Hi everyone from Auckland, New Zealand
-
-
April 9, 2007 at 8:29 am
It’s great to have found this site and read about other people’s stories. This is the 1st time I’ve shared my story. My name is Niki and I was diag with GBS in April 06 following a bad flu I had had for about 10 days. I went to A&E dept with severe weakness and pins and needles sensation all through my body and they diag me within a few hours of being there, xfrd me to a ward and started my 5 doses of ivig. The following morning they started passive physio on me and monitored my breathing so they got on to treating me really quickly. Over the next 5 days, I ended up completely paralysed from head to toe (couldn’t even blink) and in ICU on a ventilator. I experienced the most wicked pain and even though I was on a good cocktail of drugs it never killed the pain completely and I never got to hallucinate either so I feel ripped off lol. I was in ICU for a total of 21/2 months and was informed in that time that I had a severe case and was in for a long haul and they weren’t too sure how successful my recovery would be because I was just staggering and nothing was happening. I never gave up that I’d recover and stayed as positive as I could. I was determined that that was how it was going to be cause I didn’t feel like renovating the house again and we had a two storey house which is not the best to get around in a wheelchair so I was going to have to walk 😀 When I got to rehab I was still being hoisted, only just starting to eat real food again but I still had my nose tube in, was completely dependent for all my cares and had the start of movement back in my head, neck, shoulders and arms. I’d lost 9kgs, had no muscle or strength and was literally skin and bone. Slowly but surely more and more movement came back and over the next two months I worked my butt off in physio and on the ward to get myself as well as I could. I had to learn how to do everything again, walk, eat, shower, dress myself, write, the list goes on etc etc, it was like being a big helpless baby and prior to GBS I was a fit, healthy, independent person so it was a huge challenge and a very humbling experience. By the time I left hosp which was 5 months after being admitted, I went home with crutches, a walker and AFO’s. The Doctors and Nurse were chuffed because they thought I would be in there alot longer. I had accomplished my goal of walking out of the hospital and it was the best feeling in the world to go home and be with my family. I’ll fill you guys in about my progress to date another time, it’s 1 in the morn and I should be in bed. I’ve got a boisterious 3 yr old to try and keep up with. Bye for now
-
April 9, 2007 at 2:10 pm
Hi there Niki and Welcome 🙂
I am so glad you found this site, its such a wonderful tool to find information, support and ask questions. Thank you for sharing your story, sometimes its hard to do so and often it’s easier to run away from those unhappy events (I did, for about 17 years). I am keen to hear about your progress – and to tell you the truth ‘chuffed’ to hear that you seem to be doing so well and in such good spirits. **Chuffed used to be a word I used a lot when coming to the States, and all I got was blank stares 😀
I’m sure many of you have realized that [I]’Chuffed’ = happy, thrilled, glad[/I] -
April 9, 2007 at 2:28 pm
Hi Niki and welcome to the family. Glad to hear that you are recovering, it sounds like your case was pretty severe. Hope to get to know you better. Take care.
Jerimy
-
April 9, 2007 at 2:46 pm
Greetings Nikii,
Welcome to your new found friends! You have been through a rough time and it is so great to hear of your attitude that helped you walk out of that hospital. I say ‘groovy’ to that! Looking forward to hearing more from you in the future.
-
April 9, 2007 at 5:31 pm
So happy to hear of your leaving the hospital. You certainly had a basd case of GBS. YOu mentioned thst they started the five treatments of IVIG……yet five days later you were not even able to blink. Do you think the IVIG worked for you? You hit rock bottom and you had the IVIG. Just trying to figure out what works and what doesn’t……were you under any stress before …coud be months or years before….
-
April 9, 2007 at 5:36 pm
Hi Niki,
Welcome to the forums. So glad to hear that you have made such great strides in getting back on your feet again. Wonderful news, keep the good news coming it gives hope to others.:)
-
April 9, 2007 at 11:15 pm
Thanks everyone for the welcome and encouraging words. I don’t personally think the IVIG did anything for me but the Doctors did say to me at the time that it was no guarantee that my paralysis would plateau but it was part of the course of treatment they gave and it was a ‘see how we go’ situation. My first massive challenge was trying to get my head around this illness and then through the initial first month where nothing happened, I just lay there 24/7 totally paralysed and did not improve (it was like a living nightmare to put it mildly). It was in that time that the neuro-consultants were getting concerned about my condition but obviously still trying to remain as positive as they could. They even contemplated putting me in an induced coma because they had a feeling I was going to be like this for a while but I’m glad they didn’t. Even though I couldn’t do anything, I felt better knowing what was going on around me and what was being said and between me, the hosp staff and family, we all could make the decisions about my treatment together. As far as stress goes, I had just the usual life stressors, nothing major or bad, but like I said, I did have a bad flu for 10 days prior to being admitted. I only have praise for the hosp and the staff that treated me. I was really fortunate that the hosp staff that looked after me had treated many GBS patients before me and my main PT had specialised in GBS so they got on to treating me really fast and was able to be inform me right from the word go what was going on throughout the whole process. I also had 3 other patients in hosp with GBS as well so in rehab we all bounced off one another for support.
-
April 10, 2007 at 11:51 pm
Hi Niki,
I was in ICU for 4 weeks and in hospital for 7 before i walked out – no walker or anything. Definitely “chuffed” … didnt realise that was not an international word. Ali, where were you before the US … trying to narrow origin down a bit.
As for the hallucinations, you did not miss out on anything believe me. I was in an induced coma for 5 days and when i came out it was like i was caught half way between the coma and reality. I heard what was going on around me and bits of reality were weaved into the hallucinations so i didnt know what was real and what wasnt. Some were funny (there was a theme park underneath the hospital) but others were terrifying – i thought my son had been killed and no one would tell me. I also thought the nurses were whispering about me and thought i was putting it on and had changed all my notes.
-
April 11, 2007 at 12:01 am
Yolande,
I am South African.
-
April 11, 2007 at 1:05 am
That’s interesting to hear about the hallucinations because another GBS’r I met in rehab came into ICU about 6 wks after me being there so they had two of us which was a first for the staff and he had bad hallucinations and was saying exactly what you said about conspiracy’s and parties etc so even though I joke about it I have to say I’m glad it didn’t happen to me, it’s not a nice experience. I never thought the word ‘chuffed’ would cause such interest, I’ll have to think of some other ‘kiwi’ gems to come up with 😉
[I]kiwi = an alternative word instead of calling yourself a New Zealander and our national bird[/I] -
April 11, 2007 at 4:03 am
Niki, are you wearing your jandals? that will raise a few eyebrows … probably wont help if i say that is the kiwi word for thongs … will raise even more eyebrows.
I am from Victoria and my partner is from Western Australia, and we live in Queensland so always coming across things that are called something different in each state
-
April 11, 2007 at 6:43 am
hehe 😀 , on ya mate, to confuse even more we could do trans-tasman.
-
