After one of David’s medical appointments, a notification of a new test result showed up in my email.  Imaging of his spine had shown something else in the area of his bladder.  He should follow up with a urologist.  The urology office scheduler called right away.  She found a date for the appointment and outlined the COVID protocols – wear masks, call from the lobby, wait there until called to take the elevator. 

We dutifully followed the instructions.  In the exam room, a nurse asked about symptoms.  David looked at me.  There are no symptoms, I said.  We were called in for a consultation because of an incidental finding on a spine scan.  I didn’t want to talk about urinary incontinence in front of David, but I thought I’d better, so I sped up: “He has Lewy Body Dementia and urinary incontinence is likely at some stage but is exceedingly rare right now.”  She nodded, finished clicking at the computer, and wheeled in an ultrasound machine.  She measured David’s bladder.

The doctor came in soon after the nurse left and explained that David’s bladder was enlarged and wasn’t emptying fully.  That put him at risk for infection.  His prostate was also slightly enlarged.  We had four options: intermittent catheterization, an indwelling catheter, surgery for the enlarged prostate, or watching and waiting.  She would recommend intermittent catheterization.  David could insert the catheter three times a day to empty his bladder in the morning, mid-day, and in the evening.  Surgery might help the bladder empty more completely than he could empty it now, but it wasn’t likely to resolve the problem fully, so there would still be a risk of UTIs.  Again, she would recommend intermittent catheterization. 

I looked at David.  I looked at the doctor.  I put my hand on David’s arm.  “David has Lewy Body Dementia,” I said softly.  “As you know, LBD affects visuo-spatial perception.  He has a hand tremor.  I think it would be very difficult for David to insert a catheter three times a day.”  You could do it, she said.  I explained that I didn’t live with David and that his assisted living facility didn’t allow me to visit every day.  I explained that having a staff member insert a catheter even twice a day would cost $2100 a month. 

“An indwelling catheter is also a possibility, but that carries its own risk of infection.  Surgery would be my second recommendation,” she said.  “It won’t solve the problem, but it might help some.”  I said well, I’d check with David’s other doctors, but my understanding was that surgery had to offer clear benefits to be worth the risk of anesthesia to LBD patients.  “As you know,” I said, and recited the LBDA caution: “People with LBD often respond to certain anesthetics and surgery with acute states of confusion or delirium and may have a sudden significant drop in functional abilities, which may or may not be permanent.”  I would consult with the neurologist and palliative care doctor and send their response through the electronic portal.  We agreed that we would have a follow-up appointment in two weeks.  She wanted to have the nurse show David how to insert the intermittent catheter so that he could see whether it seemed like something he could manage.  “I’m a surgeon,” she said as we gathered our belongings.  “I like to fix things.”  Lady, I wanted to say, we are long past the time of fixing things. 

I’d said “as you know” twice, but I wasn’t at all sure that the doctor knew.  I worried that she might know very little about LBD.  She was a surgeon, not an anesthesiologist, so in the fine parsing of surgical roles, the risks of anesthesia might not be her concern.  But she was also recommending an intermittent catheter to someone who could barely get a t-shirt over his head, who needed five full minutes to get a button through a buttonhole, who spilled the contents of a spoon on its path from a bowl to his mouth.  How was he going to insert a thin tube into his urethra three times a day?  And yes, if I lived with him, I could empty his bladder twice a day.  But somebody needed to explain first why we were doing anything at all.  David had never had a UTI.  Given all that we were already dealing with, why focus on an incidental finding that had so far caused no problems at all?

We showed up for the next appointment, and the nurse inserted the intermittent catheter.  Everyone was pleased with the outpouring.  I decided to leave it at that until I had answers from the neurologist and palliative care doctor.