Friday, January 2, 2015

Notes on GBS Experience

These are just some memories about when I started first showing symptoms of GBS on our vacation in Hawaii...

I kind of have a summary of my ordeal on my website if you would like to read it. It mostly begins for when I had photos and is about the rehab: http://www.turnerstokens .com/ 2012/04/my-gbs-experience-hospital-to-half.html

Basically I had a stomach bug in early May 2009 that triggered it and by May 18th I was in the hospital because I could no longer walk. (Luckily I didn't get bad until after I returned from our trip to Hawaii! I started to have symptoms in Hawaii but nothing too major.)

I was 26. I had the stomach bug from about May 1-7 and I was chugging Gatorade and chicken soup like no tomorrow. We had plans to leave for Hawaii on the 8th-16th if I remember right. On May 7th I was finally feeling good to go and we drove to Houston to leave for Hawaii the next day.

After a day or two into our trip, it started in my mouth; my tongue went numb (I had been eating more sushi and more local food so I thought maybe I got into something I was allergic to. I was also using a different toothpaste so I thought maybe that was freaking my mouth out.) I had been having some chronic back pain for the past 6 months and then one morning I woke up and went to brush my teeth and discovered I could bend over the sink no problem and no pain at all. I was practically cheering! Then we ended up hitting up a rocky beach area I ended up breaking my toe and I couldn't even feeling anything (I thought it was just bruised.) One evening before going out I was getting dressed and spotted myself in the mirror. My stomach was rather... poochy. I tried to suck it in and couldn't get it to budge. Guess I had been eating too much lately. (My stomach muscles had become paralyzed so there was no muscle to tighten.) Then my shoulders started to go (I had been in the sun all day and gotten a bad sun burn so I thought it was just the sun burn making me tired and stiff to move.) By the end of our trip to Hawaii I couldn't carry my luggage. I thought it was just general exhaustion/jet lag and that I just needed a day to recover. We boarded the plane to head home for a 9 hour flight and I was feeling sluggish. At hour 7 I started to feel antsy and claustrophobic. I felt like I REALLY needed to get up and walk around. When I stood, I felt like I was drunk and I kind of stumbled down the aisle, just trying to move around a bit. I could still walk, I was just stumbling a little here and there. When we got off the plane my father was there to pick us up. He helped carry my bags to the car and I kind of had to stop here and there to catch my breath as we walked out from the terminal.

Finally we got home to my parents house and decided to let me rest up for a day before heading back home to Austin. Climbing the stairs to my bedroom was a chore, but it just felt like I had overdone it with the travel. The next morning we loaded up the car and headed back to Austin, I slept most of the way there and crashed for the day once we got to my bed. In the middle of the night I woke up finding it a little hard to breath. I have asthma and I am allergic to cats (we have 2 but when I am around them for a while, the allergies stop) so I figured just being away from the cats for a week meant I just needed to get used to them again. So I got up and walked around the living room of our apartment for a short bit until it felt like my breathing was a little more controlled. It just felt like someone was sitting on my chest really.
I had a physical therapy session scheduled for that Monday and figured I would ask what was up. I thought maybe the back pain I had might have turned into a pinched nerve causing me to stumble around. So I went in to the PT Dr Office on Monday morning and once the Dr saw me walking and what my gait looked like he sent me across the street to my general Dr. The did the reflex test for the knees and elbow and when I had no response they scheduled me for an MRI that afternoon. By this time I was kind of freaking out, but I tend to just kind of swallow stuff like this and push through. I drove home (a very stupid choice but I had no clue how fast GBS could hit) and I waited to go for the MRI. I started to feel more unsure about my ability to drive and asked my husband to take me to the Radiology center. My husband drove me and by the time we got to the parking lot and parked, I had to have him help me out of the car and kind of lean on him to walk to the doors. By this time I was stopping every 5 steps feeling out of breath. I went through the MRI and headed home for the night.
My husband helped me shower, both because I had a hard time physically doing that and because he wanted to make sure I didn't fall. Then we settled in for bed. I woke up having it feel hard to breath and moved to get out of bed. I hit the ground and couldn't pull myself up. I yelled to wake my husband up and he helped me back up to lean against the bed. We decided to hit the ER rather than wait for the MRI results. My trouble breathing was just alarming us a bit. He helped me get dressed and stumble my way out to the car and we drove to a local ER, thankfully not too far from us. He ran inside and got a wheelchair and I was able to be moved much more easily. Once in the room my husband helped me onto the bed and I still remember trying to shuffle my legs under the covers. The nurse gave me a breathing treatment to try and help with what I thought was an asthma attack. (it was just my lungs starting to shut down.)

While we waited, I texted my parents what was going on. My mother has a friend that is a nurse and she immediately told us to ask the nurses at the ER to check to see if it was Guillain Barre. She knew I had the stomach bug earlier that month and had recognized the symptoms. The nurse agreed that is what they were thinking it was.

I was up all night getting tons of tests done, CT, more MRI, and then finally a Spinal Tap. Once the Spinal Tap was done the elevated protein count confirmed it was GBS. From there it was a waiting game to just let things run its course. I remember the next day I started to loose my ability to swallow so they put the feeding tube in. The next day I think is when they put the respirator on me. Once I could no longer talk I had to start using a notepad to communicate though my hands we starting to go so the scribbles that were left required a bit of guesswork from nurses and my family. I think I was on it for 3 days before my health started to turn around. I am a bit fuzzy on it, but I think they began me on the IVIG treatment the moment my health started on the upswing and I think I was on it for 3 days.  I think I bounced around between regular and ICU departments a lot during my stay. The hospital really pushed me with the physical therapy, the moment I was able to even remotely start movement in my arms and hands they were working to get me moving. Once I was on the upswing, lots of student nurses would come by and see me and talk to me about what I had and how I felt leading up to this. Like just about every day that I was able to talk they had a group of students come by. Finally after about 2 -3 weeks in the hospital I was transferred to the rehab.

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