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🫁
“Creon, Calcichew, and Flucloxacillin,
Vitamin A, Septrin, and Tobramycin,
Ferrous Fumarate, vitamins, Penicillin,
Hypertonic saline, Dornase, and Colamicin…
I've got Cystic Fibrosis.
I've got high levels of salt in my skin,
and as days go by my bones are getting thin.
See I've got Cystic Fibrosis…”
🫁
Frank climbs out of their bed at exactly 12:32 am every single morning — the digital clock on Robby’s nightstand being his timekeeper.
The mattress rocks as he shifts his weight, and he freezes for a beat, breath held, listening; he’s already a vestigial organ to this relationship, he doesn’t need to be the reason anybody wakes up when they don’t want to. But Robby’s still snoring away more often than not: deep and nasally, with the occasional pause that makes Frank want to buy him a damn CPAP and encourages Jack to whack Robby across the furry gut. The undulating jiggle always makes Frank laugh.
He could just go. He tells himself that every night. He lies to himself with reckless abandon about it. He could just disregard the feelings, the way he used to; back when slipping out before dawn felt clever instead of just cruel. Frank doesn’t believe in love anymore; he believes in fucking. He believes in liking the people he fucks. He believes in the simple carnal physiology of bodies wanting to be with other bodies. He wasn’t supposed to care this much. He wasn’t supposed to fall in love with them. But he couldn’t help it.
He lingers, when he really shouldn’t.
He takes a minute, sometimes two, just to let himself touch. His hands move over Robby’s big, broad chest, fingers tracing the familiar terrain even though he already knows it by heart. His thumbs bounce over those bumpy pink nipples and cup the sagging flesh below. He traces the dark, wiry hair that he could identify blindfolded and the grays that have only spread over the last two years together. He winces at the sight of his rounded fingernails against Robby’s solid arms. Memento Mori along one arm, Amor Fati along the other. His clubbed fingertips are little reminders of why he can’t stay. He knows what he is, what he’s meant to do here. They wanted a hot young thing to spice up a relationship as old as dirt. He wasn’t supposed to fall in love with them. He wasn’t supposed to be dying. These old fucks weren’t supposed to be outliving him, but here they are. They know he’s sick, they do, but they’ve never lived with someone with CF before, nor seen it first hand — Frank languishes in the abstract.
Robby stays asleep, just like he always does. Jack is the light sleeper, the one whose brow furrows and shoulders twitch if Frank moves too fast. More than once, Frank has had to gently tuck him back in with a few pats on the ass and soft nothings to settle him back down.
He pads softly through the condo, bare feet silent on the cool tile, gathering up his scattered clothes: socks from under the couch, his shirt slung over a dining chair, jeans folded over the arm of the recliner. He thinks, not for the first time, that he looks like a buck-an-hour hooker in reverse, collecting evidence instead of leaving it behind. He retraces the steps he’s walked so many times before, paths etched into muscle memory, but never in daylight. In daylight, this place clearly belongs to someone else, a pair of somebody elses. He isn’t their boyfriend, he’s their lover — their good time boy.
Everything smells like Robby’s fancy cologne and Jack’s crappy shampoo, like mud tracked in from the walk to work and melted candle wax from whatever half-burned thing is on the counter this week — Jack has a candle-of-the-month box that arrives like clockwork. Frank pauses by the kitchen window for half a second, looking out at a sleepy Pittsburgh, then moves on. He stops to kiss Lexi — Lexapro, officially — on her not-so-furry forehead, a little rescue sphynx who lifts her head and lets out a happy little pirrup, already long accustomed to this quiet goodbye. Frank scratches behind her ears, just once, then grabs his bag and slips out the door, careful with the lock.
Outside, the night is cold and sharp, instantly making his eyes water and his lungs complain. He jogs down the steps and sets off toward home, the city mostly empty at this hour. His walk takes about half an hour, and he knows every crack in the sidewalk, every streetlight that flickers, every corner where the smell of garbage briefly overwhelms everything else. His breath fogs in front of him, his joints complain and his thoughts wander where they always do, circling the same questions without ever landing. He is wheezing by the time he hits the Barnes and Noble on the corner.
His place is always so much darker when he arrives.
It’s his second year of having an apartment to himself after the divorce, and the novelty wore off faster than he’d expected. Robby and Jack’s condo feels lived-in, messy, and full of life. There are pieces of them everywhere, pieces of their lives together. Fuck, Frank’s looks like he’s on hospice. His pill organizers cover the kitchen island, his afflovest is draped over the couch, his oxygen shit is set up by the window and his nebulizers and assorted gear crowd the coffee table. His med cart is full of his injectables and what he needs to care for his PEG and port; the bags of saline and boxes upon boxes of feeds aren’t too far away.
He throws his bag down on the couch, kicks off his shoes, and starts what’s become his dawn ritual — five hours of back-to-back treatments. His chest feels heavy, viscous, the overnight accumulation already pulling him down. He’s heterozygous when it comes to his CF mutations, which makes for a complicated genetic picture. He has R347H and D979A, which mean his chloride channels are structurally present but functionally inactive, folding just well enough to escape degradation and just badly enough to be useless. No modulator therapy has ever made a measurable difference. His sweat chloride stays high, his FEV1 never budges in a way that matters. He immediately rolls onto his side and coughs, deep and productive, diaphragm pulling down hard. His sputum bursts out of his mouth like a rocket thick and pale yellow this morning, streaked faintly with green — just chronic colonization. He spits into a tissue, already thinking in differential terms. He’s his best pulmonologist: baseline Pseudomonas aeruginosa versus an early flare of Stenotrophomonas. But he’s had no fever and no pleuritic pain; he’s got a baseline infection at worst.
Eventually, he hauls himself upright, nebulizer compressor bouncing on the table like a small generator. He inhales mouthfuls of albuterol, then the hypertonic saline, 7%, the salt burning slightly as it draws water into his airway lumen. His acapella is next, the oscillatory PEP device that vibrates some of the bigger, thicker chunks of mucus out. He leans forward, elbows on knees, his posture tight. Five minutes, then cough. Five minutes, then cough again. His Sprite bottle of crud fills gradually with juicy chunks that make a sound as he horks them up. It’s dornase alfa next, it’s recombinant DNase cleaving extracellular DNA from neutrophil debris, reducing viscosity at a molecular level. Then his vest, the one that he knows isn’t all that great according to new research, but refuses to do without it, he wraps it around his torso. The machine inflates and deflates in programmed percussion cycles, rattling not just his lungs but his teeth. Between cycles, he coughs until his eyes water and his ribs burn. He swallows pancreatic enzyme capsules with another protein shake the minute he’s free, lipase and protease replacing what his pancreas can’t help him with, the fat-soluble vitamins follow: A, D, E, K. His weight is stable but only because he’s on top of his shit. Otherwise, he’s toast.
But of course, the minute he’s ripping the paper off a fresh bottle with his teeth — his phone lights up in his lap. Still, he answers immediately, he knows who’s calling. He taps the screen with saline-damp fingers, and her face fills the display. Abby’s already long awake, her braids pulled back, wearing the soft, worn Boston hoodie she always uses for early mornings, the one he’s pretty sure used to be his. The camera angle shifts, and Tanner comes into view, his small shoulders swallowed by the orange pediatric vest that pulses around his chest. “Hey, T-man,” Frank coos, internally wincing at the roughness of his voice.
“Hi, Daddy,” Tanner replies, five and sleepy. Abby adjusts the tablet and sets it down so Frank can see properly. “We’re on saline,” She reports quietly. “Albuterol went in fine.”
Frank nods; Tanner has the R347H mutation from him — a mildly dysfunctional CFTR protein that gets to the membrane but barely conducts chloride at all — and the 3120+1G>A splice-site mutation from Abby, which results in a truncated, nonfunctional protein. It’s a classic severe combination, one not responsive to modulators, just like him. “Any coughing overnight?” Tanner shrugs, then coughs on cue — a wet, rattling sound that makes Frank’s chest tighten up. It’s productive, though, which is good. Abby hands Tanner a tissue and encourages a huff cough, she’s learned the physiology of their disease as well as any respiratory therapist — most of it from him.
“Color?”
“Yellow-clear,” Abby replies. “No blood.”
“Pen didn’t wake up?”
“Nope, she's snoring.”
Their daughter, Penelope, carries his D979A mutation, a missense variant that alters CFTR channel gating but doesn’t abolish function when paired with a normal allele. Sweat chloride borderline at birth, normal pulmonary function since. She’s a healthy carrier. Tanner’s nebulizer sputters slightly, then resumes. Frank frowns. “Make sure you tap the chamber,” He sighs. “It can clog with hypertonic if it cools.”
“I know.”
“Daddy, I don’t like the salty one,” Tanner sniffles, face scrunching.
“Hey, T.” Frank huffs gently, trying to get his own crud to budge. “It burns because it pulls water into your lungs to help the mucus move. It’s helping you, baby.”
Abby watches Frank closely through the screen. She knows his tells — the slight flare of his nostrils, the way his jaw tightens when he’s suppressing a cough. “How are your lungs?”
“No fever and peak flow’s holding.”
She doesn’t push. She never does. They learned long ago that there’s a line between care and intrusion, and they balance on it carefully. Abby disconnects Tanner as his cycle ends, moving smoothly into manual chest physiotherapy. Frank mirrors the motions unconsciously with his free hand, even though his own vest is doing the work for him. He can see exactly where Tanner’s secretions are pooling by the way the cough sounds — right middle lobe, likely. “You’re doing great,” Frank coaches. “Remember, big breath in, hold for three, then huff it out.”
Tanner obeys, round cheeks puffing out, then coughing again.
“Mama?”
Abby glances up. “She’s up.”
A moment later, Penny bounces into frame, dragging a stuffed dinosaur. She squints at the screen and for a second all Frank can see is a pink bonnet. “Daddy?”
“Hi, princess.”
She presses her face close to the camera, examining him. “You coughing too?”
“Yeah, just like Tanner.”
She nods and disappears from his view. Tanner fills it as he sits up, chest rising easier now. Abby wipes his face and checks the pulse ox again. Ninety-five, way better than when they started, and way better numbers than Frank has seen in years. “He’s doing great, Abs.” He hesitates just a fraction of a second, then pushes on, “You know the gene therapy trials are moving fast: there are next-gen vectors, mRNA delivery that doesn’t rely on CFTR folding the same way, and even nonsense-agnostic approaches. He’s young. He’ll get on a good drug soon, I know it.”
Abby doesn’t say anything at first, she just sets the kids down at the table for breakfast and presents Tanner with his extra cup of applesauce full of crushed enzymes. “Mm-hmm,” She sighs softly. “Yeah, I know all that.”
“They’re already working on delivery systems that bypass CFTR altogether. Ion channel replacement, epithelial editing. Tanner’s genotype — R347H plus 3120+1 — there’s a lot of interest in that splice-site correction work. Antisense oligos, CRISPR-based exon skipping—”
“Frankie.” She’s leaning against the counter now, arms crossed, weight shifted to one hip. “How bad are you feeling right now?”
“I’m okay,” He grunts automatically, they aren’t talking about him right now.
“Frank.”
“I’m tired,” He admits. “But I’m managing.” I won’t see them grow up, Abby. But they will grow up.
Abby doesn’t let him off the hook, she never has. “You always are,” She shrugs. “Until you’re not.”
“Don’t.”
He hangs up after a few brief goodbyes and after five full hours of treatment, his lungs feel marginally better. Workable. His oxygen saturation sits at about 92% on room air, his personal best. He listens to his own chest with his stethoscope, hears the diffuse coarse crackles, the faint wheeze in the right lower lobe that has been there for years. No reason not to work. He showers quickly, steam loosening what the treatments could not. He yanks on his scrubs, grabs his VOG masks to wear under multiple disposables, and leaves for the hospital with the faint taste of saline still cloying in the back of his throat.
🫁
Frank blames it on chronic bronchitis first, to explain his persistent, mucus-producing cough, later, he adds asthma on too, because asthma is tidy and straightforward and explains the inhalers he sheds wherever he goes. “Bad lungs,” He shrugs once, tugging on a scrub top over his ever-present tank top as he moves through Robby and Jack’s bedroom. “Chronic bronchitis and asthma.” The tank top does a lot of the heavy-lifting too. He changes in bathrooms, in the dark, with his back turned. His port-a-cath is easy enough to hide, with angled shadows, fabric pulled just so. His PEG tube takes more effort, taped down carefully, concealed beneath the soft cotton. Eventually, he admits he has CF. But it never goes deeper than that.
They don’t want to see the extent of how sick he is; so they don’t.
Frank’ll be leaning against the kitchen counter while Jack fusses with the coffee maker, Robby half-asleep and squinting at his phone an arm’s length away like an old man, when it’ll hit him. He turns away automatically, shoulders hunching, one hand braced against the counter as if he’s just clearing his throat, as he’s wracked by another red-faced, barking coughing fit. CFer coughing fits are something else, they go on forever and sometimes he ends up barfing on the tail-end.
“You okay?” Robby asks, looking up with wide eyes.
Frank begs with his own, please don’t push. “Yeah.” He croaks, as the coughs crash over him endlessly, like white-washed waves in the impact zone. “Dry air.” Dry air, allergies, post-nasal drip, a cold that never quite leaves — shitty lungs, shitty lungs, shitty lungs. He knows what they want to hear, expect to hear. He says what he needs to say to keep them off his ass. He knows he doesn’t look like a typical CFer. He knows they assume his mutation is mild, that he’s atypical. It’s also easier to fool Robby than it is to fool Jack. Robby trusts him intimately; Jack trusts no one, leaning on his forearm crutch with a scowl.
“That sounds productive,” Jack looks at him over the rim of his travel mug, with feigned lightness in his tone. “You been coughing like that for long? You take your meds?” What are they? But Jack doesn’t ask, it’s not his next step in their little ballet.
Frank straightens, forces a breath in through his nose, until the fit eases into something he can pass off as normal. He wipes his mouth with the back of his hand and shrugs. “A couple of days with this one,” He lies easily with too many teeth. “You know how it is. ED’s basically a petri-dish at this time of year — PPE and sanitizer can only do so much for CF lungs.”
Robby grunts. “You want tea? Honey?”
“I’m good,” Frank shakes his head quickly. He grabs his bag and slings it over his shoulder. “I gotta run anyway.” He kisses them both goodbye.
Sometimes the coughing fits wake them up at night.
Frank will jolt awake with his chest tight and burning, lungs thick with the mucus he can’t properly clear at their place, not without his supplies. He’ll roll carefully onto his side, face turned into his borrowed pillow, trying to muffle the sound, but CF coughs aren’t polite little huffs. They tear out of him like explosions. He’s broken ribs from them before, thrown up blood and bile. Robby groans, half-conscious and Jack stirs immediately. “Frankie?” Jack slurs, already reaching for him. “Breathe. Easy does it, baby.”
Frank pulls away instinctively, sitting up too fast, the motion triggering another spasm of coughing that leaves his eyes watering. “I’m fine,” He insists hoarsely, mucus cloying in the back of his throat, making him sound like he’s got diphtheria. “Sorry. Didn’t mean to wake you. Should get goin’.”
Jack’s mouth tightens. “You aren’t going anywhere like this, baby. You’re burning up.”
“It’s fine, my meds are at home.” Frank repeats, shaking his head. It’s another infection, he gets them like clockwork. He swings his chicken legs over the side of the bed, already reaching for his hoodie. “I’ll get some water before I head out.”
He doesn’t tell them about the early mornings, almost every day now, where he coughs and coughs and coughs until his chest burns and his sputum is streaked with blood that he pretends not to see. It’s been two years now, they have to know that he’s severe, that he’s a double-mutant; something. Robby clearly notices the weight Frank doesn’t gain, no matter how much Jack cooks or fries. Jack has to notice the way Frank always positions himself near exits, bathrooms, trash cans — places to cough privately, should the need occur and it always occurs. They both have to notice the way Frank goes still whenever the conversation drifts toward chronic illnesses, frequent flyers, long-term prognoses of the level 2s who come in with trachs and PEGs, the unglamorous reality of bodies that fail slowly. Frank doesn’t take cases with CFers. Frank doesn’t grab the kids from Chairs with snot crusted down their faces. Frank goes to Presby’s CF clinic and doesn’t let his chart so much as brush PTMC’s system.
“You don’t have to go,” Robby tells him once, after a coughing fit so bad Frank has to sit on the floor until the room stops spinning. Please stay. Please let us take care of you, baby.
Frank presses his forehead to his knees and breathes through the burn. “I’ll see you on shift.”
🫁