GBS My Story
AnonymousMay 4, 2009 at 12:31 pm
This is my story of my life with GBS.
I’m going to write my story in sessions.
Frist off I’m the type of guy that rarely gets very sick but I have arthrist ( please pardon my spelling) so when I woke up on aug the 20th I noticed my legs ached quite a bit.
Now earlier about 2 weeks before that I got a horrible eye infection an a few days after that I got a summer cold.
Now this was one of those annoying colds that I couldn’t shake.
So around 3 days before I got the leg pains I also ate some under cooked chicken.
So with all these things in mind that could of brought on my gullian barre, I’ll get back to Aug 20 th.
My legs were aching so I took a 10 mg Lortab, an I noticed I was walking funny. But I didn’t do anything about it I just went to bed that night.
The next morning, I woke up at 6 am an I couldn’t hardly walk.
I told my wife that I neede to go to the VA hospital.
Well the news was saying that rush hr traffic was really backed up we’d sleep for another hr before going.
One hr later my legs were not working at all an we called an ambulance.
They took me to Cameron Regional a small town hospital an the doctors there were baffled.
They even told my wife they thought it was Lu Garret.
While I was in the Er room I noticed I was having problems dialing my cell ph.
I was then transfered to the Va hospital
AnonymousMay 4, 2009 at 2:44 pm
When I got to the Va, they wouldn’t let my wife in the er, she had to wait in the waiting room.
They did a spinal tap an determined it was Gullian Barre. The only treatment they had to offer was the hemo.
I was really quite hungry by this time now as it was getting along about 5 in the evening, but the doctors wouldn’t let me eat because I had thrown-up earlier from the loratabs I had taken. But they went taking any chances as they thought I many develope problems swollowing.
Instead they ghave me the most god awful drink Nutra-cal.
O it was horrible I didn’t drink it.
Through out the night they kept having me blow into a tube the measured my breathing strengh.
By the next day the resp ther was pushing on my chest inorder for me to make my numbers.
Once my wife seen that, she threw a fit an told the doctors what the resp th were doing.
The doctors came in an measured my lung capicity and decided to put me on a vent an also at the same time they put me on a feeding tube.
AnonymousMay 4, 2009 at 5:40 pm
Now the 1st day I was at the va in intense care I had a really bad cough an I was coughing up flem.
The nurses there told me just to sollow it, but I just couldn’t bare to to that so I would just spit it out on my gown. Now I was completely paralyzed so of an evening for 15 hrs. a day my wife would stand on her feet suctioning me so I wouldn’t have to go through that.
Now after I went on the vent they kept me very sedated.
After about 14 days on the vent I had a pickline come loose an fall on the floor. THANK God my wife was there again because the nurse there was going to plug the line in after being on the floor but the wife wouldn’t let her.
The nurse was sooooooooo pissed having to change that line.
Now let me tell you about the nerve conduction test It was really usless all it did was cause me discomfort an pain as they expermented on me.
The damage to the sheeting was already done, there was nothing they were going to be able to do.
AnonymousMay 4, 2009 at 6:08 pm
So anyways after being in intensive care for 21 days the Va sent me to another hospital to wean me off the vent.
I was very hopeful becase I had regained slight movment of my right hand.
Enough to operate the tv remote.
Now when the wife wasn’t there she would call me on the phone.
With the vent I couldn’t talk so I would make a sound with my tounge a long click was yes an a short click was no
AnonymousMay 4, 2009 at 6:13 pm
While at the other hospital after they took me off the vent they started putting me in a barton chair for 30 mins a day.
After I could stand to be in a chair for 30 minutes with out exusting out, they started putting me in a standing frame.
I was in this hospital for 21 days also.
Now about a week before I left there they had me drink so dye an ex-ray me to see if I could sollow.
They then put me on soft food an sent me to a nursing home that had phsyical therapy there.
AnonymousMay 4, 2009 at 9:33 pm
Kevin I am studying to be a medical assistant and I cannot believe the nurse was going to put the pick line back in you after it had been on the floor. What an idiot. They are training us to be very clean and germ free. It is a good thing your wife was there to stop her. The Rn.s make a lot more money than a medical assistant you would think they would know better. I know when my husband was in the hospital he liked me staying with him for that very reason. He said hospitals are very dirty. We are learning in class to not touch the elevator door buttons to use a tissue instead.
AnonymousMay 5, 2009 at 7:42 am
You mentioned that the only treatment that the VA offered you was “hemo”. Could you please explain what this treatment is?
I spent 8 months in a VA hospital with GBS over 20 years ago and could tell a few horror stories myself, but have come to the conclusion that all hospitals have their problems. Especially now since the nursing staffs are so over worked with the hospitals trying to conserve due to the high price of healthcare.
AnonymousMay 5, 2009 at 8:20 am
Just read your story and experience! I am so deeply sorry that you had to go through such a horrible experience and I hope and pray that you get well and be much better soon. So many of us getting sick and I wished we all had a cure that ws much easier than what we all go through. I will keep you in my prayers! Hugs
AnonymousMay 5, 2009 at 11:22 am
My nursing home exp
My 1st day at the nursing home they didn’t have orders for a stool softner, so I stopped up right away.
I requested an emnma or how ever you spell it an it didn’t quite do the job so I ask for another 1 an they told me no I would get addicted to it. ( How foolish) So I asked my wife to go buy 1 an give it to me. IT WORKED an saved me from getting impacted.
I also learned to use the bed pan at night because that was when my wife was there an she was the only 1 that would wipe me good, otherwise I would end up with a terrible rash.
Now speaking of rashes I don’t know why young aides have such a problem doing perry care on a 50yro man.
But I end up twice with the worst groin rash to the point where it was goulded. My wife had to step in an start cleaning me.
As I only got a shower twice a week.
AnonymousMay 5, 2009 at 11:35 am
My shower exp
Now nursing homes are quite tight an so I got use to many a cold shower.
Now after I had been in the home for about 6 wks I was still getting supplments through a feeding tube.
An the Aide decided not to put a plastic cover over my feeding tube that was in my stomach.
3 days later I had the most horrible pain in my stomach right around the feeding tube , so they rushed me to this small town hospital.
The ER doctor said it was just a slight kidney infection even though I had a 103 temp.
My wife told him she wanted a second opinion an he said we were just taking advantage of the system as I was on medicare.
Well after much insiting he called my personal doctor an he had me admited to the hospital he practices at.
I was there for 1 week with piggy back IV’s as paratinist, IE a real bad infection had devoloped around my feeding tube PLUS my kidney infection from them not changing my cauther.
That another exp. GUYS if you have alot of pain when they are blowing that cauther up, Have them stop it’s not in far enough.
I was lucky as my wife use to be a nurse.
AnonymousMay 5, 2009 at 11:45 am
Well I took my 1st step on Dec 1st
Owhat joy. I started using a walker. The therpist even video taped me so I could work on standing straight an walking correctly.
An BTW thats when (I insited they remove that cauther).
They broke my therapy sessions up into twice aday as not to over work me.
I worked hard at my therapy as I wanted to get back to where I was.
I’m really quite the handyman/motorhead.
And of course I really enjoy flying my model airplanes.
AnonymousMay 5, 2009 at 11:51 am
It seemed like my legs came back 1st, but I was still having to be fed as I had really poor control of my arms an at times they would just quit working.
Now the therapy dept an the nursing dept had qite the dispute as the nursing dept would just as soon as have me lap up my food like a dog.
Now I can’t say all the aides were like that just the day shift 1’s.
The nursing home gave me a big private room so as the wife could spend the night with me an take care of me.
We’d even hang a do not disturb sign on the door.
AnonymousMay 5, 2009 at 12:06 pm
Well Dec 31st came an I wanted to spend new years with my wife in my own home an in my own bed.
Now there is a rule if your on medicare an your out past midnight medicare does not pay anymore an they kick you out of the nursing home.
So I came home with no meds an no therapy.
My poor wife was left to feed an dress me.
around valintines day I was finaly able to feed my self an even use a can opener.
Heck I could even put my own socks on./
I was still using a wheeled walker.
I contacted the Va an they set up therapy for me at that same little hospital that I had been to in the past.
The PT was ok but they had a temp doing the OT
By mid march I had quit using the walker, which was probaly a mistake because I was learning bad habits an I waldo when I walk.
I catch my self compasating all the time rasing my shoulder instead of my arm.
My hands are claws but I manage to use them. I was even able to remove a carb om my push mower an clean it as it set out all winter while I was away
There is alot of tingling in my hands an feet but I can feel pressure an hot an cold.
AnonymousMay 5, 2009 at 12:13 pm
Ghost there are 2 types I treatment from what I understand.
1 is they cleanse the blood an the other is hemoglobbin or how ever you spell it.
I not writing to to cry I writing this so that anyone out there reading this can see al the things that go on BUT there is light at the end of the tunnel I just havn’t wrote about all that yet.
One thing is you got to keep fighting no matter what, an yes even push your self
AnonymousMay 5, 2009 at 6:12 pm
Kerwin! Your story has really touched my heart. Especially about the nursing home you were in. Did not sound like a very good caring place to be in. I took my mother out of one towards the end of January and was not a happy camper when I caught an aide yelling at my mother. She came to live with me 3 months. I pray that you get much better as each day passes and enjoyed reading your story although it was painful reading what you went through and saddened my heart. Will be praying each day becomes better as time goes by! God Bless!
AnonymousMay 6, 2009 at 5:05 am
Welcome to the family..:)
And I , like Linda, am touched and horrified by your story and experiences with nursing home, OT, and all that crap you had to go thru with the medical “staff”. Also, your experiences reminded me of how wonderful my wife was (like yours), cleaning me after excretions, etc. Aides damn sure didn’t want to do it…….even tho it is there job!!!
I understand the message you are trying to convey…………that there is “light at the end”……even with all that stuff you went through.
I hope and pray that you continue very well in your recovery….
AnonymousMay 6, 2009 at 12:43 pm
Well I came home Dec 31 an as I said before I couldn’t take more than 5 or 6 bites of food before my arms quit working.
BUT the 1 nice thing about GBS is things do come back and I am now able to feed my self .
As a matter of fact the 1st of March I couldn’t carry a 50 lbs of dog food but I kept trying at 1st I would pick it up an move it a couple ft at a time, but only last week I carried it well over 100 ft.
I often wonder what will come back next, I would love to get this tingling out of my hands an feet, It feels as though they have went to sleep.
I have found that when going through therapy some time you have to tell your theripst what you want,
For example I told them I want to work on going up steps an getting up from off the ground or floor.
Then I kept working at it an believe me you don’t how it’s paid off
AnonymousMay 6, 2009 at 4:51 pm
Thanks for clarifying which procedure was performed on you. Your answer tells me that the VA has improved a little towards slowing down the effects of GBS and reducing the damage that it can cause. Back in the 80’s they put me on life support and let the syndrome run its course. What really worries me is that its policies have not changed any when it comes to patient care, even after all the bad publicity they have received during this war with Iraq. I have the same worries with the way some nursing homes are being run.
You mentioned loosing your Medicare when you went home and spent the night on New Years. Did Medicare stop paying for all your therapy and medical expenses from then on? How did you get on Medicare so quickly in the first place? Did the VA pick up the tab for your therapy at the small hospital? I ask these questions because I am on Medicare and I have a service connected disability and use the VA for some of my Meds now. I need to know as much as possible when the time comes that I will have to navigate these two systems more than I do at present. When I was going through GBS I only had to deal with the VA and it was not service connected. I do not remember having to deal with so much red tape. It would be nice if I did not have to deal with either one!
What really concerns me is that this could be exactly how it will be if we go to socialized medicine in this country. I’m sure that our government will take some of its cues from the VA system and how it is run. This is just my opinion…
Sounds to me like you are recovering fairly quickly and, like Perry, I do understand where you are coming from in trying to convey, as we have been there. I look forward to hearing about your “light at the end on the tunnel” when you post it.
AnonymousMay 6, 2009 at 4:56 pm
Way to go Kerwin! So happy that you are able to do these things now. Bless your heart it’s been a fight for you but your getting there! keep up the good fight! I still have numbnes and tingling in my hands and feet that I doubt will all ever go away completely. But I keep going and don’t give it! So proud of you Kerwin! so proud! Hugs
AnonymousMay 6, 2009 at 11:33 pm
Hi Gost Lucky I had started drawing medicare a year before all this happened as I got a blood transfusion in 1989 where I contracted hep C , an I need a year to go through that treatment program.
I don’t know if medicare quit paying for my therapy an other expense or not all I know is that when I spent the night with my wife I was not allowed to come back, unless I was able to pay the nursing home out of pocket.
I knew I was getting close to my 100 days in the nursing home an after that I was going to be responsible for 20% of the bill, so I contacted my primary care at the VA an told the nurse practioner that I was going to need PT, an that they had 2 options 1 they could send a van 60 mile 1 way to pick me up an take me home 3 times a week or they could out source it some where close to me.
They called me back an chose the later.
I have to agree with you about public health care.
The problem with the VA is it’s so hard to fire anyone an these nurses know it.
Thats why like the night shift, they can stay up all day, an sleep when they get to work.
The week I spent in a regular large hospital, those nurses worked an my care was great.
AnonymousMay 7, 2009 at 5:40 pm
Hey Kerwin! The VFW if you are a member or not will at times provide transportation to the VA when you need to be seen. I know in my area they do it for the Veterans here where I live because it’s a few hours away. Anytime you need assistance contact them and see what they can offer! Might be able to get more help by contacting them.
Your story really has touched me in so many ways!
AnonymousMay 8, 2009 at 3:35 pm
No problem Kerwin! My father whom passed away in 2002 was a retired Master Sergeant for the US Army! He was also a POW in the Korean War for 39 1/2 months. Got discharged but reinlisted a week later and he served in the Vietnam War. Let’s just say you met an Army Brat! LOL! My dad’s brother too was Army and retired and both of them were in the VFW. I learned alot from them. My father also bought me a lifetime membership to the Ladies Auxilary. So I every now and then I help out with the cookouts they have! They like my Southern Boiled Potatoes and my Chocolate Cakes I make! 3 times a year I am cooking 20 pounds of potatoes and 4 cakes for them. That’s each time the 20 lbs of taters! Hefty eating crew! Hugs
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