My Gothic Body: Stone, part 3 – Bag Life 2: Emergency

Part 1, part 2, part 3.1

TW: life with nephrostomy tube and bag; emergency room visit

I stayed in the hospital the night of February 7 to be monitored. Mostly, I think, to make sure the internal bleeding was under control before being allowed to leave. (The surgeon nicked my ureter during the procedure, which prompted him to halt the operation. He rescheduled a second attempt for after my ureter healed.)

The first night home, Thursday, February 8, I felt a little disembodied. Presumably due to the anesthesia and the shock of the unexpected new life thrust upon me. That night was the only night I took any of my prescribed narcotics. It wasn’t that I was in pain exactly, it was more that I felt entirely discombobulated and didn’t know how to categorize all the new sensations my body was experiencing.

Alvin the dog was not happy with my arrival. I smelled weird, I moved weird, and I was carrying a white bag, which, presumably, smelled of urine because it was filled with urine. He was uncomfortably interested in my nephrostomy bag and so I started carrying that bag in a cheap cloth grocery bag, later replaced with a purse-like bag with a shoulder strap meant to be used for carrying dog-related stuff when out walking the dog.

Due to anesthesia and then oxycodone my bowels weren’t moving as they should and by Friday the constipation was increasingly uncomfortable. I first tried to rectify this with the stool softeners prescribed by the doctor. When that didn’t work I asked J to run out and get me an over-the-counter laxative from CVS. It was a pretty crummy day overall, discomfort from constipation, discomfort from the surgical wound in my back, and discomfort from trying to find positions in which I could sit without pressing on the nephrostomy tube worming its way from my back, and anxiety about going through all of this and still going to work on Monday.

Fortunately, the laxatives had their desired effect around 10pm and I imagined I would be able to get some rest.

At 4am Saturday morning I found myself wide awake and experiencing a calm lucidity. I went online and ordered new sweatpants and a special bag with a belt for carrying the nephrostomy bag. I had to be back at work on Monday and needed to figure out how to live life with this unexpected development.

Confident I had everything sorted out I did almost nothing on Saturday except rest.

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Over the course of Saturday I experienced some problems with the bag. At least, what I perceived as problems. Until Saturday the bag collected urine consistently. Starting Saturday there would be stretches of time when nothing went into the bag.

I had been told by the nurse to expect this and presumed it was time to clean the tube with a special syringe apparatus they gave me just for this purpose.

Here’s the process —

• turn the stopcock to off to stop fluid from flowing into the bag,
• detach the bag,
• attach the special syringe full of sterilized water,
• turn the stopcock back to allow the syringe water to flow into the tube,
• squeeze the water, slowly but deliberately, into the tube,
• turn the stopcock to off,
• remove the empty syringe,
• reattach the bag,
• turn the stopcock again to allow urine to flow from my kidney into the bag.

I spent a lot of time online trying to find reliable information about the whole nephrostomy bag process, but didn’t have a lot of luck.

The drainage continued to be erratic over the course of the day. By bedtime I’d flushed the tube multiple times and thought everything was working as it should. I awoke in the middle of the night with nothing in my bag. By dawn the bag was still empty and it looked like it was time to visit the emergency room. (An NHS site said that if nothing flowed into the bag for 10-12 hours I probably needed professional help.) If this had been a weekday instead of a weekend I could have gone to the doctor’s office, but, because Sunday morning, I had to visit the emergency room (which my local hospital calls an emergency department). When J woke up I explained the situation. There was no rush but I needed someone to help me understand why urine had stopped moving from my kidney to my bag.

We arrived at the hospital emergency department around 9am on Sunday morning. If nothing else, that seemed like it would probably be a time when not many people would be there. And, there weren’t. Still, there was a wait and the nervousness of not knowing what the end result might be. My hope was that I’d only need to swap out my current bag for a new one. But who knew?

We were eventually moved into a small examination room where we waited some more. Just before being moved to the room I’d peed in the bathroom and so there was nothing available when the nurse asked for a urine sample. I started diligently drinking from my water bottle to generate a sample while we waited to see a doctor. There was a door leading to a hallway used by staff and it was open. Several nurses worked at computer stations in the hallway and we passed the time listening to them gossip. They had a lot to complain about.

Eventually one nurse (wearing a paramedic t-shirt, so maybe a paramedic?) came in and listened to my tale and said I probably needed to have my tube replaced. I didn’t really appreciate what that might entail but it sounded reasonable. She left and we never saw her again.

Not long after she left two doctors came in. One I recognized from the morning after the operation. He’d come by to check on my progress and he’s the one that told me officially that the procedure had been shut down. He was part of the urology team, a resident I believe. His associate was an impossibly young-looking woman, very out-going and positive, and she did all the talking. I learned later (though she didn’t mention it at the time) that she had also been part of the team that did my operation.

“We finished our surgeries and rounds for the morning and saw that you’d been admitted to the emergency department and thought we’d swing by and see what was happening.”

I explained how the bag wasn’t collecting anything despite multiple cleanings.

She detached the bag (without turning the stopcock) and using a syringe withdrew urine directly from my kidney (there’s the sample!). Weird sensation. She also cleaned the tube. In retrospect, I think whatever she did ended up fixing the problem. The tube was blocked somehow? Regardless, it worked after she was done.

I mentioned that she didn’t turn the stopcock and she explained that the stopcock wasn’t for stopping the urine flow. Instead, it was meant to hold the stent in place. Every time I’d turned the stopcock I’d loosened the wire holding the stent in place. I think that ended up dislodging my stent ever-so-slightly leading to increased discomfort as time passed. I’d seen the wire retreating into the tube more and more every time I tried to flush the tube but didn’t realize its purpose was to hold the stent into place. I didn’t really understand what purpose it served.

She didn’t mention it during the visit but shortly afterwards I got notice from the doctor that I needed to come into the office to have the 3-way stopcock attached.

FLASHBACK!

Remember this conversation from my night in the hospital?

“What’s this?” Nurse Mary asked Nurse Cindy. They were looking at my back and I couldn’t tell what they were talking about. I was still wrapping my head around what it would mean to live with a bag attached to my body.

“I don’t know.”

“Did you put it on?”

“No. It was like that.”

“Well, take it off. It’s redundant. We don’t need it. See (and she fiddles with something I can’t see) you can just twist this instead.”

“OK.” Nurse Cindy leaves the room to retrieve all the bandages and stuff Nurse Mary directed her to collect for me to take home.

In retrospect it seems clear that Nurse Mary removed the 3-way stopcock and incorrectly identified the stent lock as the flow control element. Possibly the stent would have been uncomfortable regardless, but I kind of think constantly loosening the stent lock led to increased discomfort.

Once the impossibly young doctor finished flushing the tube and taking a urine sample the bag started working as it should. She mentioned that if she were the lead urologist she would have capped the tube and not made me wear a bag. She offered to phone my urologist to see if he was willing to do the same. She stepped out of the room to make the call and returned a few minutes later saying my urologist wanted me to wear a bag.

She sent me to get an x-ray to make sure the stent wasn’t wildly out of place and then I was sent to the waiting room until she could review the x-rays. About 30 minutes later I was discharged, bag once again collecting urine from my kidney.

Wow! Such a long entry. Still to come — working and living with a bag, bacterial infection, and farewell to sleep. Oh! And ultimately, it all works out and my health is returned.