Day 16- The Faces of Guillain Barre: Holly's Story

Monday, May 16, 2016 0 Comments

My name is Holly, I am a GBS survivor. On October 26th, 2015 I got into the shower and began to feel weak at the knees. I was almost 5 months pregnant at the time and thought I was experiencing low blood pressure. I sat down in the shower and called for my husband to help me. Once he got me laid down in bed I started to notice a tremor in my arms. I could initiate the muscle movement but had a hard time maintaining it. It looked similar to Parkinson's movements. 

Before GBS
I am a cardiac nurse at the regional hospital in Spokane, WA. I add this detail because it's the reason I didn't go to the hospital right away, nurses don't really make the best patients. I waited about 2 hours and on the second call to the OBGYN the on call nurse urged me to go to the ER. I wanted to tough it out but as my weakness increased my mind went more to the baby and I needed to make sure he was alright. 
My husband helped me walk to the car, once again I could initiate movement and even hold my own weight but the tremors were increasing and I was having this overwhelming feeling of exhaustion. We got to the ER and he put me in a wheelchair. We chose to go to the hospital that my husband and I are both nurses at. This hospital is the regional facility and so I knew we would get the highest level of care. As he wheeled me into the waiting room I thought to myself, "oh my word what if this is Guillain-barre!" I mean why on earth would that rare disease come to mind. I'm only 26 years old, I don't fit the typical population at risk.  I learned about it in school and even had a professor who had it the year before, but why would I get it? I had had the flu around three and a half weeks prior to these symptoms but did not receive that years flu shot.
As we waited in the ER, for what seemed like forever (when you go to the best hospital in the area you have to expect a wait), I was losing the ability to hold my own head up. I began to feel sick to my stomach, hot, and my heart rate seemed to sky rocket. My husband got help and the next thing I know I was laying on a trauma bed with my shirt cut off of me and people buzzing around trying to get an IV started and my husband answering questions. A doctor came in not long after that and with a quick neuro check she stated that she wanted to get a neurologist in to see me and that she was thinking either MS (Multiple Sclerosis) or Guillain-Barré syndrome. She left and I told my husband that I had thought it was GBS as well and he told me that he was always thinking the same thing while waiting in the ER waiting room. I was rushed to an MRI and told that I would be admitted to the 8th floor. Knowing the hospital I knew it was the neuro floor, I had worked that floor and felt nervous but knew that I could still breath and I would be well taken care of. After the MRI the transporter said we would be heading to the 2nd floor... I told him no that's ICU I need to go to the neuro floor. The doctors had decided while I was at MRI that they needed to be treating this as if it were GBS even if we didn't have a definitive diagnosis. And bless them for making this call. I was admitted to the neuro ICU where I was seen by a doctor that I work with. He let me know that the next step would be to start immunoglobulin therapy and I would most likely need to be intubated. 

My world was crashing in around me. I wasn't thinking clearly, I kept telling my husband to do whatever he could to save our baby and not worry about me. A little background adding to the trauma and devastation of this situation was that my sister had past away from ovarian cancer only the month before this. In the end of her fight she had to be intubated as a last resort to relieve her of the pain but still allow for treatment to be given. My parents were there by her side watching a machine breath for her. So there I was only a month after, faced with the same nightmare. I didn't sleep that night. While they administered a dose of IV-IG (immunoglobulin therapy) 5x the normal dose, I prayed and I prayed that God would let me keep breathing. My dad arrived late into the night and I had him on my right and my dearest love on my left and I prayed and prayed. It was the longest night of my life but I breathed on my own the whole time. 

The next morning it was busy; a lumbar puncture, a PIC line, and a catheter which I dreaded but knew was necessary. By this time I could no longer move and was experiencing awful nerve pain. Since I was able to receive treatment so quickly the nerve demyelination that happens with GBS was stopped which was wonderful but it left me in this limbo of exposed nerves. The air hurt, being touched hurt and my heart hurt for my precious baby who I still didn't know was ok. After getting baby checked out (found out we were having a boy) and a pain pump started (got loopy and promptly told everyone we were having a boy even though it was supposed to be a secret) I was able to sleep for the first time in over 36 hours. I remained in the ICU for a couple more days until they were sure of my ability to breath on my own. I then was transfer to the neuro floor. 

One night on the neuro floor my husband woke up to me crying, a nurse came into the room because she saw my heart rate increase on the heart monitor. I didn't know where I was or why I was there and thought that the doctors and nurses were trying to hurt me. I had become septic because of an infection from my catheter. After I was given fluid and antibiotics my confusion subsided. What else could go wrong? Well it turns out that I have an allergy to some antibiotics and received a beautiful rash all over my face. Why do I add this detail? Well when you are paralyzed you can't hold a mirror up to face, you can't even wash your face. The people around you know you are sick and don't think that vanity is very high on the priority list and in reality it really isn't. However, when you are just laying there little things like that become more important. You already feel so terrible you hate to look terrible. After being transferred to a rehab facility the rash got worse. One day my husband helped me into the medical chair, that helped hold my head and arms, I began to cry and confessed how ugly I thought that I was. My sweet love leaned down kissed me and said, "babe, you're the hottest quad I have ever seen." A little humor to add to the situation never hurt. 

While I was in the hospital I was in so much pain that every time the OT's or PT's or docs or nurses came in to do checks and try and move me I would cry and withdraw. Once I got to the rehab I was still in a lot of pain but I knew I needed to start making progress. I already had an ulcer that wasn't seen because of my catheter and I knew that to get better I needed to work. Under the good supervision of the staff at the rehab facility I began trying to move again. With GBS you have to take it slow because there is a risk of regressing back into the paralysis. I told them when they admitted me to the rehab facility that they had one week to work with me and then I was out of there. They all laughed it off but sure enough I was discharged one week later. I was so fortunate to have received vigilant and aggressive care. I was paralyzed for two weeks and even in just two weeks developed significant deficits. It was a long journey to regain back my strength but I knew for my baby boy it had to be done. 

My husband and I started juicing veggies and fruits and working out regularly. I listened to my body and when I felt I needed to take it easy I did. My neurologist tells me that it's possible for the GBS to come back but because I am doing so well with my recovery it's unlikely. I have to give all the credit to God for protecting me and my sweet little boy who is now almost a month old and perfectly healthy. 

Awareness for this syndrome is very important to me because I was the atypical patient and that happens more often than one would think. Once I was diagnosed I found out many young women have been stricken with this disease. I would love for new research to be done to revisit the common population for GBS so that the diagnosis for young women is not missed. Once again I am so thankful to the medical staff, my parents, in-laws, siblings, husband and God for the love, support and protection through that nightmare. I am so thankful that it's over.