So Here is my Story

My story starts back in 2003 when I had weight loss surgery. I was morbidly obese with tons of medical problems. In two years, I lost over 200 pounds. Zoom forward 8 years, I had regained about 50 pounds and was having severe acid reflux. After an endoscopy, doctor found a really bad hernia which had distorted my gastric sleeve. So in February 2011, I scheduled a gastric revision and hernia repair. Due to complications of a leak in the revised gastric sleeve, I started down this strange road of bad health.

Due to the leak in my gastric sleeve, I was no allowed any nutrition or liquids for 30 days. I was put in the hospital with a central line to "feed" me liquid nutrition for 35 days. Once released to go home, unbeknownst to me, my body was working against me by causing me severe nausea when trying to eat. I stuck mostly with soups, but was not getting enough nutrition for survival. One week in July, I got a very bad case of diarrhea. I figured I was just nervous because I had a job interview that week. This lasted the entire week. Before I could make a follow-up with my doctor, I began having leg cramps. I compare them to restless leg syndrome...constant aches that steadily got worse and more frequent.

Over a 1 week period, it got so I was getting in a tub of hot water 3 or 4 times a night just to stop the pains in my legs. Nothing else worked, no drugs potassium pills, nothing….but the hot water which didn’t last but a couple of hours at most. I began to notice the weakness also around this time. It started getting harder and harder to get out of the tub. Then one Friday evening, I noticed that I could not button my shirt. Simple function of butting a shirt and I could not make my fingers push and pull a button through the button hole. I also noticed that I could not touch the pads of my fingers together. My hands were not working right.

By that Sunday morning, my legs were so weak, I could lift myself out of the tub, walk up a four step stair flight, or walk without help. I had my dad take me to the hospital, where I luckily got a doctor who recognized what was happening was not normal. They admitted me to the Neurology floor. That night the head of Neurology happened to be the doctor on call and she diagnosed me within 12 hours of arriving. After eliminating everything else with an MRI an spinal tap, I was told about GBS. I had never ever heard of Guillain Barre Syndrome in my life. I hop on my iPad and googled. A simple wiki was my first stop (https://en.wikipedia.org/wiki/Guillain%E2%80%93Barr%C3%A9_syndrome). I think I read every website I could find of every treatment and symptom and prognosis of recovery on the internet that day. By the time my treatments began, I could no longer walk to stand on my own. I needed help with most simple things.

My doctor recommended plasmapheresis for me. I read that many folks have done IVIg therapy but the plasma exchange was my fix. After each treatment over 5 days, I slowly began to feel better. The leg cramps got less and less. I still couldn’t walk, but improving. After almost 2 weeks in the hospital, I was scheduled to be released after my last treatment. I considered myself lucky that I have not had the breathing problems many people did. I guess I spoke to soon on that because when the nurse removed my central line that was used for the plasmapheresis, I began having trouble breathing. Within a very short time, I was admitted to ICU on an assisted breathing machine. I found out later it was just a type of cpap machine. After 3 days, I was breathing better but on oxygen. After 10 more days, I was allowed to go home in a wheelchair. My hospital stay was about a month.

I was lucky in many many ways. I moved in with my parents. My mom is an occupational therapist so she had a lot of items I used during the next several weeks and months to recover. I also did PT for several weeks because I wanted to be walking when I started my new job in September that year. And I did, I was on a walker, but walking none the less. After all this and all my research on my own, I believe the GBS happened because my immune system was non-existence due to my complications from the gastric revision. Without my immune system being able to fight the gastro virus, GBS took hold of my body without any resistance.

I would say my total recover took about a year. I still have some problems on my left side (the most affected) with cramps, muscle spasms, and weakness. I don’t run, but walk regularly. I still watch the ground so I don’t trip over anything. But I would say that I am 95% myself before GBS. The year 2011, is not one of my best. I almost died in July and I now know that not being able to breathe is probably my greatest fear. Scary stuff. So to those of you still early on, hang in there. Talk to people about your fears and concerns. Use the site to talk to anyone, since we’ve all been there, you will be able to find an ear and shoulder.

Thanks for sharing your story, LadyOz. I am glad you made it through. :)

Thankyou for sharing. I will be praying for you and all members on this site. You are an amazing woman.