I recently participated in a study to gauge to efficacy of Kalydeco—a new drug that treats the underlying cause of CF instead of just the symptoms—in patients with two copies of the Delta F508 mutation. I kept a diary for the first month of that study and I wrote a piece about my experience, but I figured that piece would have more context when the results of the study actually come out. In the meantime, here’s a journal entry from the day I went to have my qualifying eye test.
Monday September 9th
Today I went to the eye doctor to make sure nothing was wrong with my eyes. I had been told that they were just looking to make sure that I didn’t have cataracts or glaucoma, but I was still a little worried that my terrible vision would somehow disqualify me from the study.
My vision actually isn’t that bad, my brain just doesn’t make full use of my right eye, which throws off my depth perception and gives me a healthy fear of losing my left eye in a freak accident. Still, given how blurry it is, I worried that the study people would be scared the drug would make me completely blind and kick me out.
My appointment was for 1:30pm, which sounded to me like “Hell yeah, I can party all night and wake up whenever I want!” It wasn’t until the night before that I did the math and realized that, given recent construction traffic, I’d have to leave the house by noon to get there on time. This meant I would have to wake up at 11am, do my stuff and take a shower. Weak.
After a quick negotiation with my brain, I decided I could take a shower at night, go to bed at 5:30am, and get home in plenty of time to do my stuff before my lungs turn into a pumpkin (I usually do my stuff around 2 or 3 in the afternoon, which is around the time that I wake up). So I woke up around 11:45 am and left the house at 12.
It’s worth noting that I should have built in much more discovery time into my journey, because I had no goddamn clue where I was going. I almost missed my exit because I had no idea that the highway layout had changed completely, but I managed to save the day by throwing on my blinker and hoping for the best.
I secured a parking spot in the front of the building, which was the easy part of parking. The hard part was feeding the meter. Apparently they don’t take coins or dollars anymore; you are supposed to download an app, register an account and pay online. You can also call a number and pay that way, but I didn’t feel like talking to anybody. I figured I’d just park the car and straighten this all out in the waiting room.
The building was kind of twisty, but it was well labeled, so I didn’t have any issue finding the office even though I entered at 60 Temple St and the office was at 40 Temple St.
The check in process was a little awkward because when they asked me who I was there to see, I had no idea. I said I was there for a study. They found my appointment by my name and tried to charge me $25. I told them it should be on the house. I was right.
When I sat down in the waiting area, I tried to pay for parking. It didn’t happen. My main issues were that I always think my license plate number is the same that it was back in 2006 and that I didn’t write down my zone number. I figured I could do a quick search to find the zone number, input my spot number, pay the fee and be on my way. I was wrong. That’s okay. I was pretty much resigned to get a ticket anyway because I was told the visit would take an hour and I parked in a spot with a 30 minute limit. If anything, I was saving money by not paying the meter.
I was brought into a room fairly quickly and the doctor ran through a quick history of my vision. In my life, I’ve had two eye exams: one when I was 6 and one when I was 16. When I was 6 and they saw that my right eye wasn’t everything it was supposed to be, they took a wait and see attitude. When I was 16, I got glasses, but I didn’t wear them because the left lens was just a pane of glass and the right lens was straight up Coke bottle. In theory, this was supposed to encourage my brain to rely on my right eye more. In practice it just made one eye look huge. I wore them twice.
I tried very hard to explain that to the doctor without sounding like a jackass. I don’t know that I succeeded, but the she sounded like she understood. Then she handed me a thing that looked like a masquerade mask with one eye blacked out and I read some letters, my plan of memorizing the chart thwarted by the fact that they now use LCD monitors to display one line at a time. Weak.
I aced the test with my left eye. When I switched to the right eye, it got questionable, but I managed. I started off strong, but if I leave my left eye closed for too long, my brain will start to mix the camera feed from my right eye with the feed from my left, giving me a mix of whatever is in front of me and the back of my eyelid. Still, I thought I did pretty good on the test.
After that, I got the dilating drops. I was left in the room by myself for a while, which was awkward, because I couldn’t read and the lights were low, so I felt super creepy just sitting there in the dark. Eventually, the doctor came back and shined some really bright lights in my eye, which wasn’t as unpleasant as it sounds, mostly because after a minute or so, I’d pretty much gone blind.
After a few minutes the doctor left to do some measurements and a resident came in. She put more drops in my eyes, but lacked the steady aim of the doctor. Then I took some more light to the eye. I’m pretty sure they just sent her in because if I’m applying to be in a study, they figured I’d be okay with being used as a learning tool. They were right.
I was then walked out of the room to a machine where I stared at a picture of a hot air balloon. It made some noises and I was walked back into the room.
At this point, another lady showed up in the room. She was the only one without a lab coat, which I think makes her important (in any other situation, it’s the opposite; the people with the lab coats are the most important). She introduced herself and shook my hand, but I missed what she said. In any case, she was very nice and explained to me that my vision in my left eye was 20/20 and the vision in my right eye was 20/40, so even my bad eye wasn’t as bad as I thought. Then she shined the bright light in my eye again. At this point, I couldn’t tell the difference between light and dark anyway.
She told me that the reason for all the tests was because Kalydeco had been shown to cause cataracts in a small segment of the rat population, but those rats were taking a metric fuckton of the stuff. I should not have any problems with the amount I was taking. With that, I said goodbye and left to see what kind of ticket was waiting on my car.
The whole visit took about 30 minutes, so I was pretty sure my car wasn’t going to be towed, but I still wanted to get to the car as fast as possible. Unfortunately, the elevator was taking forever. I started looking around for the stairs, but was interrupted by the other gentleman waiting for the elevator.
“Do you like Metallica?” he asked, in what seemed to be a smoother version of Heath Ledger’s Joker voice.
I really needed to find those stairs.
He was a compact man, probably early 50s with a bright orange t-shirt and a disconcerting smile, as if the eye doctor had somehow dilated his mouth.
“Yeah” I said, somewhat confused and non-committal.
Then he looks at me and says “’Nothing Else Matters.’” His face was positively beaming with joy that he found a fellow rocker.
“Yeah, great band.” I said, having finally spotted the stairs.
“Whitesnake has a hit like that too. I don’t remember the name of it, but if you told me, I’d know it.” He said, ensuring that this would be the first conversation I ever had where I refused to talk about Whitesnake.
Then his phone let out an obnoxiously loud ring. It took him a while to figure out that the air raid siren was indeed coming from his phone, but once he started digging his glasses and flip phone out of the plastic shopping bag he was carrying, but I took the opportunity to run. It was awkward that I decided to take the stairs the second the elevator showed up, but I didn’t care. I didn’t want to find out what else was in that bag. (my guess? Human eye balls).
When I got to the car there was a ticket on it, but I was too relieved to care. Also, I couldn’t actually read the ticket, because I couldn’t focus on the small letters. Once my pupils shrunk, I saw the ticket was only $20. That’s a small price to pay for convenience. Plus, if I get into the study, I’m pretty sure they’ll reimburse me for parking. I might as well park in style; I’ve earned it.