On May 1 I had my first ambulance ride. I certainly believe in making it a *real* May Day. Fortunately, the fine crew of Fairfax County EMS did a wonderful job in keeping a terrifying situation calm and getting me to the hard working folks at INOVA Mount Vernon ER before I slipped all the way into the great beyond. I was in myasthenic crisis.
A Somewhat Rare Disease
I have Myasthenia Gravis, and it was catching up with me quickly. You see, I was lucky to respond to relatively minimal treatment for years, since being diagnosed in 2009. Well, minimal if you count having your thymus removed as “just a thing,” and obeying the P’s and Q’s of living with the disease.
I somehow find it amusing that needing to go to the bathroom might’ve saved my life. It was the reason I woke up. I was dismayed to find that I could just barely talk, couldn’t move, but very thankfully, had just enough strength to tap my sleeping husband on the back and mumble “Houston, we have a problem.”
Help on the Way
The EMT arrived very quickly, oxygen and resuscitation equipment in tow, necessary devices for treatment of myasthenic crisis. The team navigated the course of loading me onto a stretcher and then down three flights of steps (sorry guys!) into the ambulance. I was asked how I deal with living like this, up so high. It had never been quite that bad before! Otherwise I’m a pretty determined (and possibly stubborn) cookie and hadn’t let difficulty with steps at varying degrees stop me. I was ushered out to the light of dawn and sped to the hospital.
My fretting husband followed along in his car, and we left our terrified pup at home. She’s unfortunately very accustomed to me being sick, but not to a hoard of dark-clad figures coming by when we should all be sleeping. As a matter of fact, she took the whole thing very personally and didn’t want anything to do with me for days after I got back home. I promised her I’d avoid further myasthenic crisis as best as I can. She has since forgiven the traumatic event.
During MG crisis, patients can (and possibly often?) remain lucid. I heard everything that went on. Whether the eyes cooperate and provide decent vision depends on the incident and the person. I might’ve seen a total blur, or double vision to varying extents. My eyelids might’ve refused to open at all. This time I could keep my eyes open for decent periods of time and keep up with everything. I cannot imagine how much more terrifying I would’ve been with no vision.
A Crucial Question
I figured the best thing was to stay calm, because nothing will lead down the wrong course as quickly as being written off as a panic attack. MG symptoms also worsen with stress. I took this golden opportunity to ask my caregiver whether the fire department does drills at a certain time on Summer nights. Even though I doubted it, my husband and I noticed recurring sirens at 9 pm each night for a while. I like to take advantage of the opportunities that present themselves, and have a long tradition of asking the question never asked before. This earned a recorded comment during stat notation that I was “very amusing.” If I’m gonna go, I might as well keep my sense of humor. Sometimes it’s the only thing you have to hold on to.
At the ER my neurological strength was barely 2/5. That means you can only twitch a little. My breathing was very weak. My heartbeat was slow. I felt like I was sinking – as if I would disappear into my gurney. Not quite as dramatically as the scene below, and definitately not involving Freddie Kruger, but still.
I still had to pee! When it came time to take my MG medicine from home, we said “it helps with nerve / muscle communication.” My nurse didn’t miss a beat, exclaiming “THAT sounds like a very good thing!”
How I became a Gourmet Vampire
The ER was put in touch with my neurologist and I was started on a drip of IVIG – an infusion of concentrated human antibodies. I had started IVIG a month before, making me a sort of gourmet vampire. I only take choice parts of the blood.
In the course of my visit, I stated I’m on good terms with the greater power (I am spiritual, but admittedly not the biggest fan of organized religion), and found someone reciting Greg Allman lyrics can be a great comfort. I was aware of someone coding in another bay, and thanked my blessings to still be alive. At some point during the morning I was transferred to my doctor’s hospital to continue the treatment, and was admitted for 5 days – one more day of treatment and then time for improvement.
That was the most terribly spectacular day of my history with MG. The other most spectacular day was in late July, when I took my first purely recreational walk in an air conditioned mall. MG and heat do not mix. On the vernal equinox (that’s September 22) I took my first recreational walk outdoors in cool mountain breeze.
There were other scares too and so much to learn about the condition. Even getting diagnosed was a long, awful process with many misunderstandings. Most people have never heard of the disease and many doctors are very hesitant to deal with you for other maladies once they see your diagnosis. It’s complicated.
Follow along and subscribe. Don’t let news of posts get buried in social media. As health allows, I will write more about my experience and try to raise a little awareness for fellow sufferers and their loved ones. If this resonates with you, I welcome comments.