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