Being on the other
side with medical research is an eye-opening experience. I decided to
participate in the research as a subject instead of simply seeing the results.
Previously, in December 2022, I took part in a trial.
This year, I was in two more: one in April (a new study) and one in December
(the sequel to last year’s study). Geographic location is important here –
because I left my Ph.D. program in Ohio in August. Naturally, the April study
was in Ohio, and the December study was in Oregon.
Enrollment in a new study
On April 12th, I participated in a database study on Muscular
Dystrophy that also required a blood draw and the removal of a small amount of
skin (skin biopsy). The consent form was generally straightforward since, you
know, the risks of some procedures are obvious. Except for one part. That part asked
for permission to create an immortalized cell line (from the skin). A professor
I had worked with was also the doctor in this study. So at least I knew him beforehand!
For some reason, the blood draw was tougher than normal – maybe because of the
needle not creating enough of a vacuum to effectively suck up that eerily dark
red liquid (blood).
Eventually, it
worked out – but we chatted while the annoying part happened. The part I most fondly
remember is our discussing famed director David Lynch with the doctor. Getting
to talk about Mulholland Drive and Twin Peaks and also more obscure Lynch
works. Not what usually happens to me. In the middle of this conversation, I
gave my consent for the cell line – knowing that it would push research forward.
This was also my chance to talk about the classic sitcom Cheers, which remains
a surprisingly good topic for conversation.
This conversation offered distraction…from removing a piece of tissue from my
inner left forearm. The area was cleaned, injected with a numbing agent, and
then punched by a small metal device. After the sliver of skin was snipped, a
surprising amount of blood came out. Moments later, the site was clean again
and a bandage and gauze were applied. Even with everything, I still felt
totally alert, and enjoyed the surprising conversations. Heading back, one of
the staff told me that the doctor even played the trumpet on top of this work. For my contribution to science, I even
received a $10 Clin Card (essentially a debit card for clinical study
participants).
Returning for the previous study
This past week, I returned to the imaging study. The study coordinator met me by
the elevator and walked me to the research center conference room. Consent
forms were remarkably similar to the previous December, but there were some
logistical changes in the year since. Nothing shocking. Just enough to make me
pay attention. The basic format had morphed into: MRI scanning, functional
testing, and taking the muscle biopsy (removing half a gram of muscle from my
thigh and lower leg). Day 1 covered MRI and functional testing, running around
7 hours total.
Lying in a magnetized tube again for the first time in a year. Same technician,
same study, and same headphones over earplugs. Not the same: music being played
over the headphones. I asked for classical music, which the technician joked might
put me to sleep. Instead, the sound of “Aria” – Bach’s wonderful piano piece in
the Goldberg Variations – came out immediately, perking up my attention. Volume
was a little loud, so I asked them to adjust it. The pulsating and woodpecker
sounds of the machine added an industrial feeling to the soundscape.
Occasionally, there were pauses in the music, marked by the technician speaking
into the headphones.
The machine scanned my calf and then my thigh. Unlike last time, the technician
actually taped “fiducial” vitamin E tablets to my legs as part of the scanning
process. (Apparently this appears brightly on MRI scans.) The thigh scan proved
to be more involved for me, but I was given a blanket for that part. A common
refrain: keep staying still; you’re doing great. Aria’s melody repeated occasionally
as part of Bach’s Goldberg Variations. At some point, I was slid out and was
readjusted for the whole body scans: the coil was placed on my chest, pelvis,
and legs. After two and a half hours, I was pulled out for the final time. After,
the MRI technician was tasked with my blood draw into two long tubes. I helped
by pointing out the visible vein on my left biceps, which saved him the trouble
of finding a suitable place. The thick needle caused some discomfort, but it
was efficient.
The remaining few hours were much more varied. I was
first given some chicken, rice, and broccoli to eat before the functional
tests. Unlike the 2022 study, the tasks were more oriented around daily
activities and took around one hour total. Most of the tasks were easy for me,
as someone with a milder condition. Stacking cans of cherries, picking up
quarters one by one, pointing to numbers, and tearing paper. Balancing on tip
toes was the toughest, though I survived to three seconds on both feet
separately. We concluded with the usual 6-minute walk test, which tired me out.
Lastly, I talked with the study coordinator about the administrative aspects. Unlike
the previous year of the study, we took a few hours on MRI (versus 6) and I
received a ClinCard (compared to cash). Of course, payment was a small reason
for me to help.
2023 Study Day 2 lasted around 3 hrs compared to the 7 hrs of Day 1. Unlike
yesterday, we started from a research section attached to the main hospital
building. The wait was longer – eerily
so. Seeing the professor in charge of the study appear reassured me that
nothing was wrong. Ten minutes later, I connected the dots. In the exam room, I
saw two doctors – my neurologist and someone new to me – along with the study
coordinator and one assistant. Clearly, an elaborate procedure was about to
happen for a room of this size to hold 5 people and supplies beyond measure in
the open. They had me lay out flat on the exam bed.
The new doctor – apparently a kind last-minute volunteer – led the procedure to make the muscle biopsy as smooth as possible. I got a skin biopsy in the previous clinical trial, which sort of prepared me. But it was not the same. This required a higher level of precision. They would take only a half gram of muscle, like enough for the tip of a pinky, but there MAY be cramping sensations.
Many steps were required for the biopsy. A sterile medical fabric was placed over my leg with two open spots (one on the thigh and one above my ankle) for the procedure. A manual razor was used to remove hair. Cleaning with iodine swabs turned my right leg orange in those shaved spots. The doctor prepared numbing agent in a syringe and added the needle. Unlike a needle injection elsewhere, the leg is tougher…calling for a higher gauge (thicker) needle (gauge 25 I heard). Slowly, the needle proceeded into my leg to the first layer of muscle, which has a higher resistance than skin and fat. A surreal sharp sensation. During this procedure, I talked with the people in the room to keep my mind off the strange feeling.
Almost as a joke, the doctor asked if I wanted to *see* the biopsy device. Not everyone wants to see it, they tell me, but I confidently said yes. A blue device long like a dental tool with a blue light, needle and spinning metal jaw. From my vantage, only the sensation was “visible.” (After all, lying down on my back.) I had to move my hands off my chest, relax my hands, and try to settle down.
A pulse of spinning and my leg immediately felt a
localized spasm. For those not familiar, a spasm feels like a fast twitch that rapidly
tightens – amounting to a dull throb. Two more times and we were half done,
with the spasms feeling tougher to bear. The wound was wiped down and received
water from a syringe for proper cleaning followed by a steri-strip (a strip to
pull the skin together for better healing), a bandage, and a see-through
plastic. Blue for the top site, and yellow for the bottom site. Then pressure
was applied to halt bleeding and stop any bruising. With the first collection
from my leg (tibialis anterior), I somehow felt no spasm. …That feeling quickly
collapsed when the second and third times brought spasms that tempted me to
curl a little. I kept flat on my back, feeling ache stretching across my body.
Same process as for the other site. Except the lower leg was a bit more
swollen, requiring more pressure. Ice packs were applied to both sites and
wrapped in adhesive bandage. By this point, my right leg ached as if I had
walked a long distance or stretched for ages. We had made it to the end. I
thanked the new doctor, the neurologist, and the study coordinator – they
stepped out while the assistant watched over me for 15 minutes. We chatted
while I rested up and got back on my feet. Walking on my leg felt sore galore,
but at least I had someone to talk to. My ride home arrived, , bringing a long
episode to an end.
In
three days time, the wound dressing should fall off in the shower. All goes
well, the healing will be mostly complete, and the pain gone. No matter the current
ache, I feel satisfied to help push forward research for people with more
severe conditions than me.
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