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!

Drains: Part 1

Hello friends in internet land!

Last we spoke I was having some issues with swelling and bemoaning my drainlessness after the radiologist declined to put one in. That was last Wednesday. I neglected to tell a short story about that process which I will share now, along with some drama that has followed. It’s Sunday July 3^rd …

The swelling has gotten bad enough at this point that without the hernia belt on I can’t be upright for more than 5 or 10 seconds without the burning pain where one would hope to not have burning pain. I call the kidney doc on-call, an old favorite nephrologist of mine who has worked with me on and off since the beginning. While he’s never been my primary nephrologist, I like him a lot. He hears me out on the discomfort and prone-ness and sends me to the Emergency Department, radiology being closed for the evening. The hope is to get a better sense of what’s going on down there through scans and possibly (my hope) get something done about it, either “tap it” to temporarily drain it, or put in a drain.

C drives me over to the ED – it’s about 430 in the afternoon. Things are pretty quiet so I’m able to lie down on a bench in the waiting area. The check-in triage process feels interminable; sitting up gets progressively more painful, and the guy entering my information (truly, everyone I’ve encountered in any ED) seems to be erring on the side of diligence and congeniality. In my calmer moments I appreciate this, but as it happens I’m tempted to take over the computer and enter the info myself. Eventually C and I are lead to a small ED room, I lay on the bed with some blankets under my butt to attend to the swelling. We wait. A doc pops in after about an hour and we like her immediately. She’s older than most ED docs I’ve met, late 50s, and everything about her put us both at ease. We didn’t pass an hour with her popping in to check on us, give us an update, even if there was nothing new to tell us. After a consult with the same kidney doc who sent me in (she knew and spoke highly of him), I got a CT scan to get a sense of the swelling. After another consult with the nephrologist and one of the surgeons, she scheduled a drain placement for Tuesday afternoon (Monday being the 4^th). The ED doc was ready to send us home, about 4 hours into our visit, but she wanted to do a second lab draw to double check my potassium level, which was a little elevated. Rather than making us wait for the results, we exchanged cell phone numbers so she could text me with the result, or I could call her if she forgot. As in her personal cell phone. It was a singular ED experience. I had never had that sense of being cared for and attended to by an ED doc, and while I was surprised by her sharing her personal number with me (a first in my 15 years of working closely with doctors), it fit with the sense of relationship and connection she extended to us during our stay. I still feel it.

As you know, my Tuesday appointment with radiology did not end with me getting a drain. The ultrasound showed most of the swelling where drains dare not go, so it was called off. Thursday, I saw the same nephrologist at the kidney clinic, and after giving me a once over and hearing about the severity of the pressure on my business, he scheduled a second drain placement for Friday afternoon.

For this placement, rather than walking into fluoroscopy (the ultrasound rooms), getting a local anesthetic and walking out with a drain, I went to surgery pre-op to get sedated, get an antibiotic treatment and prepped for the placement in an OR. The difference, I was told, was in the doc, though I suspected my beat-up belly might have had something to do with it.

The pre-op area is where I’ve gone for my abdominal surgeries, where I was four weeks ago to get prepped for the transplant. Just getting on the elevator to go down one floor, to the surgery area, I felt an anxious dread.

There are three stages before going to the pre-op area to get changed and prepped for surgery. First I check in at a front desk, where I give my name and birthday and am given my file. Next I register at a second desk. Here the procedure is confirmed for the first of several times, and more data is entered. Then I go to the surgery waiting area. This is a compartmentalized room with about a dozen small sitting areas for families to wait for their loved ones. I’ve been here before, but always before a major surgery, and again I can feel myself begin to resist all this, wish I was elsewhere, struggle to breath calmly. A man across from me is on the phone having a banal conversation. When a name is called he leaves. A few minutes later an intergenerational group of 8 get up and leave. After about 40 minutes, I hear my name, hand off my file and head to the pre-op area. My clothes go into a bag and I put on the poofy shirt. I’m sweating but my feet are freezing. My blood pressure, which has been low for two weeks is suddenly too high, from 120/80 to 170/110. There’s talk of treating it before the procedure, which could mean a 2-3 hour delay. The radiologist’s nurse stops by, then the radiologist. An IV is placed. I ask that I get vanco rather than cipro, a different antibiotic less likely to cause a recurrence of c-diff. Having been told that sedation and antibiotics are non-negotiable, I learn that both were negotiable. I didn’t want sedation, crabbed about it to C and my kidney team because it meant I needed a ride and an IV. But the IV is in, so I might as well enjoy the ride. They will deal with my BP in the OR, it still doesn’t occur to me that it is high because of my anxiety. Eventually I’m wheeled to an OR.

I’ve been in ORs for a number of different procedures. Unlike waiting rooms or fluoroscopy rooms where patients tend to be more aware of their surroundings, ORs are spare, utilitarian spaces. There is the OR bed, more like a platform, that I scoot onto from my pre-op bed. Next to me are scanning machines and a bank of screens. There are more screens along the wall, but otherwise the room looks surprisingly low-tech. There is unused space, a lot of shelving and closed cabinets, a second room through a small window, and one chair along a wall. While I’m not cold here, ORs tend to be cooler than the rest of the hospital. I remember, half in the bag, going into an operation realizing how cold the room was without feeling cold myself – that out of body disconnect that comes with sedation.

In the room with me are three other people, masked up, their eyes friendly and indifferent. I know that at a certain point my memory will give out; that while I will be awake, speaking and listening and thinking, I will not have any memory because of the sedative versed. The nurse and techs know this of course, and I sense their relationship with me is in no small way informed by this. The effect of the sedation on my memory creates an unsettling lapse in time. I am on the OR platform, making small talk, trying to joke, the doc poking around a bit, double checking scans, then I am in recovery, noticing my sore belly, then listening to a nurse explain how to manage the drain, then in the car on the way home. As the nurse is showing me how to empty the drain, I scoff at my mom making a video. I’ll remember this, don’t be silly. I don’t feel altered, but I am.

During a permacath placement when I was first diagnosed, I remember wanting to explain the theory of relativity during the procedure. I remember going in wanting to, and then having no memory of saying anything at all. I was later told by the surgeon that I had in fact talked about relativity, and that the anesthesiologist titrated the sedative based on my clarity.

That was last Friday. I’ll post the rest of this drain saga later. Thanks for reading!

Recovery 2

Hello friends!

So it’s been more than a few days. J

I’ll start by saying that the kidney is working brilliantly. Better than expected – way better. As of my last post my creatinine, the measure of kidney function, was 1.2, which is within the normal range of .75 – 1.25. Since then it dipped as low as .95 and seems to be settling around 1.15. My other numbers, white blood cell count, hemoglobin, phosphorus and magnesium (with supplements) are all looking great. I have plenty of energy and the incision site has healed over – no more drainage!

Unfortunately, there is still some fluid sloshing around in there, and now that it is no longer leaking out, it is starting to collect in a somewhat sensitive and unfortunate area, what with gravity and all. I’ve been wearing a hernia belt and spending lots of time prone, but even entering week 4, standing up for more than 30 minutes or so results in some pretty sore bits. So my recovery has stalled a bit, which is why this post is so late getting to you.

While it is trying to still be laid out at four weeks, to feel ready to live a normal life but be basically bed-ridden, I really can’t complain too much. Well, before I explain how things really aren’t that bad, I am going to complain a bit. I’ve struggled with this aspect of the recovery. I am physically uncomfortable / restless most of the time. Occasionally, if I’m upright for too long, I feel a burning, searing pain, which I’ve been told is not damaging anything (always my worry), but still. It can be rough at times. Worse than that is that I’m limited to lying around all day. I’m not at dialysis, and the kidney is functioning like a dream, but still – I’m getting stir crazy, and I think I’m driving C a little crazy as well. I feel so removed from the world. I go to Abbott every few days to do labs and visit the clinic, but that’s about it. I’m not even walking much anymore. The storm last night, so powerful, so dramatic, but I felt like I was watching it on TV, through our picture window. Like I’m out of the game, not interacting or participating in the world. Part of this feeling of isolation is iterative and today I’ve worked on breaking out of it. I had hoped to have a drain placed yesterday to deal with the swelling, but because of, I don’t know, anatomy, they couldn’t do that, so I’m waiting for it to resolve on its own. I’ve been told anywhere from a few days to a few months. That was a blow, and it set me in motion. This morning I cleaned for a while, took care of a few items, and here I am posting a long over-due entry in this saga. So, on to why I can’t complain too much:

All I’ve been doing it reading, watching shows, and eating. Incredible amounts of those three things. I kind of thought I’d be done with TV for a while after 12 months of dialysis (12 months to the day!), but I had more in me, and more on Netflix thankfully. I’ve read several of these medical narrative books, Atul Gawande style. PJ and I are exploring a book on trust and hope in medicine. And I’ve been eating, pretty much non-stop, for two weeks. A lot of it is bored eating. And I’ve tried to consume phosphorus and magnesium as those levels tend to take a dive after transplant. Nuts, chocolate, chips and salsa, cherries, tahini, tuna salad, pie, cereal, and that’s on top of 3 squares. Not fat yet, but I’m working on it.

I continue to have an incredible support network of family and friends – I owe a number of you a holler-back. I had hoped to be much more social at this point in my recovery, and I still hope to be more social soon. For now, I’m practicing at waiting once again. Thanks for reading!