Day 11- The Faces of Guillain Barre: Shawn's Story

Wednesday, May 11, 2016 0 Comments
My name is Timothy but I go by Shawn. I'm 27 years old and live in Douglasville Georgia..I have 2 daughters and a son on the way. I was diagnosed with cidp back sometime in the summer of 2015. 

Several months after being in the hospital from October 6 2014- Dec 30 2014.. My gbs story begins when I was at work early in the morning... I'd say 6 am. I just got to work and suddenly had a cold, tingling almost like when a limb falls asleep feeling in both hands, arms, feet, and legs. I wasn't worried about it... it was kinda cold and I was wearing shorts. So I thought maybe I needed to warm up inside. Well as the day went on it got worse and I started feeling really crappy... Almost like the flu but with no feaver.

 I left work early and asked my dad to pick me up to drive me home because I felt so bad I thought I could be a danger driving... He convinced me to go to the immediate care. The immediate care told me I had the flu and that the tingling cold sensation was a circulation problem and I needed to see a specialist? Which made no sense to me. My blood pressure was fine and O2 I was fine at that point so my circulation should have been fine. This was a Friday by the way. By the end of the day I was walking like a stiff old man. I just felt weak... Could have been the flu. By the next morning I could hardly walk and the tingling had gotten worse and painful. I my started to difficult to breathe and I was concerned the medicine they have me wasn't working.nI went back to the hospital this time. They ran test and did X-rays of my chest and said that I had double pneumonia and that's why it was difficult to breathe and why I was weak. 

Even though that didn't explain the tingling/ weakness that now was now moving up my back from my legs and into my shoulders from my arms. I couldn't feel myself when I went to the bathroom...really weird. The doctors saw fluid in my lungs but what they didn't see was my lungs where actually collapsing and that's why I was having trouble breathing. After I went home that night I was trying to walk to see my newborn daughter Alaina and collapse from my weight into the floor. 

I should have went to the hospital that night but didn't. So now I cant walk it's difficult to breathe but not life threatening. I went to sleep thinking it'll be better in the morning. I had to sleep in a chair because when I laid down it got really hard to breathe. I honestly thought that I had pneumonia from this new machine I was using for sleep apnea. I thought maybe I didn't clean it well and my lungs got infected by it.

I wake up it's now Sunday and symptoms have gotten worse... Breathing is so hard I actually get scared ask my fiance to call 911 to take me to the hospital. We had vehicles and people... But I couldn't put any weight on my legs and we couldn't get me into the car. EMT's came out and acted like they didn't believe me when I said I can't put any weight on my legs without falling. Almost like it was a waste for them to come out and transport me. They said we can transport you if your like or we can put you in your car and your family can drive you. Which basically sounded to me like we don't wanna waste our time we could be helping someone else that needs it. I went in my sisters vehicle. 

When I got to the hospital all my vitals was looking very bad-high blood preaure high heart rate and my O2 was 68% fluctuating to 80% and that is what made them decide to keep me over night. Still not totally sure why I'm looking function in my body. They put me in a room for observation overnight and things just got worse. It got so hard to breathe I couldn't talk without catching my breath every 2 words. That caused concern to my nurse and they brought multiple doctors and nurse's in to talk to me and hear my story so they could figure this out.

They checked my reflexes and they were both absent. I don't know what that means but that's when the hospital started taking me serious and didn't treat me like I was full of shit. They moved me to the ICU- I guess to watch me closer. I felt like I was getting worse by the minute. Basically  felt like they had no clue and was just watching me die hoping for a obvious sign in the morning, now Monday, a nusre named Pam came in for her shift. I couldn't talk at this point and could only move my hands and head and eyes. She spoke to my sister and she told me right off the back she believed I had gbs...I was thinking wtf... You guys are just making shit up know. She said they were going to do a Spinal Tap to test for something but that would confirm it. They tested me and sure as shit I had whatever they were looking for and they knew what it was... She was so nice. She told me she had seen it before and recognized it immediately. Something I don't no how many doctors didn't do. I honestly believe she was put in my path to save my life. If it wasn't for her coming in it coulda been a lot worse... 

I was worrying about is this contagious because I have a 3 month old baby that I've been taking care of and coming in contact with. All I could think is please don't let her get sick... Kill me and save her. But it wasn't contagious and she was perfectly fine. They flew via helicopter that day Monday to kennestone in Atlanta to begin plasma pharesis. I remember getting there and maybe a hour after getting there it so hard to breathe. I was taking 60+ breathes minute and I got spit sucked into my lungs because I couldn't swallow so I was fighting trying to recover my breaths but I don't happen. They intubated me there and after that I don't know what happened for I think a week to 10 days.

 I had crazy dreams and bits and pieces of memory but Nothing I can put togther. I was told I was in a coma. I had been trached...tubes directly in the throat. The first time I woke up that I can remember my while family was there. I saw my brother and spelled out on the board that I wanted to go for a walk with him. I didn't know I was fully paralysed attached to a ventilator. I was so mad when they said I can't go for a walk. I thought they just wouldn't let me. My mother explained to me what happened and took a picture of me and showed it to me... my vision was so blurry and double vision but I could make the picture out and thought holy shit... I'm in trouble. My family was great!! I was never alone... There was always someone sleeping there staying with me, usually my fiance, sister Victoria, or my dad on his off days.

I really feel bad for people that get this that don't have family to stay with them. I had horrible anxiety and panic attacks I couldn't imagine without them. 

I was in ICU at Kennestone for 19 days and them after that I was transfered to Shepard Center in Atlanta for PT and OT... I Was still paralysed and on a vent, no improvement other than being able to move my head to spell out words and sentences. They used a board with the alphabet on it and I would stake my head when they got to the letter I needed to speak what I was trying to say. Most of the time I couldn't see the letter from the  double blurry vision I just had the board memorized so I kenw when to stake my head. 

Its been two months now and I just got out of icu and I finally able to see my now 5 month old new baby girl. I cryed so hard when I saw her. She had changed so much in the 2 months. She didn't recognize me completely, she just stared like I think I know you but not sure. They would bring her to my face to kiss her but I couldn't pucker my lips. I missed her so much. I thought she thought I had abandoned her or something. One day I'm there and now I'm not.

My 2 girl's and fiance is all I could think about. I missed them so much and a very much enjoyed being a dad and I missed that as well. They are my inspiration to push through everything now and everything then. I could see if I dodnt have them it could have been easy to just have given up when my respiratory system started failing in the beginning. After about 2 months and a week being on the vent I was ready to come off. The process took about 3-4 days but I did it. When I came off and started eating real good my strength came back quick-
Everyday it was something new. I was scheduled to leave December 30 and I was determined to leave being able to take steps at least before I left.. Well I tried really hard but wasn't able to make it. I did stand and support my weight for a few seconds but didn't walk. I left December 30 and went home for the first time. I had missed my daughters first Halloween, Thanksgiving, my birthday, but I was able to come home for Christmas but had to go back. I started OT and PT at my house. My therapist came 5 days a week. I asked when could I expect to start walking and she said maybe in 2 months... I did it in 10 days. I never worked so hard in my life but I was determined... Not to mention my wheel chair didn't fit down my hallway and I was tired of going to my gym to take showers. 

So it's now January I can take steps with a walker but I still mostly use a wheelchair..I started walking 28th a cane sometime in March. By the summer I wasn't getting any better it's like my healing just came to a stop. My neurologist did some test on me. I forgot what it's called (Nerve Conduction Test). He shoved needle in my legs and attached electrodes and shock me to see if it reached the other electrode was some sort of nerve test. I didn't do very well. He told me it was safe to say I have CIDP. I guess the way it started in both hands and legs at the same time plus not improving enough I guess. I like to think I don't have cidp and that I don't have a chance for it to come back but only time will tell.

I was able to go back to work I'm October almost one year exactly to the date-only part time like 8-12 hours a week. But now I'm back full time and I have my old job back. Im a manger at pizza hut-it's a very demanding job. My GM told me when I got out of the hospital and went to visit that I could have my old job back whenever I could come back. He kept his word and have me the position back. A new company bought the place and I'm going into to be getting paid salary after my probationary period.

 I learned a lot from this illness- Take things slow. Life is here now but can be gone in a blink of an eye, cherish it! Every minute! Also learned you have to stay positive even under really bad times. Your mental health plays a big roll on your physical health! I trully believe that!

 I'm also running 3-4 times a week about 25-35 min each time currently. 

 I didnt mention having to do with sudden heart rate drops from 140 bpm to 12 bpm instantly while I was awake. Seeing a man who I think could have been my guardian Angel come into the room while I was getting ready to intubated when my respiratory was starting to failing. I talked to my family about the people that came in the room they said no man came in just female nurse's... saw him I thought he was there to do chest compressions if need be. My blood pressure was crazy high 260/190 my heart rate was in the 170bpm and my respiratory was in the 60's..I have some medical teaing so I always paid attention to the monitor and understood what everything was. When I saw those rates I new I could have a stroke heart attack or my heart just stop-they will sometimes have a large man who can do chest compressions well come in to assists and I thought that's why he was there...but no man came in according to my family. I wasn't that medicated to be having halucinations yet so in sure of what I saw.