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The sun was directly overhead by the time Olivia pulled into the Capital Medical Center parking lot. With her phone pressed to her ear, she listened to her voice messages and jogged to the entrance. She was late. Again.

Hey, honey. You’re probably already at your appointment but I just wanted to call and remind you that you promised dinner tomorrow night…

Olivia cursed and pocketed her phone. Her father knew her too well. She had forgotten but it was too late to cancel now.

The hospital’s automatic doors opened and she wove her way through the activity in the atrium. Sunlight streamed through the glass ceiling, patrons and personnel gave her a warm “hello” or smile as she passed, and the scent of lemons permeated the air.

Olivia had been part of the Cystic Fibrosis Program since she was diagnosed as a baby. The doctors and nurses were like a second family and, with only about 100 patients in the hospital’s entire Cystic Fibrosis program, walking through the hospital doors felt a lot like coming home. But, as welcoming as this place was, it didn’t change the reason why she had to drag herself in every other month.   

She caught the elevator door just before it closed and was relieved to find it empty. As she stepped into the cabin, she could no longer ignore the tightness in her chest and broke out in a fit of phlegmy coughs. Pulling out her inhaler, she punched the level three button and began taking deep grateful breaths. The shiny chrome doors closed with a squeak and she suddenly came face-to-face with her reflection.

“Yikes,” she said and dropped her inhaler back into her bag. She gazed back at the two icy blue eyes in front of her and tried to see the beauty her mother always talked about. But all she could see was paper-pale skin, sunken eyes, and wispy blonde hair.

Olivia shook her head and looked away. There was absolutely nothing beautiful about Cystic Fibrosis. Her lungs were drowning in thick, sticky mucus, she was grumpy from constant exhaustion, and her frail, thin figure left little to desire.

She tapped her foot impatiently as the elevator crept past level two. Every time she came here she felt like she had to prepare herself for bad news. When she was four, it was Cystic Fibrosis induced pancreatitis. At 12, she had to have polyps removed from her nasal cavity. At 16, she developed a serious fungal infection in her lungs. And by 18, she had a small portion of her right lung removed. Not to mention countless bouts of bronchitis and pneumonia in between. It was a bitter feeling to know that she had spent so many months of her life in the hospital just because of one mutated gene.

The elevator jostled to a stop and the doors opened to an all too familiar waiting room covered with rose printed wallpaper.  

“Hey, Maggie,” Olivia said as she signed in at the nurses’ station. The nurse behind the desk jumped slightly at the sound of her voice but managed to look up with a smile. “Olivia, how are you?”

“Good,” she replied and habitually followed Maggie into a nearby alcove equipped with a scale, chair, and blood pressure cuff.

“Let’s get this party started,” Maggie said with a wink.

This “party” was Olivia’s hell. Her groundhog day. First, Maggie would check her weight and blood pressure, then take a blood sample. Next, she’d meet with Will, her respiratory therapist, who always managed to find a new problem with her lungs. Then she’d see Jordan, her dietitian, who never felt like she ate enough; followed by Sam, her program therapist, who never thought she was happy enough. And finally, she’d finish with her primary physician, Dr. Katz. All the while, answering the same questions:

Are you keeping up with your physiotherapy?

Are you exercising regularly?

Can you take a deep breath for me?

How many enzyme pills are taking with each meal?

Is your new medication making you feel lightheaded or nauseous?

Can you take a deep breath for me?

How would you describe your current mental state in one word?

How much sleep are you getting each night?

Do you have any chest or stomach pain?

Can you take a deep breath for me?  

By the time Olivia wandered back to the nurses’ station, she had a pamphlet about the mental and physical benefits of yoga and a serious eye twitch.

“Dr. Katz is running a bit behind,” Maggie called to her over the high counter. “Feel free to take a seat while you wait.”

Knowing how busy the ward was, “a bit behind” could mean anywhere from 15 minutes to an hour. Olivia plopped down into a chair in the corner of the waiting room and tried thumbing through an old magazine. But she only watched the pages flip by.

In little over a month, she’ll be 28 years old. When she was diagnosed, doctors told her parents that she wouldn’t live to see past her 18th birthday. Somehow, she’d made it this far but each passing year gave her more anxiety.

A flicker of light caught the corner of her eye and she looked up to see a twirling mosaic lamp on the other side of the room. It was probably put there to distract wheezing babies while they waited, sticky mucus already weighing heavy on their tiny lungs. The colors danced and flickered around the room, then disappeared when they passed through a harsh ray of sunlight. She stared at the lamp for what felt like hours, trying to bring some peace to her anxious mind.

“Olivia. How are you?”

Her head jerked up to see Dr. Katz walking briskly into the room. His white hair was perfectly parted, not a strand out of place. And, like always, he sported a bowtie and colorful high socks that peeked out below poorly hemmed pants.

“Hi, Dr. Katz.” She stood to greet him. “I’m good. How are you?”

“Fine, thank you,” he replied quickly before turning and leading her down a long quiet hallway to an examination room.

His socks were the only sign of warmth she’d come to expect. He didn’t try to make small talk. Instead, the only sound came from her clicking heels as they passed by overnight rooms. Worn and tired faces peered out at her but Olivia stared straight ahead, not willing to look into the eyes of people just like her.

Dr. Katz took over her case when she turned 18 and moved into the adult program. He was a brilliant and honest man, but also very stoic and cold. She couldn’t blame him though. Now in his 60s, it was hard to imagine the number of patients he’d lost to this disease. The problem was: he would never save a patient, just give them more time.

Olivia climbed up onto the examination table and swung her feet nervously. Dr. Katz opened her file and scanned the notes from the day’s tests. “Hmm,” he said after a moment.

Hmm? What does ‘hmm’ mean? Olivia thought as her heart fluttered in her chest. But she quickly pushed the thought away. She was just being paranoid.

Dr. Katz lifted his stethoscope off the back of his neck and placed it on the right side of her chest. “Could you take a deep breath in for me, then let it out slowly?” He moved the stethoscope down and to the right. “One more time?” He looped the stethoscope over the back of his neck once again and nodded. “Let’s take a look at your x-rays.” He rolled his chair over to a computer in the corner of the room. After a few clicks, he pulled up the images.

The lungs glowing on the screen across from her looked a lot like someone had taken white and grey paint and sponged the inside. A normal lung looked clear, with confident white lines striping across the chest. Olivia’s, however, had never looked like that and had only gotten blotchier over time.

Dr. Katz sat quietly and massaged his jawline as he stared at the screen. Why is it taking him so long to speak? Olivia thought. Her anxiety spiked as if to warn her: You’re getting warmer.

“That right lung…” he mumbled before turning to face her. “I know we’ve talked about this in hypotheticals before, but I think it’s time we talk seriously about getting you on the lung transplant list.”

Olivia's vision blurred as a high-pitch ringing reverberated in her ears and the floor switched places with the ceiling. Panic dripped down her body like ice water and her heart pounded violently in her chest.

“Oh,” she whispered. But it was all she could say before her throat closed up like a Venus flytrap.

Dr. Katz walked over to her and put his hand on her shoulder. “I will be here for you every step of the way, no matter what you decide.” He looked her square in the eye, sincere and unwavering. For him, it was the equivalent of a hug and pressure started to build behind her eyes.

“What if… What if I don’t get the transplant? How long…” her throat tightened again before she could finish.

“It’s hard to say,” he replied without missing a beat. “Lung infections will be harder to fight off. Gas exchange, in general, will eventually become extremely difficult. It just depends on how much your body is willing to fight. I’d say—”

“—Can I think about it?” she asked, cutting him off. Suddenly, she didn’t want to know.

“Of course. I’ll have Maggie give you all the information you need: the procedure, risks, costs… but I recommend you make a decision before your next appointment. It can take time to find the right donor.”

Olivia nodded, not knowing what else to say. I’m dying, she thought, trying to make reality sink in. Granted, she’d been dying since she was diagnosed but now she could actually see the end.

It was as if all her life she had been locked in a speeding car destined for a cliff, and now she was finally reaching the edge. She knew she would die from this disease but she’d done nothing to prepare herself.

After all, death waits for no one and her clock was up.

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When you buy a copy of View from the Edge, 50% of your purchase will go to the Cystic Fibrosis Foundation. Thank you for your interest and support!

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