I haven't really written about how my overall health (mental, emotional, and physical) suffered - especially during the second half of my week in the hospital.
Because a few lymph nodes were removed from under both arms during my breast cancer surgery in June, the hospital placed arm bands on both wrists indicating that I was not to receive "sticks", nor have blood pressure taken via my arms. There is currently debate about how important all this is in terms of the risk of developing lymphedema, but this hospital (at least in theory and signage) seems to subscribe to older standards in this. At first thought, I appreciated it, but since both sides of me are potentially affected, it does sometimes present nurses and techs with a bit of conundrum - or so it seemed. In the early part of my hospital stay nurses and technicians had need to stick me numerous times to get blood draws and to insert IV's. In short order I became a veritable human pincushion. Both arms, when IV's were attempted and failed, swelled at two different times early in the week. This didn't appear to be lymphedema, but unwelcome fluid, nonetheless. Two different days I remember each arm was wrapped up in warm blankets for hours to help reduce the swelling. So many new experiences...
To be clear, it's not the successful sticks that are all that problematic, but rather repeated misses. And since a tourniquet is supposed to be avoided (again, under the old rules regarding lymphedema risk), there were a lot of misses or failed sticks. It appeared to me the misses cause more bruising than the successful sticks. Few seemed skilled at finding suitable veins without a tourniquet, though, so after two arm swelling incidents, they finally started calling in special technicians to do sticks with ultrasound. That was a great improvement - both in finding veins, and in the pain of getting stuck.
It was a little surprising, after all that, when a tech came in to insert an IV and she casually laid a rubber ribbon across my arm. I spoke up that tourniquets were not be used, and she seemed confused about how to do what she needed to do. Fortunately, my nurse was right there, too, and I asked, "Can I just require that from now on all sticks be done with the aid of ultrasound?" I was told yes, so I made it my mission to speak up should someone pull a tourniquet out again, but it must have been put in my record, as I never had to actually do that.
I'm not sure when the fluid retention started, but by Saturday my lower legs and feet were swelling to the point that when I was wearing shoes, they left an indentation on my feet - and that was just the beginning. I was weighed a couple of times to try to track how much fluid was accumulating, and when the number went up, it was alarming. X-rays were taken to see if there was any fluid around my heart and lungs.
For someone who was well enough to go home on Wednesday, I began to accumulate quite a list of scary symptoms that no one seemed to be able to figure out what was causing them.
The point when my blood pressure soared to 200 systolic, may have been when I moaned, "I've gotta get out of here before you guys kill me." It came out totally as a reflex, and I realized immediately it was a terrible thing to say, but hoped that they took it to have been kind of made in jest. I couldn't unsay it, but what was I to do? I didn't really think they were going to kill me, but by the weekend, when I had been needlessly restricted to my bed and a recliner with alarms, I knew the restriction of movement was not what my rising blood pressure or fluid-filling body needed. I needed to get out there. I needed to get home and start moving normally.
At one point, it was suggested that if the swelling didn't subside they might need to restrict how much fluid I drank. That just about undid me. Between chemo and antibiotics, and now a diuretic and high blood pressure medicine, my mouth was dry as a bone. And on top of all that they might have to restrict me from drinking fluids?!?! At some point, for a day or so I starting to have some trouble breathing during the little bit of moving around I did do, and another x-ray was ordered.
I've lost track of when my oxygen levels dipped, but I spent one night and part of the next day on oxygen before it resolved. Thank goodness that didn't go on for too long, but the craziness of the situation seemed to change and sometimes compound daily as the week and weekend wore on.
To top off my unhappy Saturday, after I had gotten somewhat settled into bed for the night, I found out the alarm on my bed had been tightened so that I couldn't even turn over without it going off. And that's exactly what happened right after the nurse left the room. How much could a person endure!?! When the nurse came in to turn the alarm off, exasperated, I said I couldn't sleep this way. I got out of bed, and going back and forth between bed and recliner, I carried blankets and pillows to sleep on the recliner, venting my frustration the whole time. In addition to not even being able to turn over in bed, some of my frustration at that point was also due to feelings I was having over the dissatisfying conversation I'd had earlier with the administrator. To my nurse's credit, he remained kind and appeared patient, letting me vent.
Sleeping in a hard vinyl recliner is not very easy to do, though, so I was exhausted come Sunday morning. Even though I only had to endure one more day of this craziness, all I could see stretched ahead of me were hours upon hours of enduring this miserable alarm business.
To add insult to injury, Sunday's lunch from the hospital kitchen was inedible. Most of what I got from the kitchen all week was too dry to be considered good, but late in the week I discovered the cheeseburger was pretty decent. So much for trying to make healthy choices. Come the weekend, I decided that would just subsist on cheeseburgers on Saturday and Sunday. But when I got a hocky puck of a hamburger on Sunday, I sent it back to the kitchen, and decided I was done with "room service". I would live on Cheerios and cheese and crackers from the cancer floor kitchen for the next 24 hours if I had to. What perfect timing when youngest son called shortly after that and asked if I was up for a visitor. Yes! Please! And will you bring me a lunch, and a salad for supper? He was a sight for sore eyes, when he arrived with food.
Now, I don't know when it happened, but at some point on Sunday I realized that someone had left the chair alarm unplugged from the recliner, and I wasn't about to point it out to anyone. When my son was there, I took hold of my freedom and pulled a straight-backed chair up to my "tray table" and sat there like a human being while I ate. A tech came into the room at some point when I was eating and was surprised to see me sitting where I was sitting (i.e. not on an alarm) and said something about it. While I tried, even with the stress of the weekend to always treat everyone with respect, my patience was starting to wane by this time. I said, "I have another person in the room with me. Can I not be free to walk around in that case?" I think I also said something about not knowing what the rules were anymore, and if I'm being completely honest, I might have said out loud, "I don't even care." Honestly, I think the tech was confused herself at that point, and she let me be. I enjoyed my meal, and the visit with my son in peace.
It was later that evening when I was alone again and had been in the recliner for several hours, and the night nurse came in that I noticed that my lower legs and feet had swollen to (what I thought were) frightening proportions. I had been wearing some no-skid socks from home that had ribbing on them, and the ribbing indented my ankles to their normal skinny state, while the fluid swelled my lower legs and feet to look like they belonged to a freakish comic book character. When I took the socks off, I told the nurse, "These are not my legs and feet!" It might have been funny if it wasn't so disturbing. She helped me prop my legs up on pillows, and I tried to wriggle my feet around just to see if moving them would help drain some fluid.
Having forsaken the bed alarm the night before, I slept again in the recliner on Sunday night. There was no venting this time. I was already there and I just resigned myself to sleeping there. I was told some time on Sunday evening that the supervisor of the administrator who had spoken to me on Saturday evening would come and visit with me on Monday morning. While that was too late to do me any good, I said I would welcome her visit. The problem was that in anticipating her visit, I couldn't sleep for thinking about it and what I wanted to say to her.
It was mostly a sleepless night. I repeatedly got up to go to the bathroom that night - setting off my alarm for the duration of my absence, only to have it continue to sound until I came back to the recliner and sat down (at which point the alarm would shut off). Numerous times during the night, no one heard the alarm - or at least, no one came to shut it off - making the whole situation even more absurd. It's a good thing I didn't actually need help. After a few hours of trying to sleep, I developed another terrible headache - actually, nearly every morning and/or evening the second half of the week, I was experiencing bad headaches. Was it my blood pressure? Was it the emotional toll all of this was taking? Was it the impossibly uncomfortable sleeping options? I'm sure it was everything.
Finally, in the still-dark hours of Monday morning, exhausted from no sleep, I knew I'd had enough of the craziness. I'd had enough of worrying about my health growing worse as the weekend wore on. As I sat there, in the dark, with a massive headache, looking at my swollen feet, I finally said to myself, "If this place cares more about their liability than they care about my health, I clearly have to take control of the situation". I don't know if I called the nurse into my room, or if my alarm did when I got out of the recliner, but she was soon there watching me as I was (again, all by able-bodied myself) moving blankets and pillows now from the recliner to the couch. The couch, while it was too short to lay stretched out on, was the only place I could lay down that didn't have an alarm. I got a cold wet wash cloth from the bathroom to put on my head, and I tucked myself in as best I could on the hard vinyl and told the nurse, "I'm done with the alarms. I'm rejecting them and I'm going to try to get some sleep here on the couch."
At first it seemed as if my nurse didn't quite know what to do. I was so busy taking care of myself, I didn't even pay attention to whether she was in the room anymore. And then, when I was all wrapped up and curled up on the couch, with a cold washcloth over one eye, and feeling like I might have just started to fall asleep, it seemed like she bent down close, and sounding like she was reading a list of what all I was risking if I fell, she told me I could suffer a concussion, bleeding into the brain, and I don't remember what else... It all sounded dire, but I knew the risk was slim to none, and I told her I accepted the risks, and I held her harmless. I did poke my head up to ask if they would continue giving me prescribed medicines (I only knew for sure that I was getting antibiotics at that point). She assured me I would be given medicines. I was then left to sleep for what felt like the most glorious, peaceful few hours of my whole time in the hospital. I never saw that nurse again. It makes me kind of sad because she was the nurse I had the first night of my hospital stay and then again on my last night, and I hated that it ended with her on what was probably a seriously unpleasant note from her perspective.
I'm not sure what time it was when the next day's nurse came in. I barely remember interacting with her early in her shift, but I think she came in early and left. When I finally woke up the whole scene was very surreal. It was extremely quiet outside my room - which was was weird because my room was right across from a juncture of two hallways and it was never quiet for very long. It could have been my imagination, but it felt like I was intentionally being left alone. Was the word out to leave the crazy woman be? Let her sleep? Keep away from her?!? I knew I hadn't been the least bit crazy, but I still wondered if I was being talked about. And left alone.
While I'm sure it felt terrible to my nurse for her to end her shift with me on the couch, personally, considering what I had endured, I think I was a fairly pleasant and peaceful protestor. All I did was declare I was done with the alarms and took matters into my own hands where I slept. While it felt like kind of a big deal in the moment, it also felt like the only responsible to thing to do. There was really nothing more to it than that.
Still sleepy, I got up, opened the window shades, and sat in the recliner for a while taking in the peaceful, quiet morning - knowing I would be sprung at some point that day and as far as the staff was concerned the patient who'd lived in Room 4111 for the last week would just become history. That also made me a little sad since most of the week I had been fairly cheerful, mostly pleasant, overall a downright decent person.
It did make me wonder, though... Could I have had this kind of peace if I'd declared my independence earlier? I actually did try to on the Saturday that I fell. My nurse, who was wanting to help me, thought I could refuse the alarms under the umbrella of "refusing treatment". When she told me that, I happily declared that I refused them. Shortly after that, she was told by her supervisor she was wrong for telling me that, and I guess my declaration of refusing the alarms went out the window at that point.
Anyway... finally feeling fully awake, being completely able-bodied, I got a shower, got dressed, got packed, and was waiting when Greg came to pick me up around 10am.
Shortly after he arrived, my quiet, ignored room suddenly became a hive of activity. While doing all the last things that needed doing for me to be discharged, at one point I had in my room the discharging doctor (who I hadn't met before), a technician who had some imagining machine (I cannot remember what she was needing to get a picture of at that point in time), and two people from the home health care company who brought in a large box of the balls filled with antibiotic that we had to tote home. It was quite the scene. Greg told me later as he looked on from the couch, it was unbelievable that while one person was trying to take my blood pressure, another person was talking to me, asking me questions and having me sign papers. The doctor, trying to listen to my breathing, at one point tapped me on the back of my shoulder and told me to stop talking when I tried to answer questions that were asked of me. LOL The ridiculousness of it all kind of made me happy. It was as if I couldn't take any of it seriously anymore. Or maybe I was just glad that it all meant I would be leaving soon.
With all that finally over, I was then told that the administrator who wanted to see me had finally gotten there and would soon come to my room. Believing I would be leaving at any moment, I said I really didn't want to begin a conversation that we might not have time to finish. At some point, though, she stopped in. She was a friendly, approachable woman, and I while I didn't anticipate having enough time to talk in any meaningful way, I was actually glad to see her. I don't know how she felt brave enough to show up without a police officer "friend", but I was thankful for it.
We ended up having plenty of time. I told her much of what I had told the other administrator on Saturday night. And she seemed more thoughtful and caring about what I had to say. The thing that seemed to have the most impact on her was my telling her that the night before, when I couldn't sleep, I was looking online at the hospital's Patient's Rights page, and I began to wonder if my patient's rights had possibly been violated by this computer-driven policy, in that when the staff was compelled to follow the instructions given by a computer, I instantly lost my voice in the discussion of my care. I told her I felt like I had a voice with the nurse, but once the nurse was overridden by a decision made by a computer, and since everyone claimed to be at the mercy of the computer's decision, I no longer had a voice.
She joined the chorus of all the hospital staff in saying that they are extremely frustrated by this policy. That it takes away everyone's autonomy, and the nurses and their direct supervisors think it can cause more harm than good. It certainly did in my case. I mentioned that I would be interested in writing about my experience and submitting it, and she encouraged me to do so. She believed it might be helpful as they continue to discus the policy. I told her my first priority when I got home was to get some sleep, but I would write about my experience, and submit it.
These posts are a longer narrative of a shorter, more succinct, report I have written for the hospital. I have to say, reliving the ordeal filled me with depression and sucked the life out me for a time. My experience of spending a week in the hospital (for the reasons I was compelled to) took about two weeks to mentally and emotionally recover from.
I'm better now, thankfully. Scarred from the experience, but better.
ETA: My blood pressure was within a healthy range by the time I got home the same afternoon I came home (was taken by the home health care nurse), and even the swelling in my legs and feet were starting to resolve already that day. In less than a week my legs and feet were completely normal.
For what it's worth, I walked out of the hospital on the Monday I was discharged (a week after walking in). Walked the distance from the cancer floor to the elevators, held my own as I rode from the fourth floor to the first floor, walked all the way to the front doors, and out to where our car was parked a bit of a distance from the front door. Figuring I would be told it was hospital policy for me to be wheeled out, I was actually planning on walking out on my own two feet in protest, so I was a tiny bit disappointed when the nurse told me it was my choice to walk or use a wheel chair.
This same nurse gave me a big (and slightly lingering) hug after we loaded the car with all my stuff. I was surprised. Normally, they practically tip you out of the wheel chair into the car before they rush back into the hospital. I received the hug (and gave back in kind) as a confirmation that I was a decent patient, and maybe read into it a sense of apology that I had had to endure such a terrible ending to a hard week.
It was not the people (especially nurses and technicians I encountered) that work at this hospital who were the problem in any way. They were mostly wonderful. Kind and caring. It was the system of allowing a computer to make a decision that impacted a patient's well being - on so many levels - that was the problem.
