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 :)