Day 1: Aug 2
On United from SFO to IAD (Dulles), non-stop. Maybe 70+% are
wearing masks. Plane is on time. The service is excellent. UA had us pre-order lunch and the meal we are served is a substitute: veggie enchiladas. The flight
attendant agrees, we got the best meal on the plane.
Uber from airport, our driver is originally from Afghanistan,
trained as a geologist while living in Germany, moved to US about 20 years
ago, not long enough to have earned much
of a retirement payout. Speaks 7 languages. THB tests him on his Espanol. He
replies with one of the few phrases THB actually knows: un poquito.
Sandy wants to know if she can go on this trip, plenty of room in THB's suitcase.
Check-in to the Bethesda Hyatt Regency, go up to room and
there is no bathtub (as requested at reservation). Call down to desk, yep, they
have a room. Person who checked us in comes up and we move rooms. King size
with tub, simple and what we want. Hotel seems empty.
Dinner at Morton’s Steak House. We decide to go light:
scallops and crab cake appetizers, burrata and wedge salads, two glasses of
wine, $135. Even though restaurant is less than half full, THB had to turn off
his hearing aids. Service well below Covid mediocre.
Day 2
Up early. Too early because the clock in the room had been
set to 6am wake-up and we didn’t catch it. Up and out for pastries and coffees
just a block away at Tatte. Pastries look great; looks are deceiving, all three
we ordered are dry like they had been left out for a day or two in the heat
wave in Black Butte. Decaf americanos, a baguette to go (NIH may not give us a
lunch break), eat outside in the75+ degree weather, $35.
A NIH shuttle picks us up at Hyatt and drops us off right at
the main hospital entrance, easy-peasy.
Then go through TSA-level security to get our badges, then register at
admission in the hospital, and finally meet up with our contact, Julie, for the
Doc Mammen NIH study. THB had already joined Doc’s Johns Hopkins study
last year (also in extreme heat) in Baltimore.
Julie had tried to reach us yesterday while we were in the
air to IAD. OOOOPS, Doc Mammen has Covid! Second doc I heard about this week
postponing for this reason. Too late, we are in Bethesda now, baby.
THB gives blood, lots of blood, setting a PR (Personal Record
for you T&F fans), has a Pulmonary Function Test (PFT: breathe deep, real
deep…now hold it), and a thigh MRI (THB actually takes a nap, without hearing
aids and with earplugs and headphones, THB hardly hears a thing).
Late lunch of Tatte baguette (way better than the pastries),
Mt. Tam cheese and salami from E-ville, and share a water with DB.
NIH shuttle back to Hyatt and a rest up before dinner with BT&MT,
friends from a chance meet-up in Puerto Natales, Chile, staying at La Remota
(just outside of town). We hiked together with SB and AB for two days
(pre-travelsofthb) and have stayed in contact ever since. They were in great
shape then and now. A lovely dinner, with much of the veggies and fruit coming
from their spectacular backyard garden (including a beehive!).
Day 3
THB goes down to the in-hotel Starbucks and waits 20 minutes
for two small lukewarm decaf americano au laits, $6.50. We stroll slowly over
to Silver to dine outside. It’s too hot and humid, nothing on the menu appeals
to THB (THB is very sloggy this morning) and we go to Bagels in Bethesda, get
bagels, lox schmear, lox, and a fruit cup, and sit in an upscale alley of
stores and restaurants.
Back to Hyatt to cool down, pack, and catch the shuttle to the NIH. After several tries, someone on 9th floor takes us down to 5th and we are installed in what seems to be an outpatient operating room.
No docs. They are running late. And Doc Mammen is at home with
Covid. When the docs arrive, one is cohort of Doc Mammen, the other a research
fellow. Various physical tests, one that supposedly THB gets up on one leg and
balances; THB collapses instead. Hmmmmm…next day THB still has sore hamstrings.
Review the tests of yesterday: CK count is low for THB, still
out of normal range for everyone else. Pulmonary Function test was normal.
MRI of thighs looks very good, only
small change since last year. Strength tests were only 2 pounds lower in upper extremities from last year's tests.
In summary:
·
THB
feels fine, to THB this is just another chronic illness. The docs continue to
say THB is one of the strongest Necrotizing Myositis patients they have
examined. All good! Doc Dixit, local rheumatologist, is providing excellent care.
·
The
illness is treatable, not curable.
·
Since
it started later in life for THB (then at age 68), not likely to become severe
·
Covid
complicated THB’s treatment and, now that there is a “vaccine” for auto-immune
types, THB will get Evulsheld shots every six months, plus Covid boosters and
any new Covid treatments designed for the masses
·
Necrotizing
Myositis treatment will consist of infusion of Rituximab every six months and
methotrexate weekly (no, THB is not having a medication abortion) unless CK count goes back to normal. Keep measuring strength monthly. Don't eat oyster mushrooms, red yeast rice, or drink pu-erh fermented tea as these natural products reduce cholesterol. Wait, isn't that why THB was taking statins? Yes, and these foods are in effect natural statins.
·
THB
will be going to NIH/DCevery year for follow-up (in spring or fall, no more in
summer!). Next visit will include a localized biopsy. THB did not have one this
time since we were flying home later today and they were worried in case the
long flight caused complications. For some reason, the study includes only two
biopsies per patient per lifetime. Not clear if THB will have to also visit
Johns Hopkins again as most all data is shared between two studies.
Do a Facetime visit with Doc Mammen and he supports the
findings of the in-the-hospital docs.
Eat a to-go late lunch in the hospital atrium, and take the free
3:40 shuttle to Dulles Airport. Very nice service! Only 4 of us on a large bus,
safer than an Uber!
We are early enough to fly standby on the 5:55 flight. Even
though we forfeit our business class tickets, it saved us spending an overnight
in the airport as the 8:30 flight was delayed at least 4 hours. Sit in middle
seat one row behind DB, only lowering mask to eat a few biscuits and an apple
when seatmates had their masks up. Home by 9:30.
Book Review
Flying Blind, The 737 Max Tragedy and the Fall of Boeing, Peter Robison: more than half on the
history of Boeing, and the big thing for the company was the shift from an engineering-centric
company to a financially-let behemoth. Doesn’t end well either for the two
planes and passengers that crashed shortly after take-off due to a mis-designed
MCAS and the company that thought skimping on design specs, testing, the
benefits of the FAA overseeing new implements and pilot training would work out
well for their profit margins. Also, the finance leaders were Jack Welch disciples.
It worked out for them if you just measure by income. Neutral (and maybe not meant to be read when flying in a 737)
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