In light of my most recent
dance with the gods of death, the previous two times seem like walks in the
park really—barely even qualified as a threat to my mortality. This time death
threw pretty much everything it had at me, and I am still here to write the
story. Apparently, I am a tough cookie.
I’ve heard flu statistics…so
many people get the flu, so many get serious complications, so many die…but
never really took them personally. That was about elderly people or babies, or
someone other than me, a relatively healthy 40 year old.
I decided the best way to relay
what I went through was to recreate what my diary would have been, if I had
kept one while I was sick. The following is pretty accurate I think.
Day 1 – The worst sore throat
imaginable. Nausea, extreme fatigue, fever 103. Went to the ER at 2 am. Given
fluids. Sent home. (Not before someone asked: “Do you have a rash?” in
reference to a kind of flushed, sunburn-like cast to my skin, but which was
never followed up on).
Day 2 – Went to see my regular
doctor. Told I have about the worst case of the flu ever. Sent home with flu
treatments. (Not before again asked: “Do you have a rash?” Again with no follow
up).
Day 3 – Saturday. Doctor is
closed. Back in the ER. Fluids. Sent home. Then back again. Blood pressure
super low, heart rate super high. Admitted to the hospital.
Day 4+ - Barely remember
anything after being admitted. Remember doctors trying to intubate me 2 or 3
times. Felt like being struck by lightning. Don’t remember the tracheotomy, thank
goodness.
Unconscious for the part where
they decide the “rash” is a symptom of toxic shock—after I have multiple system
failure: epiglottitis, respiratory failure, heart failure.
Don’t remember the
gynecological exam. Really guys? I came in with a sore throat and that’s where you go? Don’t remember
delivering a roundhouse kick to the side of a male nurse’s head either. They
won’t figure out the toxic shock is from a strep infection, rather than a
wayward tampon, for a while.
Unconscious for the massive
outpouring of love from hundreds of people on Facebook and around town. So
happy to find out later that people pitched in and helped my husband by
cleaning the house, grocery shopping, or just meeting James for lunch and
giving him someone to talk to.
Blissfully unaware of the fluid
filling my lungs, the chest tubes thrust through my ribcage…oh so many tubes.
Unaware of the 50-50 odds or the certainty of the doctors that I would have
brain damage or never walk again. No concept of how hard it was for my mother
to be told not to touch me because any stimulation could kill me.
Day 14 – Starting to come out
of the coma as they wean me off the drugs. Can’t talk--hole in my throat. Communicate
by mouthing words or writing. My hands are curled like claws. Writing is hard.
Have to really enunciate with my lips to be understood. Some people are piss
poor at lip reading. Sometimes I just need to try a different word. Note: “Bed
pan” is too complex. “Poop” is much easier.
Day…what day is it? – Son-of-a-bword
those Fentanyl hallucinations are nasty—the paranoid, horror movie kind, not
the warm dragon-hugs kind I used to get on Demerol. Somehow manage, without a
voice, to exercise my patient rights to refuse treatment, because I think my
head has been exploded, and I’ve been transferred to a secret hospital facility
in the desert where they are holding me against my will. I want to be sent to my neurologist in Seattle, dammit! James and my
mom are called in early in the morning to talk some sense into me.
Day 15 - Starting to realize
that, even though it all seemed so real, the only way all the things I have
been seeing makes any sense is if they were hallucinations—none of it was real.
But this whole tracheotomy thing is real. What’s it going to be like having a
hole in my throat? Will I ever be normal again? Will I ever speak?
Rigmarole involving a crane-lifty
thing, and several people, to attempt walking--only results in about 2 steps
before I am completely exhausted. Well, proved them wrong about never walking
again.
Middle of the night my trach
tube gets blocked and I can’t breath. I dying! Nurse is trying. Doctors come
flying. “You are at 100% oxygen,” they say. “Just relax! Breath through your
mouth!” I reach out grasping, begging with my eyes--save me! Finally, they take
the tube out. Air! Breathing again. New tube.
Day 16- Blood vessel burst in
my eye, must be from last night—dark red eyeball instead of white. Gross.
Day 17 – Doc took the chest
tubes out! Graduated from Intensive Care to Cardiac Care. Starting to have to
take care of myself for a change. Don’t have one nurse all to myself anymore.
Trach tube comes out. The hole
will close in no time, so they say.
Swallow and Speech therapists
visit. No I did not know that so many muscles were involved.
Spoon fed dyed-blue ice chips
and apple sauce. No blue in the trach hole—it’s a go to eat. Only thickened
liquids allowed.
First meal: milkshake! Yum.
More therapists.
Walking!
Whispering!
Wiped my own a$$!
Yikes, these nurses need my
help to figure out the machines still attached to me. Need to pay attention.
Tests show that my epiglottis
is not quite shutting properly when I swallow. I could die from drinking a
glass of water. Might have to go home with a long-term nasal feeding tube. I am
so sure that if I could just get the tube out I will be able to swallow just
fine.
Trying a bit more solid food.
Canned peaches. Mmmmm.
Meal times are an exercise in
patience. Must sit at a 90 degree angle and take one mouthful at a time. Swallow.
Swallow again. Take a sip of milkshake. Takes forever, and, then the darned
feedings through the nasal tube start up—I get so full I feel like I am going
to burst—my automatic feeding machine hell.
Writing is easier, but
everything takes so long to write. My hands are better now that they gave me
putty to exercise my fingers with.
Every time I press the call
button they ask over the intercom “Can I help you?” Seriously? Mute girl
here. Tapping morse code S-O-S on
the speaker doesn’t seem to help. I try to use a text to speech app on my
tablet. The nurse gets a kick out of my tablet saying: “The toilet needs
attention.” But I have to type every time I want to say something new (wish I
could save some crucial phrases), and with my inept hands, it takes about as
long as writing anyway.
Whispering is bad for my vocal
chords. If I want to talk, the therapists say I have to give it a rest. Soooo
hard! But I do it. No whispering for 24 hours. They told me to start practicing
vowel sounds tomorrow. To try “EEEEEE” first.
Day 18 - Press my hand over my trach
hole and give it a go: “EEEEEEE.” #Fistbump #balalalala
So damn excited by my voice
that I say “EEEEE” to everyone who comes into my room for the rest of the day.
All the nurses and doctors are
so amazed by my recovery—like, the way they say it, I don’t think any of them
believed I would.
My speech sounds start getting
more complicated and I start talking for reals in short bursts, with long
rests. My chatterbox nature wins out and I am talking much more than I probably
should.
I get so many awesome visits
from friends and family, but I start getting tired of long visits…like mom:
staring at me intensely, saying: “don’t feel you need to entertain me”….arrrg!
Is kicking my mom out a sign I am getting better? I think so.
Day 20 – The nasal tube gets
blocked. Hallelujah, they pull it out! But now I am swallowing like a rock
star. I don’t have to go home on a feeding tube. Mealtimes are still an
exercise in patience though. And now I have to actually eat all my food—no more
automatic feeding machine. It’s exhausting.
Day 21 – They are letting me go
home!
Stairs for the first time O – M
– G that was hard.
Day 22 – Is it just me or were
the stairs a lot easier the second time?
Step forward.
Step forward.
Step forward.
Day 25 – 10 steps back. In the
hospital again. What is going on? I don’t feel good. The hospital takes scans
and sees a collection of fluid in my chest. They don’t want to touch me with a 10
foot pole. It might be an abscess. Ambulance to the nearest hospital where they
can handle a chest-cracking surgery to take an abscess out. Well I finally got
my wish to be in a Seattle hospital…only they sent me to Virginia Mason instead
of Harborview.
Day 26 – CT Scans. I think I
have had 5 in the last 7 days. Cardio-thoracic surgeon laughs it off. All that
worry for nothing. It’s just fluid—no abscess. A little antibiotics and I will
be right as rain.
Day 28 – Sent home again. Two
hour drive. Ugh.
No more air coming out of my trach
hole. Never thought it would be so good to be a mouth-breather. Still a wound
on the outside, but must be closed on the inside, which means I can talk
without pressing on the hole with my fingers. I still do it though. Habit.
Why can’t I eat?
Day 30 – No. No. No. Don’t feel
well again. Please, not back to Seattle. It’s so far away.
Back to Seattle.
Need the strong stuff for the
fluid in my chest—IV antibiotics.
Virginia Mason has a really
awesome “room service” for getting meals. Just wish I could eat anything but
milkshakes. I order 2 for every meal.
Day 34 – Going home soon. Still
need IV antibiotics though. They need to put another PICC line in so I can be
on the IV at home.
Ok, I never got a PICC line
while I was awake before. NOBODY EVER TOLD ME THEY PUT A LONG PLASTIC TUBE ALL
THE WAY FROM MY ARM TO MY HEART!
The nurse brings me a pamphelet.
Now I know all the ways a PICC line can go wrong. Am I going to die? What is
that tickle-feeling in my heart? Holy crap the tube is too long; it’s in my
heart! I am going to die!
Shh. No it’s not. It’s my
imagination. It’s nerves. Just relax.
Still having a lot of trouble
eating. Yay for milkshakes—not.
Swallow a pill the wrong way
and have to force-Heimlich it out of my windpipe.
Day 35 – Wake up with the worst
sore throat. Crying. Why can’t I just get better? Text James. He is probably
sleeping in his hotel room. It’s 4 am. Ten minutes later he opens the door to
my room. He crawls into the tiny bed and cuddles me for a while. I have worn
the brave face for far too long. I pour my heart out about every little worry
and fear. It feels so much better.
Day 36 – They are sending me
home. But I am not ready! The nurse says I don’t have to go if I don’t feel
ready. Too scared. I don’t want to end up back again.
They bring a cot for James so
he can spend the night.
Day 37 – The sore throat is
gone just like that. I feel ready to go home. I feel better.
Day 38 – Home IV therapy is
cool. I get these little tennis ball size pouches when it’s time for treatment,
hook em up and let em go. It takes about 40 minutes and I can walk around with
no pole to anchor me down. I go grocery shopping with one in my pocket.
We have so many cans of soup.
OMG. The cupboard is full and there are cans on the counter even. But I just
can’t eat.
Nothing appeals to me.
When I try to eat, it gets
stuck. The swallow in my throat is fine. It’s getting stuck somewhere down in
my chest.
Then it comes back up.
I try to eat a sandwich. One
bite. Ugh. Back up it comes over the next hour. Then another hour,
regurgitating every little swallow of saliva.
When will it end!
Day 45 – Back down to Seattle
for scans and a check up. The fluid in my chest is clearing up, but the doctor
asks me if I am having trouble swallowing. YES OMG YES!
My esophagus is so swollen they
can see it on the scan. I have a fungal infection from too many antibiotics.
You mean this swallow thing is
fixable with a few simple pills? Thankyouthankyouthankyou.
Umm, you don’t expect me to
swallow that horse pill do you? Yes, liquid. Much better.
Got my new meds. IV coming out.
Everything is looking up.
Day 52 – Back to Seattle for a
check up. Been eating like normal for a few days. Wahoo! Tests show everything
is better. No more hospital visits, no more scans! Going home for good and
happy!
It’s been about 3 months since
Day 1 now, and I am doing much better. The scar on my neck is just a little
thing. The illness is gone; I am just still dealing with the repercussions of
being mostly immobile in bed for 3 weeks. You would be surprised how fast your
muscles can atrophy when you don’t use them.
My strength came back
pretty fast; I just had to do stuff. Once I climbed the stairs a few times,
once I stood up from sitting a few times, once I lifted a couple things, my
muscles seemed to wake up and remember they were supposed to actually work. I
still can’t run, but I can kind of pseudo jog. My voice is a bit funny, and I
have only one pitch (no singing and impossible to whisper under my breath to
someone during a movie), but it’s there and I’m alive
©2015 Amanda June Hagarty.
No comments:
Post a Comment
Have a thought? Please share it. I want to hear from you.