I was going for the last interview to be in the trial, speaking to a doctor who I hadn’t talked with before. After that, sign the release for the OIT clinical study and schedule the first appointment.
First, she described the goals of the research in detail, what they would be studying, how and why. An important ‘arm’ of this study was research on EoE that involved endoscopic sampling through the course of the OIT trial, and as a matter of fact they had an opening the next day at the hospital for an endoscopy. I checked my calendar and made that appointment on the spot. Be there 630, have someone to drive you home around 9. I called my wife and made her cancel her morning clients.
And we talked a lot about anxiety and how that is one of their biggest concerns, because participants drop out over anxiety rather than physiological reasons. I explained in detail how I had that covered, it would not be a problem and I recounted the story when I was considering Phase 1 participation, but my anxiety wouldn’t let me. The release form was pretty long, but pretty soon I got through it all and handed it off so they could make a copy for me.
I continued to talk about my avoidance protocols and how I never ate if I didn’t have my epi-pen on me, and how in the last 30 years how I had left my epi at home at most twice, because going all day without eating sucks. She said, “Wow, you are the perfect patient.” I also shared with her my experience being discharged from the ER after my 2nd reaction, something I have not yet blogged about, but intend to… someday. In reply she said “that probably saved your life. you know the population at greatest risk of fatal anaphylaxis are boys aged 18 to 25 because they think their are immortal.”
While waiting for the intern to bring back the forms we chatted about how the allergy had inhibited my life as an adult how I thought this would make such a difference for me. She looked up from what she was holding in her hand, stared me straight in the eye and with a look of excitement said,
“Well, I just want to tell you that OIT really, REALLY works!”
I was ecstatic, I was overjoyed, I had HOPE for the first time in 30 years. This huge weight was lifted from my shoulders and I wasn’t paying attention, but I heard myself say “no”, “no”, “no”, “no”, “no”, but then I heard:
“Fluid replenishment or Hypotension?”
I hesitated, and looked to see she had been going down the list of exclusion criteria on the paper that she held in her hand. I said “I don’t remember, … it was a long time ago” and we both knew I was lying. In the brief moment before she turned away I saw I had hurt her, but I wasn’t sure why.
Very delicately and with the kindest consideration for me an excuse was fabricated of why the endoscopy appointment was cancelled tomorrow, and they couldn’t give me a firm answer on whether or not I could be part of the clinical trial, but they would check.
This was March, I filled out the application the previous October and lied at the first interview in December. I hadn’t read the trial requirements since then, and frankly, the change in my anxiety medication was taking some getting used to, mentally. When I got home I dug up the document on the study, and the wording was unequivocal. There could be no exceptions to the exclusion criteria. This is when I came to the realization that when I was caught in the lie that I had dashed her hopes of helping me, because she knew she could, but wouldn’t be allowed to. For that hurt I caused I am truly sorry.
I went to bed that night and woke up in the early morning as I had done so many times before, before getting fired and before anxiety treatment. When I woke up before I would be drenched in sweat, or have charlie horse cramps in one or both of my legs with heart pounding and gasping for air and I never knew why. But that early morning, about 2 am, March 14, I woke up with no physical symptoms. As I lay there it was all coming back to me, the reason why I lied and the reason why I had to lie, so I got out of bed, went to the keyboard and typed these words. That was the genesis of this blog.
You can read the whole thing for free if you subscribe to KindleUnlimited. Here’s the book: