Drains: Part 2

Welcome back. When we left off, I had gotten the drain placed after some delay and some emotional duress due to my old OR haunts. The drain seemed to work beautifully – I walked out with no pressure or discomfort and could be upright with no difficulty. This was a relief, to say the least. The second hurdle to overcome was getting out of town.

As many of you know, I have spent one week of every summer of my life at Lake Melissa in Detroit Lakes. The view of the lake from the cabin is with me like a talisman. It’s the place I imagine when I struggle to relax. And my mom and I were scheduled to head up on Sunday. Because my labs have looked so good, I was already cleared to go from my kidney people, though I worried about the drain complicating that. Turned out I had nothing to worry about. They even gave me a suture removal kit should I be ready to pull the drain at the lake. It helped that my brother, a doc, and my sister, a nurse, would be at the lake with me. So Saturday afternoon, a day early, my mom and I drove up to the lake.

The first half of the week passed unremarkably. PJ and Maggie and families were with us, so my nieces Miri and Noa ran around and played together. Our newest niece Vivian provided baby TV, and PJ Maggie and I were in top form, able to kindle our cabin siblingness. I did a lab draw in town on Monday, the drain was working well, everything was going great.

I’m building suspense. Is it working?

Yesterday afternoon, Wednesday, I went for a longish walk – maybe 30 minutes. I hadn’t been walking much because of the swelling and I’m trying to make up for lost time. I notice as I am making my way back to the cabin that the bag attached to the drain is full – it has never filled up before, not even close. (click here for more info on the JP drain). I empty the drain back at the cabin and within an hour it is almost full again. This is unusual – the drain typically fills 30-70 cc's over five to eight hours, now it is draining 80-100 cc's within an hour. The other thing I notice I that I’m hardly peeing at all. My brain, strung out on months and years of bad news, set backs and unusual calamities, does the math.

PJ explains how this can happen – a small hole in the ureter, or in the bladder, gets exacerbated by the drain or movement or something, and suddenly there’s a fistula, where urine passes out into my abdominal cavity and ends up in the drain bag. Do I go to the hospital? Do I go back to Minneapolis? What do they do with a urine leak? I spend some time with Dr G (Google) with predictable results. I call the on-call radiologist, who happens to have done the procedure. He thinks a urine leak is unlikely but isn’t sure what else it would be. He checks with the surgeon and they decide to wait and see. I send the following email to C:

“Hello love - I think unfortunately this email is going to focus on me :). As of this afternoon, I'm pretty sure my drain is draining urine - meaning somewhere between the kidney and my pee pee there's a hole, and the urine is leaking into my gut, and then draining from the drain. I talked to the radiologist who did the surgery, who consulted with one of the surgeons (Mark Hill), and they decided to wait and keep an eye on it - as if it is urine they would leave the drain in to drain it, and if it is not then no worries really. The difference has been that the drain is draining a LOT more fluid, and the fluid seems like urine - less viscous, more yellow / clear, and there is a lot of it, while I'm not peeing much at all. What this means is tonight I drain it every hour or two, and keep track of how much is coming out vs how much I'm peeing. Tomorrow I'm due for labs at the hospital in Detroit Lakes, though I'll also check in with my kidney clinic to get a sense of what they'd like to do. I'm guessing I'll be coming home tomorrow to be honest, though both the radiologist and the surgeon didn't seem to think that would be necessary. I think a big thing is checking the kidney function, and that seems to take a while up here (a day or two), while it only takes about 30 minutes at Abbott. PJ and my Dad both offered to drive me home if need be. I'm wishing I had just come home with my mom this morning. 

I'm struggling with this. If there is a hole, the remedy might be to have a foley catheter in until the hole can heal over. At a minimum it means more trips to the doctor, and more worrying. My brain goes to scary things like maybe after fucking around in there so much I become incontinent. Or that I have a foley in for two weeks. Or I am in the hospital for two weeks. Bah. Feel like crying. 

Still the good news is that the kidney seems to be working just fine. It's making urine, even if the urine is going all over the place. Today is day 30 after surgery, which is a kind of milestone. Hall said it's touch and go for the first 100 days. That's September 23rd. 

Maybe in an hour this is all resolved, though I doubt it. Maybe if I didn't get the drain placed ... 

I'm going to wash up, take my drugs, and lie in bed. Maybe watch a show? I feel like I'm reentering that suspended state of recovery, where day and night aren't differentiated, and time is different, uncontrolled somehow. “

After sending this and chatting on the phone with C for a while, I have to pee, and I check the JP bag. It is not nearly as full. Also, I pee a normal amount. I give the drained fluid a sniff – no smell, same as before. It dawns on me that whatever happened that afternoon, I wasn’t leaking urine, and it was pretty much resolved. This made sense. Why, after a week, would I suddenly spring a leak? The radiologist and the surgeon, both of whom seemed attentive and competent, didn’t think it was a leak. I had gone from everything’s OK to I’ll have to stay in the hospital for 2 weeks after 3 hours symptoms that were not that severe, and didn’t, on their own, mean anything. I realized that I had become paranoid, almost hypochondriac, after years of being relaxed to a fault about my health. I prided myself on my ability to live my life with a transplanted kidney. I spent a year abroad, traveling in difficult countries. I pushed through 6 weeks in India! Sick most of the time! And here I was spooked to tears over a relatively minor incident. Even if I had been leaking urine and required a Foley catheter, 10 years ago I would have breezed through it.

I don’t mean to suggest that I would have handled this “better” 10 years ago, if what I was doing could be called handling it at all. Part of my transformation through my health journey has been an opening up, becoming vulnerable, acknowledging the emotional and physical consequences of what I had naively treated as passing phenomenon. I was right to call the on-call radiologist, given the change, but the situation did not merit the level of fear and rearranging of my future my addled brain undertook. The years of body blows and health traumas have left me jittery and wounded. In part, I intellectualized the lost transplant in the spring, finding a kind of refuge in the numbers. Dialysis became routine. I still don’t think of myself as a cancer survivor (and I’m not sure that I should). But reading my email to C and recalling my fear and despair last night, I recognize that I have some healing to do, recovery from post-traumatic stress. I expected to be living a relatively normal life two weeks ago, though I didn’t realize how much I had been counting on that. It’s been a hard time.

Today with the night behind me, I feel that sweet relief that comes from a tragedy avoided. The cabin has largely been a lovely respite – walks, reading books, taking a lot of naps, eating too much food. The weather has been cool and rainy, but considering I’m not allowed to swim, I’m grateful. I stay through the weekend, then back to the world, more and more myself with more of my recovery behind me. My summer has been dedicated to my convalescence, but I’m ready to start working. My hope is to start on a daily routine involving reading, exercise, sitting, and writing, with an eye on becoming more and more the person I want to be. I don’t mind spending time with my body, even so much time – it’s so very worth it. But it’s about time to get back to living more in the context of the world. Thanks for reading!