I consider myself extremely lucky for I have given death a miss not once but thrice. In 1993, I was at the Bombay Stock Exchange and later near the Air India building minutes before they were devastated by bomb blasts. I didn't know it then, but when the news started appearing on TV I realised how close I was to being blown to bits.
The third scare was a more recent one. Last year, on January 14, my ophthalmologist Dr Sneha Shah dropped a bomb on me when she said I had an autoimmune disease called myasthenia gravis. I had droopy eyelids. Suspecting that an infection was causing it, I went to see Shah. She ordered a blood test, which revealed that I had this rare disease that causes muscle and nerve weakness and has no known cause or cure.
My life, as I knew it, changed forever that day.
I was born and brought up in a bustling chawl in Girgaum, which is known for its camaraderie and rich culture. I worked in Castrol in the administration department as a clerk and took voluntary retirement a few years ago. But I remained active. I went on hour-long walks every day. At 52, I did not have hypertension, diabetes or any other diseases. So, the fact that I had myasthenia gravis came as a shock.
In this condition, the antibodies that usually protect the body mistakenly attack the neurotransmitter acetylcholine, which is responsible for muscle contraction. Muscles that control facial expressions, speaking, swallowing and chewing are usually affected. In patients with myasthenia gravis, the thymus gland, which plays an important role in immune system development, functions abnormally and sends signals to the immune system to attack the acetylcholine receptors.
A thymoma or tumour measuring 3cm was found on my thymus gland, and the level of acetylcholine receptor antibodies in my body had shot up to 11.6 when the normal level is 0.25. Soon, I developed difficulty in swallowing, breathing and speaking. The muscles in the left side of the body weakened and I had difficulty in doing my daily chores.
I consulted Dr Arun B. Shah, neurologist, Dr Marzi G. Mehta, thoracic oncology surgeon and Dr Paresh A. Jain, onco surgeon at Sir H.N. Reliance Foundation Hospital in Mumbai. I was told that a thymectomy or removal of the thymus gland would help, but because of my weak condition the doctors decided to wait. I was put on medication to control the antibody count, which proved beneficial. But when the medication was tapered off, my condition worsened.
Since February this year, I have had several bouts of severe breathlessness and developed myasthenia crisis, a life-threatening condition where the respiratory system fails. I was rushed to the ICU and put on ventilator. I stayed in the hospital for a week and underwent five sessions of plasmapheresis to destroy the antibodies, but as soon as I was discharged the symptoms reappeared. So, I was rushed to the hospital again. Because I was put on steroids, my immunity suffered so I developed an infection as soon as I stepped into the outside environment.
My wife, Suvarna, who is a teacher and daughter, Vaishali, who is doing her graduation in commerce, took turns to be with me. My extended family kept me in high spirits.
Though the doctors wanted me to go in remission and gain my strength before they could do the surgery, I insisted that they did it right away. As per my request, the surgery was performed on March 31 by Dr Marzi Mehta and Dr Paresh Jain at Sir H.N. Reliance Foundation Hospital. The doctors opted for a keyhole surgery rather than the traditional method of cutting the sternum bone so as to aid healing. The surgery was complex and risky because of the possibility of requiring prolonged ventilator support.
Post surgery, however, I didn't require any ventilator support. I felt very comfortable with almost no pain and was able to eat, drink and breathe easily. All my earlier symptoms disappeared, except the drooping of the left eyelid. Currently, I am on medication because of my compromised immunity. I am vulnerable to infections like genital warts and fungal infection of the nail and skin. As a precaution, I have been advised to avoid public places. But my quality of life has certainly improved.
I am sharing my story to encourage people with myasthenia gravis to not lose hope. I know I cannot work like before, but I have decided to use my time to study the share markets and I am earning a steady income. The constant battle between life and death has made me realise the need to simplify life and I am taking every day as it comes. My suggestion to all those who are battling a chronic problem is to accept the situation and make the most of it.
AS TOLD TO SWAGATA YADAVAR