Just when you think you are safe...

It's been almost 3 years since hubby has had a crisis. He took his meds, avoided infections, and improved steadily. Then one day last week MG came out of the bushes!

It started with a weird cough/scrape, which we now know it was his lungs trying to work with a very weak diaphragm. His oxygen pitched (70s.) He couldn't walk, then couldn't stand. Then he couldn't sit up.

We were at an end-of-summer cottage stay. We've experienced this really rural hospital ER before. There is not a neurologist for 100 miles, and the ER staff (from a different network) won't call his very good primary.

"Crisis" is essentially paralysis of the diaphragm. It mimics a lot of things that are far more common when a patient is in the ambulance and the ER, so in some circumstances, the absolute wrong treatment is prescribed. (Even worse if COVID restrictions keeps the caregiver out!). That's one of the factors we considered.

Four years ago, they asked me to look up what to do on my phone! These are good people, but they might never have seen MG. The risk of them doing exactly the wrong thing, or of him getting COVID, was just too great.

He didn't have a temperature. So I pulled out his lung treatment machine and "played doctor." I called our primary in the city, and messaged his neurologist. I got an emergency script for more albuterol and an appropriate antibiotic within 8 hours. (I am NOT recommending that to anyone.)

With the drop in oxygen, hubby became less rational and more stubborn. That made me really reconsider the decision not to call 911. But the oxygen gradually came up, and he still had no temperature. The crisis gradually subsided with the lung treatment. So we persisted.

Hubby's in a unique position because his MG came years after throat cancer and he has some aspiration and swallowing problems from the treatments he had as well as the MG. What we THINK precipitated the crisis was aspiration--lying down too soon after he ate. But from past experience, we admit it could have been an ear or sinus infection too.

Six days later, he's coming back. He is exhausted from the days with low oxygen, but no pneumonia. He'll be even more cautious about aspiration moving forward. But it's hard not to be terrified of what we don't know. MG is a sneaky threat.