Last night, I tossed and turned in my sleep, worrying about today’s doctor’s appointment.
That in itself is not unusual for me. As healthy as I am today, I still get severe anxiety surrounding the hospital, even on days where I know I’m just there for a routine doctor's appointment. I mean... for most of my life, a routine check-up often ended up with nothing but bad news and new, invasive procedures and hospital stays. So, no wonder I couldn't relax!
Somehow, I fell asleep, but didn’t feel rested when my alarm woke me up. Still, I forced myself to get up, get ready, and eat a hearty breakfast of salmon, peaches, and milk to start my day. But I wasn’t just anxious about my doctor’s appointment. I was terrified of the drive to get there, as I’d be driving myself to the hospital for the first time.
To get to National Jewish, I’d have to drive the busy, congested streets that criss-cross the city, from my home in west Littleton, to the hospital downtown. I already have a hard time driving just around my neighborhood. After all, many Denver drivers are a special kind of batshit insane behind the wheel. And most people drive vehicles as big, if not bigger, than my Nissan Xterra, which makes the fear of driving around this place infinitely worse.
But, I still had to drive myself to my appointment and back, as my physical and mental health more-or-less depended on it (if I didn’t go to my doctor’s appointment, my doctor wouldn’t renew my Trikafta prescription). So, after breakfast and a walk with Toby, I clambered nervously into my Xterra and started it up while repeating the mantra, “You’re an adult and you can do this, damnit!”
With that motivational mantra in mind, I headed east around 11:00 AM, to give myself plenty of time to get to my appointment.
The drive started off mediocre. I was in my neck of the woods, after all. But, shit got real once I crossed the South Platte river and made my way through downtown Littleton towards Broadway.
I began to get nervous when traffic began to clog up, and the streets grew narrower and narrower. Still, I pressed on. Yes, I was scared shitless. But, that didn’t justify me not going to my appointment. I mean… if I didn’t go to my routine doctor’s appointments, I couldn’t get my Trikafta. That fact alone lit enough of a fire under my ass to get me to take Broadway past where I would’ve turned to go to my great grandma’s house by the University of Denver, deeper and deeper into Denver.
The further north I drove, the more claustrophobic everything got. The traffic worsened. The buildings got taller and more imposing. Soon, I began to drive past homeless encampments, and at one point, a very unwell man ran out in front of me to cross the street. But, I kept my cool and found my way through a shitload of construction to Lincoln street. Finally, after a harrowing two more miles of huge buildings, narrow streets, and people with the brains of deer, I got onto a side street and, before much longer, found the hospital parking lot.
I was frazzled. But dammit, I’d made it! I’d faced some of my greatest fears and overcame them. At least, for a time.
Like always, I checked myself into the hospital and spent a half hour patiently waiting in a far corner in the waiting room. I wore an N95 mask so I didn’t breathe in anyone else’s nasty lung germs, and anxiously tapped my foot as I people-watched from my corner. Most of the patients in the waiting area with me were much older adults, many of them in wheelchairs and lugging around oxygen tanks.
I was the youngest patient by far in that room. It’s something I’ve grown used to since I left Children’s Hospital for National Jewish. Still, it’s a rather… odd feeling, for lack of better words, being the youngest patient by forty years in a room full of seniors who are nearing the end. But, it is what it is. While I physically may be 22 years old (my body’s probably younger than that thanks to Trikafta), mentally, I feel ancient in many ways. Perhaps, I am ancient in those ways, especially compared to my peers.
However, before I could get too deep into one of my many existential crises, a young CNA around my age called out my name. I followed her down several white corridors decorated with weird amateur paintings, to a room with my name taped to its door. I could feel my heart pumping out of my chest as I sat down in a hard plastic chair and let the nurse take my vitals.
She scowled and cocked her head a bit when she noticed my pulse-ox was in the high 80s, low 90s, but I assured her that it was normal.
“I had heart surgery when I was a baby…” I explained, “Pulmonary Atresia. Nothing to worry about.”
“Gotcha!” the nurse nodded as she took the pressure cuff off my arm, “I was gonna ask about getting on oxygen, but it seems you are okay without it.”
After she took my temperature, the nurse headed out of my room just as the next nurse arrived with the spirometry cart. I stood up to ensure I could fill up my entire lungs for the Pulmonary Function Tests. And, like usual, my FEV1 (the most important number) was around 120%. Well above average for anyone my age and size, with or without CF!
Finally, my least favorite part of the appointment started. I did three huge huff-coughs to show that I had nothing to cough up from my lungs (as usual), and then sat down and opened my mouth, so the nurse could swab the back of my throat to figure out what kinds of bacteria (if anything) were growing in my lungs.
Fifteen minutes later, my nutritionist arrived, and we visited for a half hour, going over my diet, the fact that I was losing weight (again), and talking about my bowel problems. In the end, my nutritionist prescribed me a sample of organic, vegan, sugar-free protein shakes specifically to help someone like me gain weight. But, if that didn’t work, my nutritionist suggested we ought to try a medication that induces appetite next time we met (in three months).
After she left, my social worker came to discuss my insurance information. She gladly answered my “what happens when I start to work?” questions for another half hour, putting my anxieties at ease.
“No matter what, your Trikafta will be covered.” She assured me, “Or, maybe you’ll get lucky and become a multi-millionaire, so you can just pay for it yourself.”
“One can only dream.” I responded, smiling.
After her, my CF psychiatrist popped in for awhile, and we discussed the state of my anxiety, as well as all of the things I’ve been doing to combat it.
“You have your anxiety under remarkable control.” my psychiatrist said, “I’m very impressed by your willingness to seek help for your problems, and ask all of these “tough questions”, so many people are afraid to ask… I wish I had more answers for you. But, like many CF things, some things just haven’t been figured out yet. That’s scary, I know. But, we’re all here for you. If you have any issues or questions between now and when we next meet, email me and I’ll get back to you within 24 hours!”
“Awesome. Thank you.” I replied.
Another half hour passed until finally, my main doctor came in to talk with me.
“Well, your lung function is record-breaking, as usual!” Dr. Jane began as she glanced over my charts, “Whatever you’re doing, it’s working and you need to keep doing it… Since your lungs aren’t the issue here, let’s discuss the elephant in the room, shall we?”
I squirmed in my seat a little as I replied, “Yeah… about that…”
It’s no secret that Cystic Fibrosis really fucks with the digestive system. Mine has certainly been annihilated by the condition, to the point not even Trikafta has been unable to help it much. But, my digestive issues can’t simply be chalked up to CF, as my symptoms have been very… atypical… even for CF. Especially in the last decade or so.
It’s hard for me to discuss this shit, because… well… my symptoms are shitty (literally and figuratively), and are therefore very uncomfortable to talk about. But, in order to find a solution to this severe and frequent issue that’s been interfering with my daily life, I must grit my teeth and talk about it with my doctors, anyway. And, that’s exactly what I did.
Dr. Jane listened intently, unphased by my graphic descriptions of what happens when I eat anything that isn’t a whole food (and sometimes when I do, which makes this problem even harder to figure out). I also told her about how these symptoms get worse whenever I’m stressed out about anything, interfering with my daily life and just getting in my way.
“It’s starting to interfere with my in-person classes.” I admitted as I took my glasses off (which had fogged up due to my body heating up from the stress and embarrassment of it all).
“How so?” Dr. Jane asked.
“I’ve had to leave class early…”
“That’s no fun.”
“It really isn’t.”
“Do people notice you leave?”
“Yeah.”
“Do they ask why?”
“Yeah.”
“Who asks?”
“My profs.”
“Ah.” my doctor nodded as she scribbled down some notes, “Do you tell them why you left?”
“I just tell them I had an emergency to tend to.” I answered, “I refuse to tell them the real reason.”
“Understandable… Good news is, you’ve scheduled your Methane Breath Test for later next week… Hopefully [she meant that in the best way possible], it turns out you have SIBO, which is very treatable.”
“But if I don’t?” I asked.
“Then, we’ll move onto the next step, which is figuring out if you have an obscure allergy.” my doctor replied, “If it turns out you don’t have some weird allergy, then-”
“The colonoscopy.” I shivered.
“Yes.” my doctor nodded, “But, that’s an outpatient procedure. It’s not a very big deal. You’ll do just fine if we cross that bridge. Clearly, since this issue has been persisting for a very long time, whatever you’ve got going on isn’t life threatening, even if it’s something akin to Crohn’s or IBS. But, for now, we’re just doing the Methane Breath test, which is a piece of cake.”
“I’ve been through way worse.” I smirked, relieving the tension I was feeling.
“Yes. You. Have.” my doctor agreed, “Hopefully, those days are long behind you… At least till you’re a little old lady.”
I couldn’t help but grin as I prepared to say something snarky.
“But you aren’t a little old lady, right now!” Dr. Jane quickly continued, seemingly reading my mind, “One day, assuming nothing freaky happens, you will be. But right now, you’re still very young. And very healthy! I know you don’t feel it, but it’s true. Out of the thousands of people with CF who come through this hospital every year, you’re among the healthiest of the healthiest… Remember that!”
Finally, after a nearly four-hour-long appointment, I was released from the hospital, with much more good news than bad news. But, I had one more obstacle to overcome before I could relax for the day: the drive home.
When I started up the Xterra, Willie Nelson’s song, “Bring it on”, began to play through my speakers.
“Fitting…” I chuckled to myself as I shifted into reverse and slowly backed out, and then headed towards rush hour traffic on Colorado Boulevard.