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Wed Dec  1 09:13:24 PM EST 2021
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With the morning preparations and the evening rush hour and
at least one meal out for enduring the trial, the trek to
Johns Hopkins University Hospital in Downtown Baltimore is a
daylong event. While we're accustomed to the yearly visit to
the neurology department, today was a little different.
Today was cardiology.

Cardiology -- just like neurology, pulmonary, and others --
seems mostly about metrics. Duchenne Muscular Dystrophy is
fatal -- period. Full-stop. Metrics are about knowing where
you are on the curve, adjusting medications, and
contributing to the larger research datasets. The process of
going through these appointments is a challenge to the
psyche: At best, you're not worse off than before and the
ever-escalating costs of health insurance cover at least the
bulk of all the specialists and tests; at worst, you learn
about your decline and how things will inevitably change.

Electrocardiogram, echocardiogram, and the consult, were on
the agenda for today. The reason? Routine. My son's on two
cardiac medications, and at some point it becomes negligent
to keep renewing them without the checkins. We had to cancel
our appointment two years ago when a snowstorm hit the area,
and last year we were not taking any chances with COVID --
and, yes, scheduling appointments with these specialists,
such as cardiologists who specialize in working with
neuromuscular diseases, can be very challenging.

What was the outcome? We're tracking deteriorating function,
cardiac scar tissue, and watching for signs of arrhythmia.
Based on today's results, the boy's wearing a small monitor
glued to his left breast for a week. It's watching in detail
for any signs of arrhythmia, to be mailed to the lab for
analysis when done. Depending on the results of that, there
may be a subcutaneous sensor inserted to do the same over
the course of years -- and that it turn may be a precursor
to an installed sensor-slash-defibrillator. We need to get
him an MRI to give a better baseline look of the heart
function compared to what the limited echo can do, a visit
with the specialist pulmonologist who deals with muscular
dystrophy patients, and probably a sleep study in a lab.

Yeah... Again, these are never "Wow! Look how you're
progressing on your wellness journey!"-type events, and they
are not cheap. If anything, one visit and one or two tests
inevitably cascade into a flourish of new requirements, and
each of them is a reminder of the inevitable, as well as a
quiet, unspoken reminder of the costs in this country of
keeping someone alive.

Happy December.