Back in July, I wrote about the clinical research study I was in for a medication for menstrual migraines. I expected to be in that study through about December, but I have dropped out. I thought I’d tell you about my experiences.
I was going monthly to my appointments, where the nurse would check my vitals and get a blood sample. I liked the nurse, whom I will call Nice Nurse. She was competent and accommodating.
Then one month, the nurse changed. From the day I met her, she rubbed me the wrong way. She did not seem to know what she was doing it. So, for lack of a better moniker, I will call her Dumb Nurse.
At each visit, I was to be given a “headache diary.” The diary was a set of papers — a different page for each week — on which I was to record any headache symptoms and any medication I might take. The first week that I saw Dumb Nurse, she gave me the stack of papers, the pregnancy test, and the study medication and sent me on my way. When I got home, I realized that she hadn’t given me the right pages for the diary. There were two of the same week, and none of another week I needed. I called and asked her to send me the correct pages.
“Oh, I gave the wrong pages to a lot of people,” she said.
“Well, can you mail me the right pages?” I asked, and told her what weeks I actually needed.
“No, just write it on notebook paper or something,” she answered.
Now, I would think that the pharmaceutical company would prefer that I use the proprietary documents they produced for my record-keeping, rather than a random piece of notebook paper. But apparently Dumb Nurse didn’t think that was so important. Fine. I scribbled out the wrong dates on one of the papers, and wrote in the correct dates. On another, I just wrote all the information on the back of the page. It certainly wasn’t as neat or legible, but apparently it wasn’t important enough to spend forty-four cents to send me the right pages.
I had my foot surgery at the end of August. After that, I was on pain medication — Percocet and Vicodin — for about a week. I dutifully wrote down the medications and dosages and the days that I took them. When I took the paperwork in for my next research appointment, Dumb Nurse asked me several times about the medication, and I showed her where I’d written it all down. She seemed to have understood.
The bloodwork I’d had at that appointment (at which Dumb Nurse wiggled the needle around in my arm mercilessly, claiming that my vein “must have rolled” and that was why she couldn’t draw the blood) came back with high liver enzymes. I figure it was probably due to the pain medication. Dumb Nurse called me and asked me what medication I had been on and what the dosages were. I reminded her that I had written it in my headache diary. She asked again, trying to verify the dosages. I told her that I was no longer taking the medication, and since I was at work and the bottles were at home, I could not look for her, but again stated that I had written all the dosages on the diary. She asked what days I had taken the medication. Again, I told her that this information was recorded in the diary.
Since my labs came back with high liver enzymes, I had to go back in for another, more comprehensive blood draw. Thankfully, Dumb Nurse asked Nice Nurse to come in to do the blood draw. Nice Nurse got my vein the first time. And they drew twelve vials of blood.
But before they drew the blood, Dumb Nurse asked me again about the medications, dosages, and days that I took them. Seriously? We’re doing this again?
So I reminded her that I’d written it all down in my last headache diary. If she had asked me to bring the bottles in, I would gladly have done it. But she didn’t. And — silly me — since I had put the information in writing, I figured she had what she needed. Especially since we’d had this conversation already.
Anyway, I went home, waited a few days, and they called to tell me that the labs came back and my liver enzymes were fine again, so it must have just been the pain meds that I was on.
So… you’d think that would be the end of it, and I could get on with participating in the research study and making my $30 per visit.
Only, that’s not what happened.
Stay tuned for “My Life as a Research Subject: Part Three” (or, “You Don’t Understand Your Own Body”), and “My Life as a Research Subject: Part Four (or, “You’ve Got an Incurable Disease. Oh, Wait. No You Don’t.”)