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.
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Comments
Deborah Dortzbach
Thank you for sharing your vulnerability, Michelle. We all have vulnerabilities and so your sharing yours, helps us tremendously. Myasthenia is a daily occurrence for us--every morning we wake up to face challenges we overcome. Your insights and those of others on this forum encourage and help. I am grateful.
Cathy F.
Thank you for your positive outlook after living your worst fear. My husband was hospitalized for diagnosis after being unable to swallow, even water. It was mg. We had never heard of this decease. On the third day on the medical floor he couldn't even hold his head up. He went into a mg crises, brought to the Medical ICU unit and was intubated for 7 days. Grateful he was in the hospital and his life was saved.
Debbie Vertrees
Thank you for sharing! I was in ICU on a ventilator all Spring & Summer. It is so scary, but like you I survived. I’m still very cautious & wear my mask everywhere. I ended up with myasthenia gravis from taking the covid vaccine, it was hard to believe it all happened. Your article was very inspiring.
Barbra Zuanich-Friedman
Sorry to say that you didi not get mg from theCovid vaccination. This is really spreading misinformation of the worst kind and it could cause many people to hesitate getting the needed shot. Please follow science and be very careful about drawing false and dangerous conclusions.
Michael Chiesa
I had similar issues, admitted due to general weakness and then had shortness of breath and transferred to ED. They insisted on making me lay down rather than sit up which created more difficulty. My next recollection was waking up up on a vent and feeding tube. Neither a very pleasant experience. Besides being uncomfortable it was painful every time they repositioned it. The worse part of feeding tube is when they were using it the sensation of the mix felt like it was coming back up and there was a unpleasant taste. It was better when I had them slow it down. The other annoying issue was calling for a nurse, I would push the button and be greeted with “Helllo! What do you need” They would eventually send somebody. I was communicating through my iPad and asked the nurse to have receptionist come to my room. I suggested with all there technology a post-it note by my light letting them know I would not be answering them other then beating the remote against the bed might be helpful. They thought that was a great ide and started marking patients on a vent or unable to speak. Can’t believe no one thought of it before. All in all three weeks I would not want to do again.
Peggye Reynolds
That has been one of my fears. So far I have managed the chocking and a few small breathing scares. But I cannot explain what the fear is like. I say small compared to yours. Take care. Know that you have helped me.
Anthony Martin
I had the same experience, after my second Pfizer Covid -19 vaccine I experienced in sequence back and leg weakness so walking 50 yards became an ordeal, double vision, inability to raise my arms above my head, unable to hold my head up without a neck brace, difficulty chewing and swallowing. It took 6 weeks before my condition was diagnosed as Myasthenis Gravis and then 10 days on Prednisone cured me. My Acetylcholine Receptor Binding blood tests are still very high at 10.5 but I am otherwise asymptomatic. I submitted a VAERS report but have never heard any feedback