it was a very one-off experience that I got to have. Yeah, I got to ride in it, which was fun.
Pulmonary hypertension is disease that progressively worsens over time. Like I was saying before, at the beginning of freshman year of high school, I started noticing that walking up a flight of stairs would leave me breathless, gasping for air. You can see in this picture, that my face is very red, number one, due to the constantly increasing doses of vasodilators that I was on. I was also turning a kind of blue color because of the lack of oxygen that I was getting. Basically, at the time I was the color of PH. This is the color of PH.
I dealt with the worsening disease for about two years before my doctors in Denver decided that something had to be done. But what to do was unclear. One option was to pick a transplant facility and go through the application process and then decide based upon that. The other option was to go to St. Louis, Missouri, where they had recently adopted a fairly new procedure in the U.S. called the Potts Shunt.
Essentially what this procedure is just a shunt that basically directs blue blood around your heart protecting it. After visiting various transplant teams, my family and I decided that the Potts Shunt surgery was the best option for me. I can say now that picking St. Louis was the best decision of my life.
During the summer of 2016, my parents took all three kids, both my siblings on a European trip for six weeks. We went to the U.K. and saw family. We relaxed on the Coat du Soir in the south of France and went to various art exhibitions in Italy. Little did I know at the time, though, that my parents had planned this trip out as it may have been our last together. This was the calm before the storm.
I went back to Colorado and then immediately my mom, my dad and I drove to St. Louis. Initially it went pretty smoothly. I had a quick but extremely painful recovery. The incision that my doctor, Dr. Eghtesady had made was called a thoracotomy. It was about a six-inch incision vertically up the left side of my back. In doing the incision there, he had to cut through tons of deep muscle, which just turned out to be extremely painful. So, I was on Oxycodone for months and months afterwards.
The following months after the surgery, unfortunately, proved to be as hard on my body as ever. On one day, October 27, 2016, my memory started fogging up. It was a strange experience, because I couldn't remember, for example, what had happened 20 seconds prior. It was all just a foggy day and it's hard to explain. After that day, I woke up and I felt horrible. I felt the sickest I had ever felt before. I called my dad home. He got home and we checked my oxygen stats and sure enough, they had dropped to an all-time low of 75%.
We quickly took the car down to Colorado Children's Hospital where my cardiologist, Dr. Ivy, unfortunately found out that the Potts Shunt had not worked properly. I was too late, basically. At that point, the only option that I had was to go back to St. Louis to have the double lung transplant.
Two months went by and it was departure day. I exchanged emotional goodbyes with my friends at school and then later with my brother, sister, and mom. Then, my dad and I got in the car and took off for St. Louis. I can remember sitting in the car, looking back at the sunset over the Colorado Rockies and thinking man, I really hope I see this place again.
For about the first month in St. Louis, I had just constant appointments. Once that was done and out of the way, we were just kind of sitting in my apartment for two months and I was bored out of my mind. I accepted it, as even the slightest activity would completely wipe me out. I ended up staying in my apartment, basically just watching Netflix or playing video games. Because at that point, I was living a miserable life, effectively in prison by a failing heart.
When your body is fighting to survive, then there's no energy for you to actually live life. Your mind loses hope and your survival instincts turn on. You lose your sense of empathy for others and focus your energy on staying alive. You start to eat less because your body is physically shutting down. You know that somebody has to die for you to have a chance to live, and frankly and morbidly you wished for that. It's a depressing thought, but it's frankly the truth.
After about two months, of waiting on January 17, 2017, I got the call, a new pair of lungs were on their way in. The day they called me into the hospital was a day I'll never forget, I was just sitting in my room in the apartment, my parents in the room across from me, and all of a sudden, I heard commotion in the other room. I thought, what's going on? It's like 12:00 at night. Then, all of a sudden, my parents came into my room with a video camera on saying that a pair of lungs had been found and that we had to be in the hospital by 2:00 AM.
I got super excited, obviously. I got dressed, I got my shoes on, I got ready to go. I went into my parents’ room and they were still in bed. I was like what are you doing? But they had thought, and rightfully so, that the next couple of days they would be getting no sleep, so they wanted to get a little bit more sleep before we finally went in.
We ended up making it out of the apartment by 2:30, and I thought we were beyond late, but it turns out we weren't really. When we entered the hospital, we found the cardiac floor and they told us to go up, where I was initially met by my first nurse, Alyssa, who put an IV in me and basically told us the same thing, just get some sleep because the next couple of days were going to be extremely long.
Then the morning of the 17th, doctors made their rounds. Basically preop was initiated from the moment I woke up. Various units of the hospital stopped by and then around 12:00 PM they wheeled me to the elevators where I handed off my glasses and gave my parents final hugs, not knowing if it would be the last. Then we went down. The anesthesiologist took me up to the sleepy drugs and that was it.
What happened during the next month and a half are virtually nonexistent. Well, they are nonexistent from my memory. This was due to obviously the many sedative medications that I was on, and I can only recall what my parents have recounted.
Although the lungs were perfect on arrival, I ended up being on the slab for about 17 hours, because the doctors couldn't stanch endless bleeding. During that time, two massive blood transfusion protocols had to be called in, which means it's 50% of your blood replaced over a period of four hours. Only when they could stop the bleeding, which turned out to be about five days later, could they close my chest up. That was really the first battle that I faced during that time.
Soon after this, I was put on ECMO and dialysis because my kidneys had failed. After that, I had pneumothoraxes, ICU delirium, strokes, a seizure. I had vagal nerve damage, which is just basically damage to [the] area around your throat. So, I was not able to talk for a while. I also had something called neuroleptic malignant syndrome, which is a reaction to a specific kind of antipsychotic drug, which basically shot my temperature up to 107 degrees. At 107 degrees, you're very close to melting your brain. And the doctor had actually comforted my mom by telling her that the brain only melts at 108. It was an intense 48 hours of ups and downs, constantly being refrigerated and unheated. Fortunately, I don't remember any of that.
Looking back, my life has been a roller coaster of ups and downs, never knowing when you're going to rise and never knowing when you're going to fall. When I was initially diagnosed, I didn't understand what my life was turning into. Over the years as I grew and gained maturity and awareness, I also lost a lot of hope for the future. I didn't know how long I would live, but that's just something that kind of grew a part of me and I still have that mindset to this day.
At end stage pulmonary hypertension, when my body was dying and my mind weakening, I never gave up. I just kind of accepted each day as it was. In the end, I made it through. The nurses provided miracles, the doctors provided miracles. My friends and family provided plentiful support. In the end, no one knows how long they will live for. So, my overall mindset changed through this process. I kind of asked myself why do I need to rush through life so quickly? I came to the answer -- you don't.
Listen and View more on the official phaware™ podcast site
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