I was in Columbia's Cardio-Thoracic ICU for 5 days in total, although they started trying to move me out sometime after day 2. Unfortunately my options for a room on the floor were limited to a private room on the transplant ward -- a designation I would later be grateful for, but which required extra patience on my part until a bed opened up matching those criteria. In the meantime, I was somewhat stranded in la-la land, as I came to refer to the ICU once I left.
La-la land earned its nickname because I honestly felt as though I were living a dream the entire time I was in the ICU. Sleep came at all times of the day and at random intervals. Visitors came and went with the permission of the nurses, and meals magically appeared at my bedside only to be taken away uneaten an hour or so later. I was generally one out of it cookie. My memories consist of a couple of nurses (I know I had the same night nurse for at least a couple days running, but the others are a bit of a blur), some visits from my amazing CF and transplant doctors that I tried hard to rally for, some time spent in a chair attempting to sit up, and many, many comforting visits from my family. Some ICUs allow 24-hour access, but Columbia's did not, and so I would often find myself alone for stretches (although "alone" seems a bit of a misnomer considering I was in a glass room with a nurse stationed directly outside my window). At any rate, I spent a lot of time napping, and the rest of the time attempting to make blurry sense of the events going on around me.
I apparently awoke directly after surgery and was awake from that point on for quite a while. My mother, father, and sister were allowed in to see me shortly after I was brought in from the OR, and their descriptions are slightly less than flattering. Apparently I was agitated from the vent and my inability to talk and communicate with the nursing staff. The major source of this agigtation, from my perspective and judging from the angry rantings I wrote to the nurses, was twofold: 1) my back was stiff and I wanted to try and find a position that relieved the pressure, and 2) I wanted the nursing staff to read out my vitals (which were positioned behind me and out of my line of vision, but I could hear the machine) whenever they came into my room. The problem, of course, was that the stiffness was difficult to relieve without an epidural, which came later, and the nurses simply had too much to do to read out the vitals every 10 seconds to an already slightly nervous patient. Unfortunately, in my drug-addled state, I had difficulty understanding any of that, which was a bit of a recipe for frustration. I expressed this by hand gestures and eye rolling, the brunt of which went to my family members -- who thankfully were able to laugh about it later (and, I suspect, during, although I certainly wasn't laughing).
Personally, I recall feeling pretty proud of my performance on the vent. In fact, I recall thinking that I was quite possibly the best ICU patient around. My random scribblings in my journal during this period reflect that attitude, as I would often preceded a rather insulting tirade with a number of pleasantries such as "sorry to complain, BUT . . . " Nice.
My other main memory of this time is that nothing that I thought would be particularly unpleasant turned out to bother me all that much. I was prepared to have to talk myself down from the ledges because of the vent, or the arterial line, or the catheter, or any number of other things, but I didn't. My memories of the vent are mostly that inflated sense of pride I mentioned, and after they pulled it I don't even recall feeling all that thirsty. I was given ice chips almost immediately, they kept my throat swabbed, and before long I was allowed to swallow jell-o and small sips of water. I do remember not liking the mouth swabs much -- they were minty and tasted somewhat unpleasant.
What did bother me was the aforementioned back pain. I am 6 feet tall and absolutely could not get comfortable in a hospital bed. As a result, I was oddly resistant to sitting, as I felt somewhat curled over. I really just wanted to get up and stretch, but I wasn't able to do so, and for some reason you don't walk in the Columbia ICU. That is reserved for the floor, so there were several days when my options were limited to bed or chair, and neither of them made me particularly happy. I did get an epidural for the time in the ICU after the first day, which helped quite a bit but not entirely. It also made my entire chest numb, which I found somewhat startling. In retrospect, I'm not sure that I would request the epidural again, though I have to admit it was a great feeling when I pushed that button.
The second thing that truly bothered me was some gas -- as in burping, don't worry. I know that stomach issues are fairly common post-transplant, but I honestly wasn't prepared to not be able to burp. This came to a head one night when I needed to release some gas but wasn't able to, and was, as a result, given a small can of ginger ale by one of the nurses. Unfortunately, whatever was causing my stomach to seize up was far beyond ginger ale as medicine, and I ended up with gas in my stomach that had to be cleared by a tube down my nose. Not. Fun. Luckily, it also didn't last too long, and I did admittedly feel quite a bit after it.
The worst experience came when I apparently had a small panic attack and was given both benedryl (for an allergic reaction to a med) and an ativan to calm me down. Not such a good combo, in case you were wondering. Over-drugging has always been a problem for me, and apparently this time was no exception. While I don't blame anyone for this mistake, per se, I can say that had I been more conscious it likely would never have happened. Unfortunately, I wasn't, and that is probably the worst thing about the ICU: I simply wasn't aware enough to be my own advocate most of the time. This did get better as the time wore on, but it never got easy.
Luckily, I had all of you to help me through it. Literally. My sister would enter my room several times a day (after she finally retrieved my ipad from where I had insisted it remain in my room despite the fact that I clearly was NOT going to use it) and immediately offer to read me comments from the blog. What I heard gave me hope, strength, and in many cases validated my experience by describing your own struggles. My family learned about some of the discomforts that I couldn't quite communicate, and as a result they knew, for example, that muscle relaxers would probably help my back pain. (As a sidenote: we did try those later, and they did indeed help out with the back issues.) I can't thank you all enough for that, as it truly did help me keep my sanity during those days.
My final day in the ICU was long and frustrating. They told me that they had a bed available, but it ended up being evening before I was transferred up to the floor. I spent the day in dizzy anticipation, hoping against hope every moment that another line would come out, or another machine would be disconnected. In gleeful anticipation, I managed to sit 2 hours in a chair with minimal complaint and eat some cereal. By this time I had lost 2 of my 4 chest tubes, but I still had one on each side requiring a drainage machine. I also had the line in my neck, a catheter, an IV in right wrist, and an arterial line in my left wrist. All of these would come out by the time I made it to floor, and my port would be accessed by a great chemo nurse so that I had an IV access ready and waiting. By the time the nurse informed my family that they should go up to the floor to wait for me, I was hugging a teddy bear and hoping that I would join them momentarily. I think I was muttering "oh, please" under my breath over and over, but I was also certain that good times were right around the corner.
I was right.
I was escorted to my room on the floor around 7 pm on Thursday 17th after being transplanted the preceding Saturday. As I mentioned before, I had a private room on a floor with skilled transplant nurses who immediately knew exactly how to get me settled. Although still in a hospital room, I suddenly found myself able to go to the bathroom (albeit lugging behind the two drainage machines with help from my parents or nurses), adjust my own headboard, wear my own pants, and control my own lighting and temperature. I even had a window to the outside world, chairs and unlimited visiting hours for my parents, friends, and family, and my own pillow and blanket on my bed. My TV came with full cable and I was able to eat the meals that arrived daily at my bedside, as well as outside food like candy, McDonalds, pizza, and snacks. And I could walk. It took about 1 hour in the ward for me to feel more like myself again, and that's when I took back over the blog (and my ipad!) and began to realize the full implications of what it meant to be "post-transplant."
But that's a story for another day.