Infamous Kindred Hospital and So On Part 1

I was moved to Kindred Hospital in mid-March. As mentioned in the post before this one, Kindred Hospitals in general do not have a good reputation. Their facilities are a little outdated and resources somewhat limited. The first nurse I had encountered reaffirmed my preconceived fears because she was so rude and abrasive. She never told me what she was doing to me. I felt violated and of course she was reported so I got a new nurse and never had to deal with her again. I feel like sometimes when these nurses work for so long, they often forget that they're dealing with human beings and need to be more aware and compassionate. One of the first things you're taught in any medical field is to talk things through with the patient regardless of whether they are alert or not. There's something comforting about being talked through procedures when you're in a strange environment and unwell. Amazingly, people who pull out of comas can oftentimes recall conversations they've overheard or recognize the voices of those who cared for them and talked them through whatever was being done to them. Why is such a simple concept so easily forgotten?

I remember while on the ICU floor, the staff at Kindred spoke to me about a patient they had worked with years ago who came to them with the same disorder, except he was in a coma. He slowly recovered from GBS and became completely functional again. They reassured me that I would fully recover as well because I'm young and healthy. They told me to watch for symptoms that signified initial onset of recovery such as a burning feeling throughout the body and the sensation of pins and needles. Regardless of the prognosis of medical experts and their projected timeline for me, I was stubborn and wanted to believe otherwise. I repeated to myself that what had happened to me wasn't on the worst end of the GBS spectrum. I was going to recover a lot faster than a year. I'd be out before August. We all know how that went. Unfortunately, you can't quite put a timeline on GBS as it affects everyone so diversely. The consensus was that I would be at least 75% recovered by 1 year. Thankfully, I feel like I have surpassed that at 10 months.

I hated that they kept having me change rooms when I stayed at Kindred. It was such a nuisance because they have to transfer me with the bulky ventilator, bed, and bags upon bags of my belongings. It was an exhausting, aggravating, and nerve-racking experience each time. I was already sick and to constantly experience change wasn't something I appreciated. It was especially hard to accept the fact that the hospital was now home. The last room I stayed in had a nice view of the outdoors, but I only started to look out once my neck movement was regained. We had to open and close the blinds each day so I had a sense of time. I didn't see the outside of my room for at least a month or so. One of the most annoying things to me about GBS was the fact that I had developed sensitivity to noise. I don't know why it's a thing for people to come in and talk to me very loudly as if I'm deaf. I think the staff is probably used to dealing with older patients or something. It was just a funny quirk I noticed about a lot of people who came in. We had signs everywhere to remind people to keep their voices down, though few actually read it. We had bright YELLOW signs, white signs, wrote it all over the white boards...to no avail. I'd have to give a signal to my caregivers to remind the staff to lower their voices. Helloooo, I'm on a ventilator and can't talk, but I'm completely alert and my cognitive functions are completely intact. How does that translate to being deaf? Thankfully, that sensitivity went away with time. Another annoying thing about GBS is the amount of weight loss you experience from being bed-bound and only getting nutrients through a G-tube. I usually wear contacts, but had to use my glasses in the hospital and they kept slipping down from the weight loss, so people kept having to push them up for me so I could see. I was about 107 when I first checked into the hospital and at my lowest, as mentioned in my previous post, I was a mere 90 lbs. at 5'4". I looked like a twig and I've struggled with body image issues since high school where I felt immense pressure to constantly maintain a certain weight and look to make myself happy. A part of me kind of liked it, but a bigger part of me knew that wasn't right or healthy. I'm still working on my struggles because it isn't out of the norm for me to only eat one meal a day. It's not that I starve myself, I'm just never really hungry. Sometimes people don't realize that it's just as damaging to make comments to a naturally thin person. You know the notorious Freshman Fifteen once you're in college? Well, the opposite happened to me. I was my fittest and skinniest during college because of how active I was. Remarks in jest about my weight and needing to eat a burger were always laughed off, but I resented it and it only further fueled my battle with my image. It's amazing how cathartic it can be to write about your experiences. I don't think I've ever admitted or discussed my body image issues with anyone. Here it is for the world to see, wow. I think one of the most important things for me right now is to focus on being healthy, body and mind.

Shortly after being admitted, I was assigned a Speech Therapist who worked with me so that I could tolerate a speaking valve placed on my ventilator tubing. The first time I tried it, I crashed and nearly fainted from my oxygen saturation dropping so drastically. It had scared the both of us so much that he ended up taking the speaking valve off my goal list for a while. My days became pretty routine and mundane. During my stay, they would transfer me to a cardiac chair 5 times a week (picture below) in order to strengthen my lungs. Depending on the day, I could tolerate sitting up anywhere between 15 minutes - 1 hour. Sometimes it became too uncomfortable and painful for me to stay up. At Kindred, they are very passionate about weaning and it completely makes sense. Who wants to be stuck relying on a machine to breathe for the rest of their lives if it can be helped? They started to wean me off the ventilator the second week I was in the hospital and I did surprisingly well. It motivated me to push myself to go longer and longer without full assistance. I always had a pulse oximeter on my finger monitoring my oxygen saturation. It would go off from time to time when I was weaning, reminding me I had to take deeper breaths. The machine was very sensitive, so sometimes anything could set the pulse ox off and it would cause the ventilator to make a nasty screeching beeping sound that would alarm anyone. It would drive my dad nuts at night when he tried to sleep because my breathing was erratic when I slept. I would be knocked out due to the sleeping pills so I had no idea, but I know he always complained about the machine and how many times it would beep throughout the night.

The lungs are such amazing organs in the body. The primary muscle that drives breathing is the diaphragm, which wasn't functioning. It also aids with bodily functions. You really take these things for granted until you lose them because you're not aware of their abilities on a day to day basis since it's automatic. Your lungs are always trying to collapse from birth and your body's natural response is to keep them inflated through breathing. Contraction of the diaphragm serves to pull the bottom of the cavity the lung is enclosed in downward, thereby increasing volume while decreasing pressure. Since none of it was functioning properly, a ventilator had to manually inflate my lungs for me to keep them moving. I couldn't take anything by mouth because aspiration was a big possibility. The tracheostomy tube stayed in place with neck straps attached to the face plate of the tubing. It was so weird to go from being a self-proclaimed foodie (I'd try anything once and love to eat) to getting fed some beige colored mush through a G-tube. Once I had my tracheostomy tube and G-tube in, I stopped craving food altogether. I would spend my days watching so much TV or streaming because I was so limited as to what I could do as a quadriplegic. I watched a lot of food and reality shows. I also listened to some audio books to pass the time by. My lungs were constantly scanned to make sure everything was okay. I've had my blood drawn over 50 times by now and am glad my Phlebotomy license is of no use because I can no longer tolerate looking at needles much less having to stick someone. About a week after doing well with weaning, I ended up crashing and had to completely rely on the machine to breathe again. It was devastating and a complete kick to my morale. I was frustrated and couldn't understand why there was such a drastic change in stability when I was averaging 8-12 hours a day of minimal assistance with breathing.

My medication list could probably fill out an entire blank 8.5" x 11" piece of printing paper! I was on everything imaginable because my organs weren't functioning properly. I had to get vitamin supplements, high blood pressure medication, sleeping pills for the insomnia, occasional anxiety medication when the sleeping pills just didn't cut it, pain medication, etc. Luckily, everything was administered through my feeding tube. They started me on more IVIG treatments with an addition of steroids through an IV. Though I saw no immediate changes, I remained hopeful. They ended up switching me to a pill form of steroids and tapered me off of it completely because it wasn't working for me and the cons would outweigh the pros. I noticed my face had gained a little more plumpness and my appetite was jolted from using steroids. I had steadily started to gain more weight even though I was still on the feeding tube. My dad would comment on how much weight I had gained and I know it was a good thing and he had good intentions, but it made me feel a bit self-conscious because I hate the word in Vietnamese. There's no other word you could use to describe it in our language other than saying 'fat'. Hate that word.

Early on, Physical Therapy and Occupational Therapy was very limited focusing solely on passive range of motion to reduce my chances of getting contractures. Contractures, or the shortening and hardening of muscles, would further delay the recovery process. I wasn't physically capable of participating in the exercises. I was only able to observe and try to connect my brain with whatever extremities they were moving and in what way. I willed myself to move to no avail. That was particularly a nuisance when I wasn't in a comfortable position in bed and had to rely on others to help me. Can you imagine how many times I had to be repositioned in every which way to feel comfortable? And to have to convey that to whoever was present at the time through a whiteboard with letters on it as a means of communication was just the cherry on top. Bless everyone's heart who stuck by me and was patient. I had family and friends help with range of motion throughout the day, but in hindsight, I wish I would've asked for it more often. It is extremely important to keep everything moving. If you are a family member or friend of someone going through this, please continue to offer to do range of motion with your loved one even if he/she doesn't ask for it. Encourage it several times a day. It doesn't take much effort on your part and he/she will thank you in the long run for pushing him/her. Holding the position for at least 30 seconds 2-3x is enough as studies show that stretching in one position for more than a minute doesn't benefit you further.

Though the course of GBS was atypical for me, the recovery process was in line with what was to be expected. Some time in early April, the numbness was dissipating in my upper body and I noticed that burning sensation throughout my body like the nurses had mentioned and I started regaining movement in my neck and shoulders. I was able to shrug a little and move my neck side to side. Holding my head up posed to be a bit of a challenge, but it got easier with time. As I regained some movement, we placed the touch sensitive call light next to my head so I could tap on it for help instead of solely relying on my parents staring at me 24/7 in case I needed help for anything. Being on a ventilator always poses some risks. I ended up catching pneumonia in my right lung, which they caught and treated right away. The Yankauer suctioning tube became my best friend; it was always by my side. Some days I had to be suctioned every so often and others I had to be suctioned every minute through the mouth due to accumulation of saliva. That was such a hard job for my parents because they got no rest when I had my bad days. I appreciate them in a way I could never had I not gone through this because the amount of dedication they had is just amazing. I wouldn't have survived without their support because there is no way I could call to be suctioned every minute had I been alone. I would constantly have to get my tracheostomy suctioned as well and only the Respiratory Therapists or Nurses were cleared to perform the suctioning to clear out phlegm and whatever else was accumulating in my airways. Getting suctioned is disgusting and uncomfortable; the slurping sound is sure appetizing. It makes you gag, tear up, lose your breath, and makes the machine beep like crazy all at the same time. It always takes a little bit of time to recover after a deep suctioning, but it has to be done.

Family Matters, Communication, and More

Apologies are in order for my lack of updates to the blog! As I promised, I will try to update more frequently, especially now that I am fully able to type on a laptop once more!

I was surprisingly pretty calm about the reality of being intubated. I felt like everyone else was more worried about it than I was. My mom was recounting to others about how she almost 'fainted' because she had to step outside so a team could come in to stick a tube down my throat even though the procedure had been thoroughly explained and fairly simple. It wasn't the tracheotomy yet. I understand that as a mother, it is a terrible thing to have to go through and see, but I felt like she was being a little overly dramatic and making it a little too much about herself. Maybe I wasn't as affected by it due to my medical knowledge, but it's how I felt at the time. I understand that the way she felt and reacted wasn't wrong at all and her intentions were in the right place. It was just conveyed to me in an irritating manner. She kept talking about herself while I was recovering and I felt she could have done that elsewhere instead of me having to listen to it all. I ended up making amends with my sister who I had previously banned from the hospital because I realized that in the grand scheme of things, it was a petty fight and the fight for my life was a bigger issue which I needed all the support I could get for. My cousin, Vivian, was the one that had a heart to heart with me while I had a tube down my throat and she said that we're family and that we'll always have our differences and arguments, but we'll ultimately be there for one another when it counts. She told me to set aside my anger and save the arguments for when I am 100% again. I tearfully nodded in agreement.

Off on a tangent, but it has been really nice to be able to see Tammy again and I have seen her grow so much in this past year alone that it astounds me. The way that she stepped up and helped me out in every possible way makes me see her in a whole different light; I respect her even more so because she is fighting her own demons and yet is still willing to go out of her way to make me comfortable whenever she can. I am forever indebted to her kindness and giving heart. I love you so so much. I know we never say it to one another, but I appreciate you and nothing you do ever goes unnoticed. Jackie is another one that I am grateful for though she stopped coming in. She constantly relieved my parents of their watchful duty every Saturday when she drove up from San Diego so they could catch a break since my mom took the morning/afternoon shifts and my dad came in during the evenings and had to try to unsuccessfully sleep on a makeshift 'bed' (if you could even call it that) of chairs for months on end. I was grateful for the friends that took the time to also help relieve my family of their duties: Dan, Hieu, and Linh to name a few. Other family members did visit a few times, but not as often as my friends did. I was really disappointed with family as this was a critical condition and they chose to not support me during this dark time in my life. Dan took afternoon shifts and would help with any paperwork I needed to complete. He was my liaison as well as Linh. Hieu took over during the nights and stayed at the hospitals overnight when he could to help closely monitor me. I am forever grateful to all those that reached out and made an effort to see me and make sure I was comfortable.

My parents had just come back from their vacation from Vietnam at the end of February just as I was getting worse. I was a bit resentful that they had not come back sooner but later found out that as soon as they heard I was in the hospital, they had indeed tried to find a flight back, but due to it being during Chinese New Year, the flights were extremely limited and the ones available were completely out of budget. It goes to show just how key communication is in any relationship. I had harbored that resentment towards them for far too long during my decline before finding out the truth of what had gone on. I didn't feel like it was the right time to bring it up anyway in the midst of what was going on, not to mention I was no longer able to talk. In the Asian culture, it is normal to not talk about things. You are just expected to understand everything or be complacent and quiet. There is no communication because of a patriarchal superiority complex that is deeply embedded within the community. It is why I always end up butting heads with my father because I am independent and opinionated. I feel like women do have a say and should be treated with respect no matter what. There should be mutual respect regardless of age. Yes, my parents's wisdom surpasses mine due to experience alone, but it doesn't make my wisdom any less meaningful and should also be taken into consideration. Women should be treated as equals regardless of whether you are the 'man of the family'. There is something inherently humbling and dignifying in being able to admit when you are wrong and having honest conversations when there are disagreements, but for my father, it's his way or the highway. I hate that. He isn't always right and he is one of those people who expect too much of others. If you do something nice for someone, do it out of the kindness of your heart. Don't do it with the mindset that that person is going to owe you down the road. Don't expect them to return the favor. That mentality is so Asian and annoying to me. Unfortunately, my father and I are very stubborn and alike in a lot of ways so it doesn't make for a very healthy relationship if you could even call it one. I am nowhere near ungrateful for everything he's done for me and will gladly support him in life however I can because he gave life to me, but you shouldn't have kids if all you expect out of them later in life is for them to owe you. I grew up in an abusive household. It wasn't your typical corporal punishment implementation. Being the eldest, I was mostly on the receiving end, especially when he drank so you can only begin to fathom how I view my father and what kind of 'relationship' we have. My mother never did anything to convene and neither did anyone else. Phew, that was a load of negativity off of my shoulders!

Back to my experience with all the machines! I was monitored frequently whilst on the ventilator for obvious reasons. It was extremely intimidating and distracting being on one. The noises that were constantly bombarding me and having a machine doing the breathing for me was something I never got used to. It prevented me from sleeping. It got to the point where I was hallucinating due to staying up for days on end. I was having conversations in my mind with my friends and family who weren't even present in the room, but I could have sworn they were physically there. I started seeing a fly walking around on the walls. I had to be prescribed medication to help me sleep. We ended up finding that a combination of Ambien and Restoril was what was best for me. Even then, I would knock out for 2 hours at most before waking up again, I would never remember anything the next day. For example, due to incontinence, I had to be catheterized on and off. When I was on the sleeping pills, I would knock out and not even recall anything that happened during that time. I recall also having what seemed to be a mini seizure one night at the hospital and found my head shaking uncontrollably in a side to side motion as if I were saying no. My father freaked out on me and started yelling at me telling me to stop shaking my head and to try and communicate what I needed. Mind you, I had a tracheostomy in my throat and was unable to talk. He so was frustrated that he took it out on me and unleashed so much negative energy instead of running to get help from the nurses. I cried out of distress after, which caused him to be even more upset. I guess that's the only way he knows how to express his concerns, even though it doesn't make it right. He was always very critical of me even though nothing was within my control.

Don't get me wrong, I completely appreciate everything my family has done for me thus far. We all have our flaws, but this blog is meant to be completely honest in terms of my feelings and what I was going through. It doesn't serve to slander any one's character. I just want to highlight the good and the bad that comes along with this journey.

One night during my stay in the ICU of the neurological department floor, the nurse that was helping me suggested a means of communication as Jackie was present. She flipped over the white board with pain levels on one side and proceeded to write the alphabet out on the blank side so my sister and I could talk. That was the start of my ability to communicate with everyone who came in to visit me. We ended up refining the process by creating a system on a whiteboard we purchased. Reading lips is no easy feat. Some people were very good at it and didn't solely require use of the board and some were well, you can guess. This is what my white board looked like:
1. ABCDE
2. FGHIJ
3. KLMNO
4. PQRST
5. UVWXYZ
I was paralyzed from top to bottom with the exception of my face. I would mouth the number, then someone would point to a letter until we got to the correct letter or they were able to read my lips to speed up the process. Two blinks signified a new word. Since English isn't a strong suit for my father, he was the least patient and got flustered easily whenever I tried to communicate with him so I only ever talked to him when I really needed something. Everyone also learned to read my lips for simple things that I constantly needed. Words like: pain, suction, RT, hot, cold, nurse, poo, and pee were a constant staple that everyone was able to easily pick up on.

As I stabilized, I was forced to move facilities yet again. I never thought I'd end up in the back of an ambulance ever let alone having to be transferred to and from places in one over 10 times now! I don't even want to look at the bill for those transfers! This one was especially difficult for me physically and mentally because I was hooked up to a ventilator so they had to hook me up to a portable one just as I was getting used to the one I was using in my room! I was very apprehensive about this particular facility because of all the awful things I've heard about Kindred Hospitals in general. This very abrasive ICU nurse attended to me on the first day and I cried due to her harshness. The room was old, the television set is one of those big hunky square boxes hanging on the wall, and the volume control was out of whack where when you turned it on it would be full blast or not at all. My dad had to cover the sound coming from the remote using a lot of napkins and rubber bands to mute the sound because I was sensitive to loud noises. Not being able to be out in natural light really messed with my head. I had constant headaches and ringing in my ear. I thought I was in a never ending nightmare, but fortunately, the other nurses were more gentle and compassionate. Once I became even more stable, I was moved to the lower floor from their ICU unit and I felt like treatment was a lot better there. I had my own room wherever I went, probably due to my age.

I had a neurologist visit me during my stay at Kindred and she had also concluded that the EMG study only showed demyelination of the nerves still and not actual damage to the nerve itself. I hated the numbness I was experiencing throughout my body in addition to the paralysis because my mind would play tricks on me and make me feel like my limbs were in odd positions. I couldn't distinguish between hot and cold on my skin, but always felt hot on the inside of my body. The AC was always requested to be set pretty low and I never used a blanket to cover myself when I slept. The only way I could sleep was on my back due to the paralysis, which is completely uncomfortable and contributed to the lack of sleep I was getting even though I was on two different types of sleeping medication. I ended up going down to 90 lbs. at my lowest weight from being bed bound and not being able to eat real food. The numbness took a toll on my diaphragm and lungs. I had to be constantly catheterized and I am someone who is prone to infections because it's just my lot in life. I had to continually be on antibiotics several times throughout my stay due to getting UTIs all the time. That didn't aid in my recovery process. Each time I got one, it was a set back. The incontinence was humiliating. I worked at a hospital for a year in 2012 and have had a lot of encounters with all sorts of situations, which developed my empathy and compassion for people even further. I never imagined I'd find myself in such a similar predicament, distinctly at the age of 28. The thought of having to use a diaper for my bodily functions was a ridiculous notion and relying on strangers to give me bed baths and change me was something I really struggled to come to terms with. Involving my parents in the process was even worse because the extra helping hand was needed, but I didn't want them seeing me this vulnerable. I'm pretty modest, so seeing me so bare and helpless was a battle that I had to overcome. You end up having to concede and accept all the help you can get with this disorder.

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...