Drug comments

There were a lot of different drugs I took during my illness.  I thought I'd comment on a few of them here.  GBS patients deal with a lot of pain and a lot of the pain relievers don't work as well with GBS pain.

Also as I mentioned before some medicine don't work well on all people.  I've read that people with a higher IQ may reject the pain relief offered by some of the drugs.  I had very little pain relief from most of the drugs.

Oxycodone - this was my main form of daytime pain killer.  Even though it's a heavy duty narcotic, it only dulled the pain for me.  Like taking aspirin.  Later when I was nearly healed, I stopped taking it an my pain actually decreased (once I got past the withdrawl).  Note this drug does affect your intestinal muscles.  I had severe cramps during withdrawl and it took a long while for the muscles to start working properly.

Percocet - this is Oxycodone + Tylenol.  Avoid taking this and take Oxycodone instead.  No need to overwork your liver for a fever reducer if you don't have a fever.  Yes, they did prescribe this at first.

Oxycontin - this is just a slow/timed release version of Oxycodone.  Rather than a big rush it's supposed to give you a steadier stream for longer.

Dilaudid - this is the only pain reliever that really worked on me, but only in the IV form.  It is very powerful and would knock me out.  I had to have a central line put in to allow easier administration of this.  So I could only take it at night and used Oxy during the day.

Neurontin - this is a drug for nerve pain.  Nearly everyone in the physical therapy ward was on it.  And we also noticed that nearly everyone in the PT ward talked almost like a zombie.  They were slow to talk and very distant.  I nearly lost my mind on it.  I couldn't remember anything and barely knew my wife's name.  We stopped taking it immediately.  It seems to dull your whole nervous system.

Propofol/Diprivan - used this while in ICU to "sleep" at night.   Often used for the induced coma as well, but I stayed awake during the day

How I beat GBS!

Okay, I've realized that I don't really want to spend too much time reliving everything that happened.  There are also lots of stories of people and their experiences you can read.  The whole reason I wrote this blog is because I had a very bad case of GBS (with a tracheotomy and was nearly fully paralyzed) and yet I recovered with no lingering side effects.  I beat a bad disease, GBS with an amazing recovery.

Some things I did which are unconventional and probably lead to my quick and nearly full recovery.  I'm not a medical doctor, so this is just based on my experiences.  I'm not giving medical advice.  Please consult your doctor.

I was tubed (as I mentioned in my last post) and after 2 days they brought me up so my wife could talk to me.  I demanded to be kept awake while tubed.  My wife fought hard for me and even got the chief lung doctor to agree with her.  He said, "It is better if he can do it, as the recovery is much better and the damage is less."   Being in an induced coma over 7 days greatly increases the recovery time.  That is a fact.  I've actually seen it on other blogs where people were under for a month and it is very hard.  The nurses all scolded my wife and told her she was being the cruelest ever.  I don't think they realized it was my choice, since I could only communicate by writing letters with my finger.  But my wife kept at it until everyone relented.  Apparently I'm the only person to ever be awake in that ICU..... EVER.

Soon (a day or two?) they swapped me to a tracheotomy to increase my comfort while tubed, especially since I was awake.  My lungs were not that weak, so I asked to breath on my own, at least during the day.  Again my wife fought for me and they allowed me to go into a mode that allowed me to breath and just monitored if I wasn't getting enough breath, then assisted.   That way I did my own breathing during the day.  At night they switched it back to full assist mode.  Again the chief lung doctor said it was much better if I breathed on my own.  It keeps the muscles strong and speeds recovery.

Also, while I was still in ICU, my wife would move/stretch my legs and feet several times a day.   This was from the urging of the ICU physical therapist.  If you don't do that, all the muscles relax and stretch and it is very hard or even impossible to get them back.  There was also a brace to wear that kept my feet upright instead of drooping.   I won't lie, they hurt.  Both the stretching and the brace hurt, but I think they were key to keeping my legs stronger and flexible.

After ICU, while in Physical Therapy they had a bicycle that would pedal for you, just to get your legs moving.  I got on that whenever I could.... even when it was not PT time.  You have to be careful not to get too tired, but I worked hard in PT and recovered quickly.

So what was the result of all of this?

I went into ICU April 13th.  I was in ICU for 2 weeks, then in a halfway care for 2 more weeks.  Then I was in a hospital physical therapy ward for 3 weeks.  Then I went home and did outpatient PT for 4 more weeks and then they released me as I was walking fine with a cane by then.

Now 5 years later, the only things I have to remind me of the ordeal are my tracheotomy scar, my feeding tube scar and my mental scars.   My legs aren't as strong as they used to be.  I lost a lot of muscle mass and haven't rebuilt it all.  I still go biking, hiking (for miles) and even carried my 30lb son on my shoulders around Disney Land (this was about 1 year after getting out of hospital).

Early days

I had been admitted to the ER on Sunday and on Monday they were doing tests trying to figure out what was wrong with me.   There are 2 conditions that are similar, one is GBS and the other I can't remember the name of.  It's important to know the difference as the treatments are totally different.

GBS actually eats away at the nerve sheath (which is basically the insulation) so that the electrical pulses going down the nerve escape out.  The other disease has a problem with the last gap between the nerves and the muscles.  They did a painful nerve test to determine the difference.  I don't think it is normally that painful, but it was excruciating to me.   It's the worst pain I've had in my life.  But it was necessary to get the treatment right.   Use the wrong treatment and you actually make it worse.

So once we knew it was Guillain-Barré Syndrome they gave me IVIG which is an experimental treatment.  Basically GBS is an auto-immune disease which attacks your own nerves.   IVIG is a concentrated concoction of antibodies from thousands of blood donors.  IVIG Wiki .  These help boost your immune system and stop your body from attacking itself.   Every night for 5 nights I had the IVIG and it seemed to help.  Again my body seemed to react poorly to it as I had a hypersenstive reaction when it was active.   My back felt like it was on fire from laying on the bed.

By this time I couldn't move my legs at all and I couldn't lift my arms very well.  I could still move my fingers and hands, but that was about it.

Now we had learned that GBS isn't too bad and does reverse.  And we read that in only 30% of patients is the condition bad enough to require a breathing tube.  Basically if it progresses far enough, it'll start to paralyze the diaphragm and restrict your breathing.  I was having more and more trouble breathing.  We didn't really realize it at the time as everything was overwhelming, but it wasn't because of the GBS, but rather the advancing pneumonia that was causing it.

I kept fighting to breath on my own, which is good for your lungs if you can take it.  My wife talked to the chief lung doctor at the hospital and he said the longer you are on a breathing machine the longer your recovery is.

I hadn't been eating very well as I was too weak to eat.  We think the doctors/nurses didn't realize that fact as my wife had been eating my food since she was starving too.  Finally after 4 days we got the issue raised properly and we decided to put in a feeding tube.  I had already lost 20lbs or so and starting at 145lbs, there wasn't that much to lose!  As they were inserting the feeding tube I started producing lots of excess saliva in reaction to the tube coming out of the back of the throat.  I was too weak to get rid of it and it was affecting my breathing.  Finally, they had to intubate me.  That's the last I remember for a while.

 

My wife later told me that it was quite an ordeal trying to get me tubed.  Apparently I was fighting like mad and it took many people to try and hold me still while they put the tube in.  I guess my fight response had kicked in and with adrenaline pumping I used all my remaining strength fighting it.

Introduction

5 years ago now (wow), I was traveling in Kazakhstan to adopt my son and I came down with a really bad flu.  It developed into Guillain-Barré syndrome.  The GBS symptoms were clear once I know what they were.  Numbness and tingling (at the same time) in both the fingers and toes, and weakness in arm and leg muscles.   It's an autoimmune disease that attacks the lining of your nerve cells so the signals from your brain escape and cause pain, rather than making it to your muscles.

I'm hoping to tell bits of my story that might help others get through their journey.  I want to preface this whole story with the fact that I've made a full recovery, with no lingering side affects and no noticeable weakness.  I hope that some of the things we did can help others with their recovery.

Luckily we had traveled back home from Kazakhstan before the flu really developed and I was at home, very weak, barely eating and then noticed something odd.  My toes had started tingling.... and then later my fingers as well.  I was also having trouble walking, but figured it was just because I was so weak from this nasty flu.

A couple days passed and I kept getting weaker.  Finally I was having terrible pain in my back on Friday night and we finally went to a 24 hour clinic to have it checked out (which I have actually never done, so I know it was bad).  They weren't positive what it was, but recommended I go to the ER.

When at the ER I was diagnosed with Bronchitis, given some pain meds (
Percocet) and an inhaler and sent home.  (Later, I wished I was more insistent on my symptoms, as I think they were so busy in the ER they missed it, whereas the clinic had noticed the GBS symptoms!)  I was actually able to sleep some on Saturday night because of the Percocet, but the pain relief only lasted about an hour (more on that later).

Sunday the GBS symptoms got even worse and I could barely walk to make it to the bathroom.  At that point we hobbled to the car only just making it and drove down to the ER.  This time there was no waiting as I couldn't walk by the time we got there and they came out to the car and pulled me out and immediately took me inside.  I had intense pain in my abdomen and asked for pain meds and they gave me morphine which did nothing for my pain.  They gave more until they said they couldn't give me any more.  It had no effect.

Turns out my body metabolizes away most pain meds.  After thinking about it I remembered when I was 15 and had my wisdom teeth taken out.  They tell you to count down from 10 and I made it all the way to 1.  This puzzled them and so they gave another dose and count down from 10 again.  Again I made it all the way to 1.  It took a third dose to finally put me out.  I weighed 110lbs and they had given me the dose they'd give a 300lb person!

I think I finally passed out from the pain, or they finally got me sedated... I don't know which.  But I was admitted to the ER and later moved to the ICU.  They didn't yet know what it was, but they knew it was bad.   My journey with GBS had begun.