Sit Down Before Reading, A Memoir by Dave Bexfield
My UTIs weren’t stopping. My frenzied urgency to urinate wasn’t abating. My bladder was in full revolt. I finally had to admit it to myself: as much as I wanted to successfully self-catheterize, I was anything but successful. And I can’t believe I just wrote that I “wanted” to put a godforsaken 6-foot hose (length may be exaggerated) into Master John Goodfellow. But I really, really did. Unfortunately, for every successful “attaboy,” there were two or three “whomp-whomp-whomps” complete with audible trombone sounds. Failure meant we had to go to Plan B. So I called my urologist for advice.
“Just come in today and we’ll put in a Foley cath, Mr. Bexfield,” said the exasperated nurse before I could protest. My Plan B was a different type of catheter, maybe some helpful tips and tricks, not a permanent tube in my membrum virile that required monthly maintenance. She heard the concern in my voice, which she quickly tried to assuage. “When you have sexual relations, you just fold over the tube onto itself and put a condom over everything. No problem!”
I was in no way assuaged. But because my UTIs persisted, I was asked to return to the office to demonstrate my technique, which they clearly thought was suspect, convinced I had to be giving myself these infections. Did I know that I needed to wash both my hands and my dingle after working with farm animals? Was I aware that using the catheter as a makeshift dog leash prior to insertion might compromise sanitation? And that it was not recommended that I use my own saliva as lube because of bacteria? And ewww?
Now, I’m not shy, but one would think giving a penile demonstration before a live studio audience—tasked with observing and then grading said performance—would make even the most extroverted pause. Yes, one would think. But it’s me, and I knew I had this self-cathing thing dialed with a near perfect hands-free method that I had developed to avoid virtually all contamination risk. You might say I was so confident that I was, uh, cocky. As I waited for the appointment to begin, I tried a series of motivational measures. You know, the basics, all the way down to picturing the encouraging “APPLAUSE” sign flashing over the examination table after my bladder’s successful draining.
It turned out better than that. If I could’ve given myself a standing ovation I would have, but since I lack the ability to stand, I just gave a knowing “I-told-you-so” grin. Which, for better or for worse, also meant no one was closer to solving this disturbing UTI problem of mine. And my lame humor, one of my favorite coping mechanisms (I used the word “lame humor” when I’m also disabled, get it? har-har), wasn’t helping at this very moment. My body was collapsing. My brain was splintering. Laura and I were doing whatever we could do to keep it together—twine, duct tape, a tube of three-year-old nearly dried-up Krazy glue—while we waited for answers. Answers that were not coming.
The Desperation Heave
When the next UTI struck, just days later, I had reached my limit. Light years beyond my limit. This had to stop. I sat down at the computer and wrote my urologist, neurologist, and primary care doctor this final desperate plea for help (abridged for relevance and readability).
October 22, 2021
After two UTIs in the last month and an alarming incident (detailed below), I’m looping in my entire medical team for this. … I desperately need to crack this conundrum.
UTIs. My frequent UTIs (or suggestive UTIs, if not confirmed at Urgent Care) began in September of 2020. Before that I had a UTI in August of 2019. Anything earlier was random and rare. These incidences have returned with alarming regularity. They occur seemingly monthly. … When I get these UTIs, I always experience a rapid and sudden increase in frequency and urgency. This is often accompanied by a general lack of bladder control. Upper body strength may decrease. There may be a slight uptick in body temperature. The urine will often turn cloudy (esp overnight). … Of note, I typically experience no pain, no fever, no chills, no sweats, no vomiting, no burning.
Antibiotics. Taking antibiotics results in quick and noticeable relief, and my bladder can feel normal fast, often hours after the first dose and almost certainly by the second day. Marked improvements in urgency, frequency, and incontinence as well as strength (if weakness was a symptom). Indeed, it is dramatic: it’s as if my MS bladder issues all cease, with me urinating normally every few hours. (After years of MS bladder issues, normal is a strange sensation. … I sleep normally and my QOL is good while taking them. … Within a week or two after stopping whatever antibiotic, however, issues begin to return.
Low-dose Antibiotics. To try to curtail the UTI frequency, I started low-dose nitrofurantoin 50mg daily at bedtime in February of 2021. The UTIs still returned, although not as quickly. I took a personal 2.5- month break over the summer (May-July) to see if it made a difference, instead trying cranberry pills and D-mannose but to no avail. Both have since been discontinued. I restarted nitrofurantoin in August before discontinuing in September of 2021 at the recommendation of my urologist.
Other Observations. Common sense suggests my two most recent UTIs are CAUTIs [Catheter-associated Urinary Tract Infections], but I’m skeptical. I take safety seriously and have worked vigorously to avoid infection. After my latest UTI, a nurse for [my urologist] observed me cathing to look for flaws and said my technique was textbook. … For that reason and others, going to a Foley or suprapubic catheter does not appear warranted at this stage without more clarity on why these UTIs are occurring.
Mental Health. In between my most recent UTIs, which were both treated with antibiotics (in mid-September and mid-October), beginning in late September for about 10 days to two weeks, I had a noticeable mental health issue. I had never had one before. ... There was a mix of paranoia (people stealing ideas from me!), fatalism (destined to die soon from Covid!), and delusions of grandeur (the best idea in the history of the world!) all combined with a severe lack of sleep. … At the time I did not know I was in crisis; it felt real. I feel totally normal now. A side effect of a lurking UTI? An unexpected reaction to medication (Flomax, antibiotic)? An MS brain lesion gone haywire?
Thanks for helping me get to the bottom of this vexing health challenge. The needle has moved beyond frustrated into concerned. Let me know if I can provide any additional information.
[Unabridged doctor letter can be read here]
I clicked send. And then held my breath.
Now, when I casually said that my needle had moved into the “concerned” zone, I think you all can deduce that the needle actually was pegged far right, into the HOLY SHIT urgent red-zone level of health crises. But like diffusing a ticking bomb, panicking your medical team isn’t going to help them unlock the mystery any quicker. WHICH WIRE DO WE CUT, RED OR THE YELLOW, GAAA!? OOPS—THAT WAS THE FEMORAL ARTERY. See what I mean?
My health bomb was ticking, loudly, a cacophonous thrum of a thousand clocks, with midnight terrifyingly just minutes away. When life feels like it is closing in on all sides, turning to humor can provide desperately needed oxygen, no matter how fleeting. I took a long huff, recalling the last time I was in a seemingly intractable situation, just lower stakes. That time when Laura and I had accidentally locked ourselves outside of our inn. Both of us totally butt naked. Standing there in broad daylight, in a panic armed with only my forearm crutches as a shield, I thought it couldn’t get any worse. But then karma had other ideas. My Viagra kicked in.
As I smiled through my current terror, I could never have imagined that our experience on that fateful naked and very erect day would one day help save my life. And maybe yours.
Chapter 7: Final Hail Mary
Chapter 9: For Laura (coming 7/6)