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Guillain-Barre Syndrome


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I will change the text color to green on all of the parts I have added to make them easier to find.
 

I first started to suspect something was very wrong with me on June 20, 2001.   I was sitting in a classroom in Maryville, WA, attending a class that would help prepare me for my transition out of the U.S. Navy.  It was after 10 AM and I had just sat down upon returning early from a break.  I began to become very aware that my entire body was tingling.  It was a sensation very similar to the tingling feeling you get after the blood starts to rush back to a limb that has “fallen asleep”.  I got up and left, driving the 15 miles back to Naval Station Everett in Everett, WA.  Because I was stationed in Everett and worked closely with the people in the Fire Department, I stopped in to have them check me over.  Their EMT asked me what my symptoms were as he checked all my vital signs. 

The week and a half prior to having the EMT's at Naval Station Everett check me out I had been feeling run down, as if I had a cold.  I was having difficulties sleeping, felt extremely run down with nearly no energy, and had been having migraine style headaches.  The EMT told me all my vital signs were as should be; nothing appeared out of the ordinary.  Because they could not find anything out of the ordinary and I continued to insist something was wrong, the Fire Department people walked me across the street to the Branch Medical Clinic to get me a walk in appointment.

 

After the Navy doctor, an Ensign, saw me we discussed my symptoms as my vital signs were retaken.  After a lengthy discussion, the Ensign called and spoke with a neurologist at the Bremerton Naval Hospital.  The Ensign and neurologist
 decided that my blood would be drawn and sent to the laboratory for analysis and I was to go home and get some sleep.  When the blood results got back the next day, the Ensign would call me if there were any abnormalities.

 

After I got home, I noticed that I was growing weaker and decided to go to bed and try to sleep off what ever it was that I had.  As I lay in bed my body began to ache.  It was a muscle ache and it kept me from sleeping.  To try to relieve the ache I got into the bathtub and soaked in water that was as hot as I could possibly stand.  It helped and I was finally able to get back into bed and get some sleep.  After a few hours, I woke to returned discomfort that was more severe than before.  I spent the remainder of the night soaking in the tub and getting an hour or twos sleep before having to get back into the tub to soak.  Each time I climbed out of the tub I noticed I was still getting weaker and had to exert myself more just to get up.

 

I woke up on 21 June feeling even weaker than when I had finally been able to get to sleep.  I peeled my blanket off the bed and went to the living room to stretch out on the couch and try to relax and get some more rest.  The phone rang and when I answered, the Ensign was on the other end of the line telling me my liver enzymes were a little elevated and that I should come back to the clinic to see him. 

 

Getting dressed proved to be a difficult task even though it was only a pair of sweats and a t-shirt I had to put on.  To get to my truck I had to walk out a door and down four easy steps.  To my horror, I had to hold onto the handrail to keep from falling down.  Driving my old stick shift truck and pushing in the clutch proved to be yet another very difficult task, which I was barely able to complete.  I recall feeling as if I had been completing very physically demanding tasks for hours that had sapped all of my strength and leaving me weak.

 

When I got to the clinic in Everett, I could not climb the stairs and had to use the wheel chair ramp while holding onto the handrail to get to the door.  Once inside I was taken to an exam room where the Ensign met me with the lab results in his hand.  While we were going over my symptoms again to see if we could pin point why my liver enzymes were high, we both noticed I was having difficulty speaking.  My speech was slurred as if I had been on an all night drinking binge.

 

The Ensign sent me down the hall to see a Naval Reserve Commander who was currently working in the clinic.  The Commander looked me over and reviewed my symptoms.  What he then said I will NEVER forget, he looked me in the eyes and said he thought I was making up the symptoms to get out of work.  I was stunned.  As the Commander left the exam room I was beginning to be very concerned that that no one had any idea what was wrong with me and I would continue to get worse.

 

I knew that I couldn't just go home for fear that I would get worse and not be able to get back to town, that short trip up the wheel chair ramp had really taken it out of me.  So I went back to see the Ensign and pleaded that he help me.  I told the Ensign what the Commander had said he felt was wrong with me.  I insisted this was real, I wasn't feigning these symptoms and I really did need help.

 

By now it was into Friday afternoon and the clinic was gearing up to shut down for the week end.  Because no one would be at the clinic to see me if my condition worsened, the Ensign contacted my Command to arrange to have me transported over to the Bremerton Naval Hospital in Bremerton, WA.  The wait to catch the ferry was a long and uncomfortable one for me and no matter how far back I reclined the seat I could not get comfortable.  I tried to get a nap but the discomfort I was feeling made it impossible.   We finally boarded the ferry and made the drive to the hospital without any major problems.

Upon arriving at the emergency room at the Bremerton Naval Hospital walking the 50 or so feet to the emergency room door was nearly impossible and I had to use the wall to hold me upright.  Once inside the door a Navy Corpsman noticed I was having difficulty walking and wheeled a wheel chair over to me.  The Emergency Room staff checked me in then I waited my turn to be seen, sitting in the wheel chair up next to a wall for support.  When an exam table became available I ambled awkwardly in the direction I was led down a hall.  When the doctors came in to see me I really began to notice it was becoming difficult to speak clearly, it was as if I was extremely tired and my speech was difficult.  As I repeatedly described my symptoms I was repeatedly asked if I was at risk for HIV.  Despite my answering “no” to their HIV question blood was ordered drawn to test for HIV and all the types of hepatitis.  When a Magnetic Resonance Imaging (MRI) machine became available I was directed down the hall to have my melon checked to see if MS was responsible for my symptoms.  Upon completion of the test I went back to the ER and spoke with the doctor again before being admitted.

 

I spent a very uncomfortable night in the hospital awaiting results from the many tests that had been run.  During the night I was unable to make it to the bathroom and had to buzz the nurse to bring me a bedside urinal.  During the night my condition went down hill far enough that I was admitted to the ICU first thing Saturday morning.

 

My first day in the ICU was spent doing numerous resting and getting lots of prodding and poking.   My doctor told me that he thought I had GBS and that a few tests were going to be run to make certain.  That day, Saturday June 20, the hospital neurologist was called at home to come in to perform an emergency EMG/NCS to help determine if GBS was the culprit. After he arrived at the hospital I was placed on a gurney and taken up to his office for the test.

The electrical shocks that were used during the test were terribly painful.  I recall laying on that gurney hoping every shock that I had just received was going to be the last and had to suppress a groan each time I received another.  I’ve had several of these tests conducted since being released from the hospital to track my recovery and none have been as painful as the first.

After he completed the testing he was confident I had GBS but I would recommend to my doctor that a lumbar puncture to be performed to test the protein level.  The neurologist did not tell me the results of the testing; he left it to my doctor to tell me news.

After my doctor spoke with the neurologist he came into my ICU room to tell me what was quickly taking over my body and scaring me out of my wits.  He told me I had Guillain-Barre Syndrome and that I could expect to be in the hospital for a few weeks and then could expect to get a months convalescent leave to recover from the ordeal.  Although I had absolutely no idea what GBS was it was nice to have a name for what was wrong with me and to hear that it was treatable.  Hearing that in time I would be back to my old self and be able to return to active duty was the best news I’d had in a few days.

After the doctor left I asked to use the telephone to call my folks to let them know what was going on; I’d not spoken with him yet to tell them something was seriously wrong with me and that I had been taken to the hospital.  Using the phone proved to be very frustrating because I had horrible difficult using my hands to push the buttons on the phone.  The phone call to my parent’s house was long distance so I used a prepaid card that was in my wallet to call.  I had to hang up and try again several times because I kept hitting the wrong numbers.  After I finally entered the PIN and my folk’s number correctly I ended up getting their answering machine.  I knew dad was at work, so I hung up after electing not to leave a message and called him.

After I got dad on the telephone I told him that I was at the hospital and sick, but that I would be ok.  I told him they expected me to stay in the hospital for awhile and that when I was released I was going to be weak and would be given time off from work to recover.  I told him I was thinking about coming home and might need an air mattress put down stairs once I was there because I might be too weak to climb stairs for awhile.  He said sure thing and that he hoped that I got to feeling better. 

It was a few days later when a nurse walked into my room with a telephone that my mother reminded me that I should have told them where I was and given them a phone number where I could be reached.  She was worried that she couldn’t reach me and ended up calling the American Red Cross to get help in track me down and finding out what hospital I was in.  Mom had spoken with the nurse before talking to me and learning that I was getting worse.  When mom heard my voice that was now very slurred and nearly impossible to understand she knew something was terribly wrong and jumped on the first flight she could get from Kansas City to Seattle to come and see me.

  The actual lumbar puncture procedure wasn’t horribly painful for me, especially compared to the EMG/NCS that had happened a few days before.  The doctor and nurses rolled me onto my side and gave me a little local before taking any spinal fluid.  My Dr succeeded on the first try and all I really felt was pressure.  Thee worst part was the pain I had after the local wore off.  It wasn’t horrible pain but it certainly got my attention.

 

The IVIG that I was administered arrived quickly; there wasn’t a supply available at the Bremerton hospital.   The IVIG arrived and they began administering it within my first few days in the hospital.  The process wasn’t painful for me at all, but I do recall asking for a blanket because I was cold.  All of my fluids and nutrition we given to me intravenously, so it was just a matter of “plugging” the IVIG into my arm and hanging it up on the tree.  Of course I never actually touched the round container the IVIG came in, but it appeared to me to be made of glass.    While it was being administered I would close my eyes and will it to work so that I could get better.  I was scared because every day I could feel myself growing weaker and loosing the ability to move. 

My first few weeks in the hospital was when I began to have the sensation of burning up.  It seemed that nothing could be done to cool me down!  The nurses and my parents tried several things to make me more comfortable.  When a room became available that had a window that could be opened for fresh air I was moved.  All the top bedding was removed and I was covered only with a pillowcase.  That helped, but still didn’t do enough.  Next the nurses acquired a fan and left it running on high at all times.  To help make me more comfortable wash cloths were soaked in cold or ice water, wrung out, and then placed on my forehead.  While the relief was only temporary the cold was cloth was the most comforting to me. I spoke with my parents not to long ago about what they remembered of the time I felt like I was burning up and they told me that despite my sensation of feeling hot the room was always comfortable and my skin was cool to the touch. 

 

Within just a few days after being transferred to the ICU I was unable to feed myself or write and very quickly became bed ridden.  The pain I was having was rapidly becoming nearly unbearable.  Just laying in my bed was a very painful thing.  To help with the pain of laying in bed the hospital rented a special bed with an air mattress from the Hill-Rom Company that automatically rolled from side to side to prevent pressure sores.  The bed also had two features that are good for those on a ventilator … percussion and vibration.

 

Within a week of my onset I had to be placed on a ventilator because the GBS had affected my diaphragm.  I had difficulties with the tube running down through my mouth and my doctors decided I would be given a tracheostomy.  I don’t recall it, but my parents and medical records indicate that I rested better after having the tracheostomy completed.  I had many of the complications associated with those who are dependant upon mechanical ventilation to survive.  Pneumonia and mucus plugs were a constant battle for me, especially the mucus plugs.  One mucus plug in particular is ingrained forever in my mind.  I was in Washington still on the vent and my mother had gone back to her hotel room for the night.  My nurse Cheryl was in my room with me “spelling” so I could communicate when all of the sudden I could feel I was no longer able to get a breath of air.  Cheryl quickly found what was wrong and tried unsuccessfully to clear the mucus plug.  Soon there were people all around my bed working as a team to remove the plug.  I felt myself growing light headed and desperately tried to get someone’s attention to have them get my mother to come back so I could tell her goodbye before I died.  A respiration therapist by the name of John was finally able to clear the plug.  I am not sure what he had done differently from everyone else, but there is no doubt in my mind that I am here today because of John.  Thank you John, from the bottom of my heart.

 


Pneumonia and Thrush

 

Pneumonia can also be a very nasty little critter when it sets in.  I had two bad cases of it, one that has left scar tissue at the bottom of my right lung which still shows up in my chest x-rays.  To combat the pneumonia I was placed on antibiotics.  The antibiotics were fairly strong and killed off the bacteria which is normally in my mouth and allowed thrush to set it.  I found the medication and procedure for treating thrush to be a very distasteful and unpleasant one.  On a few occasions I fought the nurses to prevent them from putting that nasty stuff in my mouth.

  

Dreams

The dreams that I had were out of this world.  I am sure it had to do with the huge amount of pain killers I was on, but at the time they all seemed so real I would have sworn they were real.  Of course none of these dreams really happened, but I thought you might find it interesting to hear what my mind was coming up with.

 

One of the first dreams I recall having involved one of my doctors and a nurse.  I was being taken (dreaming) to a special room that was used only on Sundays to pamper the patients in the Bremerton Hospital.  After the many days unable to get out of my bed I was excited to see there was a toilet in this room and a huge tub that had a chain and pulley system which would lift me up off my bed and then lower me down into the water.  As I sat excited at the prospect of sitting on a toilet I noticed steam rolling off the water in the tub.  I was most excited by the idea of sitting on a toilet after the many days of using a bed pan.  (for some reason my father came up with a nick name for the short fracture pan I used, he called it the "low rider")  Just as the nurse had every thing prepared and was getting ready to set me on the toilet, in walked my doctor to whisk me away so I wouldn’t get my turn.  I held a grudge against that doctor until after I left Washington and realized it was only a hallucination.

 Another one of my dreams involved one of my nurses who worked the night shift while I was still in Bremerton.  I had the hallucination that she needed to go home for some reason and decided to take me with her so she could continue to look after me.  For a reason unknown to me she took me up to her attic and put me in a hammock for the night, which was surprisingly comfortable.  In my dream I saw there were hockey sticks and golf clubs belonging to her husband up there, along with numerous boxes and a window looking out of what appeared to be a two story building facing a major highway.  It was the same highway that I used to travel every day on my way to work.  No, I never did ask if she had a two-bedroom home with an attic near a highway or if her husband played golf and hockey.

 

Things really started to get strange.  I would get the most terrible pain in my feet that in my diluted mind, was due to the numerous needles and pins that were sticking out of them.  Shortly after I discovered the needles, I discovered a phantom set of arms and legs that I had a limited amount of motion in and I could even feel them.  When a nurse would roll me to a side one of my extra legs would fall of the side of the bed and actually cause me pain!  When the pain was at its worst, I was able to reach down to my feet with my extra set of hands, pull the needles and pins out of my feet, and drop them on the floor.

Thrush was the subject of another of my dreams I would have sworn was real.  Twice a day at nearly the same time the thrush in my mouth would grow to the point it would completely fill my mouth and start to go down my throat and begin choking me.  To prevent this I had to reach up with my “extra” hands and pull the thrush out of my mouth and roll it into a ball.  The thrush was the consistency of Silly Putty and came out in a never-ending string.  I rolled it into a ball as I removed it from my mouth, with the ball usually ending up the size of a grape fruit before I was through.  That ball always got dropped on the floor off of the right side of my bed.  I had to resort to pulling the thrush out of my mouth after repeatedly being unable to make my nurses understand I was choking on the thrush.  How they weren’t able to understand what I was talking about as I sat there pulling it out of my mouth distressed me greatly.  Couldn’t they SEE it?   It never even occurred to me for a second that it was all in my mind.  After awhile I began to wonder why no one ever saw the big balls of thrush that I had been dropping on the floor every day.

 

 

One of the long running dreams I had involved three cats.  It had been years since I had any pets so I wonder where the idea came from.  I dreamt of three pitch-black cats, all were female.  One was the grandmother, one the daughter, and one the grand daughter.  The youngest was still a kitten and she always curled up between my knees.  Her mother sat on my stomach and spent a lot of time purring.  I could hear and feel her purring while she was there, it was very comforting and I always enjoyed it.  The oldest was a very large and very old cat that had difficulties getting around.  While she was with me, show crawled between my neck and pillow and made me quite uncomfortable. 

 

During the nights I was some how able to get a can of tuna out of my apartment in Lake Stevens, WA (roughly 60 miles away) and place it under the head of my bed for them to eat. It was the strangest thing because I would feel my bed bringing me up to a full upright position before I got the can, leaving me with the sensation that I was about ready to fall out of bed.   The one can of tuna was always enough to fill them up.

 

The pain of the cat under my neck often times became unbearable and I had to reach up with my “extra” hands and try to pull her out.  Because my extra arms and hands were very weak she could often foil my attempts to dislodge her by digging in her claws.  (I am sure the folks from Hill-Rom would have been less than pleased by a cat digging its claws into their expensive air mattress!!)  When I was successful, I knew of her return by the telltale tug at my sheets as she climbed back up.  I always felt horrible to know she was returning because I knew I was hurting her when I pulled her out of the bed, but I had to do it to stop the pain she was causing me.  Yet when she returned she always started purring to me when her feet touched my mattress.  I always felt so guilty because despite the fact I hurt her she continued to show her love and affection by purring to me. 

 

Kansas City VA

 

After spending 5 weeks in the ICU at Bremerton Naval Hospital a Medical Board for the Navy decided that I would be medically discharged from the Navy and be transferred to a VA hospital where I would receive care and eventually the therapy I was going to need. Because my home of record was in Missouri, it was decided I would be life flighted to the Kansas City VA Medical Center, which was approximately 65 miles from home.

Before I was loaded into an ambulance that would transport me to the airport I was given a heavy sedative that would put me out for the entire trip; I wouldn’t be awake until after I arrived in Kansas City. 

As I started to come out of the sedation I heard my mothers voice telling me that I was in Kansas City at the VA, I had slept the entire way.  The ambulance had just dropped me off at the hospital and was in the process of turning me over to the hospital.  The nurse from the Medical Intensive Care Unit (MICU) was a guy by the name of Ruben.  When he introduced himself to me he told me his name and that he was the best looking nurse in the whole hospital… he proved the be a barrel of laughs during my stay at KC and was always good for a joke or two. 

After arriving at the KC VA I was given an EMG in my MICU room and there were no signs of activity in any part of my body.  The Neurologist came and spoke with my parents and me and recommended I receive Plasmapheresis to be followed by a chemotherapy drug called Cytoxan.

 

His theory behind using  Cytoxan was that it would weaken my immune system that was attacking the myelin sheath, allowing my body to begin healing.

 

Shortly after I received the Plasmapheresis treatments and began taking Cytoxan I began to show signs of recovery.  The Doctors were unsure what caused the turn around, so we really do not know if the Cytoxan played any part in my recovery.

 

There are a lot of side effects associated with Cytoxan, so PLEASE before considering to take it research it and speak with a Dr about what the benefits and drawback from are this medication.

 

 My First Real Food

 

I had been taken off the vent and was breathing well on my own when I was given my first taste of real food again.  My nurse that day was Ruth and after speaking with my physician she began to feed me ice, and then Jell-O.  When that went well and appeared to be going down the right direction she had a plate of mashed potatoes and gravy sent to my room.  Let me tell you, those potatoes were some of the best I have ever had, however, I don’t know if Ruth or I was more excited about my eating my first meal.

After eating my plate of potatoes without any difficulty, I asked Ruth to call my Dr back and ask if I could have a McDonald’s milkshake.  After the word came back that it would be OK, my father dutifully drove to the closest McDonald’s and picked up my Strawberry milkshake.  I quickly became full; my stomach apparently shrank after all those months of not sitting down and eating a full meal.

The nurses on the ICU decided they were going to get me a lifesaver, but were concerned that I might choke on it.  I still laugh to myself when I think of how they ran a piece of floss through the center of the life saver, tied it off, then looped the floss over my ear so that I could enjoy it with out having to worry about me choking on it.  After being given stern directions NOT to bite down on the lifesaver, the nurses all walked out of my room and left me to enjoy that wonderful cherry flavor!

After several months of not chewing the muscles in my jaw and my tongue were very weak.  Any thing with more consistency than Jell-O or mashed potatoes was beyond my ability to chew and swallow.  My tongue was actually weak enough that if food got between my jaw and my cheek I couldn’t push it out with the tip of my tongue and had to get some one to help.

Minneapolis

 

Minneapolis VA Medical Center After I was successfully weaned off of the vent I was transported to the Minneapolis VA Medical Center in October of 2001 by an Air Force plane that has been modified to transport medical patients. (The VA hospital in Minneapolis is a huge one, with an excellent spinal cord injury unit.  Before leaving Kansas City it was determined that my GBS most closely resembled a spinal cord injury for therapy purposes, so off to Minneapolis I went!) After a HORRIBLE overnight stay in an Air Force hospital near St. Louis, MO, I made the last leg into MN.

 

It was a difficult flight for me, there were several take offs and landings as the plane made its regular stops to pick up and drop off passengers I began to get ill.  Part of the problem was that I wasn't getting my normal constant supply of Ensure and water....... all of the 20 odd meds were being poured into an empty stomach.  I was miserable when I arrived in MN, but after my Ensure was continued I began to feel better.

 

The next morning was a very busy one for me.  I had speech therapists, Dr's, Physical Therapists, Occupational Therapists, shrinks, and the IV team who all visited me.  After being assessed and answering what seemed like 100's of questions everyone retreated to a conference room to develop a plan of attack to make me better.  My therapy was to begin the very next morning.

 

My second day consisted of my therapy being done in my room while a wheel chair was found to get me to and from the rehab floor.  Two days later I got my electric wheel chair, which proved to be very difficult to learn how to operate.

 

Upon arriving in MN, I still had no use of my hands to grasp anything with, and couldn't even hold my wrist up if my arm was held horizontal to the ground.  The chair was designed to operate by manipulating a short joystick that was set up on my right side where I had the most return.  At the time I didn’t have enough return in my hands to hold my wrist straight or to curl my fingers around the joystick so learning to operate my chair proved to be a challenge.   Able to move my forearm at the elbow, I moved my hand so that I could place the crook between my thumb and index finger against the joystick.  By moving my arm forward and left or right I was able to learn to operate my chair with lots of practice.

 

          My first day to take it out for a spin proved I needed a little more practice.  Up until then I had been wearing open toed boots that kept by toes from dropping while I was in bed, but after running them into a wall when trying to turn into the door to Occupational Therapy.  I smashed a big toe hard enough to draw blood and after that day I wore my shoes any time I was in my chair.  If ever a back up alarm were truly needed, I would have been a likely candidate.  Often times I would have to get a nurse or therapist to back me up if I had gotten myself into tight quarters.

 

The electric wheelchair allowed me to gain back some of my independence, yet I hated the thing all the same.  Every time I was transferred out of bed and into my chair I was reminded that there was something seriously wrong with me and that I was totally dependant on others to survive.

 

Part of my weekly therapy sessions included going to Recreational Therapy 3 times a week.  There we did such things as play board and card games, send e-mail (Heidi, I can do this with my hand now!) and browse the internet, and learn how to use my wheel chair and still be able to do everyday things such as go shopping or out to eat.  I learned how to get into and out of elevators, open doors from my wheel chair, and operate those wheel chair accessible doors that operate with the push of a button you find in so many new buildings today. 

 

My first outing in my electric wheel chair both ladies from Recreational Therapy, Laura and Heidi, took me to the nearby Mall of America to go watch the newly released movie Harry Potter on the public transit system.  What an adventure that was!  The ramp that was on the bus made me an absolute nervous wreck as my driving ability was less that great.  After several attempts we made it up and onto the bus with out much incident.

 

Once we arrived at the Mall, the girls had me access the doors and operate the elevators we came across.  (The sheer size of that place amazed me!  If you've not been there it’s worth the trip for the girls and for the guys there is a Cabela's nearby you can go visit while the girls shop!  Or if you prefer there are several sports bars and even a Hooter's on the third floor!)  We made it to the movie theatre where I enjoyed my first movie since before coming down with GBS, Harry Potter and the Sorcerer’s Stone.

 

The trip home was a little easier getting onto the bus, except for this woman who just would NOT get out of my way to make it easier for me to get my wheel chair to the area where it could be strapped in.  While attempting to get my chair where it needed to be I ran her foot over with my 200+ pound wheel chair.  I bet she gets out of the way next time.

 

My next outing with Heidi and Laura was to be to go out to eat.  I really was NOT looking forward to this trip as I was pretty self conscious about the adaptive equipment I had to use to feed myself, I hated the thought of everyone staring at me.  When the day came that they asked me where I wanted to go I told them HOOTERS.  Well that kinda threw a monkey wrench into the works because they didn't know if they could take me there or not, so I had a few weeks delay in having to go out to eat.  That suited me just fine because I wasn't looking forward to eating in public.

 

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