Category: My GBS Story

It’s now day 8 since this all started with Guillain Barre Syndrome. My nurse on duty today was Renée, whose very caring and helpful. My parents arrived around noon. They had to do another Bronchoscopy for mucus removal early this morning with the camera. My readings were stable with a temp of 37.2. The nurses had to change my bed today, the other one was a trial bed to for the new ICU. My parents just couldn’t imagine how they were going to move me from one bed to another. They did it though.

My lungs had to be cleaned manually this time at noon. The doctors were going to do EMG nerve conduction test today, but I wasn’t awake enough. One of the nurses on duty Sophie requested Louise, a spiritual care practitioner to follow my recovery from Guillain Barre and to also help my family through this difficult time.

My lungs needed to be cleaned manually  again at 2:20pm, it was only 2.5 hrs since last time. My recovery from Pneumonia seems to be getting better. My parents said I was very agitated around 4 pm, trying so hard to talk when he opens his eyes. It was just hard for everyone to watch this as I try and recover from GBS.

Day 7 since becoming ill with Guillain Barre Syndrome, I’m still in an induced coma and family is worried. The doctors and nurses are changing my induced coma drugs to a milder one today as they don’t want me in a deep sleep. My brother Chris and my sister Stephanie visited me today in the ICU. It was very hard for them seeing me like this in my coma completely helpless as I try and beat GBS. My uncles Andre and Brian called today inquiring on my status and seeing how I was doing. My parents were busy answering messages and phone calls from concerned people. Everyone was very concerned. All everyone could do is wait and see if I pull through.

Day 7 Guillain Barre Syndrome

Day 6 Guillain Barre Syndrome, still in an induced coma, the nurses and respiratory therapists had to do manual breathing on me using a bag valve mask (BVM) today as something happened. It has many names like Ambu bag, manual resuscitator or self inflating bag which is a hand held device used for patients who are not breathing or not breathing adequately. 

My parents believe the tubes may have been unhooked when changing my positions. They knew something was going on as they had to leave the room , the nurses were hurrying. My mother was very upset and there alone as she watched on unable to do anything and worrying. The nurse Renee was excellent, she went to talk to my mother in waiting room and said these things do happen from time to time. It seemed like an eternity for my mother before Renee came in to talk to her. My mother kept walking to my room  checking but the curtains were still closed waiting and worrying.

They had to do another Bronchoscopy today using the camera again removing mucus from my lungs. I also had a slight fever and I received my 4th dose of IVIG today. They were also checking my heartbeat today and blood pressure during treatments and it was good.

Day 6 Guillain Barre Syndrome

It’s now day 5 since Guillain Barre Syndrome started, I’m still in an induced coma and now I have a touch of pneumonia starting. I also have a fever of 39 and was given antibiotics. They also had to remove mucus from my lungs with camera called a Bronchoscopy. My family watch on as I’m fighting and hoping for the best. GBS is taking a toll on me.

Day 5 Guillain Barre Syndrome

My parents called the hospital at 6 am this morning checking in on me and Dominique was the night nurse. She told my parents that I had a good night but that I had a little fever. She also said they had to change the breathing tube today.

Day 4 Guillain Barre Syndrome

After all this I was officially diagnosed with Guillain Barre Syndrome and now I lay here in a induced coma. The lumbar puncture test the day before confirmed what I was thinking all along. My breathing became so compromised they had to place me in a coma, they intubated me and placed me on mechanical ventilator. Now I lay here in a coma and unsure on what lies ahead. My life now is in the hands of the doctors and nurses that are taking care of me. It’s crazy on how Guillain Barre Syndrome can literally turn your life upside down.

I knew I was in rough shape, I was literally walking a tight rope between life and death. As I sit here and write this, this is the first time seeing these photos of me in an induced coma fighting against this awful auto immune disorder called Guillain Barre Syndrome. It’s kind of hard to watch as it brings back memories, emotions, and everything that I literally had to go through.

While I was in my coma they had me hooked up to so much stuff. They had me on a feeding tube and were giving me 3,000 calories a day.

I lay here completely helpless. One moment i’m awake and the next moment i’m in an induced coma. I don’t remember much but there are a few things I do.

Here is some of the equipment that is keeping me alive. It’s kind of scary to think that my life is relying upon this machine but at the same time it’s pretty neat as well.

Everyone experiences different things when placed in a coma. For some they don’t remember anything other than just a gap in their life with no idea what was going on during this time. For me as I lay here the only thing I remember or for what I thought was real is me laying in my hospital bed and the doctor standing behind the curtain. I could see him through it but he would not speak to me just standing there silently. I was telling him I did not want to go on but again he would not say anything. For some reason at this point, probably out of frustration I called him a coward as he just stood there not speaking to me but was he listening? I didn’t want to go on anymore, why wasn’t he listening? I don’t know what happened after but all of a sudden I wanted to live. I started telling the doctor to help me and that I wanted to go on and live. I continue to lay in my bed with no response from the doctor unsure if I’m being heard and what was to come.

Then all of a sudden I heard a meeting between the doctors, hospital management, and my wife and parents discussing how they were going to pay for all my treatments. I could hear the stress from everyone as they tried to figure out how they were going to pay for this. I kept hearing a man saying that this is what was gonna cost every day as I required so much care. I remember hearing my wife and my parents having private conversations trying to figure things out. I lay there wondering what was going to happen to me, how are they going to pay for such a large bill go forward for all my treatments. I felt the stress from everyone, I was stressed out to thinking I cannot even help, I cannot speak, what was going to happen to me. Then all a sudden I hear an agreement was reached towards the cost of my treatments and care going forward. Now I know this was not real but just something that was going through my head while I lay there in my induced coma.

Will I ever come out of my induced coma? Will I be healed from Guillain Barre Syndrome? What will come next of my life as a result of GBS? How long will I be in this coma for? So many questions but yet so few answers.

My parents and my family waited next to my bedside everyday worrying as I lay there helpless fighting for my life wondering if I’ll be okay. This time was not just difficult for me but for everyone involved.

Today is day two and I need to be tested for Guillain Barre Syndrome as I know this is what I have and I need treatment for GBS right away. I can’t help but sit there saying to myself what are the doctors waiting for please test me for it.

I just woke up not long ago and I didn’t get much sleep, too much on my mind and who can sleep in the hospital anyways. It was around 8am and I had to go to the washroom so I tried standing up out of bed but when I tried I quickly sat back down. I tried again and to my surprise I had lost my legs and I quickly fell to the ground. I collapsed to the floor, I went down like a slinky. I’m now laying on the hospital floor embarrassed as to what just happened. It took 5 nurses and a security guard to place me on the transfer board and put me back in bed. I’m now laying in bed knowing everything is getting worse with my health.

What is wrong with me? Is this GBS? I need answers.

The doctor I was admitted under followed up with me this morning. She asked me the routine questions and learned about what had just happened prior with me falling on the floor. She seen my mobility was getting worse. She then informs me that a neurologist was coming in to see me to try and figure out what’s going on with me. I was happy to be able to speak to someone else. Hopefully I’ll be able to get some answers.

Guillain Barre Syndrome Is Paralyzing Me In Front Of My Own Eyes

Now I am unable to walk, now confined to bed and now I can’t even walk to the washroom anymore. I lay here unable to move and now I have to use a portable urinal to go pee now. I can’t even hold it myself and now need help for everything I do. Everything was fine a few days ago and now this is what I’m dealing with. I can’t believe this. Doesn’t even seem real. It’s like a bad dream but this is no dream at all, this is happening. I’m slowly becoming paralyzed in front of my own eyes.

It was around noon time and my parents came in to visit me. At the same time my lunch had just arrived. It was an egg sandwich and I couldn’t even open it up. My mother opened up the sandwich for me. I tried eating but I couldn’t even pick up the sandwich and bring it to my mouth. I had lost my hands and my arms now. My mother had to feed me. I’m now an adult baby unable to take care of myself now. Things continue to get worse but again I am not receiving any treatment as I slowly watch my body deteriorate more and more. All that’s going through my mind at this time is I need answers now, treatment now, i’m getting worse and worse. Can it get much worse then this? I’m about to find out.

The neurologist came into see me, asked me questions, tested my reflexes, and did an overall physical examination. During our conversation I brought up Guillain Barre Syndrome with him as a strongly told him this is what I have. At this point I wanted a lumbar puncture done which is the test they use for Guillain Barre Syndrome or GBS. You can just tell by our conversation that he thought it was the same thing as me but doctors don’t want you to worry and are very reluctant to tell you what they’re thinking. He proceeded to tell me he wanted to do a few more tests first before going to a lumbar puncture test for GBS.

I went for more tests and more MRI. When you can’t move and you feel trapped and confined in your own body going in the MRI machine is no fun. Towards the end after having numerous ones I had some anxiety having to go in there more. I can’t tell you how many I had, first they wanted the brain done, then upper chest neck and complete body. I could not stand going in that machine anymore. After my tests the neurologist came back and told me he is proceeding with the lumbar puncture test for Guillain Barre Syndrome. Finally….. I’m going to find out for sure what I have. Two nurses came in and sat me up leaning me forward hunched over and held me still while the neurologist stuck a needle in my back and drew some spinal fluid to perform the test.

With my health deteriorating more and more they brought me over to the Surgical ICU Department for more observation while they waited for the Guillain Barre test to come back. I’ve never seen so many nurses around me. The respiratory therapist was there monitoring my breathing. My breathing was deteriorating as well. I was starting to get tired just talking and shortness of breath. The lumbar puncture test finally came back and it was positive for Guillain Barre Syndrome. The doctor spoke with myself, Cheyenne and our oldest daughter Moriya and informed us that their major concern now is that my breathing doesn’t become compromised and that they will be keeping me under close observation and should my breathing continue to deteriorate they will have to intervene and intubate me and place me on a mechanical ventilator.

They continued to monitor my breathing and had me do some blow tests on a regular basis. Within minutes my breathing strength went from 15 to 6, oxygen levels went down drastically. At that point after looking at the nurses faces as well as the doctor and respiratory therapist I knew how serious this was. They wouldn’t wait 10 minutes, I had to say what I had to say quickly to Cheyenne and the kids. Out of everything I was going through that was the hardest part. When you see the scared look on peoples faces is never a good feeling. I didn’t know what was gonna happen next, I didn’t know how things were going to turn out. Trying to find your words to say to people in a few minutes is tough. Will I be OK, what were my last words I was going to say to her and the kids? I had tons of things going through my mind but so little time say what I wanted to say. I have been strong my whole life, I was trying to be strong for them by saying everything is going to be OK. The truth was I didn’t think I was going to make it. This is something I haven’t said until now.

After having a moment alone with them I made time to quickly call my parents to inform them what was about to happen. They had just gotten home from hospital and received my call and informed them I’m being put in an induced coma by Dr Bourgeois as my oxygen levels had dropped drastically. They said they were coming back right away.

I said goodbye to Cheyenne and Moriya and I was quickly put in an induced coma. I was hoping I would see my family and kids again.

My parents rushed to the hospital breaking many traffic rules on the way but by the time they arrived I was already put into a coma. Now everyone waits for the unknown and whether or not I’ll be okay.

Guillain Barre Syndrome? What is that? I didn’t know either up until today. Today started off like any normal day waking up and getting ready for work. Little did I know today was going to be as far from normal as it can be. I work at Royal Bank as a banking advisor and I did not know when I left that for work that morning I would not return home that day. Today August 1st is the day my life change forever.

It all started around 1 PM when I noticed while I was sitting at my desk my hands felt weak and I had no strength in them. I was having trouble just holding my pen. At the time when this happened I told my team coach who happened to be sitting with me that day what was going on in case anything ever happened to me. My coach asked me if I was OK I told him yeah it’s probably nothing. I went back to work.

Later that day I had a scheduled meeting with my manager at 4pm at my desk. Just before my meeting I went for a quick break and I noticed that my legs were quite heavy while I was walking to the break room. At this point I knew this was weird and not normal and something was going on. I told my manager at this point what was going on and he told me to go to the hospital. I left work and took myself to the hospital.

When I arrived at the George Dumont Hospital in Moncton I got out of my car and at this point my legs felt like they weighed a tonne. I began walking from the parking lot to the hospital and I was literally walking like a penguin. My legs we’re extremely heavy and I was taking baby steps. When I got to the small set of stairs leading from the parking lot to the walkway to the front doors I almost fell going up them. It was at that moment that I knew something was seriously wrong.

When I finally got to the Emergency Department it wasn’t long at all before I seen somebody. The trauma nurse asked me what was going on and she immediately took me into trauma. Within the first 15 minutes of being there they immediately hooked me up and did a cardiogram. One of the main things they were looking for was for stroke. I had so many tests done from blood tests, CT scans, numerous MRI’s and the doctors were no closer to finding out what was going on with me.

While I was in trauma I knew that I needed to find out for myself what was wrong with me. Within the first hour to two of being there I discovered Guillain Barre Syndrome also known as GBS. I knew right away that was what I had. When the doctor came in I told him that I believe I have Guillain Barre Syndrome. The doctor immediately told me no and that I don’t have all the symptoms for it. I told him yes I do and that everything points to this right now. He told me once again that no it’s not that.

I know doctors don’t like being told by the patient what they think it is but I knew with almost 100% certainty that that’s what I had. I worked in management for most of my life and problem-solving is one of the major things you do and I was good at it. I loved figuring out answers to a wide variety of problems. I once diagnosed my wife with a pheochromocytoma which is a rare tumor on the adrenal gland. She was hospitalized for a week and doctors had no idea what was going on with her. I informed them to do an MRI of the adrenal gland and sure enough that’s what she had. I knew that I was right on what I had and that I had to push further with the doctors as my health was declining fast. The doctor came in again we spoke about it but again was not open to the possibility that I very well could have Guillain Barre Syndrome. I knew that I had to keep at them. All that I knew at this point was that I was staying the night in trauma with no diagnosis or treatment in sight.

It was shortly before midnight and I had to go to washroom and I got out of bed. I couldn’t believe how weak and unstable I was. I was getting weaker and weaker by the minute. When I was walking down the hallway to the washroom that felt like miles away I was walking so slow. I’ve never been scared of falling in my life up until now. With every step I took forward I felt like I was going to fall. I almost did many times but I stayed close to the wall and tried to hold onto the handrail. I knew by the time I got to the washroom that I shouldn’t have went by myself. At this point I basically lost my hands I didn’t even know how I was gonna open the door but I managed somehow. When I got into the washroom I managed to undo my belt and I noticed at this moment I had lost my fingers. I couldn’t move them. I sat there thinking how am I going to hook my belt back up. I tried and tried but couldn’t. I had to try I hold my pants up while I walked back to trauma. I managed to get back to my bed and I realized how bad things were getting. All I was thinking in my head was all this time I could have been getting treatment instead my mobility and health continued to decline. I knew I wasn’t going to sleep much but hopefully i’ll have some answers tomorrow. How does a person sleep when they know just how bad things are getting? Lots of things start going through your mind but I just try to stay positive and hope that I’ll get answers and results tomorrow. We’ll see.