My GBS Story
I greeted the new year on January 1st
2010 with joy and optimism, We had enjoyed a wonderful Christmas and I was a
happy little 58 year old Grandma with a beautiful new Grandson. We were looking forward to what we thought
would be a wonderful new year.
Before GBS
I had a busy day planned
for January 15th. There were several things on my list. I stopped
for a quick appointment not far from home, then I visited with my sister. It
seemed like a normal day as I drove around town with the baby strapped to his
seat in the back seat of the car. I
noticed my hands and feet felt numb. But I shook it off and boogied on about my
business, little suspecting the living nightmare that would begin that night.
I woke up to go
to the bathroom and fell 3 times before I could made it back to my bed. We
called my son and he and my husband took me to the hospital as I was rapidly
losing all control of my body. Within hours about all I could only turn my head
from side to side.
My Brother had
GBS about 10 years before this and it was the first thing we thought of when I
got sick. But they assured us that this was almost impossible because the
disease was very rare and does not run in families. I was in the hospital several weeks and received
many tests before they grudgingly admitted this was possible.
I received IVIG treatments and after I was
transferred to Herman Hospital in Houston Texas I Underwent two rounds of
Plasmapheresis. By this time I was on a feeding tube, a catheter and had a
tracheotomy. I remember very little about my time in Houston as I was highly
medicated or in a coma most of the time.
In my wheelchair
After a few weeks
in Houston they felt there was nothing left that they could do for me and they
sent me back to a hospital near my home in Southwest Louisiana . My Doctor told us later that he didn’t give me 24 hours to live
when they took me out of the ambulance.
I was still in a coma when they brought me
back to a hospital in my area. I remember my sister fussing at me, telling me
to stop sleeping my life away when at last I woke up.
I could not speak, eat, breathe, or move in
any way to speak of, except to move my head from side to side. Every night the
nurse would make a little “nest” of pillows around me and I would be there
exactly as they left me the next morning. I could not shift myself around in
the bed.
I remember once
there was a mosquito in the room when I was alone. He buzzed around and lit on
my ear. I could not move or call out. I shook my head and he flew away, but he
came back. This was repeated till I got tired of the process and just lay there
till he drank his fill.
In the hospital
Around the last
part of May they moved me to a rehabilitation facility in a large area
Hospital, by then the feeding tube had been removed and the breathing machine disconnected
but I still had a tube in my neck. I was being spoon fed by my family and the
staff and I had some therapy. I still could not move much or roll my own wheel
chair.
I stayed nine
weeks in the rehabilitation facility without much progress except the trach
tube and catheter finally came out.
I came home
about July 16th or 17th and almost immediately I found I
could roll my own wheel chair. Home
health Therapists came three times every week and we hired a sitter to stay
with me while my husband went to work. It was the Home Heath ladies got me standing
up and walking on my walker and going to the bathroom by myself. After a while I could no longer qualify for
Home health and my sitter, and later my husband when he retired took me to receive
physical and occupational therapy. I went from a wheelchair, to a walker, to crutches,
to a cane. I still walk funny sometimes, and I fall down if I am not careful.
My hands and feet remain numb, I drop things often, have poor reflexes and
still do not drive.
But I can cook, and clean my house (sort of). I can shop
(though I need a nap afterwards) and I can take care of my own personal needs.
I was a very fast typist before I got sick, of course that is gone now. I peck
out words these days with two fingers. My fine movement is gone, I can no
longer work a necklace clasp or put on most of my earrings. Shoes are a
problem, most of them hurt my feet and I go barefoot most of the time. I get
sick if I get to hot, and tire very quickly, but I am so grateful for what I
have. I am not sure what my trigger was but I did get a flu shot in 2009 before
I got GBS.
My Brother got
Miller-fisher GBS about the year 2000, I got GBS in 2010, my niece got GBS
around the first of 2016 I think. We also have a first cousin from Arizona who had GBS.
My daughter, became pregnant while I was
undergoing therapy and I told her I wanted to be able to stand up to witness the birth of her baby. And I did, they pushed me to her room in my wheelchair but I was able to stand to greet my new Granddaughter.
My granddaughter and I
There was much prayer that went out for me
while I was sick and I believe the Lord played a big part in my recovery.
