THB reports out on the appointment with the doctor

THB Necrotizing Myositis visit to Johns Hopkins Medical Center 

Friday, August 13 

Department of Transportation in a Covid World:

• THB and DB turn in the rental car and walk back to Pendry, about a mile in 99 degree heat. Get back before the thunder and lightning downpour begins
• Uber to airport on morning of 14th, driver has not been vaccinated. THB and DB agree: UBER needs to mandate vaccinations for all their driver or make it a selection option when ordering a car.

THB needs an ID bracelet for MRI of his thighs

THB doesn't need to worry about his cholesterol

THB and DB have beef and pork sandwiches at Chap's, less than a mile from Johns Hopkins

Building where THB gets EMG tests and meets Doc Mammen

THB has his vitals taken: it is the first time the outside temp (98+) is higher than his internal temp (97.8)

Recap: Necrotizing Myositis evaluation at Johns Hopkins, August 13, 2021, with Dr Mammen (DB attending)

MRI of THB’s thighs: the cross section showed no permanent damage and very slight active damage.

EMG tests:

·       Connecting electrodes to different spots on right leg and foot and passing small charges through the electrodes and then asking THB to flex his toes back and forth. THB passed with five-flying-big-toe rating

·       A form of acupuncture with needles connected to a machine that made strange growling noises while the doc tested THB’s strength (e.g., squeeze the doc’s fingers, lift your leg while doc applies pressure, etc.). THB passed this test with sharp-as-a-tack rating

 Meeting with Doc M: this is the guy! Great manner, concise when he could be, and clearly a broad knowledge of Necrotizing Myositis with 150 patients in Baltimore and 20 in D.C. THB is the strongest person he’s seen with this illness. He uses a device that measures strength and THB rings the bell at top of the hammer strike.  Going forward this will be the method used to test THB’s strength because it is quantitative instead of qualitative.

Summary:

1.    THB is in great shape, considering the disease; strongest (measured quantitatively) patient Dr Mammen has seen and  CK (also referred to as CPK) count is stable and much lower than the average person with this disease. In addition, because the onset was after THB was over 60 and has been controlled it for so long, it is not expect to get worse. The disease does not attack the heart muscle.

2.    If the disease does progress, it will manifest in the thighs (hip flexers) when climbing stairs or getting up from chairs, possibly in the deltoids. THB can exercise at whatever level his body/age lets him, not worrying about it affecting his disease.

3.    Doc Mammen has now become the primary doc for Necrotizing Myositis. This requires going to DC or Baltimore every 6 months, which is not a problem (now). 

4.    Rituxan (more properly known as Rituxamab), is the correct drug treatment at this point (THB got infusions in April and May). The remaining option, IV-IG, may be more effective, but it is bad for people with heart disease since it thickens the blood.  I will stay on the Rituxamab infusions as long as I am stable.

5.    Overall, the doc is more interested in THB’s muscle strength (which is the key indicator on how I am doing) than with the lab test results (CK count). 

6.    COVID: While the disease is NOT making THB immuno-compromised, the medication makes me immuno-suppressed.  I will be taking a blood test next week to see if I still have a protective level of the antibodies from the vaccine. Dependent on the level of antibodies, THB will get another vaccine asap.  In addition, THB should be COVID careful, since it is more likely to be sicker when catching COVID (THB wore double masks flying back to E-Ville).

7.    Heart disease: Dr Mammen recommends I go on Repatha rather than staying on the old statin alternatives. He has 15 patients on Repatha with no adverse effect. 

Stuck in traffic, this is an impressive temple

Dinner in room at Pendry: Burrata and sautéed veggies; roasted carrots with raisins and yogurt, focaccia 

THB double-masks in SFO cab

Friday, August 13 

Uber to airport, Delta flights on time, back to loft in tmie to do wash, dine on pizza outdoors, and get the trip posts out into the ether

Book Review: The Story of the Lost Child, Book 4 of the Neapolitan Novels, another winner. More complexity between the two friends, with their children in the mix now. Can there be this much death, intrigue, crime, sex, nepotism and overlapping family matters in a suburb anywhere else in the world? Or, put another way, is this a real version of Italy dressed up in a fictional form?

Self-portrait

THB has an appointment with a doctor

 

THB and KBM with the Tokyo 2020 Olympic torch

Wednesday, August 11

Department of Transportation in a Covid World:

• Uber late to pick up DB and THB, $10 credit
• THB attempts to add Delta frequent flyer numbers at gate: this takes 10 minutes for two agents, who spend more time discussing a broken printer than how to input the numbers
• Flight to Atlanta left and arrived on time. Box breakfast in First Class, ran out of one of three choices
• Can't get into Sky Club flying First Class
• Have to use AMEX card to enter Sky Club, one for a couple doesn't get both in; $38/pp for guests. THB waits outside while DB uses Wifi
• Weather in Baltimore, storm passing through, delays flight for over 2 hours. Plane deboards, one woman is 15+ minutes late boarding after the plane is ready to shut the doors. 
• Land in Baltimore and the shuttle to car rental facility takes 20 minutes. Hertz line has 9 in front of us, one checkout person. THB goes to several other spots, no cars available. All the people from the out-of-car places are in Hertz line. Enterprise has cars, THB gets a standard car for $200 more than Hertz for the 4 days. 
• Enterprise brings your car right to the car rental facility door. Drive to exit; two lines, neither moving. Line THB and DB is in closes. Two lines merge, and after 10+ minites a new checkout booth opens and the closed booth re-opens. 
• Fifteen minutes later we are our way to Pendry, a boutique hgtel in downtown Baltimore on the inner harbor. Drive pass Camden Yards, Orioles losing yet another ballgame, this time before 9K fans.
• It's dark, night time. THB is not sure where he is, a new road to him. Three times, while going at speed limit of 60 with little or no traffic, he comes up on cars going 40 mph. Very dangerous. Could be worse, having the CA drag racers going by at 80+ mph (that turns out to be case the next evening, while still light out)

May be open,  it sure is slow

It's after 10pm, no food service is open in hotel.  THB and DB have snacks and open the complementary bottle of Chappellet Mountain Cuvee.

Thursday, August 12

Breakfast service is en suite. Yogurt and fruit and granola (huge) and lemon poppy seed for THB, eggs and bacon and potatoes for DB (huge) and carafe of decaf with warm milk on side.

Typical breakfast, that is one huge bowl of yogurt, granola and fruit

Sagamore Pendry Hotel, brick building was there, rooms were built on the abandoned pier

Inside courtyard

Never visited

How hot was it? Too hot to swim in the sun

Department of Transportation in a Covid World (cont'd): THB changes the Enterprise reservation to drop off the car at an inner harbor location on Friday and avoid another airport mash-up; drop off other than airport costs $50 and shorting a day saves $100. The new plan is to Uber to airport on Saturday using up the rest of the savings.

Department of Art:

• Baltimore of Art: Partially closed to get ready for the next exhibit and severely limiting visitors, DB and THB pretty much have the place to ourselves. The modern art collection on display is excellent, with well thought out attributions explaining how the museum collection came to being through huge donations by three women in the 1940s and 50s. 
• The American Museum of Visionary Art: for self-taught and intuitive artists, THB and DB actually own a piece by a pair of trash-collectors (just our ages) who scour the N. California coast for beach trash and then create art pieces out of the trash (our work is a photograph of a compilation of plastic toy soldiers). The couple we are seeing later today are holding a wedding for one of their daughters at this museum next year.

Pics from the Baltimore Museum of Art

Curator at BMA during time of large collection acquisitions; clearly her last name is pronounced: Brisk...inn

Stuart Davis painting titled Bull Durham

Magritte bronze

Juan Miro

A Giacometti that inspired Margaret Ford (we have 3 of her pieces)

Part of special exhibit, DB and THB liked Self's work a lot

Nudes in three stages, two women chatting away, one security guard listening?

Another Self

A huge wall painting next to a life size living room 

In-room dining for lunch: fish tacos, guacamole and chips, watermelon salad and two Arnie Palmers.

Lunch

DB and THB visit a couple we met on the Uncruise in Alaska

They have been involved with Habitat for years

We get a tour of the latest construction, different than the style done in the East Bay

They live very near Chesapeake Bay

Twins enjoying water feature at San Ramon Civic Center (note the masks)

Twins, one locked in crate with camera, one looking in

THB didn't need to go to Alaska to see wildlife: here is a raccoon in a tree right outside the Loft 

The twins hand the camera back to THB and pose in front of the dog's, er, the twins', crate