Urology is the branch of medicine that deals with the urinary system. With that information, you may now make an educated decision about whether or not you want to read the rest of this post.
This is hands down the hardest part of the big picture of paralysis. Did you know that most people with spinal cord injuries lose control of bladder and bowel functions? Neither did I until my accident. Usually I just refer to this all as “bathroom stuff” and ask for generic miracles, but I’m going to give you some rare insight into the mysteries of urology. Why people go into the field of urology remains a mystery to me, but technicians who work at REHAB Basel in this department are delightful.
I showed up for my 8:45 appointment, and after they’d finished their breakfast, the nice techs ushered me into their fancy room which I’ve been in less than a handful of times. I know the drill by now though. After a couple pleasantries that I tried in German, I said I’d try to answer the questions about my liquid input and output in German rather than English. They asked the questions slowly, enunciating clearly, and offering the English words when needed. In the middle, the urologist walked by and greeted me in English; she turned back when she heard the technician asking the next question in German. “Don’t you know she only speaks English?” she chastised in German before the other woman responded that I’d asked to do it in German. We all smiled and continued on.
On to the fun part. (Note: please read the last sentence with heavy sarcasm.)
With all the basic information about my medications and system functions, I headed over to the long table with stirrups and the second technician helped me remove the necessary clothing before sitting and settling my legs into the stirrups. Many of you know this is not a position that women generally have positive associations with; I am no exception. With me in place and that glaring hospital spotlight positioned as well, the first technician put on her sterile gloves and began touching different places and asking if I could feel anything. Though it’s significantly impaired sensation, I have an awareness of touch, and I communicated that.
“Okay then, you’re going to feel something cold here.”
I wasn’t exactly sure what was going on, but I knew she was connecting some kind of electrodes. Next she held up a strange stick with a small oblong balloon on the end and explained what she would do with it. I knew what was coming – this isn’t my first dance. I also knew I wouldn’t be able to control the muscle spasms she would trigger when she inserted the device into an exit only. That thing stays in for the rest of the appointment, and it makes laying on this cold table even more uncomfortable.
But we’re not done inserting things yet. She gets more sterile gauze and cleans another area before inserting another device into another exit only. The involuntary spasms trigger an apology from the technician. “I’m fine. Don’t worry.” We move on. She explains to me the process that I’ve heard before (though this time entirely in German).
She’s going to first empty my bladder completely before refilling it with sterile water – actually, I’m pretty sure it’s a salt water compound. Anyways, as she does this she’ll ask me to cough at regular intervals. I’m also instructed to report when I can feel liquid in my bladder, when I feel enough liquid that I would look for a toilet, and when I feel so much liquid that I don’t think I can take any more. She’ll also take pictures every 100ml which I can see on a monitor angled above my head. By now, I’m pretty familiar with the x-ray image of my pelvis. I’m not positive, but I’m pretty confident I could pick it out of a line up of other x-rays based on this tiny, tiny cliff at the base where it opens that looks pretty unique.
I spend a lot of time looking at that translucent image to distract from the fact that I’m hooked up to electrodes and have devices sticking into me performing unnatural tasks that are particularly unpleasant. “Husten,” the technician instructs, and I obediently cough in response. After a few coughs, the machines I’m hooked up to make a series of beeps and a new image comes up on the monitor – my pelvis with a dark black blob resting at the bottom. The blob grows with every new image taken – 100ml, 200ml, 300ml, 400ml. They won’t fill past 500ml, but I don’t even make it that far this time. Somewhere I think around 450ml I tell them it’s enough. I’ve already said I’d head to a bathroom just before we hit 400ml. By now there are uncontrollable spasms coming at regular intervals that are my bladders way of telling my body it’s gone too far.
The tech tells me I’m allowed to release urine if I’m able. I try, but nothing comes out. She gives me a sympathetic look before we move on to the worst part of the whole morning. With my bladder completely full and sending desperate messages to the rest of my body that it needs to be emptied in the form of these butt and thigh spasms, the technician comes around the computer and starts patting my bladder with her fingers triggering waves of spasms from my waist down.
It doesn’t take her long to get that final bit of data, so she ceases with the torture and empties my bladder. She then peels off and pulls out all the extraneous data collecting devices, and the report is ready for the urologist to view. Just a few minutes later, with me still lying on the table, the doctor comes in, shakes my hand, and announces, “We need to give you Botox.”
This is not a conversation at this point; it is a declaration. We talked about this at my last appointment, and she’d prescribed an increase of medication to calm the bladder spasms. “The medication is doing a good job,” she explained as she deftly rubbed the jelly covered ultrasound wand over my stomach, “But it’s not good enough.”
“Okay, um, I asked my insurance about that, and they said the only way they’d pay for it is if you gave them evidence that the medication wasn’t working.”
“Of course. I will write them a letter. The medication isn’t good enough; we have to look out for your kidneys. They might be in danger later if we don’t do something now. This isn’t a new or experimental treatment, so there shouldn’t be a problem with your insurance understanding this needs to happen. Once they approve it, you will make an appointment.”
She then described the process of how she would give me a local anesthetic before inserting a giant needle into me through my stomach and poke my bladder in lots of places with this delightful toxic chemical that would deaden the muscle so it would stop reacting so violently to the moderate to full range of its capacity. After the Botox treatment, I will most likely be able to stop taking the medication that is not fully treating this alone. Unfortunately, I will also mostly likely lose any ability to void on my own which I have intermittently at the moment.
That’s still hard for me to take in, but the day wasn’t a total bust, so let’s move on to the happier stuff. I put my Ravenclaw pants back on and waddled out of the urology department to find Katrina waiting for me. She patiently let me sit for a few minutes as I recovered from the physical discomfort I’d just gone through in the last hour and briefly processed the emotional discomfort of needing a new treatment that’s less simple than popping a pretty blue pill every morning and evening. Then I asked if she’d be alright with me walking to the physiohalle to see if Alex was working. I was so disappointed not to see her when I came for my Jahreskontrolle, so I was hoping that I’d get to show off some of my improved skills from the last year. She wasn’t there, but I waved to Andy before Katrina and I turned around to walk to the car.
On our way to out, though, I saw Alex walking by. I completely lit up as I waved her over, “I was hoping I’d get to see you today!” She came over to greet me, and we talked briefly about the progress I’ve made since leaving REHAB. I told her about how I’ve done hippotherapy and still go to physio twice a week and how impressed the Americans were with my cool Swiss braces. It was the highlight of my day – and that’s saying something because immediately after I went to Starbucks with Katrina and later in the afternoon, my friend Phyllis gave me a bunch of cilantro because she bought too much. Obviously, all that combined made it overall a good day despite the discomfort of the urology appointment itself.
I’m so grateful for all the prayers for my kidneys and connected internal organs as well as for my fears about this appointment. It was not what I was hoping for, but there were still beautiful things. I could make a nice connection about how my life in general is like that – not at all what I hoped for but filled with gifts more beautiful than I could have dreamed. Instead, I’m just going to conclude with another request for your prayers for my kidneys. Here’s the deal, they are beautiful – ultrasound textbook gorgeous – and I’d like to keep them that way. Please pray that my insurance approves this treatment quickly, and let’s ask that even with approval, God will continue to miraculously knit my nerves back together and restore function to me.
