Ketamine Experience Part 5 of 5

So I ask again
Am I so alone and full of pride
To never speak out
This is my world, this is my world
Don't tell me now
I won't feel those words, I won't feel the lies they tell
Can you hear my scream
It's for everyone, for everyone
I am so afraid of living in oblivion
I am so afraid of living in oblivion

-- Anything Box

In Part 4 I continued my "report" to my patient advocate. It continues as shift change begins...

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I bided my time until shift change from day to night, watching more of the dark-themed Criminal Minds marathon. I overheard my nurse on a few occasions say in a joking tone that if she seemed mean it was hormones from being pregnant. Standing in my sock feet with the blanket around my shoulders/arms, I made my way to the middle of the nurse station and eavesdropped during the shift change. I learned that the census at shift change was equal to the number of inpatient rooms (the rooms had giant sequential numbers painted on them). If the names on the cards next to the doors were still accurate, some of the rooms had two patients in them. I was then approached by a night nurse who asked if I needed help, taking initiative I had seen no day shift nurse take. I said I wanted some help but I was waiting until after shift change. She introduced herself and asked me my name and I responded. She said that she was my night nurse and had time to help me now if she could. I practically wept as no one had treated me with such kindness since arriving at the facility. I told her that I had requested with day nurses/doctors that I be put in my own room and that I was leaving first thing in the morning and promised I would not make a mess. She went to a computer to see what she could do.

Once my night nurse was out of earshot, some woman (could have been an administrator, I’ll call her admin woman) started to tell me that it was not possible for me to get me my own room as they were full. I knew that that was either a straight up lie or she was not paying attention when they were discussing the census during shift change. I suspected she was going to try to bamboozle me with math like some less-than-reputable car salesman. Unluckily for her (and a few car salesmen I’ve run into), numbers do not scare me and I am pretty good at math. Before I could say anything someone thought to ask me if anyone had introduced me to my roommate (this was more than 11 hours after arriving) so I said no but we had met. Then I told admin woman that I understood the census was the same as the number of inpatient rooms. Sure enough she dug herself deeper by saying some rooms have more than one patient in it so I explained that that meant there were, in fact, extra rooms available at the moment. Flustered, she tried to sell me on more patients were coming in the morning and the schedule simply could not be changed as patients were already assigned rooms etc – to which I responded I was leaving first thing in the morning and would not interfere with the incoming patients. But, she insisted, the room would have to be cleaned and, having enough of her rude attitude (remember she is the one who butted into an issue my night nurse was helping me with), I said loudly “I want to speak to a doctor” which grabbed a lot of people’s attention including some patients. She started mumbling something about a doctor not being available and they would have to be paged or some such. Again I said, politely but firmly, I wanted to speak to a doctor. What happened next left me grinning from ear to ear: my night nurse (not sure how much she caught of my exchange with admin woman and her bizarre power trip) swooped in and told me she had put me in my own room. I thanked my night nurse (in my mind she was Super Night Nurse) and she asked if there was anything else I needed. I asked if it were possible to have something to write on. She asked if I would also like a mug then went and got a nice plastic mug with a pen and a small pad of paper in it. Words cannot express how awesome my night nurse was – I fear if I gush too much about her she will be promoted out of the area but if there is one thing the inpatient folks in the facility need more of is night nursers like her in their lives!

No longer afraid of getting a full bladder since I had my own bathroom for the night, I filled up my mug with some ice and water and rehydrated myself. I stayed awake a while writing down a summary of what happened that day on the pad of paper then slept 6 hours or so. When I stepped out of my room in the morning, someone (probably my night nurse) had written my name on a card next to my door which may not sound important but when so much of your identity is taken away with your freedom of movement, communication, privacy, etc, it meant the world to me. I thanked my night nurse for everything several times, eavesdropped on another shift change, ate breakfast, and then was rescued by my wife who signed the discharge papers and we high-tailed it out of there.

I have since learned that my wife had called to check on me, had used my passcode, and had left a message for me but no one told me about the message. My psychotherapist also called but the phone just rang and rang, never went to voicemail and no one ever picked up. I was miserable that day and knowing that people were checking on me would have done wonders for my mood but the system failed for my well-wishers during my stay.

I went on to get five more Ketamine infusions on an outpatient basis. I should have gotten a sixth but I suspect it was cancelled due to inclement weather (there was absolutely no consistent way for me to get information via phone about when Ketamine infusions were happening on a given day – it takes hours to get a callback and I was lucky to get that a couple times). It was my understanding that Ketamine infusions started being given at 11a on Mondays, Wednesdays, and Fridays. It is obvious the system could use some attention in order to help some of the most vulnerable/suicidal patients have the best chance at a positive outcome. A basic question no one could answer for me is why my IV could not have been started at 10:30a on a day I was scheduled. I am left to feel Ketamine patients are not as important as other patients, having had to wait up to 4 hours (no exaggeration – I checked in at 8:15a on a particular Monday and was not taken to a bed until 12:15a with little explanation of what or why anything was delayed). I had delays of over an hour getting someone to start my IV. I had delays of over an hour between them faxing my order to the in-house pharmacy, pharmacy mixing my dose, and a doctor not being available on floor to accept delivery. And don’t get me started on me getting a bed and an IV started well over an hour before the next Ketamine patient arrived and yet her Ketamine is received first, even though no one is available to start her IV… Unprofessional scheduling and communication is astounding to me, a humble patient whose professional career included investigating inefficiencies/bottlenecks then fixing them, who so desperately needs help.

More harm than good was done to me during my inpatient and outpatient treatments. Thank you for listening – I hope someone powerful enough takes my words to heart so patients are protected from harm in the future.

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That is my report (I named the few people I was sure I knew the names of in case it would help with my patient advocate's investigation). My father also wrote a note to my patient advocate supporting my experiences, particularly about how hard it was to get information from staff.

We received nice but short letters back promising a formal response by mail within 30 days (when I had met face-to-face with her, she also mentioned a 30 day response after her investigation). A couple months later after receiving nothing further I figured out how to contact my patient advocate's boss who claimed it was unusual for it to take more than 30 days. Almost immediately my patient advocate left a voice mail apologizing that she had not gotten back with me yet. I then sent her an email asking for just 2 concrete findings or changes that were made in response to my report, even if only in draft form. I have receiving nothing since then, and that was months ago.

It is way out of character for me to invest so much time in writing about this and if all I get are empty apologies as what happened to me is swept under the rug...I will just say I have fantasized about some pretty horrible things happening to certain folks in admissions, inpatient care, and patient advocacy. Not that I would ever cause horrible things to happen to them but if I did, I doubt a jury could be found that would convict me. Sadly unless I threaten the facility with legal action or with a tell-all exposé, all I feel I can do with my frustration is fantasize.

Comments welcome.