My Biggest Fear Came True, but I Survived It
There’s always this weird period between getting tested for a medical condition and actually getting diagnosed with it. A person may be almost certain of their illness, but they can’t start treatment until it’s been confirmed. It’s like waiting to cross the most important street in your life; the path forward is right there, but there’s no getting to the other side.
Like most people, I spent that in-between time being totally calm and chill. Just kidding! I read every horror story and bit of bad news I could find about myasthenia gravis (MG). While there were many articles by and about people leading good lives with MG, in my fearful state, I chose to focus on the bad ones. And the thing that scared me the most was complete respiratory failure, also known as a myasthenic crisis for those with MG.
Talk of hospitals, breathing issues, and feeding tubes alarmed me, but once I received my diagnosis and started my treatment plan, I believed I could avoid any major hiccups in my journey.
A myasthenic crisis became my reality
Unfortunately, I was wrong. Within months of my diagnosis, I found myself in an intensive care unit (ICU) in a myasthenic crisis, unable to eat or breathe on my own. My biggest fear had become my reality.
The breathing tube freaked me out the most. It wasn’t painful, except when the nurse moved the tube from one side of my mouth to the other, pinching my lip. And I had been put under before I was intubated, so inserting it wasn’t what got to me, either.
There wasn’t much to do in the ICU except focus on my ventilator. I worried about it being shut off, and discovering I wasn’t strong enough to breathe on my own. As I lay in the hospital bed staring at the ceiling, the only thing I could imagine was my ventilator and me living together forever.
However, the first time the doctors tested my breathing strength, they briefly turned the ventilator off. I was frightened but determined, and I soon experienced the greatest thing I had ever felt: I was able to breathe on my own. However, it was several more days before I was well enough to be taken off the ventilator and have the tube removed from my throat.
The mental challenges of dealing with a ventilator and breathing tube were worse for me than the physical ones. Even now, years later, I still get scared. Every skipped or shallow breath brings back that fear. But then I remember how the one thing I was most scared of happened. And I survived.
I know the fear might always be there, but knowing I survived helps me conquer it.
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.