Another day another drain

Remember how worried I was that my bladder was somehow leaking and draining into the JP drain? Whell.

About a week after Melissa the drain started to slow by about half. Unfortunately, the swelling that precipitated the drain had returned. This meant that the drain had shifted and was no longer in the right position to pull off fluid, or it was starting to clog up (the more likely scenario in my mind). This is common in drains after a few weeks and I scheduled an appointment with Interventional Radiology a week ago Thursday so they could check it out. The plan was to put some contrast in the old drain and see where the fluid was collecting on the scan.

I once again prepped through pre-op, keeping my head this time, and was relieved that the same doc would be working on me. I didn’t have any particular connection with him, just that he had been in there before and was familiar.

I went light on sedation with the hope of paying more attention to the process – the scan shows my insides pretty well and it’s fun to watch the contrast swirl around in there. Right away he noticed that the drain was clogged – he had a hard time getting the contrast in. He also noticed that the area around the drain had mostly closed up, and that the fluid was following a different path to a new pocket.

Clear diagnosis – all good so far. We would replaced the drain and possibly reposition it.

To place a drain the IR doc starts with a guide wire, which I assume can be controlled somehow. They feed that in, following it with the x-ray scan and compare it’s position to where the saw the fluid going in the previous scan. This way they can place the drain where the fluid is collecting. For me, this is where things went wrong.

As he fed in the wire I felt a distinct and painful twinge in a particular spot – like my peeing muscle contracted. I mentioned this (I try to keep them informed to what I’m sensing). He paused and asked if I felt it in my bladder. This was a confusing question to me. What does one’s bladder feel like? How would I know? I said as much, and he carried on. With the wire in place he followed with the new drain line – again I felt this twinge, more painful this time (I assume because the drain itself is much larger than the guide wire). But that was it – the drain was placed. At this point the doc and a guy who was helping him (a discomforting character I don’t really have the space for here), starting talking about getting a quick CT scan to get a better picture of where the drain was. This didn’t worry me much, though they did not do a CT scan after the first drain placement.

CT scans are quick and painless (though I’m always aware of the radiation I’m accumulating over the years – a CT is equivalent to 300-400 X-Rays, so I’m told), and I was wheeled to a waiting area in radiology. The room has about 8 stalls for beds but was empty aside from me. Here I waited.

After a few minutes the tech came in to check the drain. He grabbed a large syringe (about 1” by 6”) and hooked it up and started pulling out fluid. He filled it and drained it into a urinal I was holding for him. He hooked it up again. Filled it again. And again. This was a fantastic amount of fluid – exponentially more than I would have after a full day with the old drain. Too much fluid. I said, casually, seems like a lot of fluid. Yeah, he said, it’s probably in your bladder.

Huh.

My insides were not matching my outsides, as at this point my head exploded. I knew from my previous scare with a bladder fistula (a fistula being a connecting point in the body where there shouldn’t be one – in this case between my bladder and my gut) that fixing it meant have a Foley catheter for about two weeks. The “tragedy” I avoided when I was at the lake. I said to this guy, it’s not supposed to be in the bladder, this is a problem, right? He said that he wasn’t the doctor – and maybe that’s exactly where the doctor wanted it to be.

Right.

Having drained it the tech left me to the empty recovery room. I reeled in this new reality. After about 15 minutes of fruitlessly braining my way around this, the radiologist came in and explained what had happened. There had been a small hole to the bladder. The contrast had gone through that hold and he followed the contrast with the drain. They would reposition the drain and put in a Foley. I would get a bit more sedation. Oddly, he said I could wait to get the Foley in “in case I had some plans where a Foley would interfere.” We both knew that being a person is plans enough, but not reason enough to stall. No, if I’m getting one placed, let’s do it. He leaves.

I’ll mention here: I’ve since asked around about how common this is, to have a drain mistakenly placed in the bladder. As it turns out, not common. Not common at all. Downright rare. At the same time, this explains why I've had so much fluid leaking out of me these last few weeks. 

A long time passes.

Eventually one of the nurses comes in to check on me and get me ready to head back into the OR. I hadn’t given her much though, but she quickly became a rock for me. She asks how I’m feeling and I start crying. She puts her hand on my shoulder briefly, sympathetically, and explains that they are waiting on another patient in the OR, and that she was trying to track down my mom who was waiting for me.

This was a difficult moment for me not only because it was an obvious setback, or because having a Foley is universally acknowledged as being a pain, or that it seemed like the radiologist had made a mistake for which I would pay, but because it crossed two personal demarcations, lines I had drawn about what was acceptable and what was not. I’ve been grateful, out loud and to whoever would listen, about being under while previous Foleys have been placed, and I’ve counted myself so lucky to not have needed a Foley outside of a hospital setting. Now I would experience both imminently.

This illustrates a risk of counting myself lucky by measuring my life against the misfortunes of other people. I know that others have had Foleys placed while awake, and that some people have them in for months. I’ve been grateful that I’m not them. I’ve been grateful that I don’t look sick while others do. I’ve been grateful that I have health care, a strong support network, a good job, food, financial security, and I sometimes recognize these advantages by their absence for others. My response to a sad story is often to feel grateful for what I have, more so than truly recognizing what life must be like for someone without insurance or financial security. Nothing wrong with gratitude – I try to practice it daily – but there is a human connection lost, an opportunity to deepen my compassion and capacity for resilience lost when I measure my good fortune against the poor fortune of others. And occasionally that misfortune becomes my misfortune.

Maybe a reason I avoid complaining is because inevitably I’m served with a deeper struggle, a new level on which to cope. It probably could get worse.

It occurs to me that I may have been that yardstick for some of you.

So I’m waiting in the radiology recovery room, to go back into the OR to move the drain and have a catheter shoved inside of me. Eventually they track down my mom and we commiserate. At this point I’m blaming the radiologist – this seems like his mistake and my consequence. I’m somewhere between angry and sad. My mom says she’s glad that she can be there for me and I am too. Then back to the OR.

My nurse hooks me up to the monitors and administers sedation, which barely registers. I’m focused on the Foley. A tech pokes her head in and asks if the Foley is placed – they will reposition the drain after it is in and they’re clearly busy. She says no, she had just given me the sedation and was waiting for it to work. I feel like she’s looking out for me, and that she’s the only one.

Having a Foley placed while awake was pretty much as awful as I expected it to be. I think I might have done better without sedation, as the only way to ease the insertion is to relax, which would tax the mental fortitude of a Zen master. Being drugged served to disorient my brain without dulling anything else. I groaned, resisted, gritted my teeth, and generally fought the whole process. It hurt like hell. Later I felt bad for the poor nurse with the regrettable duty of putting me through that. The drain was moved back without incident and I was moved back to recovery.

I was sore and angry, and I had not been quiet about my suspicion that the doc had screwed up. He stopped by, certainly having heard this, and talked me through his process, showed me what he was looking at with the scans, and that helped – it gave me a different narrative, one that wouldn’t leave me angry at and hurt by a medical establishment I must continue to rely on. Another doc might not have pursued the same way he did, but he was within his bounds. I’m seeing him again tomorrow to check if the bladder fistula is healed (somehow), and I trust him to treat me.

I’ve now had the Foley in for 10 days. After a rough first night of painful bladder spasms, it has been a pretty smooth ride, aided by bladder spasm drugs, Percocet, and the occasional Valium. In the same way I decided to go easy on my self through the last stretch of dialysis, I went easy on myself this last week. With Paul’s help, I got Civilization V set up in our basement. I spent a lovely week with my colleagues talking about vocation and spirituality, where I shared parts of this most recent journey. I was hesitant to go, and more hesitant to share this part of the story – I was somewhat ashamed of having a Foley in, and I don’t generally talk about the health aspects of my life at work. But I did, and I’m glad I did. It was an environment of vulnerability, and I found strength and healing there.

I’m working to temper my expectations for tomorrow, that everything will be set and I will be drain free by the afternoon, but it’s hard. I’m so ready to be whole again. One of these days I’d like to delve more deeply into what waiting is, as I’ve done my share. For now, I have a cautious optimism that I’m close to the end of this chapter. School starts in a few weeks, this weekend marks two months post transplant; it would be a good time for transition. I’ll keep you posted. Thanks for reading!