New to this but need reassurance
AnonymousDecember 26, 2006 at 6:49 pm
My husband (Vince) was diagnosed with GB Feb. 8, 2006. Within eight hours he was completely paralized and on a ventilator. They gave us 24 hours at that time for him to live. Well he was ICU at two different hospitals for a month then he went to a rehabilation for three months then to Shepherd Spinal Center here in Atlanta. While he has in the rehabilitation hospital they called me back up there giving him one hour to live because his blood pressure dropped, he had 105.0 fever and a staff infection. Say the least he beat all of this and at home. He came home in June of 2006. He is still a quadroplegic. He has therapy three times a week and got to stand for the first time the day before Christmas with a machine. How does a mother with two children deal with this? Going from a family with everything to a family with a mother and father that don’t work due to I had to quit work and take care of him or put him in a nursing home. Does it get better?
AnonymousDecember 26, 2006 at 7:01 pm
I am so sorry to hear about your husband Vince and what you are all going through. He has a very serious case obviously, maybe the most severe that I have heard of.
Since you live in or near Atlanta the first thing I recommend is that you contact the liaison there, William Robbins (Brobbins@fasttitlepawn.com) he will be able to help you locally and offer you support. If you email him he can give you his phone number.
My email is (firstname.lastname@example.org) and I am available anytime for anything, I am the liaison here in Ann Arbor, Michigan but I am available to help anytime if needed.
Also contact the foundation 610-667-0131 and they can send you our patient package which has alot of very good information. Get ahold of me by email and give me some more information about your situation, then I can recommend places for help with just about anything: prescription assistance etc etc.
You guys are in my thoughts and prayers. Contact me anytime.
AnonymousDecember 26, 2006 at 10:08 pm
My fiance Ben also had a very severe case similar to your husband’s and exactly one year before his. Ben was hospitalized on February 9, 2005 and was ventilated within 24 hours. He had a WBC count of 222,000, and I almost watched him die when his blood pressure dropped suddenly. Thank God, they were able to stabilize him and bring him back to me. He had a fever between 100-104 degrees for two weeks and was being tested for a staph infection (his neurologist believes he did test positive for the staph infection, but I’ve never looked through his records to confirm that). On top of all that, he had an allergic reaction to the antibiotics used to treat the infection (Vancomycin and Maxopene) and was left to fight it on his own. He also had pneumonia in one lung. The three weeks he was in CCU was the most frightening time in my life.
Ben’s doctors predicted he would have to spend 1-3 years in a wheelchair, if he survived his illness at all. I don’t know how he did it, but he ended up walking out of the rehab hospital five weeks later.
Unfortunately for you and your husband, GBS effects everyone differently, so there’s no way to tell how long Vince will be in the state he’s in. However, I can tell you that I’ve met people who were in similar situations to yours, and there is hope at the end of the rainbow. We just don’t know how long that rainbow is.
Good luck and best wishes to your family. I wish I were there to help you out. I really feel for you having two children to look after along with your hubby. Hopefully, someone will be along later to offer you some advice on that subject.
AnonymousDecember 26, 2006 at 11:00 pm
I just want to echo what Shannon said. I was in a coma and on a vent within 48 hours of my first symptoms. They told my family they didnt know if i would make it or if i would have brain damage when i came out of the coma (not sure why they thought that as it isnt normally a side effect of GBS) I was totally paralysed including being unable to open my eyes. My family were told recovery could take anywhere from 3-24 months. I spent 4 weeks IN ICU. I went from being able to do nothing at all for myself to walking out of hospital unaided after 7 weeks. I am sorry your husband is having a much slower recovery, i just wanted to let you know that even though my family thought, at one stage, there was little hope I have gone on to make an almost complete recovery.
We have 3 small children so my partner had to stop work to look after the kids (with the help of my parents who live 2 hrs away and his mum who lives 5 hours by plane!) He was facing the possibility of me being in hospital for anything up to several years and not knowing what state i would be in if and when i came home. So I can relate to what you are thinking and feeling. But yes there is a very good chance things will get better. I can hardly believe what we went through even though it was only 5 months ago. I am returnign to work on the 9th of January so hopefully things will be back to normal finally. Just take things as they come and believe that things will get better, it just may take time.
AnonymousDecember 27, 2006 at 12:22 pm
I think you should contact the local liaison just as Jerimy suggested, it can be such a great help speaking and possibly seeing someone who was in a similar situation. Also, posting on the forum was a wonderful step in getting the support you so desparately need. The family can be such a great help in these stressful times, and definitely will see you through some very dark days if you need them.
I am flying into Atlanta on Friday 5th Jan, but am at the mercy of someone else’s schedule. If you are near’ish’ the airport, I may be able to drop by for a few minutes, and I will have another GBSer with me(just a suggestion). I will private message you my telephone number if you want to contact me.
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