My Guillain-Barré Summer
I wanted to write this down for anyone out there that might be going through this. I know I read every thing out on the internet as I was looking for positive stories.
The drama starts the day before I felt any symptoms...
Friday 7/1/2016:
I was in great shape. I had been running some 5k races and feeling like I was getting faster. I had a goal for the last race of the summer of breaking 20 minutes. Something I had done 4 years ago but that was when I was 46. I had just turned 50 in April. Still, I felt I had it in me. I was not an old man yet.
I ran some fast quarters and 200 yard sprints at the local track on Thursday and felt great. I went back the next day (Friday) and ran some more. Still feeling good, in fact, feel great...these are the fastest workouts I've done in a long time.
Saturday 7/2/2016: Woke up and felt okay. Wanted to do a morning 3 mile run so I changed into my shorts and running shoes and started to run down the block and then down the street. My legs felt strangely heavy, especially when I was trying to lift them up to take a step. I thought it was just sore muscles from the hard workouts I had done. I abort the run and walk home, something I had never done in the thousands of runs I had done.
Sunday 7/3/2016: Woke up and legs still felt heavy. I went down to the track because I wanted to rip out some workouts. I walked onto the track and pressed the timer button on my watch and started to jog. Within 5 or 6 steps I had to stop suddenly as both calves tightened up to the point of extreme pain. I couldn't believe it, I actually hobbled to my car and drove home. I told my wife that those workouts really messed me up because both of my calves were really, really tight. I still thought that they were just sore from the hard track workouts.
Monday 7/4/2016: Woke up on this day and calves were really tight and forced me to hobble around again. I also noticed that my feet were numb and tingly and my hands were numb and tingly. I took my boat out for a ride to the beach with the family and basically stayed with the boat and walked in the water around the boat. It was easier for me to walk in the water than it was to go on land and visit the beach. I was starting to get a little worried about my hands and feet and their numbness.
Tuesday 7/5/2016: Woke up this day for a 90 mile drive to New Jersey (from NY) to work which I do once a week.
My legs again felt unusually heavy and my hands and feet were more numb and tingly. I could barely walk and basically just shuffled. My calves were really, really tight. I had to be extra careful when driving and give myself extra time when braking as it was actually difficult to lift my foot to press the brake pedal.
I went to lunch with my boss and we walked out to his car. He asked what was wrong and I told him I think I may have pulled a muscle. We ate sushi but my hands now were really numb and I got really scared when I was having trouble with the chopsticks. I couldn't eat anything and my boss asked if everything was all right. I said "Yeah, just not hungry".
We went back to the office and I knew something was wrong. I left for home right after we got back because I was afraid I wasn't going to be able to do the 90 mile drive home.
I got home and told my wife that I was going straight to bed because my legs hurt and I was really tired. I went to sleep at about 6 pm.
Wednesday 7/6/2016: I woke up and things had gotten worse. Hands and feet more numb and tingly than ever. I was now very concerned. I thought this might be Guillain-Barre because my father had it in 1978 and passed away from it. Yes, that's right. This was turning into a freak show.
I told my wife that I thought I might have GBS and that I think I should see a doctor. She suggested going to an urgent facility to which I agreed.
We went to the Urgent Care around 2 pm and I told the doctor that I thought it might be Guillain-Barre. She said she would take a blood test but thought it might be rhabdomyolysis because of the hard workouts I described to her. She took some blood and said she would get me the results today.
Urgent Care called about an hour or two later and said blood tests were fine and that if things got worse to see my doctor.
I asked my wife to make an appointment with my doctor and she did for 7 pm that evening. Things seemed to be getting worse faster and I really had trouble walking and my hands were now weak.
It was now about 3 pm and I told her I couldn't wait for the doctor's appointment.
We went straight to the Emergency Room at our local hospital.
We waited in the emergency room for a couple of hours and I told the ER doctor I wanted to rule out GBS, Of course, he didn't think it was GBS and told me so. He ordered a slew of tests which included MRI of the head and neck, Cat Scan of the head and chest, blood tests. I'm even scheduled for an echo cardiogram because my heartbeat was fluctuating from 40 beats a minute to 60 to 70 beats a minute.
The ER doctor consulted with a neurologist (I suspect through a phone call because I had not seen him yet) and he ordered a lumbar puncture. This is a needle in the spine where they draw out spinal fluid and test it. Guillan-Barre is a confirmed diagnosis if the protein level is raised (Mine was 79) and the white blood Cell count was low (Mine was Zero).
The ER Doc asked me if I had any stomach virus in the last month, or had the flu or had any vaccines. I answered no to all these questions but did tell him that I had a tooth infection two weeks ago and actually needed surgery (apicoectomy) to drain the infection and leave the crown of my root canal intact. Though he seemed to dismiss it, I believe this was the infection that kicked off the Guillain-Barre.
The neurologist showed up at the foot of my emergency room cot, out in the hall, and said he will start me on the immunoglobulin tonight. He says he hasn't gotten the lumbar puncture results back yet but thinks it's a good idea to get the immunoglobulin started because he thinks it might be Guillain-Barre. He said all other tests were negative so that rules a lot of other things out.
He said I would need to be admitted for the next 5 days (at least) as the symptoms can get worse and I may need to go into ICU for a ventilator if my breathing muscles were affected.
I spent a hellish night in the overcrowded Emergency Room, with my monitor beeping because of the cardiac arrhythmia and no nurse around that even noticed. My sister stayed the night and woke me up constantly to make sure I was still here.
Thursday 7/7/2016: Spend the day on a cot in the ER getting worse with my second bottle of immunoglobulin.
The neurologist shows up and tells me that the lumbar puncture confirms that I have Guillain-Barre.
He tells me it could get worse or it could stabilize (thanks doc!) but that I'm already on immunoglobulin so I'm getting the best treatment at this time.
I'm not totally blown away now that it is confirmed because I already knew that's what I had.
In the evening (@9 pm) I'm called for an echo-cardiogram because of my heart arrhythmia. This was a long test and was uncomfortable as symptoms seemed to have gotten worse.
I am finally admitted to a room in the hospital on the fifth floor directly from the echo cardiogram room. It was so nice to get out of that ER.
So now I was in the hospital and I had the IV dripping immunoglobulin in my arm. Things got a little worse on this day. I now could not lift my legs off the bed and I had so much trouble just getting out of bed. It was difficult to just turn over in bed. I could barely walk (with a walker, which apparently is a rare earth element in hospitals as it was very hard to get a hold of one), and I mean barely...it was a huge effort and took me a long time to get to the bathroom 10 yards away. It was also hugely tiring and once I got there had to rest for 10 minutes before I could do anything.
My hands were really useless and I couldn't wipe, I couldn't make a fist, I couldn't cut food, I couldn't twist a cap, I couldn't use my Iphone or the TV Remote at all.
So, I got through this day, got another bottle of IV and went to sleep.
As I went to sleep, I did notice that my hands felt really hot and my feet and legs felt hot and I knew that this was a good thing. For some reason, I felt like this was the nerves (myelin) rebuilding and that the immunoglobulin was working. I don't know why I thought this but I did.
Friday 7/8/2016: I woke up and things seemed to have stayed the same. Hands were the same, feet and legs were the same. Still had so much trouble just moving around in bed (flipping over) and it was really hard to just get in a seating position in my bed.
I tried to touch my thumb to my fingers on each hand and was unable to come close. I tried to do the Vulcan salute and couldn't move any fingers.
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| The Vulcan Salute |
Saturday 7/9/2016: Well, I noticed that things have started to improve!
I had the heated legs and hands during the night and when I woke in the morning I was able to move my fingers just a little better than yesterday. I was able to touch one or two fingers to my thumb. Slight improvement but an improvement! I also was able to lift my legs off the bed a little today.
My walk to the bathroom was still a shuffle (with a walker) but it was a little easier and better today.
More immunoglobulin today.
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| Bright Red Socks so I won't fall. I am a Yankees fan, grr! |
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| Bright Yellow Bracelet to let everyone know I might be going down! |
Sunday 7/10/2016: Things much better today! My fingers are coming back. I have more mobility and I can even cut my food. My walk to the bathroom is getting better (with a walker). I am able to manipulate some of the food and drink items on my own. I am able to press the buttons on the remote (something I could not do days before).
Again, more immunoglobulin, and more improvement. I can really touch all my fingers with thumb, manipulate the remote control...and I can do the Vulcan salute. I am feeling like everyday is getting better and I am optimistic. I walk to the bathroom (with a walker) and clean my whole body. I am less tired and I have more strength.
I finish my last bottle of immunoglobulin. I am a little nervous as it empties. I am afraid that this is what is doing the trick and now there will be no more. I am scared things will revert. The bottle runs out that night. For the next two days I check my hands and feet to see if things are reverting back.
Monday 7/11/2016: Feeling even better today. Fingers have really improved. Though a little weak I can do most things such as twisting caps, and opening juice boxes and pressing buttons on the remote.
I feel stronger and less tired on my bathroom visits. I even tried without my walker and the nurse came in (of course! I never see her when I have my walker) and she yelled at me. I apologize and laugh because if I'm going to get in trouble it's for trying to get better faster than they are used to.
Too bad, honey...I'm walking...tomorrow I'm skipping...and the day after that I'll do a cartwheel right past your nurse's station...yell all you want.
For the first time, I am thinking about getting out of the hospital.
I am so tired with the lady down the hall screaming all day and night. I am so tired of the nurses coming in all the time (either for me or my roommate) to dole out medicine, take blood pressure and stick a needle in you.
I'm starting to get the "I wanna get out of the hospital now!" syndrome.
Definitely a good sign.
Tuesday 7/12/2016: All is good. More improvement. PT's and OT's have been by over the last couple of days and have recommended a week of inpatient Physical Therapy where I stay in the hospital on the Physical Therapy floor. I agree as I want to get better fast. The only problem is that today I feel so good that I don't think I need inpatient, I am thinking outpatient.
The PT comes by and asks me to walk, which I do. She takes me to some steps and asks if I can walk up (and down). I walk up four steps and down four steps without a handrail. Two days ago, we had tried this and I could not get up one step. In fact, I couldn't even lift my foot off the floor.
I tell her I think I should like to do outpatient physical therapy and she said that would be her recommendation.
7/13/2016: Feel even better today. Can't wait to get out of this hospital. The day drags on and on and on....Then finally I am discharged at about 3:30 PM. I am going home!
I am so happy that I can walk, and I can go up the steps into my house. Later I dribble a basketball and shoot some baskets and feel and look good. There is some fatigue but I know that I can overcome that.
7/14 to 7/20/2016: I go to my own gym and walk in the pool. I do some easy work on some of the machines. Very, very easy as I don't want to overdo it.
I go to physical therapy three days this week but they really just have me doing a little work on some of the machines and stretching my calves. I do this for a week and then go on my own.
I shoot a lot of baskets and dribble. This is good for the arms, hands, and legs. I highly recommend this as a physical therapy exercise.
Here is a video on the day I came home from the hospital...5 days earlier I could barely walk and couldn't even sit up on the edge of my bed. I couldn't move my fingers.
Everyday is better...I am amazed that at this point one might not notice that I even had GBS.
Of course, I am touched with anxiety a bit... thinking of relapse or dreading getting it again. There is probably a post traumatic stress issue when you go through something like this. After about a week or two, I finally get through the anxiety.
August 2016: That's where we are now. I'm back to work. I'm working out. I'm even able to run. At this point, no one would know I ever had GBS.
Though I know...
...there is a little fatigue, a little cramping and of course, the obligatory residual numbness in my fingers and toes BUT I know if I keep working out this will all go away and the darkness of this syndrome will slip into the past. I still can't run very far or fast but I know this will improve.
What hasn't slipped into the past, however, is how thankful I am that I am here! I am alive! I am able- bodied! Somehow, through some gracious miracle and modern medicine, I am okay.
My father was not so lucky in 1978. There was no immunoglobulin...the approach was treat the symptoms and ride out the worst part until the body recovered.
My father's gift to me was that I saw what he went through. I knew all about this disease because of him. For crying out loud...my initials are even GBS (freak show again!).
I knew I had Guillain-Barre syndrome before I went into the hospital and because of that I was able to tell the doctors. I was treated that night and it could have saved my life or at least my body.
My father gave me life TWICE...for this I am thankful.
