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Submitted by PatientsEngage on 18 September 2020
Roli in a checked top in an outdoor setting

Roli Terway details a harrowing first person account of being affected with Guillain-Barre syndrome, a rare neurological disorder, where doctors had to fight long and hard to keep her alive. Read her struggles with repeated lung collapse and progressive paralysis.

I was a happy, hyperactive, gregarious 13-year-old school kid. I used to love climbing trees, doing cartwheels and jumping off heights. I was also a Bharatnatyam dancer and a hockey player. Who knew a common flu would snatch all the things I passionately thrived on.

One day, a few days after a road accident, I returned from school feeling uncomfortable and feverish. I had an excruciating pain along my spine, from the back of my neck to my tail bone. The next day I woke up and I was not able to move my right arm. Maybe the numbness was there because I had slept on my right side. But as the day progressed, other disturbing symptoms began to appear. My right leg had now become stiff and frozen, followed by my left leg. Movement of my right leg stopped and then I was barely able to move my left leg too. I was also Soon after, I started having difficulty in breathing. I was totally spooked out. I thought I was going to die any moment. And the worst part is that the doctors thought the same too!!

A flu attack

I was rushed to HAL hospital as my Dad was working there. But preliminary tests and examinations bewildered the doctors. They just couldn’t figure out what was happening to me. Meanwhile, my nails were turning blue. I was unable to talk. Though I was not fully unconscious. My breathing had become extremely laboured. A lot of phlegm had collected in my lungs. The doctors tried to suck it out with the help of a catheter, but even after trying for an hour, they were not successful. My condition was deteriorating.

That's when my sister remembered that I had complained of a headache just before this episode started. Maybe it could be connected to the brain.

So the doctors at HAL suggested that, "We can try taking her to NIMHANS (National Institute of Mental Health and Neuro-Sciences)." They immediately called up NIMHANS and the doctors there said, "Bring her over immediately."

To go from HAL to NIMHANS was a long distance over bumpy roads. It was late in the evening and raining heavily. I was in the ambulance with the drip in one hand, an Ambu bag (hand-held device to provide oxygen) over my mouth and nose to keep my lungs from totally collapsing, and some needles in my legs. It was the worst drive of my life, an absolute nightmare.

The doctors were waiting and ready when my ambulance finally reached the hospital. They asked a few questions and quickly examined me in the ambulance itself and said, "her lungs have collapsed, we need to operate her.....do a tracheostomy and put her on a respirator (ventilator) immediately." My nails had all turned blue and my body was turning blue too due to lack of oxygen in the blood, as my lungs were not functioning.

Diagnosed with GBS

It was at NIMHANS that I was diagnosed with a rare neurological disorder called Guillain-Barre syndrome (GBS). The condition is believed to be triggered by an acute bacterial or viral infection. The disorder usually occurs a few days or weeks after a person has had symptoms of a respiratory or gastrointestinal viral infection. Weakness and tingling in the extremities are usually the first symptoms. These sensations can quickly spread, eventually paralyzing the whole body.

My hands, legs and lungs were paralysed. I had to be put on a ventilator immediately to survive. A tracheostomy procedure had to be performed on my neck. The doctors had almost started operating me in the ambulance itself because we had lost so much time. Generally a tracheostomy operation takes about 45 minutes, but in my case it took more than 3 hours because I barely had any oxygenated blood left in me. My whole body had turned blue and I could not move as my hands and legs were paralysed.

I remained in the ICU at NIMHANS for about 2 months. It was the worst phase of my life. Imagine, you cannot move your hand and legs. You’ve got tubes, wires, injections and needles all over your body. The worst is when you can’t breathe. Every few minutes, they had to keep sucking out the phlegm which was being formed in the lungs. I tried giving up many times and would sometimes just beg, "Let me die.....I don't want to live." But destiny would pull me through via a very young dedicated doctor, my neurologist Dr R Sundararajan. He is the one who never gave up on me. So many times the other doctors would leave and go saying "she's no more" but he wouldn’t give up. He would help me breathe, sometimes one gasp at a time, and kept pulling me back from the jaws of death.

I am one living person who has been declared dead 24 (or 27) times back then and am still alive and kicking till now.

Path to recovery

But with huge efforts on the part of the doctors, and my will power, I began improving. After nearly two months, one day the doctor said that they will make me sit down. He asked me, “What do you hate the most.” I said, “The Ryle's Tube.” (a thin tube inserted into the stomach through the mouth or nose for feeding). “Ok, tomorrow we will make you sit down, remove the Ryle’s tube and you can drink water in a glass,” he told me reassuringly.

I also had the physiotherapist visit me 2 times a day regularly for passive exercises. They would hold my hands and legs and keep bending and stretching it, as I was incapable of doing any movement on my own. Slowly, I started improving. I started moving the thumb of my left hand. It was a huge achievement. Then my lungs started getting ok, but were still quite weak. Lots and lots of physiotherapy and tons of injections later, I was sent home. I still could neither sit up or even turn on my own. But at least I could breathe on my own without a ventilator.

A couple of times when I was unable to whoosh out the phlegm, I started getting choked, and had to be rushed back to the hospital. Since the hole in my neck (tracheostomy) was closed, the doctors had to insert a catheter from my mouth into my lungs and suck out the phlegm. This suction machine was my saviour, but it was a very tricky and difficult thing to do as it would suck out even the air along its path. The catheter had to be inserted and removed quickly as I would already be short of breath. But it had to be inserted correctly and all the way till the lungs.

Suffered a relapse

Barely 3 weeks after coming home, I collapsed again, and was rushed again to NIMHANS, and was admitted straight into the ICU. Again they had to do a tracheostomy and put me back on the respirator. I had a relapse of Guillain-Barré syndrome (GBS), but this time they were able to arrest it before it struck the left side of my body.

I remained in the ICU with the respirator and the doctors fighting to save me almost everyday from death for about 2 months again. Because I was on the respirator for so long, my voice had changed. It became a heavy, gruff not typically girlish voice. But that was the least of the concerns at that moment.

Rare patient

Meanwhile, word had spread in the medical circle that I was a rare Guillain-Barré syndrome patient. So I had doctors visiting me from other hospitals to study my case, symptoms, signs, diagnosis, treatment, and follow-ups. My medical history and records were documented in NIMHANS and were also sent to France where the disease was first found in 1916 by Georges Guillain and Jean Alexandre Barré. Either the GBS patient dies due to respiratory failure, pneumonia, cardiac arrest, or can recover from it either in two months, two years, or 20 years. In my case, unfortunately, I am now 54 and have not recovered from GBS even after 40 years.

Till now, my right side is pretty weak. I am unable to use my right hand. The sensory nerves are all fine. They were fine even back then. I can feel hot and cold. Only my motor nerves are affected. So also my right leg is extremely frail, especially below the knee. But I can walk. I have become quite dependent on my left hand and leg, which are stronger. My confidence has improved, my ability to do things has bettered tremendously.

I feel I have got a second lease of life. I am making the most of life. I have worked in different roles. I have diverse interests. I love cooking and rustle up innovative dishes. I am a big party person and love planning parties.

Scare during Covid

The outbreak of Covid did get me worried because it is a viral infection impacting the lungs. My first reaction was to wail, “Oh my God, save my lungs. It better not happen to me again. If I fall sick, who will take care of my parents, both of whom are 80 plus.”

But then I thought, “If the virus does attack me again, maybe it will reverse the process and I could become ABSOLUTELY (physically) normal again!!

After all, staying positive is very important to live a happy life!!