An MG exacerbation lands me in the hospital again

It all started during a regular intravenous immunoglobulin (IVIG) infusion, part of my routine dance with myasthenia gravis (MG). I was mid-infusion when my eyelids started doing the gravity tango and my ability to speak and swallow took a nosedive. Drooping, choking, and that unmistakable MG weakness crept in fast. My nurses kept asking, “Are you sure you’re OK?” And for about an hour, I lied to all of us, insisting I was fine.

Spoiler alert: I was not.

Thankfully, my nurses didn’t wait for me to pass out or stop breathing to take action. They gently but firmly rolled me into the emergency room. Within hours, I was transferred to the critical care unit at a hospital 1.5 hours north of our home, one that was better equipped to manage my care.

Turns out I was in the middle of a pretty nasty MG exacerbation — not quite respiratory failure, but knocking on that door. My swallowing had gotten so bad I was aspirating saliva in my sleep, waking up coughing, choking, and not able to clear it.

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Inpatient recovery

Eating was a marathon. Breakfast took me 90 minutes. Lunch was a no-go because I kept choking on orzo. Dinner? Mashed potatoes or sweet potatoes, each with lots of gravy or butter, both foods so easy to eat. Yet it still took me 45 minutes. But hey, no choking was a win!

Hospital days were a blur of respiratory therapy, physical therapy, lab draws, neurological consults, and more IVIG. It took an extra 105 grams to stabilize me and another 70 to bring me back to my wobbly version of normal. I’m convinced I smelled like medical-grade saltwater by the time all was said and done.

After steady improvements since my last major exacerbation in August 2021, which landed me in the hospital, I feel like I’m back at square one.

The cause? Hormones. Of course. My care team suspects the sudden removal of my Nexplanon (estonogestrel) implant — the little rod that had been controlling my birth control hormones — threw my body into a tailspin. Hormonal shifts and MG don’t play well together, and this time, it sparked a full-blown flare.

But by the end of the week, I was back on real food (bye-bye, thickened liquids!) and packing up to head home. That’s when the real recovery began.

The way forward

Let me tell you something: The rest and recovery phase after a hospitalization is the part no one prepares you for. The bone-deep fatigue. The 10 to 14 hours of sleep. The hours of just lying on the couch with no energy for more than a half-hour task.

My days now look like this:

• Wake up at 10 a.m. (if I’m lucky).
• Take a fist full of meds.
• Get dressed (which feels like a three-hour workout).
• Shuffle down the stairs, holding onto the wall and railing like I’m rappelling down Everest.
• Collapse on the couch to recover.
• Eat a few bites of something.
• Rest some more.

Showers are a team effort. My sweet husband helps me get in, wash up, get out, and dry off because yep, I still can’t wash my own tush without help. And while I’ve regained the ability to eat real food, it’s slow going. Sometimes, lunch is just a protein shake because chewing is too exhausting.

Right now, I’m trying to find my new baseline. What can I do without pushing too far? What wipes me out? How much is too much? I take it one day at a time, even when that feels impossible.

Recovery after an MG exacerbation isn’t just physical; it’s emotional. It’s humbling. It’s frustrating. But it’s also a reminder of how resilient we are. So here I am, surrounded by critters, fueled by coffee and kindness, learning to rest without guilt and move without rushing.

And for today? That’s enough.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.