Before starting this post, I want to tell each one of you here, reading either about the auto immune diseases or specifically about the GB Syndrome. That, the therapy that is done for any problem by the Doctor is only 50%. The rest 50% lies in the hands of the patient itself and his/her family members. How you view the sickness, treatment & how much faith do you have on the Doctor, healing powers of the medicine and staff and how much faith & trust you have within yourself of seeing yourself as coming out of this whole "I am sick" thought --> all this drives the rest 50% of your health. Even if you are the family or the patient, this applies to all. And the much I have seen since childhood, nobody failed by putting in his/her own 50% in the most complete manner possible.
This is a journal entry, a few weeks after the most learning experience of my life and of course for my family and near and dear ones as well. And I would go into a little bit of background for that as well.
The new year 2013 started with a bang for us. 31st Dec' 2012, the new years eve was differently exciting this time, we weren't going for an outstation trip like the previous 3 years, rather were going to
enjoy a New Year's Eve Party. And the party was at our place. So, by the usual time, we came back from office....then friends started coming in, brought the usual Vodka & Scotch. Tequilla was special this time and food was to be ordered over phone, so no preparations were required at that end. Finally the time came...and there was a reverse counting...or not..I forgot. Anyways, we made merry, play, fun, dance and enjoyment till 3 a.m. in the morning. Then people went to sleep and in a flash, many of the awake ones were were startled by some horrifying sounds of snoring. The chuddy buddies of 25 years were singing the Lori in unison. But the hellish drunk and tired we were, all went into slumber quickly.
In the morning, the first morning of this fantastic new year, that had come in for all of us, despite all the warnings and threats about D-day in Dec 2012 by the world media. I woke up and prepared the first tea of the house. A few guests were also awake by then. And we started the new year on the
usual chirpy note with friends. But something wasn't alright for me, I lacked some strength in my body. After a couple of hours, it seemed clear, that something was surely not right and I went to see a local Doctor by noon. The Doctor wasn't too much worried about it and asked for a few tests to be done the next morning. The strength in my arms and legs was diminishing by the minute and till late evening, the situation was worse. I was loosing strength over all my limbs and wasn't able to walk independently now. Not able to eat myself, hold anything, walk myself...anything at all etc.
Next day morning when I woke up, it was worse than last night. So it seemed it was progressively getting worse. On 2nd Jan, I again went over to see a Doctor with the help of family & friends, as I could not walk or drive etc. This new Doctor was also not too much worried seeing my situation and said, no need to admit, get a set of few more tests done and take him back home. The third day, I was immobile and couldn't move even with the help of family and friends. And my wife went to meet the Doc with friends to show the reports and consult. He said, if the situation is getting bad further, we should see a Neurologist. She came back with an ambulance, took me with them to the hospital and then I again met with other Doctors(Neurologists) and various tests were done. All this took the whole day and then the final diagnosis was done. And the Doctor's said, this is due to something known as
G B Syndrome. They said, we don't know exactly why it happens, but we do have some kind of medication for this. They said, we are sure, this is the problem. And they had conducted a test
Ok, family and friends consulted amongst themselves and decided about the future course of action. They wanted the treatment at another hospital and not this one where I had now gotten admitted already. And it was already late in the evening. So they worked towards it, and shifted me to that hospital, by around 1-2 am.
And then started the most eye opener experience of my life. Getting admitted to the ICU there after, to be very true was very scary. I was first time inside the hospital, with none of my family/friends around. And, had I had any strength left at that point of time, I was so scared at the inside view of the ICU, I might have just walked/ran out of there. But, I couldn't even move the tip of any of my finger, leave about walking.
And, the ICU crew, quickly stripped me, changed me into the blue hospital dress, punctured me at a couple of places and in less than an hour inside, I had many tubes and pipes and wires going through/around me, a constant beeping sound on my head told everyone I was alive and kicking from the distance. I couldn't sleep the whole night for even a minute. I wanted to be knowing of all the things happening, my mind wanted to be alert all this while, to be able to see whats happening, everything. All this time when others were doing so many things around me, concerning me.
After a few hours, I guess I got a breather and a little relaxed in mind, and in the morning between 7-8 am for sometime, I slept. Woke up, when I heard a lot of people around me and saw a Doctor say, nothing to worry, we are just putting an open line through some vein in your neck. I said cool, that's nothing, happens daily, am used to it, ha. But, the Doctors and the whole staff were very good, true professionals and they did all their work brilliantly.
Well, not to go into the nitty gritty's of the whole hospital ritual of those 2 weeks, the salient things were.
1) I was suffering from G B Syndrome. I got admitted to Kailash Hospital Noida.
2) I was administered the Immunoglobulin G (lgG) for 5 days based on my weight proportions.
3) For the whole duration plus another day, was kept in ICU and there after, one more week I was in the hospital private ward before being discharged.
4) The ICU staff were awesome like the best in the world. And I salute to all the work they do and the way they discharge their duties.
The night shift was from 8 pm to 8 am. And the staff nurses used to be working without a moment of shut eye and used to be working with such diligence, I rarely used to see them sitting for a few minutes the whole night.
5) I used to be awake generally for the whole nights, sleeping only in the mornings for 2-3 hours.
6) To know, I have people, family and friends all around, sitting outside the ICU used to be heart warming. My daily routine was to wait for the visiting hours in the morning and evening and take rest in between times. Only once it happened, that I slept for a few minutes during the visiting hours.
7) The physiotherapist used to be working with me from the 2nd day I think, twice a day for 15 to 30 minutes or so.
8) When I came back home, I still needed my friends to support me and I wasn't walking independently. And it took me another few days at home to get back to independent walking.
I was definitely scared for the initial 2 days, when it struck me and I didn't know what it was. And after that, in the hospital, for the initial 2-3 days, I used to get weak sometimes, when my family members used to come inside to meet me in the visiting hours. And after 3 days of administering the medicine, I was able to start moving my finger tip, then next day my hand a little and that's when I knew, I am recovering.
Then after that, there was no looking back. I used to keep trying to move my limbs as much as possible. The effort I had put in, in those days, lying on the bed was the most in my life I have ever tried anything. Ever in my life. And the thing I used to try on one day, next day that used to be happening and it used to boost my enthusiasm so much, that I can't tell it to you. With each passing day, my fingers started moving, then thumb moved a little...then hand a little, legs a little. All this took very less time to type, but it used to take a day back then. But, the days were good.
From the day 1, when I saw the first Doctor, i.e., 1st Jan, I was
on leave from office. I joined back for half day on 31st Jan for the
first time and kept on working half days for the next 2 weeks. From 18th
Feb, I joined office full time.
I did have fallback days after joining office, someday tired me too much, after walking and climbing stairs etc and some Saturday tired me with excess driving etc. but it was a wonderful self discovery journey, that I was upon.
After almost 3 months completion on the diagnosis, am still continuing physiotherapy exercise everyday(ok, at least 4 days in a week) and have also started jogging
for a few minutes everyday. Doctor had asked me to start swimming when
the season comes and am already enrolled to one, would start going in a
day or two.
And the most important thing I learn t is :
Medicine is only 50% treatment. At least 50% of the treatment for any sickness, small or large, is done my the patient's own perspective towards life, attitude of living and positivity all around, the attitude with which the patient gulps down the daily medicines, with which he/she meets the visitors, in general, the way of looking at where you are in life. Please mark my words, it does matter and it matters a lot.
Live life, cherish life, love life. It's yours only once and you are actually living it and it isn't a rehearsal.
So, again, to reiterate, by God's grace, timely diagnosis, right medicine which did suit me and wellwishers in life, which gave me the positive perspective of life every minute made me reach where I am today.
So, I assure you, it works for each one of us, just a matter of thinking and living it right.
Love......
Pic : A big thanks to some of the ICU staff at Kailash, that tended to me day and night. Friends, you are doing an awesome job and we appreciate you all a lot for whatever you are doing.
