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 8th 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!
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The view from the Heart Hospital |
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Next time I'll take photos of the Renal unit views for comparison :) |