Lying in space: My time in a clinical trial

2022 marked the first time that I participated in a clinical trial. Oftentimes, I feel unsure about participating in them. My condition is relatively mild – not that amenable to experimental therapeutics, which often have a significant risk involved. Truth be told, I needed a little bit of convincing.

 Back in March, a study coordinator reached out to me and explained the trial. After another conversation in April, I finally felt ready to consent for the trial. We arranged for me to participate over the days of December 20^th and 21^st, just before end of the year. For this reason, and others, I flew back from Ohio to Oregon just a week prior.

This clinical trial’s purpose was to use MRI scanning and functional tests to measure changes in muscle function and composition over two years. (Of course, the trial was specific to a few neuromuscular conditions, including my own condition (Becker muscular dystrophy). Across the two day period, the researchers collected a baseline of my muscles. On day 1, I received MRI scanning of the arm and leg. Day 2, by contrast, involved MRI scanning of the whole body and some functional tests.

Back in 2019, I had completed a cardiac MRI…with an incident. That time, unfortunately, they used contrast agent which prompted me to faint and need a few minutes to recuperate. This is especially unusual for me – I hardly ever faint unless something serious prompts it. Admittedly, I was a touch worried about this current MRI scan.

These worries were unfounded. On the first floor, I was greeted by the principal investigator and the study coordinator. The two of them wheeled me to the elevator and we went to a conference room. Here we reviewed the consent form, the study purpose, and the potential risks. Though generally safe, the MRI machine is capable of locally heating tissues due to the concentration of magnetic flux; furthermore, metal is not allowed. To my relief, no contrast agent would be used. Then I was taken to the MRI room on the same floor. The MRI technologist reviewed the same items with me.

There was still some prep work. My clothes had a zipper which meant I had to change into an MRI gown. The technologist told me to wear it “kimono style”, which I figured out after a few minutes. Even the metal in my mask posed a problem, so I was provided a cloth mask. For those who do not know, MRI machines are exceptionally noisy – earplugs and headphones were provided. Then I lay flat.

The technologist and two technicians had to position me with gray soft blocks and sandbags. That position made it possible to place the long piece containing the magnetic coil over the required area. I was then finally told to lie as still as possible with most of my body in the MRI “tunnel”. Here only my head poked out and I saw the screen. Light flashed on, and turned off. A dark screen appeared when the MRI was “acting”, which reminded me to keep still.

MRI machines are quite logical: they observe and they think. A pulse of sharp electronic sounds (observing) followed by a softer percussive beat akin to a drum machine (thinking). Total silence meant that the three people in the other room were reviewing the images. Of course, they communicated each pause as they happened.

The day 1 was eventful. Not long in, a pause seemed unnaturally long without any instructions. The voice came on again in my headphones. It turns out that a recent software update forced a reboot. As luck would have it, the fire alarm sounded, creating a ten-minute delay. I had to be taken out of position and wheeled away. The positioning had to be recreated once I was back. After a while, we finished with scanning my thigh and moved onto the upper leg. Then, to my surprise, I was taken out before we scanned the arm. They provided me a lunch break out of order. The clock read 12:07 (or so). Somehow, three hours had already passed. The discrepancy in timing arose because they took double the amount of images to be on the safe side. At a hospital café, I ate a pan pizza and conversed with the PI and the coordinator. Then back to the MRI. In light of the delay, they scanned my upper arm and skipped the forearm, putting me at around 4 hrs of MRI time.

Coincidentally, I arrived home to learn that the running water in the house had just stopped working. This did not pose a major problem to me, but it did add to the stressful hours of the clinical trial.

Day 2, by contrast, was a little more routine. I did not wear an MRI gown and kept my cloth mask and earplugs from the previous day. This time, though, they put my whole body into the MRI. My view was transfixed on the one item in sight: silver tape running along the middle. Combined with the sounds of the MRI, I felt like an astronaut, lying down in space. For this set of scans, I was moved in small fits and had to keep especially still. Even more than yesterday. The coil was placed at different points of my body. For some scans, they had me breathe normally and for others I had to hold my breath. Later in the process, the coil was placed on my chest directly, which seemed to heighten my anxiety a little bit. My heart palpitations somehow seemed louder. The last 15-20 minutes were difficult to stay still. I had to conjure up images of other places to keep my mind at ease.

I was quite relieved to be out of the tunnel. Maybe it is simply just the six hours total of being in an MRI. As a treat, one of the technicians showed me a few MRI scans. They said that the results looked good with an expected large peak for water and a small peak for lipid. (In other words, my muscles appeared healthy.) Next they took a blood draw – thankfully this was much kinder than my previous time just after an MRI.

Afterwards, I was treated to lunch like before. The PI explained that we would have some functional tests. These were classic tests: how long to climb 4 steps, how long to walk a certain distance, and how far you could walk in 6 minutes. The 6-minute walk test, as it is known, has a high variability because it can depend on motivation. For some reason, I decided to take the walk test at a brisk pace and cover a lot of ground. That put a lot of stress on my feet, making me feel a little tired. That was thankfully the very end of the testing.  

Just like that, we held our final debriefing. As I shared, the study was overall a pretty good experience for me. Getting to see a clinical trial as a subject helped me appreciate the work that goes into testing medical therapies and diagnostics. Even just arranging for participants to come for a study seemed quite involved. Indeed, I had flown across the country to be here. These are all details that are hard to appreciate at a distance.

For the mutually beneficial exchange, I received $100 and was wheeled to the entrance. The coordinator waited with me for the Uber. After an exciting two days, I was finally back home. My timing was excellent considering that the running water had very graciously just been restored. I took a shower and felt that I had accomplished some good in the world.