This past Monday, after an energetic and productive weekend, I spent several hours at work at NOCCA, then spent bit of time going over my UNO students' work before heading back to the gym for the first time since getting surgery on my eardrum a month ago. It was a quick workout. Fifteen minutes in, as we headed from a bike to the weight room, I felt dizzy and after a few minutes of sitting, I laid down on a mat and the staff called EMTs. The EMTs carried me out, and though I was conscious and not experiencing any pain, they used a defibrillator to correct the rhythm of my heart, which was apparently racing. I was terrified--not of my condition, but of the blast of electricity I was about receive. Though I was strapped down, I literally was blown out of the restraints. "How do you feel?" the EMT asked, and I answered "I feel great!" which was true.
They asked which hospital I preferred. I told them that I had only been treated at Ochsner Baptist and they took me to Tulane, because it was closest. Once there, I was stabilized and admitted. Most people know that I have had a pacemaker for about five and a half years. I've also been working with a trainer at the the New Orleans Athletic Club for the past seven months. There has been no reason to suspect there was a problem. And then this.
It was quickly determined that there were two possible problems that needed to be immediately addressed. There could be a blockage with my heart, or a problem with the pacemaker. A man from the pacemaker company was on the scene quickly, downloading a series of reports from my body; there was no need to talk to me, since the information was already stored. I felt like a machine.
Tuesday morning, they would do angiogram, and if there were blocked arteries, it would be fixed by a stint or bypass. They wheeled me up to the ICU overflow wing, because there was no room elsewhere. It was dark and there was an abundance of swivel chairs blocking the hall. "Is this a storage area?" I asked, and I was serious. But it wasn't storage, and there were a few other patients up there and even some staff. They put me in a corner and told me I'd be transferred to a room the next day, though they weren't sure when. At this point, I was very understanding of the uncertainty of my care, but at the same time, it seemed like such a chaotic mess at Tulane Medical Center, I wondered if it might be a good idea to arrange a transfer to Ochsner.
The curtained off area I was assigned was barely larger than my bed; when I asked about a bathroom I was told that there wasn't one on this wing. And it was hot as hell--the air-conditioning had been broken since the previous Thursday. Tuesday morning someone else on the hall passed away, and I watched as about fifteen residents and interns crowded the door to watch. One of the nurses on duty was planning her wedding, and spent most of the day discussing it with co-workers. At one point I heard her on the phone making an appointment to be waxed. But I wasn't allowed to have a phone; this was ICU policy. I did have my iPhone, and though it often didn't have a signal for calls, I was able to email the outside world.
By Tuesday afternoon, and 24 hours of not eating or drinking, I asked why I hadn't been taken down to the CATH lab to have the angiogram that I'd been told was vital that morning. No one knew. After throwing a mini-fit, I was squeezed in late in the day, but the results were puzzling. No blockages meant there was no obvious treatment for me. But, worse news: my heart was enlarged and weak. This was very serious, and we needed to address it as quickly as possible, I was told. They had already said, before the angiogram, that it was likely I'd need an upgrade to a pacemaker that also defibrillated; the new pace would be lower, so that my heart would returning to doing whatever work it could. Wednesday morning, they would proceed with that upgrade while they continued to investigate possible causes. That night I was able to eat for the first time.
Each morning, the staff would wake me at about 4 to draw blood to send to the labs. Then I would lie awake, trying to figure out what was going on. Early Wednesday, after the labs, I was told that I'd been taken off the schedule for the day. No one could tell me why. Breakfast arrived and I put off eating it, hoping that they might put me back on the schedule. A woman from the pacemaker company arrived and did an analysis of the pacemaker that was currently in my body. And here was the surprise: when the pacemaker was installed, it was because only one half of my heart was receiving the electrical pulse signal. But now, she was able to turn my pacer off and my heart was able to hold a steady beat of 55-60 beats per minute. The pacemaker had been set to go on if my heart went below 70 beats per minute. So my heart, at some point, had essentially been usurped by the pacemaker--and this, perhaps, is why it grew large and week. They decided to keep the pacer off, while giving me medication to ensure a regular beat. The medication was a pill, which I took twice a day with other pills; the dispensing of pills twice a day was the extent of my ICU needs. Yet they wouldn't move me.
Late Wednesday, I contacted my insurance to ask if they could arrange for me to transfer somewhere that could actually address the situation more quickly. At this point I'd missed three days of work and had a friend trying to take care of five dogs in my house in addition to her own. I was behind on work for my Ph.D. Also, I kept thinking of Brando, my oldest dog, who I'd been nursing at home for over six months with injections, anti-inflamatories and other short-term remedies. The insurance company was alarmed at what I told them, made a few calls, and was assured that I would get the pacemaker implanted in the morning.
Thursday I spent the day not eating or drinking again, and once again, I was bumped from the schedule. At this point, I tried contacting the case manager at the hospital; could he begin exploring other options? Could he find another possible facility? Would I ever be moved into a room? He told me that there were eight people waiting for beds for the night--they were on stretchers. I pointed out that I was waiting for a 30 minute procedure that would then open up a bed after I was gone. Eventually, he promised that he would make calls Friday morning to other places; later, I found out that he wasn't even scheduled to come in. This wasn't the only strange reversal. Throughout the week, one person would tell me something and another would say the opposite. For example, I was told at one point that I could be sent home with a defibrillating vest, and return as an outpatient. When I asked the caseworker about this, he said that was absolutely impossible, and would take days for insurance to approve. One of the doctors (I was, apparently, being treated by five doctors, though most who were listed on my case I had never even met and depending on who I asked the person in charge was Dr. Cook or Dr. M or...) told me that the reason for the delay was that they were very careful about observation post implant. I pointed out that in order to observe me post-implant, the implant would have to actually be done.
I didn't sleep well Thursday night, although, as usual, I was allowed dinner as my only meal of the day. I had been off the IV since Tuesday. Could it really be good for me to fast in this condition? The man behind the curtain to my right was having Katrina flashbacks all week. On the left, I had an actual wall rather than a curtain, but it also had a door, which led to a room where a series of highly infectious patients had been stored. All day long, people walked through my area to get to whoever was in that room. They hung their med coats on a hook above my head. In the space between the bed and the wall, there was just enough room for my tray and the portable toilet, but not really enough for me to maneuver between them.
On Friday I woke up and was told, once again, that they couldn't promise anything. But at least there would likely be a private room opening up for the weekend. The dogsitter texted me to let me know that Brando wasn't eating. That was it.
Early in the week, the HBO show TREME had premiered; one of the characters, played by Melissa Leo, is a civil rights lawyer, based on the very real and very amazing Mary Howell. I'd been joking with a friend at the beginning of the week that we might need to hire Mary to track me down in the system, as she so often does for people who go missing while in police custody. So, I emailed Mary. And Mary contacted Steve, a lawyer who, coincidentally, was also a former neighbor of mine. And he called the hospital, talked with several departments to find out what was going on, and also talked with the hospital's legal department. Suddenly I was being taken to have the procedure done. On the way, the medics transporting me discovered there was only one working elevator to take us there; we were late, and the Dr. had become impatient and gone. Earlier in the week, I'd been assured of what an expert he was; how lucky I would be to have him implant the device, when it actually happened. Eventually he returned, and I was not put entirely under. Because I was actually conscious during the process, I was able to listen to the conversation in the room, as the doctor instructed an intern in how to thread the leads to my heart. It took two hours. At one point, I heard the Dr. reassure the intern, "No one saw that." At another point, they had to retread a lead because the intern had asked for the wrong size.
Saturday morning, after spending the night in a room for the first time, yet another doctor who was, in some way, "my doctor," arrived in my room to introduce himself as they prepared to discharge me. He scolded me for not taking pain meds that had never been brought to me. Another Dr excused himself to get the meds, and then never returned. Six hours later, as I was walking out the door, someone gave me the pill. They also gave me my discharge papers. When I finally got home, I read over them and found reference to eight educational pamphlets that had supposedly been distributed to me. I hadn't received a single one. There was also no mention of the pacemaker I had just received. And there was no information on what I should expect or avoid with this new device in my body.