
The problem
This year I was diagnosed with achalasia. It's a rare condition in which nerve
damage causes weak and poorly coordinated swallowing in the esophagus,
including a reluctance of the lower esophageal sphincter, leading to the
stomach, to properly relax at the appropriate moment.
This leads to difficulty swallowing, regurgitation, and a column of liquid
sitting in the esophagus, which becomes distended, losing elasticity and tone.
The cause of the nerve damage is unknown, and has probably been accumulating
for decades. It's reasonable to assume this is mixed up in some way with
various ailments of my guts over the years (celiac, eosinophilic esophagitis,
chronic hiccups), but causal relationships are unknown.
A solution, of sorts
Peroral endoscopic myotomy (POEM) is a surgical procedure intended to allow the
esophagus to drain properly, avoiding further distension. Surgery happens
through a tube down the throat, from where they cut into the muscle wall of the
oesophagus, then tunnel down to the outside of the lower esophageal sphincter.
There, they cut some of the muscle, making the sphincter less tightly clenched,
so that food can pass more easily.
For me, my symptoms were a nuisance, but perfectly endurable. The main goal
of the procedure was preventative - reduction in future damage to my esophagus.
Plus, there's an outside chance that maybe eliminating that standing fluid
might improve other matters, such as reducing irritation which maybe causes my
hiccups? Long shot, but worth a try.
There's a lot of information given to the patient through the process, but
these are the things that were still surprises to me.
Day 0. The procedure.
I've undergone a lot of regular endoscopic inspections or biopsies. At some
point, in London's splendid Imperial College Hospital, I discovered the cheat
code is to ask to do these unsedated. It's a few minutes of slightly
nightmarish discomfort, to watch a burly gentleman hand-over-hand several feet
of black rubber garden hose directly into your mouth. But the payoffs are that
without any anesthetic, there's no need to fast, the procedure itself is
simpler and safer, and best of all, recovery time is much reduced. Given a
few minutes to compose yourself, you can cycle or drive yourself home right
afterwards, making it a 45 minute appointment, instead of writing off most of
the day.
However, going unsedated for the more substantial POEM obviously isn't an
option. It requires more than the simple sedation I've experienced before,
since apparently there's a phase at the end where they check you're regaining
consciousness and are able to breathe for yourself before they remove the
apparatus that's been breathing for you while you are paralyzed for the
procedure. This is the sort of detail that is kindly elided from the regular
patient briefing, which only came up because we were asking questions.
I only remember coming around sometime after that point, and my first thought,
unplanned, was to test whether I could perform square and cube roots in my
head. Apparently that's my brain's idea of a power-on self test. I could do
small integers, like 27 -> 3, but had the presence of mind enough to see that's
just relying on remembered sequences. I was able to envision the process to do
the calculation for something which isn't a cube, like 28, but I failed to
actually execute any iterations of it.
I said hello to a nurse sat beside me, but resisted the urge to chatter at her
about my mental state. Somehow, even I could see that from her perspective,
that would be like talking to drunk people. So now I'm doing it at you instead.
After a while they rolled me into my own room, and stuck a big pad over my
butt. Foreshadowing! I fuzzily thought. I stayed in hospital overnight, for
tests the next day. Forever grateful for Suze's visits even though I wasn't
the best of company. :-)
My hiccups didn't reappear through the first few hours of my recovery, even
though I spent the time propped upright in bed. This is pretty unusual - they
usually return within seconds of me sitting up. But when they did return, they
were pretty painful. What I call "hiccups" is partly a spasm of the esophagus
itself - precisely where I'd just been cut and then clamped and sutered back
together. So I asked the nurse to dial up the pain meds, at first with breezy
British grit, and then with increasingly wild eyes and white knuckles
as they took a while to figure out a few local administrative issues, like
where the person with the keys to the drugs locker had gone. Rode out the rest
of the day in style.
Day 1. Restart the line
I'd brought a bunch of things for my two day hospital stay, books and media and
headphones and my own cozy pajamas to wear while garrulously socializing with
staff and adjacent patients. That was all a total waste of time. I was a write
off the entire time I was there, not able to muster the bandwidth even to watch
TV. I saw a single episode of Schitt's Creek at one point because Suze kindly
propped it up in front of me, but I couldn't manage a 2nd. I just dozed, and
was wheeled to a barium x-ray, to check I wasn't leaking anywhere untoward.
At some point during this day, my digestive tract started up again. It became
apparent that it had just been on strike, inactive, since the surgery. I felt
it ripple distressingly back into action, along with some impressive gurgles.
The big pad they'd stuck on me the day before turned out not to be vital in
this instance, but I can very much understand how it often might be.
The nurse introduced me to a plastic device for measuring and exercising my
ability to inhale deeply, on which I could occasionally surpass the initial
expectation of 1,000 points.
My ambitions for the day were to get out of bed and take a 2 minute walk, and
later in the day to tolerate my first drinks, some water and fruit juices,
sufficiently to get approved to go home. Leaving hospital with some
prescription, gluten free, clear liquid pain killers proved to be an impossible
administrative nightmare. Nobody's fault, the system is broken. The concept of
"insurance" for healthcare is inherently dysfunctional.
Day 2. Home again
At home for five days of a clear liquid diet. This means water, strained fruit
juices & drinks without suspensions (i.e. no particles floating in it to make
it opaque), tea or coffee without milk, clear broths. Also, slightly bizarrely,
jello, since it may be eaten while solid, but at room (or body) temperature,
it's a liquid. I demurred on Suze's threat to make jello shots.
Ambitions for today were to rise from the sofa for a shower, and a walk or two
around the inside of the house. Scoring 1,500 points on the breathe-o-meter.
Importantly, I now have it together enough to be able to watch some dumb TV.
Day 3. Outdoors.
Ambitions today were to take a walk or two around our yard. Scoring 2,000
points on the breathe-o-meter! Yay, progress. Able to concentrate enough to
read.
Day 4.
Ambitions today were to take a couple of walks around the block. Scoring 3,500
points on the breathe-o-meter. I have no idea what my baseline was.
Day 5.
First full day and night without any pain killers. Ambitions for today were to
take it easy and not mow the lawn (check!). Might have to get someone in to do
it for us. I'd be writhing in guilt if Suze had to go out and manhandle our
temperamental mower around. 4,500 on the breathe-o-meter.
Day 6.
Back to work - from home, at a desk.
Over lunch I visit the hospital for an x-ray and more tests. I was hoping to
graduate to a soft food diet today, but surgeon says that, although he's happy
with my progress, out of an abundance of caution he's going to keep me on clear
liquids until day 9. Then a soft food diet for six weeks. C'est la vie. Back
home to more apple juice. At least I'm still under instructions to take it
easy, so retain my excuse for not mowing the lawn...