Thursday, February 07, 2013

"Celebrating" my 20th anniversary of Guillain-Barre

Master Competitor in ICU, circa 1993
It's not top of mind on a daily basis, but as I wrangled the elliptical yesterday it came upon me...this is my 20th year anniversary of the challenge, then victory over Guillain-Barre Syndrome.

If you haven't heard of GBS, join the crowd. I hadn't either until my legs, arms and lungs stopped working. Going into total paralysis and living on a vent tube is a game-changer.  If you'd like to learn more about this nasty little demon, read here:

http://www.gbs-cidp.org/home/gbs/all-about-gbs/

There's so much to tell about my GBS journey, but I don't want to waste your time - so here's the nickel tour:

GBS is an autoimmune dysfunction. Somehow, my body read the wrong signals and started to eat the myelin sheaths from around my nerves.  No sheaths, short circuit and it's shut down time.

I am 99% sure that my GBS was caused by a flu shot. It's not highly promoted, but 1 in 100,000 get the reaction I did.  So when you're getting that dead virus shot into your body, just say a short prayer prior.

Things happened rather quickly. I was at home watching Bill Clinton win the election (November, 1992) when things started to fuzz out. First my arms stopped working, then my legs went.  I languished in a local hospital while a general practitioner tried to kill me (my opinion).  I was finally transferred to a regional hospital, but the ambulance got lost en route and my attending nurse barfed all over due to car sickness. While she was barfing, I was dying as my lungs shut down.

I made it to the hospital where a neurologist saved my life.  Dr. Bhupenda Khatri, you rule, bro. I had 13 plasmapheresis treatments, which are actually like oil changes for the body.  They extract all one's blood and filter the albumen. No one knows what causes GBS but the treatments made me stronger each session.

There are many things to report, but let me take this home for endurance sport athletes; my 100 mile mind was the way out.  I knew how to suffer, how to persevere over long periods of time, and knew how to overcome adversity. I methodically fought back, through breathing again, to learning how to swallow, to sitting up in bead.  I remember in the early days of recovery, I mentioned to a nurse that I would run the Ice Age 50 mile in May (it was January).

She chuckled and said "you'll be lucky to be up in a walker by then."

I finished Ice Age that year.  Set my pulse meter for a 130 bpm cap and jogged to the finish. Knock he down, I'll get back up. Tell me I'll be in a walker, and I'll finish the race.

No need to thrive on the past, except when it benefits the future. On my worst days, I can say thank you Lord, I have been given 20 bonus years since GBS; I've been living the bonus life ever since. I also had special people around me who loved me and made key decisions...decisions that kept me alive. I will forever be grateful.

We never know when it's over, when it's time to punch out.  My GBS experience set a benchmark in my life going forward.

12 comments:

  1. Anonymous3:33 PM

    I had a friend who a year or two ago contracted GBS after either getting the flu Or the flu (I'm not sure which). He too has made a full recovery, but it was a scary time for him and his family. It helps to be a stubborn SOB!

    ReplyDelete
  2. Ty for sharing your story. My little girl got GBS when she was 4 yrs old. Like you she was determined to get well and never got discouraged despite the pain she felt. It was the most terrifying time in my life to see her hurting and not being able to take the pain away. Jan 23 will be 6 yrs for her. Congrats to you on your victory over GBS.

    ReplyDelete
  3. Anonymous12:08 PM

    Good for you Tom. I have CIDP which is the chronic part of GB. I, too, had the paralysis but worked hard to get everything back to working order. You have set goals that are almost unbelievable but I praise you for that accomplishment.

    ReplyDelete
  4. Congratulations!!! Here's to another 20 great years.

    It's 29 years for me. One heck of a wild ride.

    ReplyDelete
  5. My husband was Dx on dec 21/12. He is below waist paralyzed with a bit of difficult movement. Dr Dermot Adams is following him and following cutting edge protocols...IVIG monthly, no prednisone (insulin dependent diabetic). Did you ask for a second opinion ? When, Rehab is confusing ....suggestions....alternative treatments? Plese help him (dave).

    ReplyDelete
    Replies
    1. I was moved from a small local hospital to Milwaukee and went under the care of an excellent neurologist. He started plasmapheresis immediately. I had 13 treatments. Keep pressing into rehab.

      Delete
  6. As a wife of a two time GBS patient, I thank you for your uplifting post. We are 2.5 years into the second recovery [the first an amazing 6 weeks] and it is still a daily struggle. I am always heartened by good tales, like yours, it helps me remember how far we have come since the days of IVIG, plasmapheresis and vents.

    CChromicky

    ReplyDelete
  7. Anonymous1:35 PM

    Congrats on your recovery! I had GBS in 1975. It affected my limbs only but I had 2 small children and couldn't do that without a lot of support. All they had then for treatment was steriods, that was a whole other disaster after 9months I did recover and prospered and now am chasing after 5 grandkids! Yay to life after GBS!

    ReplyDelete
  8. Anonymous2:51 PM

    Well done, that is fantastic, I am six years post and still grappling with 'off' days of fatigue and aching limbs, but I will not stop battling with this..

    ReplyDelete
  9. mandy3:05 PM

    :) I read this and smiled at your kindred spirit.

    I got GBS 2 and a half years ago, same kind of story. I was told I'd be 12 months in hospital before a long rehab.

    I laughed at them and said I'd be out in 6 weeks. I was walking again (a bit wobbly, to be fair) in 5 weeks, back at home in 6 weeks, back training in the pool in 8 weeks (i freedive and swim) and back at work in 12 weeks.

    Same mind set... Don't tell me what I can not achieve, otherwise I will HAVE to prove you wrong!!

    It's true, isn't it..."that which does not kill me makes me stronger".

    Light, and best wishes.

    ReplyDelete
  10. Anonymous11:33 PM

    SO GLAD TO HEAR THAT YOU HAVE COME THIS FAR FROM GBS. I TO HAD SUFFERED LIKE YOU DID FROM THE SAME THING. ITS BEEN ALMOST THREE YEARS AND IM STILL TRYING TO GET BACK MY STRENGTH FROM IT AND I HAVE DEVELOPED NEUROPHY IN MY FEET AND BOTTOM OF MY LEGS AND SOME IN MY FINGERS. I AM JUST SO BLESSED TO HAVE COME ALL THIS WAY FROM WHERE I WAS TOTALLY PALALIZED AND ON A VENT FOR 14 DAYS. THIS IS A HORRIBLE THING AND I PRAY THAT THEY CAN COME UP WITH SOME KIND OF VACCINE FOR IT.

    ReplyDelete
  11. This was so inspirational. I am currently fighting CIDP, the chronic counterpart to GBS. I was diagnosed last September after I became paralyzed from the waist down in a matter of hours. I have been a runner all my life, and someday I will run again. In the hospital, I told the physical therapy tech that I did not need to learn to use a wheelchair that I was going to walk. I have been working diligently to get my legs back since then. I will not give up, GBS will not win. I too plan on finishing the race.

    ReplyDelete