Science with a Dash of Emotion

Usually, if you are diagnosed with GBS, IVIG is the first course of treatment because it is less invasive and easier to administer. The cost is dependent upon your weight; it can run up to 10k per infusion and mine were always 1 infusion per day for 5 days! Isn't that crazy?! As for plasmapheresis, it is considered more invasive because a surgeon has to insert the Quinton catheter in the neck or near the clavicle before you're able to receive treatment. It was also a 5-day course and usually runs up to 6k per infusion. During plasmapheresis, a technician trained in the process uses a machine to separate the plasma component in blood. Albumin was used in my case to replace the plasma. The second time I received treatment, I experienced hypotension. It dropped so drastically that I almost experienced syncope. I started seeing grainy dots and had tunnel vision. It was not a good feeling at all. The technician had to immediately stop treatment until all stats normalized. He then adjusted the rate of administration, which resolved the side effect. Physicians constantly monitored my blood work and found that my white blood count (WBC) was always on the lower end of the spectrum. It was constantly dropping so in addition to the albumin, they also used cryoprecipitate to try and increase my WBC for the remaining few treatments. An electromyography (EMG) with nerve conduction study was performed by the neurologist to determine the damage in the peripheral nerves of my arms and legs. During the procedure, electrode needles are inserted into the muscle being studied along with flat metal discs taped to the same area. An electric shock is emitted to measure nerve conduction. It was quite an awful experience! I can't imagine how comfortable electroacupuncture is if it's anything comparable to what I experienced. In any case, it was determined that only the myelin sheath portion of the nerve was damaged, which is the most common form of GBS.

Generally, you're only supposed to receive IVIG or plasmapheresis, not both. Research shows no benefits to receiving both. However, everyone reacts to each treatment so differently, so what may work for one person may not be effective for another. I will never truly know whether IVIG treatment just didn't work out for me or if it just wasn't given enough time to work. This is due to the fact that I received plasmapheresis shortly after, which basically filters out all the IVIG. I could understand receiving plasmapheresis first and if that didn't work, resorting to IVIG, but not the other way around. Still, it was better to try.

Being bed-bound with GBS posed a number of complications. Life was quickly spiraling out of control. I never thought I would become so dependent upon people in such an intimate way. I'm pretty modest so having to adjust to wearing a hospital gown, wearing a diaper, constantly getting poked and prodded, and having strangers give me bed baths and change me was something I had to adjust to and accept. Having so many different hands touching you is never something you really get used to. The staff had to reposition me every two hours to prevent pressure ulcers. Intermittent pneumatic compression on the calves was used to prevent blood clots. I had to be fed. Incontinence was one of the hardest things I had to come to terms with. My whole body became so numb that I could no longer feel when I needed to go. This includes bowel movements. I had to take stool softeners to aid me and when that didn't work, suppositories had to be used, and when THAT didn't work, enemas became my frenemy. Although it may seem too detailed, highlighting incontinence and irregular bowel movements is an important aspect of this affliction. It's a common symptom that GBS patients face. I didn't fully comprehend the gravity of the situation I was in. I wasn't prepared for all the complications and side effects. The whole dynamic of how a human body functions under normal circumstances had changed in an instant. When you go through something like this, you can't help but think about how amazing a human body is. The mechanics of it all is truly remarkable. You gain a new sense of appreciation for it. You also learn to appreciate the mundane every day tasks you don't give a second thought to such as washing your hair and face, brushing your teeth, putting on clothes, etc.

My parents's friend happens to be a pharmacist at the hospital I was admitted to. Their friend acted as a liaison between me and the staff + other facilities since nothing else could be done for me at the current hospital. She became my advocate and pushed to have me admitted at UC Irvine Medical Center. It was the best choice for me because it is close to home, nationally ranked, and is a teaching facility so I have more sets of eyes monitoring me. After a back and forth exchange with insurance, at the end of February, my request was honored and I was whisked off by ambulance to my new home. My prayer had been answered favorably, which would be the only time in this whole experience. I am extremely thankful for being blessed with pretty amazing people in my life. You don't find out who will really be there for you until you end up in a hospital. I've been both sorely disappointed and pleasantly surprised. My friends have made me more of a priority than some of the people I call family. You make time for the things and people you want to make time for and I just didn't make it onto their important list. It's a harsh reality, but dwelling on the negative doesn't help anyone so I've just come to terms with it. What I've shared doesn't serve to dismiss family or diminish the support I have received from some of them. I am nothing but grateful to all those who buckled up and went on this roller coaster of a journey with me and being my voice when I had none. Some friends went above and beyond to ensure I was getting adequate care, I wasn't lonely or sleeping alone, and I was getting proper nutrition. People offered me their personal accounts so I can listen to music, book audio files, and streaming accounts so I'd never be bored. I love them to the moon and back x infinity!

UC Irvine Medical Center has a nice new building with a floor for neurological disorders. The staff was extremely friendly and bubbly. They made my stay a bit more comfortable and everyone there seems to really love their job. As the days passed, my friends and I noticed that my eating habits were changing. It became harder to chew and swallow certain food items. Even simply eating would tire me out. Due to this new onset of symptoms, my respiratory rate and oxygen saturation became heavily monitored. GBS eventually claimed my respiratory system in early March. Up to 30% of patients progress to respiratory failure requiring ventilation. Being ventilated with my mouth constantly open was a very unpleasant experience to say the least. For someone like me who has a medical background, I like to be informed on all matters before agreeing with any treatments and procedures. I was stubborn yet again thinking that it would not get worse, but after a week I succumbed to the idea that I was going to be in this for the long haul. Being ventilated is one of the most uncomfortable experiences ever. I was heavily sedated with a fentanyl drip to keep myself comfortable. They finally had an opening the following week to put me on the list for a tracheotomy and gastronomy feeding tube insertion. That was the day that I lost my voice. I was surprisingly calm and unfazed by what was to come. I knew they were going to do a great job and that there wouldn't be any complications. I awoke to the familiar faces of friends and family.

I have never felt more frustrated, isolated, and helpless than when I became a short-term quadriplegic hooked up to a ventilator that became my lifeline. It was a fate that wasn't expected and one that I didn't want to accept. I went from living a normal active life to being completely paralyzed and trapped in my own body in a blink of an eye. I didn't want to be completely dependent upon people. The only thing I had any control over were my thoughts, but even then, they were unpredictable at times. I would never wish this upon the worst of people. Never once did I question, 'Why me?'. I've always gone through life with the strong belief that you're never thrown into a situation that you cannot handle and/or learn from. A strong mindset will take you further than you can fathom, especially with a disease such as this. It's what has helped me remain so resilient and positive. You need to believe in yourself in order to overcome. Everyone will hear the saying, mind over matter, at least once in life and it's not without reason. It's a simple truth.

The Beginning

I am a 28 year old woman diagnosed with Guillain-Barré Syndrome (GBS). GBS is an autoimmune disorder in which the body creates excessive antibodies that attack the myelin sheath portion of the peripheral nerves, resulting in various degrees of numbness, weakness, and/or paralysis. I'd like to share my story in hopes of shedding light upon this rare disorder. Not only is it rare, it affects each individual so differently that there's no ONE chart you can refer to to break down all physical/mental symptoms, side effects, and how it affects everyone involved. Because this is an ongoing ordeal, I will be blogging frequently and hope to share others' account to highlight similarities and differences. I wish everyone going through this (family and friends included) finds solace in knowing they are not alone. That there's hope and light at the end of the tunnel. Though healing may take what seems like an eternity, each day is a blessing and upon reflection, each little victory is, in actuality, a huge milestone! This chronicle will take a peek into my roller coaster ride with not only GBS, but also my faith and family dynamic.

Growing up, I always had a strange inkling that I was going to die young, that I had no future beyond my 20s. I was partially right. I only nearly died, which has turned my world upside down. It had me questioning my accomplishments thus far and what my purpose was in life. Was this it?

On January 30, 2016, I went snowboarding in Big Bear with friends. I felt a slight tingly sensation on my fingertips and toes after removing my gear but thought nothing of it since it was cold up on the mountains. When the feeling didn't subside the following day, I made an appointment with my doctor for blood work. Being a 'glass half-full' type of gal, I did an extensive Google search of my symptoms thinking the sensation was due to a vitamin B12 deficiency and not some rare disorder I've never heard of. As luck would have it, it was far worse than I had imagined, which has been a testament of my life thus far. As the days passed, the tingling turned to numbness and was spreading upwards in my limbs. I still proceeded to live life normally, going to work and exercising in the evening. My appointment on Wednesday arrived and went smoothly. The physician saw nothing abnormal, but I was already experiencing a mild weakness in my right arm and just walking a short distance had my heart beating as if I had just sprinted. I knew something was very, very wrong. By the time I got my normal test results back on Tuesday, February 9th, the weakness had worsened in my right arm and started to attack my left leg. I couldn't walk to my bedroom door from my bed without feeling short of breath. It felt like I had just run a marathon; my heart was palpitating so fast, even worse than before. The numbness affected my proprioception, making me feel as if I was walking on clouds. I had a tough time finding my balance and resembled a drunk person trying to walk straight but failing miserably to do so. My sister, Tammy, took me to the ER the same day instead of waiting for insurance to approve me to see a neurologist within network. I hate our medical insurance system. We waited in the ER for 3 hours, me in a wheelchair and my sister in a chair right next to me, before being seen. The doctors worried I was going to have a heart attack or stroke because my blood pressure (BP) kept registering so high. They ended up injecting me with a beta blocker to lower it.

2 MRIs (one with and one without contrast), a CT scan, a lumbar puncture, and an EKG later, I received my first round of IVIG on February 10th as a precaution in case it was GBS. IVIG serves to suppress the bad antibodies from further attacking the body, thereby slowing and stopping symptoms from progressing. Most people don't respond to it. With the aid of a walker, I was able to get around for a few days before my legs gave out completely, leaving me bed-bound. I vividly recall my first battle with humility the day prior to becoming bed-bound. I had an argument with the sister that took me to the ER, which subsequently caused me to ban her from showing up at the hospital again. My parents were out of town in Vietnam so my friends took over the responsibility of keeping me company and making sure I was comfortable/had everything I needed. During the evening one night, I used the walker to go to the restroom. After finishing up, I could hardly pull myself up, resulting in me falling to the cold tiled flooring with my underwear around my ankles and the walker hitting into the wall. All the commotion caused my guy friends to worry and ask if I needed help. I promptly yelled back, "No!", feeling so mortified and cherry red in the face. A minute later I acquiesced and accepted their initial offer. One pulled my underwear up for me without looking while the other lifted me up from my underarms. Bless both of them for being such amazing friends. That was a bit off tangent, but serves as a reminder of the day I could no longer use my legs for walking. The five rounds of IVIG (Intravenous Immunoglobulin G) did nothing for me. After I lost use of my right arm, my left leg was next, followed by my right leg then my left arm. It was a very atypical case so they had a difficult time diagnosing me. 

I was sent off to a rehab center even though I was declining and ended up back at the hospital two days later where they placed a Quinton catheter near my clavicle and started me on plasmapheresis February 20th (pictures below). I started to show signs of improvement in the use of my left hand after a couple treatments, but a few days later I had lost use of it again. This was absolutely frustrating and such a blow to my strength and hope. What's even more frustrating is the majority of those afflicted never get an answer as to what triggered the disorder in the first place. How do you try to face a battle that isn't tangible? I attribute mine to possible stress that was being pent up within me. I had just lost out on a potential business opportunity, I lost my job during the initial onset of symptoms, and I was trying to figure whether I should continue pursuing PA school or go down a different path altogether. Maybe I had kept everything inside for so long that it manifested into something my body felt it needed to fight off, only it was attacking the wrong things.

tbc...