Steve XVII: Breathing Easy

"Hey there." That was the first coherent thing Steve heard, beyond a vague understanding that both his parents had been whispering to each other for the past several minutes. He'd woken up to the strangest combination of sensations he'd ever experienced. The pain, of course, muted and throbbing through his chest and back, but also his lungs filling easily with each artificial breath from the ventilator, instead of barely expanding before protesting his efforts with an agonizing coughing fit. For a few moments, he slowly drifted back into full awareness before daring to open his eyes, which proved a more difficult task than he initially anticipated. His face-well, more like his entire body-felt so swollen he could barely move. But once he accomplished that, he locked his gaze on Bucky, who he knew intrinsically wasn't supposed to be here, though he couldn't put his finger on why.

Soccer. The thought emerged from whatever mental lockbox all the drugs had placed it in. Bucky was supposed to be playing soccer today, yet he was here. Why? Because Steve asked his mom to call him, and Bucky must have decided being here was more important. How had Steve managed to work his way up so far on Bucky's priority list that he abandoned his team—the team he'd worked his ass off for years just to earn his place on—just to watch Steve sleep and relearn how to breathe? What had he done in all the years he'd known Bucky to earn such a place of honor? Steve wished he knew so he could make sure to continue doing it.

He closed his eyes again because having them open was exhausting, but he did weakly squeeze whoever's hand was clasped in his. Probably his mother's. "I love you," she said and he was reminded of all the other times he couldn't say it back. Hopefully, like all those other times, she understood that he meant it even if he couldn't speak at the moment.

He drifted back to sleep, awoken some time later by a machine's annoying alarm. A nurse quickly arrived and silenced it by adjusting some tube or other. Steve couldn't keep track, there were so many. This time, he felt less groggy and keeping his eyes open wasn't such a monumental effort.

"He's back," Dad announced. Now Steve recognized the hand in his didn't belong to his mother; they must have switched off. "Hi," he greeted as Steve glanced his direction. In response, Steve squeezed his hand. He sensed that moving much more than that would cause an inordinate amount of pain, something which he had no desire to instigate. Bucky stood up and reseated himself closer so Steve could see him without craning his head. He tried to arch his eyebrow inquisitively, but based on Bucky's reaction he failed miserably.

"Is that your way of asking what the hell I'm doing here?"

Steve rolled his eyes.

"I came to see you, you idiot. You actually did the team a favor; Kenya's been anticipating a right-handed goalie, but Lemar's subbing for me and he's a leftie."

Leave it to Bucky to find a way to twist this into a positive. Despite knowing it had torn him away from the game he loved, Steve was glad he was here. And he hoped Bucky could tell without him being able to express it verbally.

~0~

"Ready to take these new lungs for a spin?" the doctor asked the next morning. Steve nodded, though his insides coiled with terror at the thought. After going home for the night to get some real sleep, his parents and Bucky were back to witness this momentous occasion. He'd passed all the necessary tests for extubation, but he still worried that he wasn't ready to breathe on his own with lungs that weren't even his. He'd also been extubated multiple times over the course of his life and he always despised it. They suctioned everything first, which he always thought felt somewhat like having the air literally ripped from his chest. Steve watched wide-eyed as the doctor then turned off machines and deflated the cuff holding the tube in place. "Deep breath," he prompted, and Steve obeyed to the best of his ability. "And cough."

Yep, it still sucked. The tube began to slide out, and his eyes scrunched involuntarily at the gag-inducing sensation. He coughed, the force of it sending pulses of pain through his chest. A suction wand quickly replaced the tube in his mouth to remove all the secretions that had come up with it. Above the squelching sound of the suction, Steve heard continued instructions to cough, and he complied to the best of his heavily-compromised ability. Finally, the orders to cough and the suction stopped…and he could breathe. Whatever he'd been doing for the past ten years definitely could not be considered breathing compared to this. Through the ache of shifting his abused chest cavity, he could feel that his new lungs expanded fully, that the air didn't get caught behind thick mucus buildup and immediately spiral into coughing. It was amazing.

Mom started crying. Steve seriously thought he might too. They did put him on oxygen since his lungs weren't quite settled enough in their new home to function perfectly, but Steve didn't mind in the least. God, this was what he'd been missing out on his whole life. Steve silently thanked the selfless soul who'd donated this life-saving gift.

"Any momentous first words?" Bucky asked with a cheeky grin.

Steve knew all four of them would remember this moment for the rest of their lives, so he ought to pick something worth remembering. He could pick something heartwarming, or witty, or profound, but ultimately decided to verbalize the insane mix of emotions running through him.

"Son of a bitch."

"Steven!" his mother chastised. "I waited nearly thirty-six hours to hear your voice again, and all you have to offer is profanity?"

Bucky cracked up, Dad not far behind. Mom glared at them and at Steve before she also burst out laughing. Steve would have joined in, but restricted himself to a smile.

"So, how does it feel?" Bucky asked.

"Unreal." There was no other word to describe it. Not even his wildest dreams of a life with new lungs had captured this feeling of profound freedom. Steve just wanted to exist forever in this triumphant moment, but he knew this marked only the beginning of a long and difficult road.

~0~

The next days passed in a dizzying rotation of nurses, doctors, and therapists, and a blaze of milestones. His first steps. His first bite of solid food. The removal of the catheter and four of his six chest tubes—one of his personal favorites. His first time sitting up for longer than a few hours. His first walk all the way down the hallway (one of many, because he insisted on doing as much PT as they would let him). The removal of the final chest tubes, and his central and arterial lines. Being taken off oxygen after days of weaning. That one was surreal. Steve barely recognized himself without the clear tubing he'd lived with for five years, and he barely recognized the sensation of drawing a breath that didn't abruptly cut off or morph into coughing. His surgeon told him that his left lung had been so scarred and necrotic that they'd had to literally scrape it out of his chest cavity. Almost every time he inhaled, he felt like he could cry. He'd spent so long abusing every muscle in his chest, back, and shoulders to wrench in satisfactory breaths that he had to work with respiratory therapy to relearn how to breathe normally, with just his diaphragm.

Bucky was there beside him every step of the way, taking turns with his parents so Steve was never alone for long. He cheered Steve on for every first, and stopped him from taking it too far when Steve got overconfident. If it weren't for Bucky, he probably would have faceplanted at least once, so his transplant team was glad to have Bucky there.

Two weeks after the surgery, he got to go home. Without oxygen, but with an extensive list of other equipment and restrictions. Steve stared at the long list before him, feeling like he should probably hang it up on the back of the front door so he never forgot any of it. The list was just a few pages of a binder thicker than any he'd ever carried for schoolwork. This binder was basically the owner's manual for his new lungs. Some of the things he'd already been practicing, and he figured the rest would soon become second nature. Still, it was a daunting list to internalize:

Wash your hands frequently, before eating or drinking, and after using the bathroom. Avoid people who are sick with anything potentially contagious. Avoid people who did not get their flu shot, or who were recently vaccinated with a live virus such as chicken pox, measles, mumps, or rubella. These were all guidelines he'd already adhered to his entire life, because getting sick with CF made things immensely more complicated than they already were.

Never change an infant's diapers. That one made Steve chuckle when he read it. If he ever became a father, he'd have a built-in excuse to avoid poop duty. It actually seemed like more of a silver lining than anything.

There was also long list of food-related restrictions: no unwashed fruit or vegetables, no undercooked meat, no sushi, no raw dough or batter of any baked goods, no buffets. Pretty much all of those already applied to him, although he would miss licking the spoon whenever he and Dad baked.

Avoid large crowds in close quarters, and if someone seated near you is coughing or sneezing, get up and move. Again, he already lived by that rule.

That first segment of the list made sense, but after that point it got more specific and more obscure. Steve learned things about infection risk that even his mother never knew before.

Never garden or dig in the dirt because fungus and mold live in soil. Never empty a cat's litterbox, and avoid contact with kittens. Apparently, cats carried infectious agents in addition to allergens, giving Steve two reasons to avoid them at all costs. Avoid birds and their droppings. No airplanes for a year after transplant, and beyond one year always wear a mask and keep the air vent closed. Wear protective clothing and sunscreen outside because transplant meds make skin more sensitive.

Finally, his daily treatment and monitoring regimen underwent some slight changes. While he no longer had to do the vest or nebulizers, a slew of other things replaced those tasks in his twice-daily routine. Take anti-rejection meds at the exact prescribed intervals, or they won't be effective. That was underscored multiple times by all his doctors. So was the need to monitor and record his weight, blood pressure, temperature, and lung function. He kept track of all of it in a section of the binder that even Mom agreed was now just as important as the Bible. Where his vest equipment had sat, he now kept a sphygmomanometer, pulse ox, and spirometer. It was a lot to keep track of and downright exhausting, especially during the early days of his recovery at home, but it quickly became second nature just as his vest treatments had.

What took longer to come to terms with was his appearance. His torso had always been scarred, but none were as big as his new one. It stretched the entire breadth of his chest, from armpit to armpit, just below his pectorals. At least it looked better now than it had when it was still full of staples. Bucky joked that he looked like a zippered purse, and also pointed out that Steve probably had him beat in the scar department now. Accompanying the large and imposing mark were six smaller ones in a fan pattern from the chest tubes, another on his left side from the collapsed lung, bilateral port scars beneath each collarbone, a smattering of old PICC line scars on his biceps, the six-inch one across his abdomen from when he was a baby, and his G-tube. Actually, that last one might go away pretty soon and turn into a much less conspicuous mark. Steve's doctors told him that because breathing no longer cost him so many calories, he might be able to keep weight on without it. If he could go three months without tube feeds and not drop weight, he could take it out and let his stoma heal up. But they wanted him to wait a few more months before stopping tube feeds because the surgery had already put his body under an incredible amount of stress and changing one more thing might do him more harm than good.

Steve was no stranger to strong medications with intense side effects, but these were a lot even for him. His anti-rejection pills needed to be taken on a strict schedule to remain at therapeutic levels, which this early in his post-transplant journey meant he needed to wake up at midnight to take his third dose. He had to go back to clinic at Gravesen twice a week for a chest x-ray and bloodwork to check his levels of anti-rejection medication and make sure they remained stable enough to prevent his immune system from attacking his new lungs. This early on, they wanted them to be on the higher side, which meant the side effects were stronger. And one of them happened to be shaky hands. Steve couldn't draw, or even write his name very legibly. That was one of the most frustrating parts.

The other most frustrating part was his appearance. While the meds prevented his body from destroying his new lungs, they also made him swell up. Between fluid retention and steroid side effects, he gained a lot of weight in the immediate aftermath of transplant. His once gaunt face was now visibly puffy. Given that gaining weight had always been an uphill battle for him, it wasn't the worst thing in the world, but Steve started to hate the way he looked.

Between those feelings of self-consciousness and his miraculous new lung capacity, he itched to move. When Bucky got back to soccer, Steve had watched his stamina—and his muscle tone—build with each passing month, and he wanted that for himself now. But he couldn't have it, not yet. They'd sawed his sternum in half horizontally and stitched it back together with wires, and he had to wait eight weeks before so much as moving his arms a certain way, much less participating in any strenuous physical activity. That was probably for the best, since those first weeks were endlessly busy between clinic visits, infusions of an antiviral to prevent a particular infection in his new lungs—he got IV Benadryl for those and slept through most of them anyway—morning monitoring and medication routines, evening monitoring and medication routines, and naps. He still took a lot of naps, but it wasn't nearly as bad as before, when he could sleep for twelve hours and wake up feeling like he immediately needed another twelve.

Every day, he felt stronger, but he didn't learn just how much stronger until about a month after transplant when he did his first PFT. Steve had no idea what to expect, having never blown a PFT with lungs that functioned so well, at least not since he was ten or eleven. He easily took several deep breaths before the test, feeling air reach all the way to the lower lobes of his lungs. When they told him the number, he genuinely didn't believe them. Seventy percent. Before transplant he'd been sitting at a solid fifteen. He didn't believe it. How had he regained over fifty percent in just one month?

Steve immediately told everyone he knew of this achievement. The outpouring of love and support from his school friends, his parents, and his Gravesen friends made him feel like he could fly. "You'll be able to beat me in a sprint in no time," Bucky told him. Steve took those words to heart and took up running as soon as his team cleared him. The first time he tried, he was nervous that he set his expectations too high and would be disappointed in himself, when in fact it was just the opposite. Steve hadn't run since middle school, and it felt amazing. At his next PFT he reached eighty-five percent lung function, and he could feel it. To think, mere months ago he'd grown short of breath just brushing his damn teeth.

His three-month bronchoscopy looked beautiful, with no signs of infection or rejection. They hadn't sedated him as deeply as his previous bronch, and Steve spent the entire procedure numb and woozy but aware and slightly anxious because of it. However, it was worth it for the good news.

The better he felt, the harder he worked. He'd had the transplant on the tail end of summer break and took the fall semester off from school to recuperate, so he had about two more months of a completely open schedule—well, open except for clinic visits of course. Steve had his dad teach him some of the workouts they did in basic training. He modified them down to suit his current fitness level and gradually worked up to completing them full-out.

He apparently worked too hard. When he went into Gravesen for his nine-month bronchoscopy and check-up, he complained of a sharp, piercing pain in one particular area of his chest. An X-ray showed that he'd snapped the wire holding his healed sternum together by being so active, and the severed end was poking at him. Fortunately, they were able to remove it laparoscopically, and a week later Steve was back at it with renewed fury. Even with his increased activity level, he was keeping the weight on, and removed his g-tube for good just a few weeks shy of the one-year mark.

This was the longest he'd gone without a hospital stay since he was a kid, and since he was done with infusions and super-frequent bloodwork, they removed his port in another outpatient surgery. Steve was now completely free of implanted medical devices, for the first time in fifteen years. They tapered down some of his anti-rejection medications and the swelling in his face started to reduce. The tremors in his hands also ceased, heralding the much-awaited return of his drawing abilities. Over the next several weeks, he started to notice the weight he was gaining wasn't just from fluid retention or steroid-induced puffiness, but from muscle-building. It wasn't much at first, but as he worked harder every week, and his dosage for certain meds tapered down, the positive physical changes became more and more drastic.

And he owed it all to a stranger he never knew. That was the craziest part. A person saved his life by losing their own. It was a favor he could never repay. Steve wished he could thank his donor for the gift of life they'd selflessly awarded him, but of course he couldn't. Not for real. But every night he whispered a silent prayer to Clint, Carol, and Scott, asking them to find the person and thank them on his behalf.