Gravis News

My brush with death came recently, Here’s how it all unfolded:

For the past couple of years, I’ve noticed my overall energy was very low, I got fatigued easily. Spent whole weekends sleeping to catch up. At one point it began to interfere with all of my activities – any load on my diaphragm suddenly was too much and I could not draw breath. I chalked it up to age and poor fitness. Wrong.

Then, about a year ago, one of my eyelids started drooping, bad. I literally had to make a ‘crutch’ for it so I could see to drive,
It passed and I again chalked it up to 0.6-century-old hardware.

Then at night, I began having trouble just breathing when I was laying down. Now I was worried but still mistook it for congestion or other.

By the end of the next week, I’d started having trouble talking occasionally as if my tongue suddenly didn’t work.
My tongue!!!! My fifth-favorite organ!! So off to the GP I went.

My GP had the training and wits to listen to all of my symptoms, correlate them and see that I’d won the 1 in 100,000 lottery for myasthenia.

The neurologist ran one test that spots the malformed antibodies that are the hallmark of the disease and I made the bell fly off the top of the scale.

Bad, bad, very bad.

I was put on Mestinon that day to increase my body’s overall volume of free ACH (acetylcholine) and got some relief – along with a case of the runs that turned our bathroom into a grotesque parody of Willy Wonka’s factory. There was a chocolate river alright, but not one you’d want to taste. Oompa Loompity Doo.

After two weeks of being afraid to fart and a laundry bill that would harelip Howard Hughes suddenly the Mestinon totally.stopped.fucking.working. AT ALL.

Overnight I was unable to talk clearly, could only take small gasps of air and I knew something was going nonlinear in a very bad way,

Luckily I’d been over-communicating to my neurologist Paul Sykes, who is a great guy and paid attention. He read my first few messages during the week and about the time I felt I’d better get the white coat cadre involved he wrote to say run there now.

I was admitted on Friday, gasping for breath, unable to swallow, and nearly unintelligible.

They gave me five rounds of immunoglobulin that essentially floods the immune system with all kinds of antibodies, fooling the immune system into stopping the production of the ACH-blocking antibodies.

That and some big doses of prednisone are helping me tons. By the third infusion (the stuff has the viscosity of Karo so you have to drip it in over four hours) I was breathing better and after each treatment, my voice would return to normal for a short time then return to mush mouth mode.

The brush with death came very early Sunday morning when I coughed up some lung-goop that stuck in my pharynx (I think) because my throat muscles weren’t working, I gagged, tried to draw breath – AND COULD NOT. Luckily I had the presence of mind to hit the nurse call button instantly, then lean over the bed and start trying to cough it out. Right in the middle of that attempt, my stomach, after three days of nothing decided it had had enough and started dry-heaving. Inside of five minutes of this choking and hacking with a Yankauer down my throat I was getting faint, the nurses were all but begging to intubate me (No!) when my heart went into atrial fibrillation. Somewhere around 250 bpm, I knew something was going to blow soon.

And thankfully at that point, I managed to hork out the nastiest looking glob of goo from my lungs and draw breath again, wheezing like an asthmatic on Everest.

A couple of hours later I was recovered and counting my blessings. My heart finally stopped freaking out after that and the echocardiogram verified I had not voided my warranty. Though I had definitely put it through some hard use. Damn near spun a bearing.

I just finished the fifth infusion today and my breathing seems to have returned to normal – better than it has been for a year!

My voice is coming back but will take a while longer. Maybe a week or more. But improving steadily.

Apparently this treatment very often puts one into long-term/permanent remission. That’s the hope.

The next step if it comes back is a thymectomy to remove the thymus, which after puberty usually shrinks away to nothing but in my case is still full-size and telling the rest of my immune system to kill me. They essentially slide in from the top, go behind the sternum and scrape what’s left of the truculent little turd out, Hopefully, that won’t be necessary. At least they don’t have to crack the sternum to do it anymore – that is a 100% non-starter.

Sometimes the issue is cancer in the thymus, but I’m spared that horror – CT showed that mine, fat, stupid, and happy is still lurking under my breastbone. It just went nuts all by itself, one more genetic lottery ticket I didn’t know I had.

I’ve been taking photos of every single staff member that’s taken care of me and it’s a veritable army. I’ll post a listing of their names with comments in a later post.

So, here I sit, in the hospital, poor as a church mouse, lucky enough to still have my job and my wife hasn’t had a coronary from the stress.

As long as I keep waking up on the right side of the dirt I’m calling it a win.

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