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).