July 14, 2024
I had a lot of hallucinations and saw a lot of things that probably weren’t there when I was sick. When I first got to the hospital in Santa Barbara I was feeling okay. My stomach bothered me off and on, but I mostly just had yellow skin, and otherwise felt and acted normal. By the time I was being transported to Keck in L.A., a week or so after being admitted in Santa Barbara, I was starting to be out of it. I have no memory of the decision to go to Keck, and only remember the transport ambulance that took me South. B. and I apparently talked for hours in my hospital room while we waited for the transport ambulance, but I have no memory of it.
I must have been feeling a bit better after a couple of days at Keck because I do remember being there. I think I sort of “came to” all hooked up to machines in their Critical Care Unit. There was a dialysis machine to my right, hooked up to me by a tube that went into the side of my neck. On my left was a machine that hooked up into the other side of my neck. This one had an IV and a line that the doctors used for liquid medicine and platelets. I didn’t have many of those, so nurses were always replacing those bags. And then my arms had various catheters and hookups.
In this state I really couldn’t move much at all. If I moved an arm too much it would set off an alarm. I could watch TV somewhat well, so that’s what I did. My eyes couldn’t focus well enough to read a book. Emails didn’t make much sense to me when I tried to read them, and when I tried to write anything, it came out as nonsense. I could read it after I wrote something and see what I was writing made no sense, but I didn’t know how to get my words across, which was terribly frustrating.
I must have been there two or three weeks before I had the transplant, and as the days went on I started to exist in another plane, maybe an alternate reality, or at least a version of the world that wasn’t entirely real. My head was a scary place to be.
July 25, 2024
Still feeling a bit better. My white/red blood cell counts are better (still not normal, but at the point where I don’t feel so crappy). A couple weeks ago I wasn’t sure I was going to make it. Now I feel more optimistic, though it may be wishful thinking. My numbers keep going up and down. Hopefully by my hematologist appointment in a couple weeks I’ll have a better idea. An exploratory CT scan in a couple of days will show if I need to worry about cancer. I keep losing weight and we can’t figure out why. I’m in the 140s now. I was round 200 when I went into the hospital at the start of all this. It just keeps going. I’d like to get a new kidney and be done with all of this.
One vivid dream I remember happened after my transplant, after I had moved down one floor, out of the ICU to a recover floor where you’re monitored less. I was about a day or two from going home. I was sleeping and was having a series of very realistic dreams. In one I had decided that I was tired of all the wires and rules and of the hospital and decided to leave, to literally walk out. I pulled all the wires off and started to get dressed to leave. Then the nurses came in the room to stop me and explain why I wasn’t ready to leave in the middle of the night by myself.
Another that I remember is waking up from a deep sleep to the sound of several voices talking around me, and someone is calling out my name, “Mr. Baker! Mr. Baker!” I decided to act interested and join the meeting, opening my eyes and responding, even though I recognized it was just a dream—I could choose to be cordial and responsive in this dream. The doctor was going through my list of medications and was asking me what each one was and what it did.
At one point I took over the meeting that in included several doctors and nurses and my family from my hospital bed, telling people what needed to be done and what topics we could table for now.
Both dreams turned out to be real, and I was embarrassed when I finally realized this days later. I only found out the second one was real because my aunt recorded the meeting, and it’s exactly as I remember it in my dream.
July 28, 2024
My aunt was at the hospital a lot. My sisters were there a good amount, too. G. would come an visit every day. My aunt and sisters could stay at the hotel across the street. Friends came to visit: B., A. and P., M., B., C., B. and B.
Before the transplant I was pretty out of it and don’t remember much. Afterword I had conflicted thoughts on what was going on. At times I thought I was dead and people were coming to say goodbye to me. So I humored them and was very nice and thanked them. I don’t think I said much. Because my surgery scar was so clean and entirely free of blood, I figured it was fake. And it didn’t hurt. So I would smile at people and be pleasant, like we were meeting on the sidewalk, assuming they were just being polite to me—as if visiting a loved on at the cemetery, except the person says, “Thanks for coming to see me. You look great.”
It might have been the night after my transplant or a couple nights after that I started seeing the assassins. I was trying to sleep in my room, stuck in place in my bed, tubes coming out of both sides of my neck, and they both came into view, sitting in the corners of the room, dressed in black, waiting and watching me. Suddenly I was running away from them in a green field, when one of them would tackle me, tumbling over and over on the hard, packed dirt, smashing my head into the ground and smothering me until I would pass out. I can still feel the cold, hard dirt and grass being ground into my skin, smelling like pennies. I would wake up in bed with them watching me, panting, their chests heaving as they caught their breath in their corners of the room. I was laying in bed with my eyes open, breathing hard too, hoping that was the last attack. This went on and on, as much as I wanted it to stop. During one of these imaginary assassin sessions I was clenching my jaw so tightly that I cracked one my molars into a few pieces.
Another night after my transplant I was falling asleep at night with my door open, as it usually was. I could see the nurses walking around and people coming and going from the elevator. My male nurse, who I thought was gay up until this point, was now flirting with another nurse, a woman. They would go into a room next to me and giggle and talk. Then I could hear what sounded like making out. They would go in and out, and it sounded like they might have been doing drugs, like smoking meth. Then they got in the elevator, went somewhere, and came back with a gurney with a body bag on it. They had brought a corpse from the morgue. In the hallway, where I could see, they both climbed inside the bag and started having sex. One of them noticed me looking, and so they giggled and whispered and moved the gurney into the room next to me.
The next day the social worker for the floor stopped in to see me and said he had heard about noises that had bothered some people the night before. I was certain that he knew what had happened and was talking in some sort of code. I said I had heard some noises but it was okay.