My name is Jasmyn, I am 24 years old from Ontario, Canada and this is my story of my fight with Guillain Barre Syndrome.
Before March 2017, Guillain-Barre Syndrome was only a disease I had briefly heard of in college while studying for a career in Paramedics. On March 21st, 2017, I left work early and went to see my family physician. I hadn’t been feeling well for about a week and assumed I had an on going cold. I was working patient transfer and between working with the sick and the long hours I always ended up under the weather. My family doctor told me I had a sinus infection and sent me home with some amoxicillin and a note for two days bed rest. On March 23rd, I woke up with no voice. After looking at my throat in the mirror I realized I had developed tonsillitis. I attempted to take a drink of water and my amoxicillin and ended up choking on it, nothing was going down right. I took it easy and tried to rest, I had no idea how bad things could get.
The next day arrived and I felt terrible. I was still unable to swallow or get my medication down so we headed to the emergency room. I checked in at the ER and tried to explain with what little voice I had that I couldn’t get fluids down or my medication and was starting to feel dehydrated. My blood pressure was pretty high and that became their concern over everything. I waited for hours to be seen, I watched as people came in after me and were seen first. I felt forgotten.
As I waited my fingers and toes started tingling. I assumed I just wasn’t getting enough oxygen and tried deeper breathing and even stepping outside for fresh air. After several hours they took me back to a see and treat area where I again had to start a long wait to be seen. I know how the system works and all, but its hard waiting when you know something isn’t right. Finally, they called me back into a tiny little curtained “room” to wait some more. A resident came in and I explained my symptoms. I explained I was being treated for a sinus infection and had noticed I had also developed tonsillitis. I was starting to develop some back pain at this point, and the tingling in my hands and feet hadn’t improved. They swabbed my throat for mono and strep, which both came back negative. They gave me some morphine and asked me to sip on some water. Once again, I couldn’t get it down and started choking and coughing. Another resident came in to give their perspective and I explained that my hands and feet had started tingling. I explained I had a medical background and chatted until the doctor came in to check things out.
He had no answers other then a confirmation I had tonsillitis. They stuck me back out into the minor treatment waiting room and hooked me up to an IV for the dehydration and told me to continue sipping on water an to try a popsicle. After about an hour he sat me down at a desk and said he was sending me home and I had to force fluids and my medication down. I tried explaining I couldn’t and that something was wrong. No one wanted to listen and it broke me. I’ve always been on the other side of the healthcare system, now being the person needing help and not getting any when you know something is very wrong was terrifying. He sent me for an x-ray of my throat, which showed no abnormality and they discharged me.
Back home I started having more extreme back pain, and the tingling in my hands and feet had turned into numbness. Again, I attempted to take the medication and water and I automatically started choking. The water went right into my lungs. I tried sleeping briefly but the pain kept increasing. We decided to try our other local hospital. After waiting with extreme pain for a few more hours in the ER a doctor came in to tell me the tingling was due to me hyperventilating. I wasn’t, nor had I at all. I tried telling him but he wasn’t interested in listening. He prescribed another antibiotic and told me to go home and force fluids down with my medication. I didn’t want to leave but they were done listening to me.
At home the pain continued to increase in my back, becoming unbearable, the pain moved into my hips. I few hours later on March 25th I went back to the ER. This time the nurse I had took me more seriously. She sent me for a throat x-ray, and a chest x-ray. I had blood work done, and swabs of my throat. An IV was placed to rehydrate me, and then the doctor came in and told me I had to get my medication down and that I would be sent home to rest. Just as I was losing all hope that anyone would help me the charge nurse came over and said she wanted me to stay for observation, she would find me a bed on a floor and I would be admitted. All I wanted was for someone to believe me and help me.
I was moved to a room on a floor when a bed became available. My IV was reconnected and they started me on some pain medication. A resident came in to do my workup, and I explained everything from the beginning in my whisper of a voice. He decided to test my reflexes. And I immediately knew something was very wrong. My reflexes were delayed. He then tried the Babinski test. I knew from school that my feet should react and curl. Nothing happened, I had no reaction whatsoever. We both just looked at each other and he left to find the doctor. I remember they sent me for a test in imaging and when I came back to the floor I was in isolation in a private room. Everyone entering had to wear gloves, gowns and masks.
On March 26th my doctor came in followed by an ENT, she wanted to scope me. I would finally we would get some answers. My vocal cords were paralyzed open. Completely abducted. Anything I attempted to swallow was going right into my lungs. This started the spiral. I was sent for a chest x-ray and they scheduled a CT scan and an MRI. They lifted my isolation when my swabs came back negative. I went down for the CT scan and when they lay me flat it became incredibly hard to breathe. I managed to get through the CT, but the MRI was a different story. They put me on some oxygen and lay me flat on their table and I couldn’t breathe.
I panicked. I was sent back to the floor where I began having weakness in my arms and legs. I had been writing notes to people as my voice became harder to hear, my writing became illegible as my arms became weaker. I developed double vision, and blurred vision. Every attempt to make my way to the bathroom became more difficult. I couldn’t hold myself up anymore. Then my breathing started deteriorating. For days liquids and saliva had been entering my lungs and now it made it very difficult to breathe. The on-call ICU physician was called to assess me and determined that a code team would come up and monitor me. Two respiratory therapists from the code team came up and attempted to improve my breathing with nebulized Ventolin. It made my breathing worse. They wanted me to go attempt to have the MRI again and attempted to coach my breathing but laying flat after the Ventolin treatment felt like drowning. They began deep suctioning my lungs trying to clear out everything that had collected in them. It took so much out of me, I couldn’t fight anymore. They said I had to keep trying to clear my lungs, or I’d end up intubated. I could barely move on my own anymore, the exhaustion was too much. I knew I needed to be intubated. They took me down to the ICU, restrained me, numbed my throat and sedated me. I woke up maybe an hour or two later intubated and still restrained. Not exactly the best situation to be in, but I could breathe. Before my sedation had worn off they had completed the MRI.
Over the next 15 days I was intubated. About two days into intubation they told me they were planning on starting tube feeds, I can’t explain how awful the feeling of the cold liquid moving down the tube along my esophagus felt, but it was bad enough for me to fight accepting tube feeds for days. The only thing that changed my mind was threatening to insert a nasogastric tube, I wasn’t having any of that. I was on and off tube feeds and protein for two weeks. Occasionally after evening feeds I would end up vomiting, which was a terrible experience.
equipment in icu: tube feeds and intravenous
Being intubated and incredibly weak did not stop me from communicating. I wrote notes to everyone throughout my intubation. I have over 150 double sided pages filled with notes. Some legible, some more resembling chicken scratch.
I was on a number of medications such as: fentanyl, morphine, dilaudid, gabapentin, Zofran, gravol, ibuprofen, Ativan, blood thinners, steroids, and potassium. I had blood drawn daily, and 2-3 intravenous lines maintained at all times. I had numerous tests; MRIs, lumbar puncture, x-rays, daily pulmonary function tests, EMGs, and ultrasounds. I worked almost daily with physiotherapy. They attempted to have me sit up and would either use a mechanical lift or attempt to lift me themselves into a chair to help strengthen my neck and core muscles.
I was given 5 doses of IVIG starting March 28th which began the start of my recovery. They were unsure of a diagnosis at the time. One of the working diagnosis was GBS, they decided IVIG could possibly help me. After the treatment I was able to attempt to start walking again.
First week at physio working with ankle weights
April 9th I was extubated surrounded by an extensive team of respiratory therapists, ENT’s, neurologists, ICU physicians, and nurses. They were nervous I would need a tracheostomy. I am proud to say I did not. My vocal cords were still slowly recovering. But they showed improvement from prior to intubation with slight movement. Within an hour of being extubated I was taking my first steps ventilator free. 15 steps with the help of a walker and high flow oxygen. The next day I met with a voice therapist for a swallow study, they tested me with water, thickened liquids and pudding to see what I could tolerate. I failed the test and was put back on intravenous fluids.
April 9th right after extubation
April 11th, we tried the swallow study again and I passed. I was cleared for thickened liquids. Each day following my voice therapist brought me things to try, thickened liquids turned into pureed food, and eventually solid food. I stayed in the ICU for close observation until April 14th. I was moved to another floor where I continued walking laps around the unit and attempting stairs for the first time. I was discharged at night on April 16th. Home for the end of Easter.
April 16: discharged
I saw an in-home Speech & Language Therapist the first week home. I also had a follow up with my ENT and neurologist. They all stated there was improvement but a long road ahead.
On April 19th I had a follow up cookie swallow test. I ate barium covered cookies and pudding while they imaged my vocal cords and throat. It was a relief watching the screen and seeing my vocal cords moving again. My follow up with the ENT included a scope which showed that my left vocal cord was lagging in recovery but improving more and more.
A few weeks later I began outpatient voice therapy, physiotherapy and counseling at a local hospital. I began daily vocal exercises and physical activity. I continued in those physiotherapy programs until October 2017. I began a new neurological physiotherapy program in November at the YMCA and am still attending it 3 times a week. My follow up EMG in October showed almost complete recovery of my large nerves. I still have some ways to go in getting my strength back to normal. I still get numbness in my feet, and cold related tingling in my hands, hopefully overtime this will correct itself. I am making my way around Ontario on mini hiking trips to improve my strength and lung capacity.
I wouldn’t be here today if it weren’t for the amazing staff I had at Grand River Hospital, I am great full for the care I received and for them saving my life.
current picture
I also had an incredible support team in my family, friends and coworkers. My mom slept in the ICU every night for almost 3 weeks, and I constantly had a stream of visitors filling up my room to sit and hold my hand, cheer me up and watch Netflix with.
support system
I lost 30 lbs during my 23 day stay at the hospital and still have scars from my many Intravenous lines that went interstitial. Throughout this experience I have lost so much, I may not see results yet but I know it will make me an incredibly strong person and I will be better for the experience I had.
Instagram: @jasmyndj
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