Last Week

A week ago, the Monday after my last post, I did indeed return to IR (Interventional Radiology) at Abbott and, having determined that the bladder was once again whole, they removed the Foley! This was great! Unfortunately, that evening at around 11 I was driving back to Abbott with a fever and “rigors,” doc-speak for the uncontrollable shaking that sometimes accompany a fever.

It was an awful night. I felt terrible, then worse. I had told C she could stay at home and I assumed the visit would be pretty straightforward and she had missed plenty of work on my account. I called her an hour later and asked her to join me. I didn’t think I was literally going to die, but part of me wasn’t so convinced – I was in pretty rough shape. I got IV vancomycin and cefapime, two broad-spectrum, heavy hitting antibiotics. This is a first response to anything that smells like a bacterial infection, like going from sick to healthy in an hour, having the elevated risk of immune-suppression, and having had drains for a month. I was also treated to a CT. It didn’t take long for me to develop a theory of how I had gotten sick, and sadly it goes back to the IR doc.

To check my bladder integrity, they put contrast into my bladder through the Foley and looked for leaks. They also put contrast into my abdomen to look for a leak, using the JP drain as access. At this point the drain hadn’t pulled anything in several days, and the small amount of fluid in the bulb was cloudy, indicating an infection. I actually called my doc on Saturday and asked about it – barring signs of an infection, all was well. Problematically, I believe there was also cloudy fluid in the tube that fed into my body – the same tube they used to push in contrast. Whatever small amount (3-5ml?) of infected fluid was pushed into my abdomen on Monday afternoon. About 8 hours later, I’m in the ED. 

It’s totally possible the infection would have been there had they pulled the drain and put in a new one, or that it was starting there already and was “stirred up” as my Infectious Disease doc suggested (more on him later). Whichever way this played out, I was laid up at least through Tuesday with this infection, and they weren’t entirely sure about the Foley situation – might need to go back in. I wasn’t clear on indications for this – at what point they would or would not pursue this formidable option. I wasn’t clear on much Tuesday morning, having not slept, and being NPO (Latin for nil per os, or ‘nothing by mouth’) in preparation for another trip to IR.

BY mid-afternoon I was once again in the company of a doc I wasn’t sure what make of. We chatted a bit, he shifted the drain around, found a small pocket of fluid to culture (and, at my suggestion, test for creatinine, one way to measure if the fluid was urine leaking from my bladder), drained it, tested the abdomen again with contrast, none of which seemed to find much purchase, and sent me on my way sans Foley. The surgical team had nixed the Foley for reasons unknown to me. I realized at this point that most of my feelings towards this IR doc was predicated on my getting, or not getting, or having removed, a Foley. I decided to give him some slack.

Finally able to eat, and transferred to the Renal unit (I had enjoyed a 8^th floor of the heart hospital as overflow, newer rooms with much better views – MUCH better). But the Renal unit was familiar, and my mom had good bread and chicken noodle soup, so I was in good shape. That was Tuesday.

Wednesday morning was a low point for me, emotionally. I remember being in bed and wanting to blot everything out, sleep, be drugged out. I still wasn’t convinced that I was free of the Foley, this spectral threat representing a downward slope in my recovery.

By 11 that morning I felt fine, good even. I hadn’t gotten any news, or taken any drugs. I dozed a bit, as I had been continuously for two days, and I woke up downright optimistic. Even for a resilient person like myself this was surprising. But there it was, and it stuck with me.

Wednesday morning there were a few main concerns with me – the most pressing was that my computer was not connecting to the internet. I was also waiting on the blood and fluid cultures to figure out what bug we were dealing with, so they could focus the antibiotics. Finally, what to do, if anything, with my possibly still leaking but probably not bladder. I’m thinking home tomorrow, Thursday. By that afternoon, we had a bug, an enterococcus grown from the fluid pulled from the drain. The next stage is to get “sensitivities” on the bug to see what antibiotics it is susceptible to – this typically takes 24-48 hours. I’m told home by Thursday if things go well. Still no news on the Foley, it seems to be the surgeons’ call, and I’m not sure what they base that on. By Wednesday night C had borrowed a laptop from work that was able to get online.

It was pretty early on Thursday when one of my docs, a resident from the medicine clinic, came by to say they had grown another bug, a staph, which meant another 48 hours of sensitivities. I would now go home on Saturday. Still waiting on the sensitivities for the enterococcus. Both of these bugs could either be treated with garden variety antibiotics – penicillin and doxycycline, or could be resistant bugs that would take more powerful drugs through an IV, which, I learned, would be administered in hospital as an out-patient.

Speaking of IVs, by Thursday I’ve been getting vanco in my wrist IV every 12 hours, and apparently IV vanco is nasty stuff. Molecularly it is one of the larger antibiotics (I think?), which (again, I think?) created more alarms in the IV pump. But mostly what I noticed was that it blew the shit out of my arm veins. I ended up replacing two IVs because they hurt so bad (and started leaking, though not infiltrating). I learned that if IV vanco infiltrates (as in, the line is out of the vein or the vein breaks or whatever, and the IV fluid gets into the surrounding tissue, they need to catch it and give a series of shots around the infiltration or it will develop A HUGE WOUND. As in liquid vanco causes skin and tissue necrosis. Like a wasp stinger, or, I don’t know, severe frostbite. Luckily, this never happened with me, though two of my three IV sites are still sore / itchy.

By Thursday evening I felt entirely like myself again. The IV antibiotics, just vanco now that we knew the bugs, were clearly working. And, with C’s help, we had Civ 5 working on her work laptop. The Foley was ruled out, seemingly for good, though I still have the JP drain. The only bummer, I was looking at a Saturday discharge.

Every morning I was visited by a stream of doctors, residents, and nurses, some of whom I didn’t know, and some of whom I worked with for years. I saw a nephrologist every day – mostly my guy Dr Hall, but occasionally a partner. I was also visited by my transplant burse, Whitney. I’ve been in pretty constant contact with Whitney these past two months, given how exceptional I’ve been. Carole, the nurse who retired last year (Whitney is my new Carole) also stopped by. This was a big deal, as Carole is retired. She was visiting someone else and swung through the hospital to, as she put it, see “if she could catch something.” Carole has been by far my favorite and most steady, essential provider for the past 15 years.  Whitney has big shoes to fill, and she is doing great so far.

Residents from the General Medicine clinic also visited me daily. They are technically my primary care providers, though most of the time I feel like I’m a step or two ahead of them in terms of what’s happening now or even what’s happening next. I would see an attending from the same clinic, the doc in charge of the residents, all of whom I really like and some of whom I know well (one is a neighbor!). Later in the week I got connected to the Infectious Disease docs I mentioned earlier. It’s a pair of guys with some support nurses and the whole out-fit is an A-Team. Super on it. ID docs are investigators; they are called in to support hard cases, and weird or intransigent bugs. They helped me with a tough C-Diff case a few years ago. They helped with sorted out the bugs and antibiotic treatments. Having them called in is both alarming and comforting, and it means my situation is both severe and in good hands.

And finally my day-to-day contact with the Renal unit nurses and nurses aids, some of whom feel like old friends. We recognize each other by site and smile. One in particular, David, was I think my nurse when I was hospitalized with the severe rejection after I got Bruce’s kidney in 2003, or some similarly horrifying stat since then. Anyway, he was my nurse when I arrived on Tuesday afternoon and I was grateful to see him.

Friday was killing time with Civ 5, the Olympics, and taking walks. I also was able to put on people clothes, as I wasn’t constantly connected to an IV pole. And then home on Saturday early afternoon. They received sensitivities and the bugs turned out to be ordinary bugs I could treat with ordinary oral antibiotics. As I was getting amoxicillin (and being allergic to penicillin) they had me hang around for a few hours to make sure my throat didn’t close off. All things looking good, I got the car from the ED parking lot where it had sat for a week and drove myself home.

If all of this was transpiring after a February transplant, it would be April and I would having barely returned to work. As it is, I missed MITY, but otherwise needed no sick time, though this has consumed my entire summer. School in-services start next week, and classes the week after. I’ve been out of touch with many of you fine people, often intentionally, but I hope to change that. I also had big plans to work on my curriculum.

Tomorrow I have a consult with the surgeons. My hope is to finally be rid of this drain. As of tomorrow I'll have had it for 39 days. It hasn’t done much for me the past few days, and while I still have a bit of swelling, I think things are finally settling down in there. This is a big step – basically the last one between me and my recovery. However now I have another thing to add to my recovery process: bed rest. I found an old NYT article on bed rest that claimed that 3 weeks bed rest is like aging 30 years (totally recoverable of course, but still). After that doozy there is a LONG list of physiological changes from even just a few days of bed rest. Gah.

So I’ll hopefully be good about diligent and mild exercise this week, along with the mental fortitude to be gentle with myself, and the resilience to handle the short lived bursts of restlessness followed by exhaustion. Hopefully it will also include SOME of the work I had planned on doing this summer to improve my curriculum, but at this point I’d take that as a bonus. Again, I’d love to see you – walks and bike rides are high on my things-to-do list. Let’s work something out! And, as always, thanks for reading!

The view from the Heart Hospital

Next time I'll take photos of the Renal unit views for comparison :)

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!