Guillain Barre Synrome And Stubborn Heart!
By Sandesh Savane • June 1, 2018
I was 27 years old; me and my spouse were leaving behind our one of the biggest ever bad times in our life. So, we were slowly making out our way to 2015 from our bad year of 2014, where we lost our newly born baby girl who was unable to survive due to Convulsion and left us alone.
In the beginning of 2015, we were having a good time. We started to go out to meet our relatives; we went to Nashik, Shirdi, Lonavala-Khandala, Pune, Sangli, Ratnagiri. As the time was passing by I got a new job in the month of April 2015 and I was very happy to have what I wanted. I completed one month on May 24, 2016, and I was planning to take one day leave on 27th May 2015 to attend my cousin (Rohan Pawar) brother-in-law's wedding ceremony.
It was Sunday 24th of May 2015; I was having a good time in my best friend's (Roshan Chafe) sister's post-wedding family function. I was normal from the start of the day but in the evening, I was feeling very tired and weak, I was never so much of tired and weak before. I took a shower and went to bed for rest and when I woke up from a small power nap, I was feeling the same what I was feeling before. I thought it could have been because of the work I had done in the whole day.
Monday, 25th May 2015, I was feeling very weak, tired and my eyes were having vision problems. Since the morning I was telling my spouse that I'm having some problem with my eyes and headache too. She was also got concerned about my health; we thought it could have been because of the yesterday's tiredness. I was having very rarely symptoms but couldn't think what it would be. We both thought it could be temporary and then I went to drop my spouse to the railway station for office and back home, took shower, had breakfast and went to the office on my CBR250R; I was facing difficulties in riding my CBR250R due to a headache and vision problem.
After reaching the office at Millennium Business Park, Mahape; I thought I would be fine soon, but still, as the time was passing by my symptoms were getting worse and worse. At lunch, I was having double vision, my left hands little and ring fingers were numb, tingling. In the evening, I noticed some weakness in my left leg and I couldn't walk easily, I had to lock it while walking and I was thinking that it could have been because of cricket as I had fallen down many times while bowling ball. In the meantime, I got a call from cousin my brother-in-law (Ashish Shinde) that he is coming to Kalyan with Pulsar PULSAR P220 for his cousin's wedding ceremony and he had a plan to go out for a night out to Marine Drive with my CBR250R. I was very happy to have him and his plan for a night out to Marine Drive. Throughout the day I was getting calls from spouse asking about my health and she was not believing that I was having various symptoms because I was rarely getting sick in a year.
Hence, the time comes to go back home and I was thinking can I able to ride my CBR250R due to the symptoms of my body. Then my collogue (Narayan Iyer) asked me for a drop till Dombilvali and I got happy to have him. He didn't know about my health condition and we started our journey to home. From our office, I rode CBR250R till Shill-Phata and then he wanted to ride CBR250R. I happily gave my CBR250R to ride him as I was afraid due to the unbalancing and tingling of my fingers. Narayan Iyer got out at MIDC area and then after I had to ride my CBR250R in any condition. That was my bad experience for riding because I was unable to grip handle and clutch while riding CBR250R, but somehow, I managed the ride till my home. Meanwhile, I was getting calls from Ashish Shinde so that he can meet me in between a place as he had not informed his parents that he was going with PULSAR P220 to Kalyan. So, he needs to park his PULSAR P220 without getting anyone aware. Somehow, I reached into my building and went to the family doctor; he checked my nerves, blood pressure and said I had low blood pressure and weakness. Then he gave me medicines and asked me to take a rest, he didn't know what was coming to me on the next day. Hence, Ashish Shinde's plan got canceled as I was asked for a rest.
Tuesday, 26th May 2016 when I was waking up and getting up from bed to standing I need to give extra efforts to do that. When I started to walk I got fallen down and I was so worried what was happening to me now. Yesterday's symptoms were so harassing to me now what was this I was asking myself, WTF I was unable to walk, what happened now. At this point, I had a hunch that something was wrong with me. I was getting so serious and trying to walk properly but every time I fell down, then I took the support of the wall, went to the kitchen and as soon as I left support from the wall I fell down again, now this time I was crying in a kitchen. I had another try but failed once again, I thought I got so much of weakness in the body so I should take a rest for a while. But anyhow my conditions were getting very bad and bad by the time. My left hand's grip was not coming properly; little and ring finger were not closing easily they were numb and tingling. After having rest, I was so worried that I asked my brother to bring our family doctor to home. The doctor came, inspected me and he could not find any serious as he was not a neurologist. He gave me an injection for my weakness and went. Then my in-laws came to see me; they are staying next to our building, now everybody got worried what was happening to me.
After one hour of injection; I was still unable to walk and then walked with locked knees. I decided that I need to take some serious opinion from doctor to see some specialist. Now I had to go four floors down then I took my brother to support me while getting down. Doctor told me to get hospitalized immediately; at that time, we were not aware of anything what was happened to me. I went to Chaitanya Hospital Kalyan East which is near to us; we went to emergency ward and doctor came to me who was MD. He inspected me medically and informed me that there could be two conditions to me as follows.
1. Hypokalemia (https://en.wikipedia.org/wiki/Hypokalemia)
2. Guillain-Barre Syndrome https://en.wikipedia.org/wiki/Guillain%E2%80%93Barr%C3%A9_syndrome)
Then he said I had to hospitalize immediately as per my convenience either Kalyan Metro Hospital or Fortis Hospital Kalyan. I decided to go for Fortis and immediately informed my HR about my hospitalization. She started the procedure for the medical and I got admitted. For the first time I was getting admitted in such a big hospital.
The process of admission got started and I was admitted to the emergency ward for temporary. By the time every doctor was coming to see me and asking the same questions. Then I got afraid why they all were coming to me and asking the same questions, did I get so serious or what, so many questions were coming into my mind.
They took my blood for the test, shifted me to ICCU and my journey for survival starts on 26th May 2015. In the evening Dr. Kavita Barhate a neurologist came to see me and she scheduled me for MRI scan to see whether my brain was responding to my actions, reflexes etc. By the time passing rapidly, my activities were getting stopped and I was totally paralyzed. At that night I was sent for the MRI scan which was for the first time to me and anyone can understand what it means for the first time and that too in the condition where I was unable to move my whole body. After MRI I was back to ICCU. My first sleep in ICCU was good.
On 27th May 2015 I was eagerly waiting for both blood test and MRI scan reports when reports came and it was normal. I was very happy that I will be alright in few days but I was not aware of anything that what was going in doctor's mind. I was asked for insertion of Urinary Catheter; OMG, this was needful as my mobility was stopped and this was not a pleasant experience. But come on yaar, I got worried ab kya kya face karna padega pata nahi, aisi konsi bimari ho gayi hai. They told me that they will take a fluid from my spinal cord i.e. Lumbar Puncture. I was sad and laughing too inside that I'm not done yet. In afternoon the specialist doctor came and the procedure started for lumbar puncture, I was so afraid then they gave me an Anesthesia in my lower back and done with a lumbar puncture, it was so painful, and thought WTF where I had come now. Still, yet it was not done they had given small anesthesia in my neck for the central line; it was really getting worse for me now.
Next day reports came and guess what it was a normal too, and then I was thinking what the hell was going on with me. Then neurologist Kavita Barhate asked me to undergo for NCV (Nerves Conduction Velocity) test, it is a measurement of the speed of conduction of an electrical impulse through a nerve. NCV can determine nerve damage and destruction. It was also a painful one, but what to do now I had to deal with it.
On 28th May 2015, NCV report came and it says that I was correctly diagnosed with a GBS – Guillain Barre Syndrome a very rare disease in the world, it is a rapid-onset muscle weakness caused by the immune system damaging the peripheral nervous system. It is one to two cases in 1 lakh people every year. Now doctors had come to some conclusion that they have to do some specific thing to me. Doctors informed my family about the possibilities of disease so that my family should be ready for anything. There was two ways for the treatment one is Plasmapheresis and second is Intravenous Immunoglobulin's (IVIG). Now my family had to decide whether to carry on with Fortis or a transfer to another hospital due to the financial conditions. My family decided to continue with Fortis and go for IVIG which was very costly as one 100ml injection is cost around 36-40K and course was for 5 days.
On 29th May 2015, I started my IVIG course day 1, I was happy that now I am going to be alright anytime. For one-day, doctors were giving me 5 bottles of IVIG that mean 500ml per days and every day after 2 bottles I was feeling dizzy, had a headache, low-grade fever etc. I got 26 bottles injected into me via a central line and kept on under observation for eight days in ICCU and two days in general ward where I was not comfortable under fan wherein I was in ICCU under an air conditioner. In that two days I was unable to sleep at night, one day I took medicine for sleep.
Frankly speaking, I was feeling that I'm going to die now during my hospital stay, it was very horrible feeling to me. The biggest thing to me was my Family, my In-Laws and Friends who were regularly coming to see me and motivate me every day (But actual me hum subki phati padi thi). The weirdest thing I faced during hospitalization was my moment with my dad when he used to come to see me and I couldn't able to talk with him, as he is deaf and I was paralyzed. I was unable to talk with him about sign language, I wanted to let him know that I'm alright now and I will be fine anyway, but I couldn't. One day we both cried at the same time when we both were unable to speak with each other that was a really bad moment for us.
Perhaps my happy time was my physiotherapy in a hospital as they were lifting my hands and legs to mobilize me and I was getting so much relaxed. When I got shifted to a general ward, I was stable to my condition and improving. But I could not sleep for those two days in the general ward. I was having a headache and unable to sleep so I had to take a medicine for a headache and sleep. I was very alone in the ICCU but in general ward, my spouse & family was with me and I was happy to have them.
Me and my spouse remembered that day when I was mobilizing in my bed and made me sit on my bed by physiotherapist, you all didn't know what I was feeling at that time because I had sat after 8 days and I got tears in my eyes, I got so much happy and could not believe it!! After that day she made me stand and OMG that feelings were awesome to me. But at the general ward, I was still having vision problems in eyes for seeing outside of hospital from a window. I thought I will be fine after medicines and all that exercises informed by the physiotherapist.
After 10 days of hospitalization, the time came for discharge and I was happy to go home but I could rarely move my body. I came at Fortis on my own legs but now I had to go on a stretcher, it was very weird feeling to go on the stretcher. Hence the process of discharge was started on 4th of June 2015 and my brother bought my clothes to wear, everyone was gathered at the hospital – my mom, dad, spouse, and brother, In-laws and Roshan Chafe, Suraj Chafe etc. they arranged an ambulance for me. My brother and Sagar Shinde (Bro-In-Law) helped me to wear my clothes. I was brought on a stretcher to ambulance and journey started to go back to my sweet home. I had never seen outsides atmosphere for 10 days and was in an air condition room, so it was very hot and humid outside in the month of June too. I was looking outside very eagerly like a newly born baby, everything was new for me. In ambulance; I was with my spouse, brother, and father in law. As soon as we reached our building, planning of taking me up at 4th floor was started. There were six people who took me to my home on stretcher cover and bedcover.
After reaching home, I got tears in my eyes but that was for happy moments because I was back in my home. In the hospital I was thinking, will I survive or not: but after back home, I was feeling very happy and relax although I was not moving.The very first day when I was back home, I was hungry for my mom's food and in the evening, I ate a rice and sprouts curry with a pickle. I don't know what was going on other's mind, but I was thinking of pursuing my CMA exam which was on 10th of June 2015. But it was my pure bad luck I can say, at that time I was not aware of the time span which I will be taken to recover from GBS.
Let me clear something, I was needed all the types of help for all the activities which a normal person can do independently. I was unable to do those activities for examples moving, bathing, brushing teeth, eating foods, wearing the clothes, lifting & holding anything, could not move and lift my body, hand, legs 1cm now my wife had to do change my positions for every 2 hours as per my convenience, sometimes I used to ask her for every half an hour.
A very next day the process of getting me from bed started. My brother helped me to get from very low height bed and put me in Iron chair and dragged me into the living room then my wife brushed my teeth, cleaned my face and fed a breakfast. After lunch, a physiotherapist used to come for PT sessions. PT sessions were very painful. I was regularly asking my wife and brother to search on GBS on google for remedies and assistance from GBS survivors but they were concentrating on my recovery only. Someday I asked my brother to pay mobile bills from internet banking then at that time I asked him to google GBS and after the search on GBS, I got the clarity and understanding on GBS. GBS patients must have patience while recovering and concentrate on the target. It takes a minimum time of 6 months and maximum 24 months to recover from GBS. In the month of June, the physiotherapist was concentrating on my muscle powers like a lifting of hands, leg, lower back but I was feeling fatigue and finding unable to do so. She was concentrating on CAT-CAMEL exercise more than basics exercise when I was very weak at that time and even they did not aware of the muscle stimulator machine which was a part of treatment in the GBS.
We did not aware of GBS at that time, what should be done and what care should be taken in GBS. Due to the lack of knowledge, the physiotherapist was not giving correct guidance and because of that I had a relapse in the first month only as I was recovering fast and physiotherapist was concentrating on heavy exercises rather than the basics.
At the end of June physiotherapist decided to go on vacation, then we asked her for another physiotherapist and she provided another physiotherapist who also did not have enough knowledge on GBS. In the meanwhile, we were trying for another physiotherapist from Google and we got another female physiotherapist from Ulhasnagar. My family decided to go for two physiotherapists in a single day, one in the morning and another one in the evening. The replacement was a sports physiotherapist and continuously stretching my legs, hands, toes, palms etc. like a sports person and the second one was good in guidance and exercises. We kept both for a month I guess, then we decided to go with only one physiotherapist.
For me both physiotherapists from Fortis Hospital are not professionals and had lack of knowledge for GBS, they damaged my muscles which was already damaged in GSB. The one from Ulhasnagar which was searched on Google was best in her knowledge but she was not that much of experience but compared to the Fortis Hospital Physiotherapists she was good.
For another way of recovery, we decided to go with Massage and Electronic Acupuncture therapy. Google gave us the person who was practicing for last 20 years in Kalyan, so we decided to go with him for Massage and Electronic Acupuncture therapy. Dr. Prashant Sawant is the name who used to give me the Electronic Acupuncture therapy for 15-20 minutes a day and Akshay Jadhav who comes to massage twice or thrice in a week. So, I was doing with 3 types of therapies for the speedy recovery.
With relapse in the very first month of recovering and after 3 months of regular therapies, my left hand and little finger was moving slightly. Then I got a feeling of recovery, I will be fine in another 6-8 months with this kind of slow recovery. I was happy with Massage and Electronic Acupuncture therapy, so I asked them for physiotherapist in their contact and they gave me Dr. Chintan Pujara who is the greatest find for me for PT sessions. He was best in the business as well as in exercises, his guidance was very professional and very helpful to me & my family. He joined me in the month of September 2015 and our journey begins for the speedy recovery, his exercises were brilliant in all manner like practically and scientifically. He used to give a detail information on each and every exercise and asked me to do on my own.
There were visible changes and movements in my body, he taught me each and every single movement to do routine work. Then he asked me to buy an Exercise Ball I.e. Gym Ball to develop my core muscles and also, he asked me to buy a Muscles Stimulator; it helps to strengthen weak muscles and with Muscles Stimulator, you can potentially electrically stimulate these resting muscle fibers to improve their strength. At first, he showed us how to use the Muscles Stimulator then later he asked my brother, spouse to use for at least twice in a day.
In the month of November, I was walking on my own with the support of my family member and walker, then one day he took me for staircase training in our building. But my efforts were very less due to the weakness so in the month December, he asked me to buy crutches to walk. It was very hard to walk with crutches at that time and again he taught me everything, how to walk with the support of crutches. He asked me to walk regularly at intervals so that my body can get used to it
After walking on crutches for 3-4 months, I was walking independently and doing regular exercises, then Dr. Chintan Pujara bought his wife Dr. Garima Pujara who is a specialist in Occupational Therapy. Occupational therapy (OT) is the use of assessment and intervention to develop, recover, or maintain the meaningful activities, or occupations, of individuals, groups, or communities. Occupational therapy can help to become more independent at completing daily tasks.
In the month of March 2016, he asked me to come to his clinic for Occupational Therapy where they were having other equipment's, accessories, toys etc. she was training for balancing exercises on half gym ball, catching practice of full gym ball, walking through incline and decline surface, how to hold a thing, how to pick a thing, put balls from ground surface to a whole, a children's toy to play with, clay to develop fine motor function of hands. I learned lots of practical things which I was not doing on my own like brushing teeth, buttoning clothes, grasping and controlling a pen, typing on a computer, Fine Motor Skills, core muscle strength for sitting posture. She used to give me the children's toy to play with my hand's gripping and moving power developments. Basically, I forget all these daily routine tasks and needs of life, also forgot how to use my organs in daily life. I went there up to June 2016 and then I used to exercise on my own in my home.
Late in the month of October 2016, I joined my school friend's (Rajesh Patil) gym High-Intensity Gym and started the basic exercises under his guidance as he is a professional trainer. He had come to see me in the month of July or August 2017 I guess, so he was totally aware of my health conditions. Basically, he was aware of my nerve damage and suggested the exercises and diet too. He was giving the exercises keeping in mind that I am a GBS patient.
The exercises were very different which was consist of PT and Gym, at that time I was aware of basic exercises, core muscles exercises etc. and with experience of my friend I started with all the small one like lifting dumbbells (I was not able to grip anything or any objects in hands), half squats with support rod (because I was not able to do squats on my own), standing leg raise frontside & backwards (balancing), leg extension (strengthening legs), lying leg curls, back extensions, back exercises, shoulder, chess, biceps & triceps etc. After completing the 3 months in regular exercises I was very happy to see visible changes in my movements & strength but not as like an as normal person can do. But I can do a full squat without any support and move ahead in lifting heavy dumbbells from 2.5kg to 15kg. Leg press from 2.5kg to 10kg then started a leg press where I developed my legs strength.
After having a visible change in my health, I decided to search for the jobs and look where I stand now due to the medical gap of almost 1.5 year. I was aware of the conditions where I will be rejected due to the medical gaps but I wanted to test myself and prepare for the interviews. But frankly speaking everyone was eager to know about the GBS but no one was ready to hire me. I kept searching the jobs side by side and concentrates on exercises for speedy recovery.
In the year of 2017, I was stronger than the year of 2016 and then in February, I got good news from my spouse that I am going to be a DAD. Actually, it was not planned but good news comes as surprise and everyone wants such sweet surprise. Then I got very serious about getting the job in hurry but anyhow was rejecting for the medical gap and got selected in the month of August 2017.
I am now very much happy with my life and happily living with my family, newly joined my daughter SARA and friends!!
This Guillain-Barre Syndrome is a scary business and can attack anyone, including children. If you want a good cry, watch videos online of various people battling incredible odds against this monster. Some of the strongest people I have ever witnessed are the kids (including myself) who are told they'll never walk again but still kick this disease right in the nose and reclaim their entire body.
My wife, my brother, my mother, my father & sister and all the in-law's family… everyone in my day-to-day life was incredible sources of strength and inspiration. I was able to overcome incredible odds and I am now almost 100% recovered.
As a GBS survivor and fighter, I want to inspire others to live fully with a positive attitude & never-give-up attitude towards the life.
Thank you very much for reading my story!!
Also, please watch my recovery video:
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