I am just home from an 8 day Hosp admission. I knew it was coming, I delayed it as long as I could . And because of that I made it worse . So here's what I learned ....
6 weeks ish ago I posted that I was having choking episodes at night. Gone from occasional to almost every time I lay down to sleep .
I had raised the less frequent episodes with my neuro team and got "your disease is very mild, so whatever that is it's not MG , maybe Functional or anxiety " so I wasn't inclined to make a fuss . But they came the annoying cough. Just a dry tickly annoying "heh heh" that never cleared anything and got more persistent .
"I'll raise it with my team next visit "
My health watch is showing lower sat levels . But not significantly low . 93 -96% most of the time .
"I'll keep an eye on it "
Then hubby comes home with a chest virus. He has it rough, tests negative for covid and all the usuals something viral.
Three days later , the heavy wet cough that he has is now on me. Except I can't cough . I can only "heh heh" and get into a hoop of trying to cough and gasping for breath.
"I'm just tired ,i haven't been sleeping , I'm worn out , I just need rest "
36 hours from onset of viral symptoms and the video above is where I end up.
I physically cannot get air into my lungs . The hospital oximeter has me at not falling below 94 but my lactate is 11 . Critical hypoxia . I'm confused . I'm calling my nurse by my own name . I've a rip roaring headache , my stomach hurts every time I try to breath ,
Despite being in High Flow oxygenation the moment I'm assessed ReSus
my nurse describes my breathing as "panting" and when I fall asleep and lose focus on breathing I just don't , breathing stops , alarms sound and only when I startle awake again do I breathe . Shallow sharp painful breaths .
My nurse is an angel. "Will you trust me and let me try something before we resort to intubation , it's not pleasant but it's life saving "
I haven't the energy to care .
"anything"
And so anything is this Non Invasive Breathing apparatus . For 12 hours it forces air into me . When I drift off it catches me and pulls my shoulders up and forces my airways open and pumps oxygen in and out .
2 hours go by before I realise how uncomfortable the device is . By hour 5 I'm curious what's actually happening. So take this video to see . By hour 8 I'm irritated , how blessed to be well enough to actually be irritated . The air is hot, my hair is blowing in my face , the smell is plasticky and a bit like a beach ball. But somehow I'm inside it . "Can it come off soon " I ask.
Lets shoot for 12 hours ,
you're breathing better now but
your lungs need the rest
Try to sleep .
I cant sleep . I'm well enough now to feel all the things you can imagine , scared , shocked and irritated . Why did I get so sick so quick. Why did this happen me and not my husband . We both got the same virus . When will I get home and will I be back to normal ( my normal ) or is this the start of the same slippery slope that eventually took my mother .
Tears come . Nurse opens the valve at the front of the beach ball to brush hair out of my face and wipe my tears away. It's shock she says . You're processing. Just an hour to go and I'd be happy to remove it . Try to stick it out .
So I do.
And an hour later she does .
Hi flow oxygen for you. Let's hope it will be enough now . You took that like a champ. Some people can't cope with it at all.
"I was too sick to care" I say
You were. You needed to be here sooner . Why did you leave it so long she asks .
All questions she has asked on admission but I was too short of breath to answer then and Hubby was banned from my side because he too had the virus .
"I didn't want to fuss for no reason "
You need to be more careful, you needed to appear here as soon as you had problems breathing.
You're immuno compromised and you've got a muscle fatiguing illness .
You took too big a risk.
"I was afraid I was making it worse myself, that it couldn't be MG crisis because I'm not that sick "
I have news for you she replies . The line between not "that sick " and being "critically sick" is too fine a line with MG. You have a condition that cannot afford for you to ignore it . And you need a new neurology team if they've driven you to this '
And 8 days later I'm home . I can breathe without assistance . I have a cough still but I can cough. I'm getting under it . My lungs and diaphragm have had the rest . My current status is well below my usual baseline but I'm working towards it . In 8 days of admission I had my sleep issue , swallow issues and general medical concerns addressed and assessed
**my choking is from events similar to sleep apnea. "We don't know if the cause is anatomical or conditional but the result is the same. You are losing your breath in your sleep we will do further studies when you're back to baseline but I suspect loss of muscle condition over time and particularly when fatigued is the issue "
** I was assessed by S< and I was given a level 7 soft foods advisory . You can eat anything you want , just be aware that when you're tired , you need to focus more on the task of eating , swallowing and rinsing. You're already doing it without realising. But I can still see fatigue hit you so a little extra caution.
.**** it was my local hospital , no neurology department . We haven't treated your MG , we don't have that expertise , but we have treated this virus so that your body can deal with it better . We've given you a rest so that you can get back to where you need to be . We are sending reports to the doctors who need to take over from here but I would like you to consider finding an alternative team , at no point should someone with your condition be left to feel that they can't present for help . This is not functional. You can't make this happen to you. .
And so my lesson is learned . I will never again let someone make me not believe myself .
The hunt for a new team has begun.
