August 9, 2021 – Kidney Surgery (Bad Patient Syndrome)

My friends, I started writing this post months ago and because I am completely exhausted (for reasons I’ll explain another day) and need to get some rest, I’m going to try and stitch it together and present it to you in the most cohesive way possible (rather than starting from scratch, which is what I usually do). With my very difficult mother-in-law being placed in a care home in recent days, I found this topic relevant. She is known for giving people a run for their money and I imagine she’s putting the nursing and care staff (at the facility she just moved in to) through pure hell at this very moment. As odd as it sounds, I find this comforting. Let’s be clear, it doesn’t give me pleasure knowing that she’s putting people through hell, however, what does give me pleasure is knowing that because of her, I’m not the worst patient who exists on this planet. Ordinarily, in a competition, I like to be awarded the top prize. In this particular case, I’m more than happy to come in a distant second. So in an attempt to help you understand how lousy of a patient I am, I thought I’d share a bit about when I had my kidney transplant.

The last surgery I had was the ‘mother of all surgeries’, a kidney transplant. Everything went incredibly smooth. My brother (my donor) and I both arrived at the hospital first thing in the morning, stomachs empty, and freshly showered. After checking in, they had us each go to pre-op where we had to remove our clothing and jewelry and put on a cloth gown, fuzzy socks, and a head cover that resembled a shower cap. And by the way, when I say ‘we’, I should clarify that we (my brother and I) were in separate rooms. After our simultaneous wardrobe changes, we were both ‘fitted’ with an IV. Additionally, in order to prevent nausea, special medicated patches were placed behind our ears. Within a half an hour, my brother was wheeled into the operating room. I followed soon after. It was pretty wild. My brother was in the room directly across the hall from me and while his team was removing one of his kidneys, another team was prepping me. Once his kidney was removed and flushed out, a doctor literally hand carried it across the hall and it was placed directly into my body (in the hip region).

A ‘fair amount’ of sutures later and voila, I was back in business! How’s that for modern medicine?! A nurse then wheeled me to recovery and from there to my actual hospital room, and that’s when the trouble started. I felt like a caged animal in an insane asylum. I had an IV in my neck (jugular), one in my left arm, a Foley catheter, and straps on my calves (that were attached to the bed) which applied pressure periodically to prevent blood clots from forming. In addition to all of those ‘doo dads’, there was a stinking alarm on my bed. Anytime I would sit up, it reminded me of a scene from the movies when someone is driving down a road on a moonless night and then a cop appears (out of the blue), blares the siren, and puts on a light display to alert ‘that someone’ that they had better pull over in a hurry, ‘or else’. Each time I went from laying flat in my bed to a seated position, an annoying alarm would go off. Bright lights would start flashing and a really loud alarm would start blaring and then the nursing stuff would come barreling into the room. And it was all because I couldn’t bear to lay flat on my back 24/7.

A simple positional change would turn into a big drama. I’d be bombarded with a series of questions, “What are you doing? Are you all right? Why are you trying to get out of your bed? Do you need to go to the bathroom? Are you going to throw up?” to a series of admonishments, “What are you doing?! You need to remain in your bed. If you need assistance, you need to allow someone to help you. You must be accompanied to the bathroom, you are not allowed to go by yourself. Do not continue to deactivate the alarm. We need to know if you’re trying to get out of bed so we can assist you.” The other thing that really got under my skin was how they’d always leave the door to my room ajar. All day and night, the three people assigned to me would sit across the hall and watch me continually. It was very unsettling. I’d be sleeping and wake up and look out towards the hallway and see three different sets of eyes staring back at me. The worst night was Thursday (day four of my hospital stay). Because my brother had been discharged, and it was way past visiting hours, I was on my own. Alone in my room with only my steroid-induced thoughts to comfort me, I went a little bananas.

Upon gazing at the floor, after being awakened out of a deep sleep (because the nursing staff kept talking right outside my door), I noticed that the floor appeared to be crawling. My anxiety went through the roof! I envisioned spiders and flies and all kinds of insects (that weren’t there) moving about. Of course, because I went from laying on my back to a sitting or seated position, the stupid bed alarm went off. The door had been open just a crack, but then it flew wide open, the night nurse rushing in to check on me. As coherently as I could, I tried to tell her that all of the talking in the hallway was keeping me up and that I wasn’t able to sleep. I then mentioned that it was tough being there because I wasn’t able to do the things I normally would (i.e.; washing the dishes, checking my email, sweeping the floors, paying my bills) if I were home and suffering from insomnia. She looked at me like I was bonkers. After suggesting that the charge nurse might be of better assistance, she exited the room. When the charge nurse showed up, she said the other nurse relayed to her that I had requested medication to help me sleep, which I hadn’t actually done.

I told the charge nurse that I wasn’t interested in taking anything, and that what I had said earlier had gotten misconstrued. She then went into the hallway and told the other members of the nursing staff everything I had said (with the door ajar) and they responded by laughing (not with but at me). It was very dehumanizing and it sucked. At that point, I got up out of the bed, forcefully and loudly closed the door, and stewed. I got myself worked into a serious lather! In an effort to get away from the constant monitoring and get a chance to ‘breathe’, I hurriedly unhooked myself from all of the ‘doo dads’ which restricted my movement, grabbed my IV pole and catheter, yanked open the door, and ‘tore’ down the hallway. A male nurse came running after me and asked if he could walk with me and I hissed, “I’d rather you not!” He must have sensed it was best to back off because he left me alone. After going down two long corridors, I happened upon a little seating area. I made my way to a chair, plopped down, and remained there for at least 45 minutes or more.

I honestly couldn’t tell you how long it was, but it felt like an eternity. Regardless, once I ‘cooled off’, I decided to head back. As I approached my room, I noticed that the three people who had been stationed outside my doorway had moved a few feet down the hall. They spoke in hushed voices and didn’t acknowledge me. I felt really stupid and embarrassed because of the way I had acted/reacted, and once I entered my room and got back into bed, it took a really long time to go to sleep because I kept recounting the events over and over in my head. Things were worse in the morning. When the nurses did their switch-out, they stood right outside my door and loudly discussed what had occurred. I heard it all and so did my husband. It was humiliating. I decided right then and there that I was not staying another night in that place. When the doctor did his rounds, he told me he’d release me the next morning and I objected very loudly. He said if everything went well, he might let me out early on good behavior. To my relief, he did let me go but not until nearly 8 o’clock that night.

Before getting the ‘all clear’ from my doctor, I had started to panic because I knew the same batch of people were returning for the night shift. When this very sweet nurse was trying to remove all of the ‘doo dads’, I could hardly sit still. I needed both IVs removed as well as my catheter, and it couldn’t happen fast enough. I kept looking at the clock and it appeared as though the minute and second hands stood still. Once the Foley catheter came out, an ultrasound was performed. That was followed by the removal of the arm IV, which then left the oh-so-joyful removal of the jugular IV. Have you ever had a jugular IV before? I never knew of such a thing until it happened to me. I have to tell you, it’s a very different process removing an IV from your neck than it is from your arm! Needless to say, I was able to get out of the hospital before I came into contact with the night nursing staff. I imagine they were just as relieved, as they probably thought I was a lunatic and were glad to see me go. Anyway, I hope I never have to spend another night in a hospital. That’s part of the reason why I’m trying so hard to ‘be healthy’. I never want to experience anything like that ever again!

P.S. As much as I wanted to, I never got around to mentioning the ‘moaning lady’ or generating upwards of 7 liters of urine a day. Unfortunately, those two items ended up on the cutting room floor. Oh, well. Got to go. ‘Bed’ calls!

2 thoughts on “August 9, 2021 – Kidney Surgery (Bad Patient Syndrome)

  1. Oh, the hospital stories I can tell you … from a staff perspective 😉.
    I remember how the nursing staff would call me early in the morning to come and see patients that were unhappy with nursing staff (especially the night staff). It seemed that patients do get anxious when it’s getting dark (and I’ve always written in my reports that we really need compassionate staff during the night – although patients did not need that much medical attention then, because they’re suppose to sleep, they were in need of an understanding and kind nurse to deal with their anxieties).
    I hope you rest well and regain your energy soon … you need to start packing girl!!

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    1. Thank you for being so understanding. I felt so foolish because of the way I behaved. The combination of feeling vulnerable + the steroids really screwed with my head. The doctor said a lot of people hallucinate after a transplant because of them. Fortunately, I’m on a maintenance dose now which doesn’t have me seeing non-existent insects. The only ones I see now are REAL. Ack!!!! Yes, I do have to start packing but having trouble figuring out where to start. So overwhelmed…

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