Wednesday, December 21, 2016

(Episode 1: Rhab-dough); Episode 2: Myositis; Episode 3: Polymyositis...oops, Necrotizing Myositis

Hello all:

THB in an ecstatic mood after his right thigh biopsy
THB has this to say about modern medicine: the anesthetics part of it has really gotten good: "I'll have what she's having" good.

As seen in earlier episodes of this THB production:
- Went to Rio, a 2.5 week O's marathon with less sleep than usual
- Came back and was sleeping to extreme and no appetite to an amazing extreme, THB actually skipped meals
- Felt fine, back to normal exercise program
- Started to notice walking was slowing down, certain calisthenics (e.g., step-up on chair, push ups) difficult, "weak" thighs appear
- Went to primary doc, Doc M, who said it could be polymyalgia or fibromyalgia
- Lab work showed high levels of CPK, THB is shedding large protein molecules
- Could be Rhabdo; spend 4 days, 3 nights in hospital on saline IV drip, drip, drip; stop taking statin immediately
- CPK levels remain high, THB leaves hospital with instructions to drink, drink and drink some more

December: Water damage at loft, from an unknown source

Episode 2: THB is now under the care of a rheumatologist, where the list of possibilities has grown and the process of elimination continues. The January trip to Chile and Argentina is postponed.

Most likely disease of choice is now:

Myositis (My-Oh-Sight-Us...or is it OH-MY-IS-IT-MY-SIGHT?). a rare disease (would THB have it any other way), that affects 5 to 10 out of every million adults (though kids can get it too) in US annually. 

All forms of myositis involve inflammation of the muscles and the main symptom is muscle weakness (sort of obvious). Causes include: inflammation, infection, drugs (e.g., statins), and injury. And, to keep you thoroughly confused, rhabdomyolysis is not to be confused with myositis.

THB's weak left thigh

Back to what is being done for/to THB:

- More blood work; CPK levels still high, THB still drinking lots of Arnie Pees
- A right-thigh biopsy, in a separate surgery center within John Muir hospital (under propofol, the Michael Jackson really leaves you feeling great!)
THB's weak right thigh, after biopsy and before outer bandage comes off

Time out for the humorous part of new medicine: an I-cuff THB is having his blood pressure taken (for like the 15th time in the last 3 weeks) in the biopsy surgeon's office with a fancy new device.  It looks like a huge wrist watch face on a massive velcro strap that slides over your hand on to your wrist. We wait for the readout, and wait for the readout, and out comes the first number: 230. WHOA!! THB is usually at something like 130 over 70. Back to the old wrap-around bicep strap that is hooked up to a portable readout machine.

Other new stuff: 

THB has something tested (temp? blood pressure? pulse rate?) with a smart phone appendage that got stuck in his ear (the appendage, not the entire phone) for a few seconds; normal reading this time
THB had his temp taken in the surgery center by something that looked like a narrow hand-held vacuum that was swiped over his forehead. THB has had his temp taken many times over the last three weeks and THB is here to tell you (along with a Freakonomics podcast on bad medicine): temperature may as well be taken by putting the back of your hand on the person's forehead. The readouts roam all over the place and what docs really want to know: are you running a high fever or dead.

Another pic of the water damage

THB's biopsy site as seen under dissipating tape 
Episode 3: Dr Rheummy hasn't totally ruled out statins as the primary cause, and is now focused on Polymyositis (Polly-my-oh-sight-us).

Here's a link on a recently posted synopsis: Polymyositis

It mostly affects older men (THB is now officially an old man), is idiopathic (meaning, docs can't figure out what is causing the disease), and:

    • Symmetrical, proximal muscle weakness
    • Elevated skeletal muscle enzyme levels
    • Characteristic electromyography (EMG) and muscle biopsy findings 
    THB's go to drink: home-made Arnold P in the 50th ballpark mug

THB skipped the EMG, otherwise, this sounds like what he's got.

Good news: THB can start drinking less (and cut down on those Arnie Ps). The Chile/Argentina trip can be rescheduled starting early February (it looks like we're leaving Feb 20)

There's another site with slight different info which implies one white guy in 1-3 million adults per year gets this disease.

THB starts on prednisone, 60 mg a day. It comes in 20 mg tablets so scaling back can happen relatively easily. And to counter the effects of the drug, THB starts on a Vitamin D/Calcium supplement.

The bandage has come loose, here's what the thigh looks like 1 week after biopsy
A brief commercial from our sponsors: THB and DB are in LA for a quick weekend, here are a few shots from the Descanso Gardens light show:

THB can't get the glowworms to glow for the camera
How cold was it? these are shots from E-ville the day before the last visit to doc

Somebody painted all the oil cars white

And came back later that morning and unpainted them
Episode 3, The Results: Finally, the results of the biopsy came in, sort of, as the rheumy doc does not have the official report, it was phoned over...Necrotizing Myositis

Synopsis: Necrotizing autoimmune myopathy (NAM) is a rare form of idiopathic inflammatory myopathy characterized clinically by acute or subacute proximal muscle weakness. The prevalence and annual incidence of NAM are not known but the disorder is very rare.  

Very likely statin-induced, no other symptoms than thigh weakness, everything else looks fine (eg, kidneys, liver, blog posts).  Not a Rio virus (could it have been a trigger?)

THB's thigh is healing nicely, this is two weeks after the surgery

Treatment: continue the prednisone and calcium/vitamin D supplement, start on Fasomax for aid in preventing bone deterioration. 

Prognosis: THB is on the mend, prednisone is working, CPKs are under control (more blood test required to confirm), and the rheumatologist and cardiologist will work on what can be done to replace the statin. 

THB still has to take one more blood test, looking for antibodies, which is so rarely done now you have to go to LA to have it done...WAIT!!! HOLD ON!!! THB was just in LA. Guess THB should have told the rheumy doc of his travel plans, cuz we could've stayed over a day to get the blood drawn. More likely now is that somehow the rheumy doc will do the test in her office. TBD for THB

And, here's the Loft water damage update: Have to evacuate for 5 days while they pull out the sheetrock (FIVE DAYS????), then another 7 days to put it all back together.

Monday, December 19, 2016


THB and DB go to LA for a short two-day visit. 

Saturday, Dec 17

It's never too early for a brewski at OAK airport
The 6th Enterprise shuttle comes by before Avis agrees to pick us up

It's 38 degrees when we leave E-ville, there's frost on the cars at the Oakland Airport. 

Under very clear and moderately cool skies, we do the usual, Langers for lunch and art galleries: 

THB will have whatever the bear is having

Pastrami on rye, $15. Total for lunch, $60 including a loaf of rye to go

Early work (60s)

Later work, mid-90s

Giant map of US not in red and blue, by Nate Lowman



Composed of drop clothes collected over 10 years

We're staying at The Line, and they've upgraded us to a "suite" which means you get one more concrete room. The views are terrific today. And, it takes a bit to heat up the place.
It's gorgeous in LA today, a day after the storms blew through

 Drinks are comped while we wait for our upgraded room

We've got an extra sittiing area and 2nd bathroom

Our view

And the unusual, when we meet up with FB&BB just after dark for a tour of the seasonal lights at Descanso Gardens in Pasadena on BB's b'day. 

What a show! And it is cold, probably mid-40s , where see various light shows separated into different stations using a wild variety of lighting "tricks." Especially notable is the station where the glow worms were climbing all over the shrubs and trees. Not sure how they did it, it was very very impressive.

After the light show, we dine at Maple, the on-site dining room, with comfort food (spinach salad, chicken pot pie and bread pudding for THB; butternut squash soup, chicken and pumpkin pie for DB) and much congenial discussion. Oh, and it's warm! With three huge glasses of wine (one of the white's for DB was really a double pour), $160.

THB will have what Santa's having

A gigantic chicken pot pie, too rich for THB to finish

Sunday, December 18, JOB's b'day (she would be 89), we're at the symphony in mom's seats

First, a visit to one of THB's fave LA bakeries, Huckleberry's: $30 with two decaf au laits, 3 pastries, and a half loaf of bread

Doesn't include the half a loaf of the country bread

Then on to our second visit to the Broad Museum. If you want to know what the faces look like in the US city of the future, come to the Broad and check it out (i.e., being old and white puts THB in a small minority of the museum attendees). Why so different: it's free and very accessible tickets using your smart phone, and the word is out that modern and contemporary art are in. 

Looks like Lassnig found her inspiration

If they are showing one of her videos, give it a long look, they're terrific

Shirin Neshat from the video playing at Broad

Lunch is just across the plaza from the Broad at Otium, an upscale casual dining spot. $85 for 3 courses, including ice teas. We share:

Crispy potatoes-Lemon salt + Aleppo pepper creme fraiche

French toast cubes, pork belly, whipped topping, fruit compote "syrup" (dip), served in a smoky charbroiler so the cubes taste like marshmallows

Khachapuri + cheese + egg + prosciutto + truffle + Aleppo (small cheesy pizza topped with cooked egg and proscuitto)

Across the street to the Disney and Adams at 70: El Nino. Very discordant, hard to penetrate music. Well, since we have a late flight out of Burbank, we make it past intermission.
This is the typical LA Phil attendee: old, white, white hair...and this is John Adams

Uh Oh! We're very early for our 7:20 flight which is delayed by at least a half hour. We decide to go through security and look for dining options (hah!). The good news: the 5:20 flight is also delayed and the very nice gate agents put us on that flight for no extra fee, which leaves at 6. Since it's not full, DB gets an empty seat next to her. 

Great, we're home before our original flight takes off!

Trip Summary: 36 hours; LA gorgeous; half hour wait for the car shuttle; upgrade comp'd at The Line; great light show in the cold, cold, cold night; good art around town; lousy concert with the composer on hand; comp'd for the earlier flight home. And THB manages to get around without too much difficulty, walking slowly.

Shots from around LA:

Avis' finest, $120 for two days

The "body suit" is more  revealing in person