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.