How I survived a fatal paralysis (GBS Syndrome) & lived to tell the tale!

It all started with a horrible diarrhoea. I had to visit the toilet 30-40 times a day for 2 days straight. I took a lot of ORS and a couple of injections to cure it but the fluid content in my body had already drained to a large extent & I should have visited the hospital to replenish the same. But since I was feeling pretty well, I didn’t (Mistake 1). And the very next day, I decided to order Chicken Biryani from Swiggy, so that I can feel energetic again (Hit Wicket).

The chicken was a little raw but I ignored, as usual!

The next morning, as I got off the bed and tried to stand on the floor, I fell flat on my face. My right knee had stopped functioning and there was heavy tingling sensation in my right thigh. I was very confused, and a little scared. I hopped on 1 leg & went to the kitchen to take ORS again. I lied down to rest but nothing improved. So, I hired an Ola & somehow descended 4 flights of stairs and got inside the cab for Sir Gangaram Hospital. They added fluids, Potassium salts but instead of improving, even my other leg had completely failed. I called 2 of my B.Tech friends who lived nearby (Prakash & Daya Shankar). The emergency doctors tried everything but nothing seemed to work. By now, the tingling sensation had completely enveloped my lower limbs; Right thigh, left ankle, right ankle, left thigh in that order. I was completely immobile, waist down.

The doctors then consulted their senior and I was asked to undergo a Nerve Conduction Test (NCT). Here, they pass current through different areas of your body to check how the nerve cells are responding to the external stimuli. The result: Nerves Responding Perfectly! The senior doctor used all his experience and told me that I was suffering from a very rare disease called GBS (Guillain-Barre Syndrome). I had never heard of it before, so I called home but no one had ever heard of it either. The raw chicken contains a virus whose biological structure resembles that of the human nerve cells. When the antibody goes to kill the foreign virus, it fails to distinguish between the two. Hence, it starts killing its own nerve cells. And one by one, all the organs start failing. If not treated on time, it can be fatal. 
By now, the tingling sensation had spread to my upper limbs and the only thing still moving was my head.

The senior doctor told me that, sometimes the effects of GBS can’t be observed in the NCT in the initial days. He told me that I had to be administered a lifesaving drug called IVIG and I had to be transferred to a semi-ICU ward immediately. The drug alone would cost close to INR 2 lakhs. I was shocked beyond belief. He gave me the option of shifting to Ram Manohar Lohiya hospital (a govt. hospital) so that the overall cost might reduce. But he also told me that the admission procedure there would be extremely tedious & time was a luxury I could ill afford at that time. I had to deposit INR 50,000 immediately, apart from the IVIG drug. The 2 friends worked frantically to somehow arrange a bed because it was all full. Oh and by the way, the cost of the drug was approx.. Rs. 15k per bottle (10 gm) and I had to be administered 13 bottles (twice my weight). And it had to be administered continuously, which would take approx. 3 days. When I asked the doctor if this would completely heal me, he said that was the last of his concerns. As of now, his only concern was to stop the virus spreading to my central nervous system (brain & spinal cord). My father arrived after taking the first flight from Ranchi. He was almost in tears looking at my condition.

At night, I suddenly started experiencing breathing difficulty. The doctor told me that the virus had spread to my lungs & I should be shifted to the ICU. So I was. I was immediately put on a ventilator. By now, I could only move my eyes, little bit of neck & my voice intensity had reduced to 20%. My dad was stopped outside the ICU and now, I was on my own.

The ICU was scary. The nurse was very sweet though. She kept encouraging me to not panic, as that tends to happen when people encounter the ventillator for the first time (they called it the NIV machine). It took the machine about 15 minutes to adjust to my breathing rate. The mask of the NIV machine is so tight that my nose started aching very soon. Since the nurse was nearby, when I moved my neck, she noticed. She tried very hard to understand what I was trying to communicate. After about 5 minutes, she finally understood, and added some tape on my nose to cushion the pain. But, just when you think things would improve, they gets worse.

11 p.m. - The sister told me that the staff were leaving for dinner and would return in about half an hour. I nodded. Ten minutes later, the pipe connecting the ventilator to my mask popped out! I tried to scream frantically but my voice could barely reach as far as my own ears. The fear of death made me reach out to crazy depths of my being to summon every last ounce of strength just for the next breath, and the next. I did this for at least 20 minutes! Finally, the sister came. Needless to say, she was stunned to see me. She apologized profusely. All I cared about was the oxygen. Nothing more.

The next day, my breath shortened further. And I could not swallow food or water. So, another pipe was inserted through my nose. By now, I had a pipe in all sorts of places, but I still wasn’t getting better. I could count till 5 in one breath, which is extremely short. A normal person can easily count till 30. For reasons I cannot fathom till date, I was shifted to an isolation ward within the ICU. I asked the sister how I would call her in case I needed something. She gave me a buzzer and said, “Press this button.” Excuse me?! Finally, it was decided that if I needed something, I would shake my head continuously, which would move the ventillator pipe just enough for it to be seen from the outside. I didn’t think it through though. Obviously, nobody would be staring in my cell 24/7 to notice the movement of the pipe. I could lay in a particular position for 20 minutes at max, after which my bones started aching very sharply and I needed to change my sleeping posture immediately. Sometimes, I would have to shake my head for half an hour for anyone to notice and other times I got the feeling that they had started getting frustrated at my repeated requests and hence, started ignoring me. One of them clearly told me that they have other patients to tend to, and they cannot cater to my needs every half an hour. The days would somehow pass, with the doctor visits & my father staying for around an hour. The nights however, were a nightmare. All night, I had to stare at the ceiling with nothing but empty thoughts and pinching questions flooding my brain. The first thought, why me? And the last one too. Tears had dried out.

Just for info, an ICU can be a scary place. But an isolation ward is hell. After I conveyed my pitiable condition to my father, my sister used to call the ICU ward every hour at night and would ask them to check on me.

When my breathing hadn’t improved even after 4 days, the doctor told me that a lot of mucus had gotten deposited in my chest. And I didn’t have the strength to cough it out, which was severely hampering my breathing. He was right. Even after desperate attempts to cough, I could hardly move my chest. He said he would have to operate my neck and insert a small tube to suck out the cough. The incision will be the size of a coat button (known as tracheostomy). After that, I would be completely dumb for around 15 days. My already stunted voice would be reduced to zero. This thought frightened me no ends. He asked the physio-therapist to use a vibrator on my chest to loosen the cough. But he said, he would anyhow perform the operation next morning. That night, I asked the nurse to keep tissues on both sides of my neck, so that I could spit out whatever comes out. And then, I mustered all my strength from every inch of my body and spit out whatever came out, all night long. I did not sleep a wink. The next morning, I was mentally prepared for the operation. The doctor had set-up his team & the equipment. And he came for one final check-up. What happened next was unprecedented. My breath had improved. My pulse had improved. My heart-beat had improved! The doctor couldn’t believe his eyes. And then he did the un-thinkable. He took me off the ventillator! And monitored me for the next half an hour. I was breathing naturally now. My breath count had increased to 8. He told me he had never seen this in his career, and never in the history of the hospital had an operation been cancelled after making all the arrangements. After that, at least 15 doctors came to check me. All of them wondered what I did in one night that my condition drastically improved. That night, I had made a desperate, soul-filled prayer to my lord, and she had responded. My sister had done the same (which I came to know later.) I was witnessing providence first-hand, and the joy that I experienced at that moment after undergoing 8 days of hell cannot be described in words. It was indescribable, surreal. Back home, my mother & sister couldn’t stop crying. They had held back their tears until then. 2 days later, I was shifted to the general ward! My mother & sister had also arrived.

Then, the pain started! My muscles had separated from the bones with which they were attached, and were hanging. My body structure had reduced to a mere skeleton with traces of muscle here and there. I went through another round of Nerve Conduction Test, and this time, the result showed GBS (AMAN variant). The doctor had pre-empted my disease for which he deserves a lot of credit. It was the 2^nd worst type of GBS after AMSAN, the only difference being that I still had touch sensation in my entire body throughout. Thankfully, that was not lost.

The pain was so intense that, sometimes, I used to faint. I dreaded nights the most. As soon as the clock struck 8, my pain would triple in intensity. I could hardly sleep for 1 hour at night as a result. I had started sleep-talking. I would eagerly wait for the first rays of the sun, as it would bring much needed relief.

This continued for the next 10 days, after which the doctor said that I could be discharged as there was nothing else he could do. My physiotherapy would continue for as long as it takes to fully recover. And that would be the major medicine apart from a daily injection (blood thinner). My right hand fingers had started moving slowly by now. My parents decided to take me home, as staying in the hospital was very troublesome (and expensive). After a lot of thought, it was decided to take me home by train. The hospital arranged an ambulance & with the help of a bedsheet & 4 people, I was transferred from the stretcher on the platform to my train berth. Similarly, with the help of some people, I reached my home. A LOT of people came to visit me & after a while I started feeling like a museum artefact. Hehe.

My love affair with the pain continued for approx.. 2 months, during which time I slept for an average of 1 hour per day. My right hand had started moving by now & a little bit of my left hand too. The physio would come every day to my home. My dad somehow arranged a hospital bed which had lifting mechanism because my mother & sister had developed intense arm pain as they had to continuously lift me from the bed & insert several pillows underneath me, whenever I had to eat or brush or sleep differently. I must tell you that even though I was a mere skeleton, I was damn heavy. Think of a dead body! During the next 5 months, there were occasions where I would get severe breathing problems, as some water would get inside my nose or due to gas build-up because of lack of any body movement. The pain would slowly reduce but the recovery was very slow. I took a bath after 4 months, when I was able enough to be transferred to a wheel chair. It was blissful, magical. It took me 7 months to stand on my feet (with the help of a walker).

Unfortunately, I developed a curved spinal cord (tends to happen when you are in lying in bed for eternity) and a foot drop in my left foot. The usual 90 degree angle between the leg & the fingers had got extended to 150 degrees. Both of these happened due to the money minded physio who did not cater to every part of my body, so that my ailment could be extended.

It has been 1 year and 3 months since. Today, I walk by myself (though for a short duration) even though the strength in my left feet & right knee are yet to return. The foot drop has reduced to about 120 degrees. Back pain is quite regular, and even though my fingers are shaking, I am able to write this long blog. I visit the physio everyday on a bike (sitting behind my dad). Overall, the scars have mostly healed. God forbid, if you have someone suffering from the same disease, this blog might be of some help. Because, even I have benefitted from talking to people who had already been through this, or worse.

But I would like to re-iterate 2 things: first, GBS is a family disease, it’s not an individual one. The lives of entire family get disrupted & you need a person to take care of you 24/7. Being on bed, with someone cleaning you, feeding you, and looking after you is the worst feeling in the world. You always feel like a liability. But there is nothing you can do about it!

Secondly, I have lost a lot of friends in the process. And that’s a good thing! Adversity is the biggest test of any relationship. And I am happy that I have been able to identify the strong ones (& the useless ones).

Lastly, even though my world has turned upside down, I am happy to still be a living part of it, with the constant support of my family & my loved ones. If you have any close ones suffering from the same disease, you can contact me anytime at the below mentioned number. Be safe. Be healthy. And don’t take your health for granted! :)

Mob – (+91) 8376064127