The Gimpy Girl Who Could: The Faces of Guillain Barré & CIDP 2018: Day 31- Liz #98

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.

Walking out of Rehab : Taken October 19,2017

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.