I will never forget the 27th june 2011 It was the last day I breathed without a Tracheostomy and GBS left me completely paralyzed and with double vision. I was in ICU brisbane by 10am on that day, the night before nothing was wrong I even drove the last 160km drive of my live from brisbane to gold coast and back home then to south brisbane slacks creek.By about 9pm that night there were no hospital beds at either gold coast or brisbane.I had a paralized diaphram and vocal cords and so a tracheostomy was done to save my life/to breath on a respirator.I was unconsious by this stage and transported by ambulance 4 hrs by road with a police escort to Ipswich hospital.I drifted in and out of being awake with crazy hallucinations I stayed at Ipswich hospital for about 3 weeks before being brought back to Robina ICU on the Gold Coast.The first 3 months on the respirator were hell I couldnt talk as the tracheostomy cuff was inflated I couldnt move a single muscle except slightly raise my shoulders and for the first 5 weeks or so I had double vision which frightened me no end.By the 6 month mark in ICU I could bend my elbows and slightly lift my arms .I was treated with 3 rounds of immunogoblin but my recovery was slow. I had daily Physio doing range of motion tilt table and breathing exercises I had the trachey cuff deflated by now and could talk with a passey muir valve fitted and now could eat.Before I had a nasogastric tube for liquid feeds. After 12 months of ICU I was transferred into H1East ward, I got off the ventilator at this point but to this day I have bilateral paralized vocal cords so I cannot breath without a trachy.I spent another 12 months in H1 East Ward,but never was able to walk, my arms continued to improve and just before discharge I could elevate m wrists a major achievement.I now live in St Andrews Aged Care due to my trachey I have an electric wheelchair I can now move my fingers but have both hands affected by a claw hand deformity.I type with my thumb which hasnt been affected.This year coming I am going to see a hand surgeon who hopefully can release my fingers
My wife came home from the hospital on Jan 22, 2011 the day before from repair surgery to her esophagus. Getting ready to leave the hospital she fell down in her room. She convinced the doctors to let her go home. On the way home she did not feel good but did not want to go back. The next day was find. Then she took a nap and woke up with nothing below the neck. 4 or 5 weeks in hospital before the right diagnosis. She has regained most movement above the Knees and after several ankle and foot surgeries with braces can help transfer herself.
She is fighting deep depression, and extreme pain. She can not eat and at this point no hope for eating. Next surgery may be on her Jaws as her mouth doesn’t open wide enough for a toothbrush. She has one vocal chord that is very stretched so is a super whisper and some words you can not understand .
She works very hard every day on all the exercises to gain a little bit of flexibility. We have a nurse 4 days a week.
With all that day after day doctors, nurses and other people always comment on how nice she is and how caring she is to other people. As a husband around her 24 hours a day, I am constantly amazed by her and humbled that she allows me to care for her.
Thank You for sharing. I’m sure you are very similar and wish you continued improvement.
You are the first person whom I have known of to have a worse GBS experience than mhy own. I was released from the hospital near;ly nine years ago. I am able to breath without a trach, however labored it may be. The pain is u speakable but it is "fatigue" that I hate the most. It is fatigue that stole my ability to work, to write music, to manage my daily routine. I m currently living with my mother and I know that I will one day be in a similar care facilty as you are. I have always said that the one consistency with GBS is its inconsistency. No two days are the same; No two cases are the same. Yet your description is frighteningly close to my own. The 9 weeks in which I was in a coma- or unconcious- was one continuous hallucination; a parallel life that was influenced by my fears, the television that waqs left on to 24 hour news and the people who surrounded me. A year after I was released from hispoital I returned to the ICU to meet and thank the people there. I was terribly shocked to learjn that my respiratory therapist was the man who flew the chopper each time I wasa evacuated to another medical facility. I have attempted to write about these hallucinations- the portion specifically is in a blog here on this very site- but I wish the very best for you. I have an understanding of what you are enduring. You will find here on this site many people who are "new" to this illness; you will find many whol are, from your stand point, lucky and you will find a tremendous amount of fellowship and support, though the support is sadly not enough. The key is to make your life have value. You asre able to write; perhaps that is something you can do. Perhaps you can read. (I am able to do this by closing one eye since double vision remains an issue for me as well.) If you wanty cameraderie I am here for you. I just "celebrated" my ninth year. The movelty has worn off and I am aware of "permanace." I've accepted that all that can be done has been done and as you work through the same stages I wish for you the best of luck. I hope that at the very least you end up as functional as I.
New York, USA