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.
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