My worst medical nightmare nearly came true.
When I wrote “How not to save a kidney” earlier in my cancer journey, I described how my transformed, now aggressive lymphoma had compromised the functionality of my left renal organ, leaving me with only a working right one.
My worry now was that something could happen to my remaining kidney, putting me on a path to dialysis with little chance of getting into the innovative CAR-T cancer treatment I so hoped might cure me but hadn’t, at this part of the story, yet begun.
At every blood test, I have my creatinine level taken. This measures kidney function. With only one working kidney, if it stayed somewhere between 1.0 and 1.3, I was good to go.
Imagine, then, my surprise when it shot up to 2.3. I sent the results to my hematologist. Her response was fast and frightening:
“Get to the ER now. I’m ordering a CT.”
I got into the CT room fairly rapidly. The problem is that, in the overworked and understaffed ER, it can take hours before a radiologist is able to write up a report, and the attending ER doc didn’t want to let me go home until he had a better idea of what was happening.
When the answer finally came, it became clear my tumor had either shifted or grew and was now pressing on my good kidney, causing a partial blockage such that my urine was not draining properly.
The ER doc recommended I be hospitalized. So, up I went, back to the hematology inpatient ward, where I’d previously enjoyed a not-so-pleasant stay (“Flying through hospitalization”).
When I got there, the office had somehow gotten confused and written me down as a woman (shades of the nickname those bullying junior high students had long ago given me: “Briana”) and had intended to place me in a shared room with another sick lady.
My wife, Jody, asked as politely as she could manage if there was a private room available. Miraculously, there was!
In the morning, the doctors strongly recommended a catheter to help remove any excess urine by way of – well, we’ve seen this story before.
I had insisted on full sedation when I had that stent inserted previously into my ureter (unsuccessfully, as we later learned) to save my left kidney. There was no time for that now. The process was quick, but every bit as painful as I’d dreaded.
But hopefully, I’d get my creatinine number down and I could get back on the CAR-T track.
It didn’t, though.
The next morning, despite a growing bag full of pee languishing on the floor, my creatinine level actually went up. There was only one thing left to do.
I needed an urgent nephrostomy.
Nephrostomy (or “nephrostome” as Israeli medics insist on translating its pronunciation into Hebrew) is an operation where they insert a catheter directly into your kidney. On the other end, a bag is affixed to your lower back or leg. The urine then exits the body that way, relieving any pressure and, if done without delay, saving the kidney.
I was assured the nephrostomy wouldn’t hurt as much as the urethral catheter, but it was yet another indignity in a series of humiliations that shook me.
How would I sleep with a bag of pee affixed to my back? Would it smell or leak? How could I discreetly walk around once I got home? Going to the pool or a public jacuzzi would definitely be off the agenda. (So much for that dream of splurging on a fancy hotel before the CAR-T began.)
Still, it wasn’t as awful, I presume, as a colostomy bag, which is given when part of your colon is removed in order to catch your poo. I was, nevertheless, feeling as dazed and confused as a teenage Parker Posey in a Richard Linklater movie.
Oh, and the procedure would also be done with only local anesthesia. What choice did I have, though? The alternative – dialysis – was a redline for me. Sure, I knew I could get on a list for a kidney donor – not to mention my kids all have two healthy ones – but as far as I was concerned, that was it. I’d start saying my goodbyes.
After all, how could I be treated with CAR-T, which requires three weeks in an isolation room, while also needing to be hooked up to dialysis several times a week? It was possible, I suppose, but did I really want to?
The timing then became even more critical.
The morning the nephrostomy was due to be inserted, my creatinine level shot up, nearly doubling. Had I waited even a day or two longer, the loss of my once “good” kidney would likely have been irreversible.
By that night, my creatinine had already started to drop; the next day, it was down to normal range. Kidney saved and CAR-T back on track – although I was now retaining large amounts of fluid.
Since the nephrostomy had been inserted, I had gained an astonishing seven kilograms in a single day and my legs and ankles looked like golf clubs for a Jolly Green Giant commercial.
I was kept in over the weekend for monitoring, then for another week until, eventually, the nephrostomy hospitalization melted into the CAR-T one. All I had to do was change floors.
It’s been several weeks now since I’ve been able to pee like a normie. Since my left kidney produces nothing, everything exits via the nephrostomy. My bag continues to fill up regularly with around two liters of pee a day.
To paraphrase the Bard, “To pee or not to pee is no longer the question.” I could drink hot chai loaded with caffeine all day and not have to run to the bathroom every few minutes to relieve myself as before.
While that’s a nice “benefit,” I’m looking forward to when my cancer is, hopefully, entirely gone, the nephrostomy is no longer needed, and I can pee like the rest of humanity again.
I first wrote about my new pee-ing reality for The Jerusalem Post.
