All about Guillain-Barré Syndrome - Kristen suffered from weakness and a heart attack during Plasma Exchange

In approximately August of 2003, I began to notice numbness and tingling in my extremities and my diaphram seemed numb. I also fell and fractured my ankle and was only able to get around using a wheel chair. I had no idea what was going on, and neither did anyone else around me. Also, since I didn't have insurance, I was hesitant to seek medical advice.

What a mistake that was on my part.

Finally one day I was talking with a friend of mine from UK, telling her what my symptoms were, that I had lost the use of my legs and hands, and my diaphram felt numb, and fortunately she is a nurse that had cared for a GBS patient in the past. She instructed me to get to a hospital immediately, which I did.

The first hospital I was admitted to diagnosed me with GBS, but they didn't treat GBS patients there, so I was transfered to St Lukes Hospital in Kansas City that has done research on treatments and causes of GBS.
It was there that I under went the plasma exchange.
During my last plasma exchange my heart stopped. Fortunately I was in the hospital when this happened, and what better place to have a heart attack than in the hospital?

I spent two or three weeks in intensive care before I was transfered to Truman Medical Center Lakewood for rehabilitation.

I had lost total use of my hands and legs. My physical therapist continued to work and work with me, and soon I began to regain some of the use of my hands, but still could not straighten my hands nor pick up small to medium sized items.
My therapist worked alot on my upper body strength, and one day I asked him why he was spending so much time working my upper body, and he told me it was because he saw no choice but to wheelchair train me. Well, I was pushed back to my room and put in bed, and I lay there thinking about spending the rest of my life in a wheelchair, and what that would be like.
I decided NO, I was not going to be confined to a wheelchair the rest of my life!

The next day in therapy I managed to get up and take five steps with the use of a walker. My therapist cried, and said if he had known telling me that would get me going he would have told me a long time before then!

I spent two months in TMC, learning to roll over in bed again, walking and regaining some use of my hands. Upon dismissal, I was still confined to a wheelchair and walker, and received very little physical therapy as an out patient.

After being dismissed from the hospital, after a couple months, my friend from the UK said that she would fly me there. This was the best move I made in my recovery!
While I was there, she began working with me on a daily basis. One day, I had a fit of tears and told her I just wanted to walk again. She went out and got me two canes. After practicing around the house some, she said that each day we would go for a walk, and walk one lamp post further each time. Before long, I was walking all the way around the park. Something no one ever thought I would be able to do.
I went to the UK dependent on a wheelchair and walker and came back using two canes to ambulate.

I seem to be stuck in this stage of recovery, as I still use the canes to walk with, but I'm not in a wheel chair. I also have not regained any planter reflexes in my feet, and my hands and diaphram still bother me from time to time. Also, with a compromised immune system, it is necessary to stay well away from anyone that has any little thing wrong with them. I go for daily walks, not very far, but they are daily walks, and I'm able to do that. I defied the odds so to speak.

GBS is a debilitating disease, but there is hope and life after diagnoses. It takes a lot of determination and will power, and even on days you feel like you can't even get out of bed, you have to force yourself to. I never gave in to the disease, and I never gave up. Sure, I'm not in as good a shape as I was before it happened, but I'm in a hell of alot better shape than anyone ever thought I would be. Just never give up.

I realize this was a readers digest version, but hope it will be useful. If you have any questions or comments, or think of some area you would like to be clearer, let me know.

regards,
Kristen Hackler
12.2005