Guillain Barre Syndrome got the best of me today! It’s now day 107 and I attempted to stand up with the bars against the wall from my wheelchair but I was not able to. Today was a day that was a bit disappointing to say the least. I thought that I would’ve been able to as my legs continue to get stronger. I’m happy that I have seen improvements mostly in my legs. I just really thought I could have today.
The reason I thought I could have is because before I did my plasma exchange treatment for five days at the Saint John Hospital, then five more days of IVIG treatments here in Fredericton I didn’t do much on the SCI fit machine. I seen improvements since my treatments in terms of strength, endurance and muscle fatigue was getting better.
When I first went on the SciFit for the very first time I was only doing 0.11 miles then I did 0.18 miles then I did 0.24 miles as my legs couldn’t really push the peddles down that much. This was extremely hard and I thought to myself, wow! This is hard, will I ever walk again and if so I have a very difficult journey ahead of me. This week after my treatments I did 1.0 miles on Tuesday in less than 15 minutes, on Wednesday I did 1.2 miles in 18 minutes and then on Thursday I did 1.5 miles in 22 minutes. I am happy to see these improvements but I was so sure I could have stood up only to realize how difficult it was. I am working my but off up here so hopefully soon. This is by far the hardest thing I’ve ever done as I retrain my whole body to work again. Hopefully I’ll be on my feet soon, it can’t come soon enough. Guillain Barre Syndrome really sucks!
While my parents were up today they wanted to see how much I’m able to move my legs now since last time. My legs are moving more now and I’m slowly recovering from Guillain Barre Syndrome. It’s hard to say for sure but the plasma exchange treatments and IVIG treatments must have helped. Hopefully my progress continues.
Today is the first day for more IVIG treatments for Guillain Barre Syndrome to help with my recovery. This Intravenous Immunoglobulin (IVIG) therapy can help people with weakened immune systems or other diseases fight off infections which include Guillain Barre Syndrome. I am scheduled all week for 5 treatments which will be about 3 hrs. each day over at the Fredericton Hospital. While I was in Moncton in the ICU I had received 3 rounds of IVIG each one being 5 day treatments each.
Last week I had received my plasma exchange treatments as the neurologist here in Fredericton thought it was the best option to help with my recovery from Guillain Barre Syndrome. The idea was to ensure that all the bad antibodies that could still be in my blood would be removed with the plasma exchange and then introduce good antibodies in my body with the IVIG.
This is day 1, 4 more to go! I’m really hoping to have good results with all these treatments that I’ve been getting to treat Guillain Barre Syndrome. Hoping for the best!
I sit here today disappointed, frustrated as this Guillain Barre Syndrome literally stole my life away from me. It’s Halloween and this is the first year I’m not going to be home taking the kids out trick or treating. I’m missing out on so much. I love taking the kids out as they enjoy it so much. My wife and I take them out every year. It’s something we’ve always done, I love seeing the smile’s and enjoyment they get from it. I want my life back, I want to see my kids again, I want my life back to normal.
I’m not only missing Halloween this year but I missed my sons birthday too. My son Caleb just turned nine a few days ago and I wasn’t there to celebrate with him. I know there’s many more memories and moments that I will be missing as a result of Guillain Barre Syndrome.
I stay in touch with my kids through Facebook video chat but I just wish I was there. It’s the best I can do for now but it’s not the same. I miss things so much, I miss giving the kids a hug and kiss every morning before going to school. I miss the times we spend together cuddled up in bed watching a movie and having some chips or playing a game. Guillain Barre Syndrome has taken away so much for me not just my health but my family.
I know Cheyenne is taking care of the kids, they’re happy doing their sports and activities, I just wish I was there too. I’m hoping I’ll be home by Christmas and I know it’s a long shot but I’m sure as hell going to try. I love Christmas and I want to be there for my kids. I’m hoping Guillain Barre doesn’t take that away too.
Well it’s official I have just finished my last of my Guillain Barre Syndrome Plasmapheresis treatments today at the Saint John Regional Hospital. The nurses in the Plasmapheresis Department were amazing! I’ve been here for 5 days now for my plasma exchange treatments and they definitely made me feel comfortable during my stay here. I even got a shave and shampoo while getting my treatment yesterday buy two amazing nurses. They make you feel comfortable and shared a few laughs. I know one thing live life to the fullest as in a split second things can be taken away. I’m hoping that these Plasmapheresis treatments will help towards my recovery from Guillain Barre Syndrome and speed up healing my nerves so that I can get my life back.
The nursing staff and the doctors at the Moncton Hospital, the Saint John Hospital specifically the Plasmapheresis Department and the staff at the Stan Cassidy Rehab Centre in Fredericton have made this a little easier despite all the challenges I have faced. I’m heading back to Fredericton today at 3 PM to go back to rehab and further IVIG treatments. I’m hoping that these two treatments here will do the trick to get me back on my feet despite the poor test results I received last Wednesday from the nerve conduction test.
The ambulance has just dropped me back off at The Stan Cassidy Rehabilitation Centre in Fredericton. I am looking forward to resuming my rehab tomorrow and an additional 5 days of IVIG treatments here soon. I just have to stay positive, continue working out as hard as I do and pushing my body to fight through this. I have to stay hopeful that all these treatments and rehab will work and help me beat Guillain Barre Syndrome. One day at a time…
A big happy birthday goes to my boy Caleb who turns nine today. I hope you enjoy your ice cream cake, I wish I could be there with you. Big hugs and kisses bud enjoy your day!
I’m happy and sad at the same time as it’s my son’s birthday as he turns 9 years old today. These are the moments that Guillain Barre Syndrome has taken away from me. I know I can’t be there to celebrate his birthday with him but I know he’s enjoying his special day. I bought Vitos Pizza for his birthday for everyone and an ice cream cake from Dairy Queen. He loved it! He was also quite excited to learn he has 3 days of surprises coming to him in the mail. I’m happy he’s happy just sad I wasn’t able to be there with him.
My arms are beginning to move for a little while now which is a great sign for my recovery from GBS. While my parents were up here visiting for the day I was able to show them my progress. I never thought I would see the day with my arms started moving more. I could only do a little bit as muscle fatigue kicks in and gravity. Once my arm goes down so far then gravity kicks in and I’m unable to hold it. This is great news however but still a very long road ahead. Hoping these plasma exchange treatments that I am receiving will give me the boost I need to recover from Guillain Barre syndrome a little faster.
Well it’s another day for my plasma exchange treatment for Guillain Barre Syndrome up here in Saint John. I have to say the food up here at the hospital is a whole other story, wow! As expected I didn’t get much sleep here. I so miss my air mattress in Fredericton, I was in discomfort all night and had to be turned every hour. Hoping I can get an air mattress while I’m up here as that’s what I require for now or it’s going to be a long 5 days.
My parents came up to visit for the day while I’m up here getting my plasma exchange treatments. They were able to go in the room while I was getting my treatment. The treatment today didn’t take as long as it did the day before. The nurse was able to run the machine faster today. After the treatment was done my dad was able to hold the bag of discarded plasma from my blood. The bag itself wait about 10 pounds. The nurse put it on my chest so I could see for myself since I’m unable to use my hands and arms. I was really surprised how much that bag weighed.
My parents stayed for the day I took a picture of the central line they put in my neck so I could see. My neck was feeling pretty stiff today. Three more treatments then heading back to Fredericton.
Overall was a good day! We talked for a while and my parents were are able to see my progress so far. For supper I had chili and a sandwich from Tim Hortons thanks to my parents. Thank God as the food up here is pretty horrible. Another day done and round three tomorrow morning!
Well it’s morning and today is the day I get my first plasma exchange treatment for Guillain Barre Syndrome up here at the Saint John Regional Hospital. As expected I didn’t get much sleep last night. This is by far the loudest, noisiest floor of any hospital I’ve been in so far. I’ve just finished breakfast and now I just lay here waiting for the nurses to inform me when I’ll be heading down for my plasma exchange treatment.
The nurses just came in as they received a call from the Plasmapheresis department to check my veins. The nurse from that department wanted to make sure there will be no issues finding a vein for an IV line. After checking and having further conversations with that department they decided that a central line will be required. This was not the news I was looking for. I am going to have to have another procedure done before getting my plasma exchange treatment. They will be inserting an Internal Jugular Central Line before heading over for my treatment. This is the exact procedure I did not want. Now I’m getting nervous about this whole thing.
It’s time! The nurses are here to take me down to radiology to have my central line inserted. I’m starting to get a little nervous now, anxiety, this I did not want. I was hoping they could just do it with an IV line. Now i’m heading down to get it done.
I’m now down in the Radiology Department and they’ve just brought me in the room to prep me for the procedure. I’m getting more nervous by the minute. They now have just transferred me onto the table with a big X-ray machine over my head. The nurses there were very informative and explained what they were going to do before hand. It made me feel a little better but at the same time I couldn’t shake still being nervous about this. My anxiety was up, my heart beat was up and my breathing. They started putting iodine all over my chest and neck. They began draping me all over only leaving the exposed area open where my jugular was to place the line. The nurses have me all prepped and now we’re just waiting for the Radiologist to come in to insert the line.
The Radiologist arrived and we had a short conversation before he started doing the procedure. He wanted to hear my story and how my recovery was going so far from Guillain Barre Syndrome. Like always people are always amazed on what I’ve been through so far and the severity of my case. Every once in a while as I tell my story and I think about what I’ve been through tears comes to my eyes. Today was one of those days as my emotions got the best of me. After our talk he then explained what exactly he was going to do. He had a very calm voice which helped reassure me and make me a little more relaxed. He said before he did anything he’ll tell me exactly what it was and what to expect.
Now the procedure was about to begin. My head his turned to the left as I lay on the table with the big x-ray machine over my head. The freaky thing about this whole thing is I’m literally watching the whole procedure on the x-ray machine screen which was about 10 feet long by 5 feet high. The radiologist informs me that he is now going to freeze the area. After a short time to allow the area to freeze now comes the next step, inserting the central line. He informs me that when he goes ahead to do it i’m going to feel some pressure. He then starts inserting the line after making a few measurements first. I feel the pressure and I see the thin line going down towards my heart. That was the weirdest thing seeing the procedure in front of my own eyes on the screen but neat at the same time. Now my plasma exchange treatment comes next I just have to wait for my call.
I went back to my room and I finally got the call that they were ready in the Plasmapheresis department for my first of five treatments. The porters brought me up and I was quickly greeted when I arrived. The nurse there was amazing very friendly and made you feel at ease. She started asking me questions verifying information she received and to my surprise the information was incorrect. They had me down as a 23-year-old male with myasthenia gravis. I was like no, I’m a 41 year old male with Guillain Barre Syndrome. As soon as I said that she said that makes sense as she’s never seen someone as in bad of shape as I was with myasthenia gravis.
After getting that all sorted out she explained the whole procedure and what to expect. She hooked me up to the machine and it started. A good way to explain plasma exchange is like going for an oil change. This ensures no bad antibodies are not still lurking around in my body that could still be attacking my nerves. It took almost 4 hours for the first treatment. You don’t feel a thing really and the only discomfort I had was from the area where the central line was placed in my jugular and my neck being stiff. This was my first round of plasma exchange treatment for Guillain Barre Syndrome, 4 more rounds to go hope it works!
Well looks like I’m heading to the Saint John Hospital here soon for my plasma exchange treatment. My ambulance ride will be here soon by 5Pm. Everything is all packed up and ready to go. I’ve seen too many hospitals lately, hopefully this is the last one for a while. I’m looking forward to receiving my plasma exchange treatment now as perhaps this will help me get one step closer to recovering from Guillain Barre Syndrome.
View outside the window at the Saint John Regional Hospital where I will be getting my plasma exchange treatment.
Well I’ve just arrived at the Saint John Hospital. I can’t get over how big the hospital is. I’m glad to be here I just need to get used to new hospital, new nurses and used to hospital food again. The food while I was in Moncton was not bad it was pretty good actually. I only arrived here late so I missed supper so I looks like i’ll be getting Pizza Delight thanks to Cheyenne.
My pizza arrived and it was delicious I just wish that eventually i’ll be able to feed myself once again. It’s more enjoying when you can do it yourself. I’ve been getting fed now by someone else since September 17th, 2019 as I still don’t have the ability to use my hands and arms yet. I’m really hoping that this next treatment that begins tomorrow will help me recover faster from this horrible life-changing illness called Guillain Barre Syndrome.
I don’t think I’ll be getting much sleep tonight as they have me on the stroke floor here at the hospital. The buzzers have been going off nonstop since I’ve been here and my room is literally right outside the nurses station. All I hear are phone calls, buzzers going off, loud talking an non stop codes going off over the intercoms. This is a very busy floor… On top of this i’m laying here thinking about tomorrow when I start my first plasma exchange treatment. I’m really hoping that they can get this done using an IV line. I really don’t want to have another procedure done and get another PICC line put in. A PICC line called Peripherally inserted central catheter is thin, long, soft tube inserted into my arm that goes straight to the entrance to my heart. I really don’t want to get another one. I’m hoping they can find my veins tomorrow as all the nurses say I’m a hard poke. Besides thinking about this I’m thinking about this whole new treatment I’m about to go through. A person can’t help but be a little nervous to the unknown new procedure I’ve never done before.
Well i’m going to try to get some sleep now which I know will be a challenge. I’m kind of second-guessing my decision to get this done but I’m here now I can’t back out of it and I need to get better. I’m really hoping that tomorrow will help make my recovery from Guillain Barre Syndrome a little faster. Only time will tell.
