You can't hide the painIn terms of this blog, I don't know how important it is to say I am male but it is somewhat important for context in this long blog entry. I wrote much of this entry in order to present it to the contact assigned to me as a patient advocate for the healthcare company through which I arranged to try ketamine infusions as a depression treatment. I first read it to my assigned patient advocate then I provided the full document to help investigations into my experiences. Identifying details have been obscured in this version.
I can see it scrawled on your empty face
And I feel the hurts
It's in the words you say, they make me want to
Scream out to the world
For taking life for granted and I know
You are by my side
When I turn to hear you cry
I am so afraid of living in oblivion
I am so afraid of living in oblivion
-- Anything Box
I am generally easy-going. I am not litigious. I am not looking for apologies. I am seeking clarity and understanding. I want healthcare professionals with the power to address concerns up to and including culture change to hear what happened to me. I am aware that verbal memory is not perfect so I do not have a lot of verbatim quotes from healthcare staff but this is an honest account of how things appeared to me, a sick and desperate patient, regarding the Ketamine program. I know I am expecting a lot to ask that you put yourself in my shoes as you read this.
Last year, I sought out information about the Ketamine infusions there by meeting with Female Doctor 1 and Male Doctor 1. Because I have depression that is resistant to treatment/medication, I spoke at length with Female Doctor 1 about what Ketamine infusion could offer me. We also discussed my childhood trauma from being neglected and abused (including sexually by an older boy throughout second grade but the abuse likely happened in first grade, also). Most importantly we discussed a generalized anxiety disorder that began to significantly reduce the quality of my life 3 years ago and continues through today. I made it clear that some of my triggers are authority figures like doctors, professors, and police officers so I was not a very good advocate for healthcare necessary for my depression/anxiety (and our system today essentially requires that I be a strong advocate when the going gets tough). I try to be respectful of others’ time and understand the constraints placed on healthcare workers in all levels of the organization.
Female Doctor 1 explained that a typical Ketamine treatment would be Monday, Wednesday, and Friday two weeks in a row for a total of 6 forty-minute infusions via IV followed by about an hour of observation. After the first treatment I was expected to stay overnight in a hospital for observation. After the other treatments I was not supposed to drive so I needed to arrange a ride home each time. I spent the next several months planning for this, trying to find a two-week period that your facility did not have any holidays that would disrupt the infusions in order to maximize the effectiveness of the treatment should I respond positively to it – this was particularly important for me because for the last two decades or so including scores of different treatments, any positive effects I have had were mild and fleeting. I am also growing increasingly desperate for some relief from depression. In early 2014 I met with Female Doctor 1 again to make sure everyone was on the same page.
I lined up my family/safety-net/insurance/etc so my first infusion and hospital stay would be several weeks later. My father was flying several hours in order to drive me home from the planned second and third treatments while my mother and aunt were driving several hours to drive me home from the planned fourth, fifth, and sixth treatments. I had my extended family on standby as backup. If this seems excessive, I was an engineer that worked in the chemical industry over a decade on safety/environmental contingency plans so I am trained to leave nothing to chance.
My wife and I arrived a little early at the waiting room and after some confusion with the staff, we were pointed to the admissions office to take care of the hospital paperwork. I was taken by surprise when the admissions woman asked me to sign a paper regarding my “voluntary admission” into the hospital so I asked if I was being admitted to a psych hospital. She said yes and wondered why no one had told me. Even after having talked with Female Doctor 1 for hours, her colloquial usage of “hospital” never made me think “psych hospital”. It was quite cold that morning and I had only worn a short-sleeve shirt, jeans, and sneakers thinking that I would change into a hospital gown as I had for all my ECT treatments in a regular hospital (all outpatient) a couple years ago where I previously lived (the waiting area this day was for both ECT and ketamine treatments). I had never been admitted to a psych hospital and, in fact, wore it as a badge of pride that even with tenacious depression for decades that I was able to avoid crises leading to hospitalization because I relied on family and healthcare resources. Come to think of it, except maybe after the week I was born I have never spent a night in any hospital. I try to take care of myself and go out of my way to seek out reliable healthcare information and I follow doctors’ instructions to the letter.
So staying overnight in a hospital, even a psych hospital, might not be a big deal for some people who do not experience anxiety triggered by doctors and other authority figures. Bear in mind I had spent months preparing for this and my father was hours from his home to mine the next day so I had little choice but to voluntarily admit myself to the "psych ward" of the facility (not sure of the proper name of the inpatient area as I understand there were some renovations going on). The admissions woman explained to my wife how to get information on me while I was there including a passcode that any caller would need before any info could be provided. My wife was given a big booklet with information about the facility (I was not given anything). The admissions woman grabbed a bunch of keys then led us to an out-of-service elevator before acting confused about how to get us where we needed to go – not exactly confidence-inspiring as my anxiety was in full swing (sweating profusely in the only clothes I had for the day/night/morning and pulse racing way above 100).
Continued in Part 2 which should be posted, blog software willing, in 3 days.
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