Family member of GBS patient
AnonymousJuly 9, 2006 at 1:05 pm
I am relatively new to GBS. My mother’s second husband, to whom she has only been married for a little over 2 years, had come down with a stomach virus over the Memorial Day weekend 2006 which caused severe vomiting and unbearable headaches. Her tenants (she has a 2 family house) had had the virus the previous week and told her how horrible the vomiting and headaches were, so she figured Rex (her husband) had the same thing. On the Tuesday after the holiday weekend he was still pretty sick so she took him to the ER. In the ER they ran blood work and did a CAT scan, said that Rex was dehydrated, gave him IV fluids and sent him home saying it was a nasty virus that could take up to 2 weeks to get over. The next day she took him to his regular doctor who prescribed meds for the headaches and vomiting and said that the virus had hit Rex pretty hard. The meds helped with the vomiting and headaches and Rex was finally able to eat bland foods without vomiting it back up. He appeared to be doing better when we began noticing that the left side of his face was drooping, he was very weak (which we figured was mainly from the virus), he couldn’t focus his vision, and he said that his left arm was “no good”. Mom then took him back to the ER and it was then that the docs said that there was definitely something wrong with him. After a battery of tests (EEG, EKG, CAT scan, MRI, etc – all of which came back normal) they finally did a LP and found raised levels of protein in his spinal fluid and had their diagnoses – GBS. Rex was first admitted to the hospital on June 12 and the diagnosis was made on June 15. At that point he was transferred to ICU due to 1) problems controlling his BP; 2) the possibility that his breathing could become impaired and 3) to begin IVIG treatment. At this point he was able to move his hands and feet a bit, but was otherwise paralyzed and he was beginning to have problems with phlegm getting caught in his throat and choking him. After about 1 week in ICU he was showing signs of improvement with his movement and his BP was under control with meds and they transferred him back to a regular floor and talked about sending him home in a hospital bed with a hoyer lift. In the meantime, he had a couple of roomies that came and went, 2 of which had pneumonia, which he ended up contracting. The pneumonia ontop of the GBS wreaked havoc with his breathing and on July 8 he was transferred back to ICU and intubated and a NG tube inserted (he had been unable to eat due to the choking and had gone from about 220 prior to becoming ill down to 147 in 1 months time). They began tube feeding today and had tried to keep him under anesthesia, but his BP dropped dangerously low, so they had to bring him partially out of the anesthesia. He seems to be aware of the ventilator and that people are there with him. So far he is not fighting the machine. I can’t begin to describe the stress and heartache this is causing my family. Ontop of everything, Rex does not have health insurance. He was a self-employed mason who began his business last year. He had been investing all of his income into his company and did not have the money for health insurance (we all know how expensive private health insurance can be). My mother works in a nursing home for $10/hour and could not afford to put him on her policy there and still be able to pay the household expenses. She is attempting to get him on Medicaid, but because he has had his green card for less than 1 year he may not be able to qualify. She may end up having to sell her home, the sale of which would only cover a fraction of the medical expenses, and she would still be unable to be able to pay the remaining medical bills and be able to survive. I am truly concerned about how she is going to be able to survive. I am also concerned that Rex may not be able to get the extensive therapy he will need to rehabilitate to at least a somewhat normal life once the crisis part has passed. My mother was told that GBS has a very high recovery rate, but that the road to recovery is very long. With Rex having the pneumonia thrown into the mess, it tries ones beliefs that he will ever have a “normal” life again. Any feedback, advice, support, stories, etc. that anyone wants to share or offer would be greatly appreciated.
AnonymousJuly 9, 2006 at 3:02 pm
Believe it or not, most people with GBS do get better, and the chances of having a close to normal life are very high. It is hard to see that now, but so many people I know who had GBS and have had miraculous recoveries, it almost seems like the norm. The recovery may take years, as opposed to weeks or months, so keep expectations in the realm of reality.
Pneumonia is very common when recovering from GBS. Bacteria like warm damp places to thrive. A person with GBS does not breath deeply enough to keep the lungs dry enough, so bacteria can and does flourish. The breathing will get deeper with time and the problems will probably diminish with time.
AnonymousJuly 9, 2006 at 10:57 pm
Welcome and sorry to hear about your Mom’s husband. Here is a site with some links to free/reduced meds and other programs, [URL=”http://www.needymeds.com”%5Dwww.needymeds.com%5B/URL%5D . Not sure about residency requirements etc but it’s worth a look. Best of luck and keep coming back, he and your family are in my prayers.
AnonymousJuly 10, 2006 at 1:58 am
Debbie. When I read your story my heart went out to you and your family. I am a 67-year-old retired banker living on the south coast of England. I contracted GBS 16 years ago, spent nine weeks on a life-support with the added complications of pneumonia, a further 11 months in hospital, leaving eventually in a wheelchair having been told by the doctors that there was no chance I would ever walk again. I lived over two years in the wheelchair (hating every minute of it) and for the first year I had weekly physiotherapy as an outpatient at the hospital until they came to the opinion that nothing more could be done for me. They did their best, for which I will always be grateful, but my wife was left with the problem.
Mary would tell you that I was a difficult patient, because I refused to accept my situation despite everything I had been told. I felt an enormous sense of grievance at what life had done to me and my wife, but quickly realised that self-pity was totally pointless.
Every morning I would bully, cajole, plead or use any means within my power to persuade Mary to spend an extra few minutes helping me to try to walk. In the early days 10 minutes was quite enough, as it left me completely exhausted. At first I could discern no progress, but after a year I began to notice some small differences, which encouraged me to try even harder.
Four years after my initial attack (1994) I was walking on crutches and a year later I could walk unaided for a short distance wearing leg splints made of plastic that extend underneath my foot and up the back of my leg for about a couple of it to just below the knee. (I cannot put too great an emphasis on the value of these artificial aids: without them I would still be on my hands and knees.) By 1996 I could walk three quarters of a mile to my local town of Ringwood, Hampshire, and two years after that I was able to get to the house of a friend one half miles away and back again.
My hands never recovered, so I dictate into my computer using a speech recognition program called Dragon Dictate 7, which is absolutely marvellous.
My message to your stepfather is simple:
“NEVER GIVE UP, NEVER, NEVER, NEVER GIVE UP, NEVER GIVE UP FOR ANY REASON WHATSOEVER”.
I feel I should add, in the interests of integrity that I am a poor advocate of my own advice. My wife would tell you that in the early years I would give up every day, sometimes several times a day, usually out of exhaustion and a frustration that drove me incandescent with rage at my body’s inability to act on my mind’s instructions, but I was always ready next morning to try again.
Looking back at those pre-Internet years I realise I was fortunate in that I knew so little about my condition. Never having heard of GBS and the catastrophic effects it can have on a person’s life I never accepted that I could not recover. It was never a question of “if”, merely “how long?” and the doctor’s opinion provided the catalyst that filled me with a relentless determination to succeed.
I am wiser now, and realise that sometimes the physical limitations of the body prevent even the most iron will from effecting a recovery, but your stepfather should be aware that much may be achieved with a quiet determination and a positive attitude.
Finally and most important of all, the support of a partner and family is essential. I was lucky, and I still look back on the last decade and a half with a sense of humility and wonderment at the years of quiet, dedicated love and support provided by my wife, whose life also changed for ever when I was admitted to hospital.
AnonymousJuly 11, 2006 at 7:15 am
Thank you everyone for your words of encouragement. It is very hard for us to see that my stepfather will be able to pull through all of this. He is now running a fever and they are still having difficulty controlling his BP and heartrate. Having others share their experiences gives us some hope to hold onto. God bless you.
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