Day 30- The Faces of Guillain Barre: Derek's Story

Monday, May 30, 2016 0 Comments
My story begins in January of 2012. On around the 10th of January I started feeling like I was catching a little cold and was having swelling in my legs and face. I went to see my dr that Thursday and she gave me some lasicx and some antibiotics. Well I grabbed some cold meds and I went home and stayed in the bed all weekend. 

Monday I wasn't feeling any better so I called in sick and tried to get some rest. I got out of the bed to use the bathroom and I didn't have enough breath to walk to the bathroom and back to the bedroom so I had to sit on the couch and rest. I still couldn't breath so I had my father in law call the ambulance. They came and immediately started breathing treatments and quickly rushed me to the hospital. I figured they would give me some steroids and send me home but this is where the nightmare started. They said they were going to admit me and were gonna give me something to help me sleep because I haven't been able to sleep because of all the coughing. This was the 16th of January

The next thing I remember was waking up with my wife beside me saying that you've been really sick and she was so glad I was finally awake.  I tried to sit up but I couldn't move any part of my body. It was February 20th when I woke up the first time. The said that I had Infectious Bacterial bilateral pneumonia. Which is an infection in the lower lung in both lungs. I developed a blood clot while I was sedated so they couldn't put the boots and the circulatory pads on my legs in fear of the blood clot moving to my brain. I had foot fall as a result of that. I also developed A-Fib and Mersa. They were able to wake me up after they administered the tracheotomy. I was in ICU for 86 days and was finally able to go to the step-down unit after that. I was told that I would never have any use of my legs and feet and would probably be only able to use my left hand. 

Through the power of prayer and the elders of my church laying hands on me we proved that not to be true.

Well I left the hospital after a couple of months but was in a wheelchair. I still didn't know anything about CIDP at this point. I  was making tremendous strides in my recovery. I had to learn how to swallow, talk,stand,walk,use the bathroom, and just simple day to day stuff that we take for granted. After I had gained the strength in my legs enough to walk I started noticing that my feet were tingling and I couldn't feel my toes and my right arm and hand was numb and tingling a little. I  told the dr but they tried to say it was because I was diabetic. Before I went in the hospital I was never diabetic. By the way I forgot to mention that I was only 35 years old. 

Well the tingling was getting worse and the pain was unbearable. I would be laying in the bed in tears hurting so bad that I was wanting to just cut them off. I went to a place that said they specialize in neuropathy and would inject narcaine into my feet and legs. I was ignorant and hurting so bad that I went back about 5 or 6 times. The whole time I'm doing this I'm taking percocets, lyrica, Cymbalta and so much other stuff I can't remember. 

Finally I was referred to as neurologist named Dr Healy. He ordered nerve conduction study and within 20 minutes diagnosed me with CIDP. He had me immediately started doing IVIG treatments twice a month for over 9 months. They seemed to stop the spreading but hasn't done anything for the damage that was already done. 

I'm speaking just for myself when I say this. I've tried so many different kinds of medication and lotions and treatments till I could scream. I know what works for me but it might not be the trick for you.  I have a 100mg Fentynal pain patch, I take 900mgs of lyrica a day, I take 10/325mgs of percocets 4 times a day and I spend most of the day in the bed with a heating pad at my feet and my right hand under the covers. I have learned through therapy to keep my mind busy and to try to get out of the bed no matter how much I am hurting at least once a day. I have had to learn how to deal with the pain in my own way. It never stops, it never eases up except for about an hour after I take my pills. I'm 39 years old now and I've realized that God has given me another chance at life. While I was in my coma the dr told my wife on 3 separate occasion that she needs to be ready for the worst because there's nothing else they can do for me. To call my family in. I know that everyday is a blessing and we are not promised tomorrow. With this disease find your pain level, try to be at peace with it and keep looking for answers. I'm not accepting this as a way of life for the rest of my life. Somewhere somehow there's a cure for this.

I'll be praying for all of you and please keep me and my family in your prayers. Thanks for listening and I hope I didn't ramble on and was able to help.