My name is Liz Shank; I am 24 and live in San Diego, California.
Summer of 2017 felt like it was going very well, I had been constantly busy
between my work and social life. The only hiccup was that I felt like I was
getting sick more often than usual. I took no sick days and wasn't slowing down
for a second.
Exactly a week before GBS diagnosis : Taken June 24, 2017
At the end of February 2017, I had received my first flu shot and
felt sick within a couple days of getting it. The months went by and as I got
to the last part of June I noticed a couple strange things. While out with
friends two weeks before I entered the hospital, I felt as if I had a hair
stuck in my throat and had them checking with flashlights for this
"phantom hair" and my drinks tasted strange to me even though I had
them countless times before.
Throughout the last week of June I went about my
regular schedule and woke up Friday, June 30, 2017, to get ready for work.
While washing my hands, I realized that the water hitting the top of them felt
dull. My feet had been feeling a little numb but I played it off as an effect
from wearing heels. Throughout the day, I would check to see if my hands still
felt strange under water…they did. That evening, I went out with friends and
the next morning slept in and woke up feeling strange, I brushed off those strange feelings
until I tried driving that evening and my left arm suddenly couldn’t lift up
all the the way to turn my steering wheel.
I searched my symptoms on the web and remember seeing Guillain-Barre
Syndrome pop up as a possibility - I scrolled past thinking "well that
can't be it." Can you believe that even after that I had an internal
debate of whether it was “serious” enough to wait for hours in an emergency
room? Luckily for my impatient twenty-three
year old self, there were only a couple people in the waiting room that
evening.
That night I heard about the option of Guillain-Barre Syndrome again
as the doctor explained the different possibilities for my symptoms. I had a
plethora of tests including a spinal tap that was inconclusive and three MRIs
to rule out other issues, I was hospitalized and diagnosed with Guillain-Barre Syndrome (GBS) by morning. GBS is an
autoimmune disorder in which the immune system attacks the nervous system
damaging the nerve covering which results in tingling, numbness, and weakness
beginning in your extremities that can quickly ascend throughout your body leaving
it in paralysis. It is defined as rare, with only one to two cases per 100,000
people each year. The cause is unknown; however, approximately 50% of cases
occur shortly after a viral or bacterial infection (such as the flu). I had
been sick with a cough for quite awhile prior to the onset of GBS so I fit into
that statistic; later on they confirmed I had mononucleosis in my system. GBS
travels upward from the fingers and toes towards the torso and facial muscles
and can become fatal if it reaches the diaphragm, weakening the muscle and
causing breathing to become labored.
In my
case, within a few days I found myself in ICU almost completely paralyzed and
on a ventilator and nasogastric feeding tube. The days leading up to being
intubated, I did not know how to feel as I lost the strength from my legs and
lost the ability to get up and use the restroom. They had tried Intravenous
Immunoglobulin but I was only getting worse as the treatments were given. I
found that texting became a strain and my voice started to become a whisper.
The weakness had spread to my diaphragm, throat muscles, and facial muscles
which had begun to take away my ability to breathe and eat. In fear of
intubation, I tried to eat and drink but couldn't swallow and found myself
choking on water.
Receiving Plasmapheresis in ICU
By July 5, 2017, I had a planned intubation. In preparation
for the intubation, I had a nasogastric feeding tube and urinary catheter
inserted. I was wheeled up to ICU, and my nurse held my hand as they prepared
to put me to sleep for the procedure. Waking up from the procedure, I was in a
daze and a nurse was repeating that I had a tube in my throat and it was there to help me. While she spoke,
tears streamed down my cheeks as I kept thinking, " I know that…why are my
hands tied down…I CAN'T EVEN MOVE THEM."
Once
in ICU, I had five rounds of Plasmapheresis (which removes plasma from the
blood) over ten days to help speed recovery. I spent around two months in ICU
and the minutes spent there felt like hours. At one point, I prayed asking God,
"If you know I'm going to never recover and won't be able to move or talk
again, please just take me now." I could only communicate with my loved
ones and doctors by moving my head to spell out words on an alphabet board they
would point to. I felt like my body was
extremely hot and constantly had a fan directed at me even though the
air-conditioning was so cold my family members wore heavy jackets to stay in my
room. I tried to not make a big deal that I would get blurry or double vision
because I heard my doctor say that if I were to have those symptoms it meant it
could be a more severe strain of GBS.
The
nights were the worst for me, that's when the area would get dark and quiet and
my family members would sleep. I would panic about not being able to breathe,
about being too hot, and just about the possibility of something going wrong
and me not being able to scream for help. I was given an easy-touch buzzer to
call the nurses because my fingers could move a little to hit it but during the
night my arm would fall off the pillow it was on and I couldn't move it up to
hit the buzzer. One day I woke up in the middle in the night and found that I
had lost my ability to move my fingers. The next morning, the doctors gathered
and were baffled as to why I would gain movement then lose it. This made me
have a break down about whether I would continue to have movement gains and
then lose them (I later found that this was just muscle fatigue).
First day outside of ICU
Fortunately,
more than 95% of patients recover with little to no residual effects. Because
of the long-term nature of my stay, I had a tracheotomy and gastrostomy. I had
the enormous task of then trying to learn how to breathe off the ventilator so
I could use a Passy-Muir valve to talk, drink, and eventually eat. I got
pneumonia a few times and even had to have liquid removed from between my lung
and the outer wall. When I moved out of ICU to a lesser intense unit, I felt
like my improvements were really showing. Because of some amazing speech and
respiratory therapists I was getting better at speaking and was passing the
tests to be able to eat a portion of my meals. I was finally getting my limbs
to move with the help of my physical and occupational therapists. Sleeping
became something I didn't panic about and I finally saw the light at the end of
the tunnel. After almost three months in the hospital, I was transferred to a
rehabilitation center where I spent about a month.
100th Day Hospitalized
After 111 days of hospitalization,
on October 19, 2017, I was able to walk out of rehab (a very short walk with my
walker) and I finally found my way back home. It's been six months since I left
the hospital and I have gone from looking at a parking lot and thinking,
"I can't imagine walking across this even with my walker" to hiking a
6-mile muddy trail and only falling once. I have gone from needing three people
to help transfer me from a wheelchair to a toilet to being able to fully care
for myself. I have gone from not being able to open water bottles to opening
items for others. I still can't run (not that I enjoyed doing that before…) and
I still get tired easily, I am not able to get low to the ground and get back
up again without an item to push myself up, and my feet are tingly and
partially numb. But all in all, I feel grateful that I have made such great
improvements in such a short time.
During my varying stages of this disease, I experienced an outpouring of support financially, emotionally,
and spiritually from my healthcare providers and my community. To all of those
who laid my foundation of support, I thank you. Thank you to those who held my
hands even when I couldn’t squeeze back, who moved my limbs so they wouldn’t
get stiff, who painted my nails and brushed my hair, who smiled at me when I
couldn’t smile back, who told me stories when I couldn’t talk, who cried with
me, who laughed with me, who wrote me well wishes, who brought me gifts to
cheer me up, who kept me in their thoughts and prayers, who donated to a
surprise GoFundMe for my medical costs, who orchestrated and participated in a
surprise fundraiser, and who showed me in countless ways that I am loved. I never
thought that I would feel so embraced by so many people. While in the hospital,
I determined that I would spread awareness about GBS as a way to thank those
who are supporting me in this journey towards full mobility and health.
This is
a "small" snippet of my GBS adventures and one day I want to share
all of my small details because when I was at my worst I wanted to know that
what I was feeling was "normal." I met a liaison from the GBS-CIDP
Foundation and she made the disease seem like it could be conquered. I hope to
do the same for someone else someday. My GBS journey to recovery is not yet
over but the best is yet to come.
Fellow GBS Survivor, Semret Russo
As Nelson Mandela stated, “It always seems
impossible until it’s done.”
Hiking 6-Mile trail in Hawaii : Taken April 22,2018
Follow
my journey!
Instagram:
@liznicoleshank
Facebook:
facebook.com/elizabeth.shank.7 ;