Miracles and madness of life

I had a strange childhood. In my early childhood, I masked my unique feelings and emotions and hid it from my parents.

When I started getting partial seizures doctors thought they'd do an MRI and the scan showed a tumour had grown more than five times from a tiny dot from a previous  MRI. Shouldn't they have watched the tiny spot? They neglected thinking it won't harm in any way. My father went to most hospitals across India for the symptomatic brain tumour. After fifteen days of admission,  when the doctor saw I was reading "Minority Report " in the hospital bed he denied doing the surgery and told me “Come at the last moment when the tumour grows to the size of a Deus ball” it was also added that there was a chance of getting paralyzed for life.

My father sought out a tiny nursing home in Kolkata with minimum facilities where ultimately the craniotomy was done in 2006. 

Within four months I had strange symptoms and vascular tumours were detected in my liver but due to lack of money, we didn't get treatment. Meantime, tumours grew and studded the liver in a way that transplant was the only way out. 

I always felt captivated when I heard the lines " Mutation is the key to our evolution It has enabled us to evolve from a single-celled organism into the dominant species of the planet. The process is slow, normally taking 1000 and 1000 of years. But every few hundred millennia evolution leaps forward"

I had never loved any character as much as I loved Wolverine with his enhanced physical capabilities and powerful regenerative ability -- the healing factor. 

I had endured two episodes of intense pain and in the last one asked the doctor to get euthanasia done. It was so painful.

But the magic of myth guided my doctors and my life turned around.

When I read the story of Prometheus creating men, I never knew it would change my life. Initially, it was a sunless world, with land, air and sea mixed together reigned by a deity of Chaos. Prometheus was entrusted with the task of sculpting Mankind from mere clay.

 He went to make them wiser and better but was filled with grief as he found them living in caves holes shivering with the cold because there was no fire, dying of starvation, hunted by wild beasts and by one another.

In order to better the lives of his creation, he went into direct conflict with Zeus and when Zeus withheld fire he disobeyed him and stole fire from heaven as a gift to Man. Zeus, the ruler of Mount Olympus had no compassion for the man and he meted out punishment for this daring crime to Prometheus.

For this rebellious act, in his rage, Zeus chained Prometheus to the Great Caucasus Mountains where an eagle was set to feed upon his ever-regenerating liver.

I was diagnosed with a rare disease von Hippel-Lindau or VHL. It is a genetic form of cancer. VHL patients battle a series of tumours throughout their life. VHL may occur in up to 10 organs of the body with a possibility of neuroendocrine tumours.

I found hope as I remembered my maternal grandmother's words, 

Devi  Parvati sculpted a son from some clay out of a pond to guard the door of her palace. Ganesha stood as a sentry as Devi went for a bath. When Lord Shiva tried to enter he drove him back and all other Gods. Lord Shiva cut Ganesha's head with his trident. As Devi Parvati learnt of the tragedy she was ready to destroy the universe. To appease her Lord Shiva agreed to bring back Ganesha to life and grant him divinity. As the head was lost in the battle his companions went in search for a first living being they saw, it happened to be an elephant. Lord Shiva did the first mytho-historic transplant surgery and Ganesha was brought back to life.

After the transplant surgery, Lord Shiva is believed to have given Ganesha an elixir to drink. One cannot help speculating if this was some potion containing an anti-rejection medication.

In a similar way, I got a new lease of life through a landmark liver transplant with the funds acquired by donations. But then my father perished and my foxy uncle took our house from us in a cunning way and we were left penniless and homeless.

These days we are aware that the liver is the only organ in the body endowed with the power to regenerate itself after large portions of it are removed. Liver functions normally even when as much as 70% of it is removed and can grow back to normal size within a few weeks provided the remaining 30 %is healthy. Thus, a living person can donate a liver out of affection and go back to normal life in a matter of days. This transplant is safe and possible due to this uniqueness.

This is also why half livers transplanted into recipients are very successful since they soon grow to normal size.

It was then that my real tough times began and we had two choices ...death or preservation of life. Not only we faced shocking poverty where we didn’t have money for food the next day, but I acquired MDR- TB living in lousy cramped houses and changed houses seven times hounded by landlords but ended up with 15 surgeries with the rarest brain tumours.

I understood the frightfulness and the oddity of my nasty lingering illness and its larger economic implications...the humiliation of asking for financial help, money concerns for food, medicines and rent as if not just physical suffering was enough.

 My brain tumours are the rarest ones. A fellow remarked after he saw the picture of the scan of numerous lesions scattered throughout my brain,

" You have more tumours in the brain than people have lice in hair.''

After I returned from a cyberknife of the right side of my bilateral Trigeminal Neuralgia I asked help from an elite lady who has already earned her name but she desired to bask in the glory of her deeds being choosy... which duty to do… which will fetch more attention of the whole country and told me she could arrange for my immunotherapy because she knows Dr Randeep Guleria, the director of AIIMS...I was speeches about how people can be narrow-minded not knowing the larger world around them.

Immunotherapy works by boosting the immune system so it works harder or smarter to find and attack cancer cells. whereas, immunosuppressants are drugs or medicines that lower the body's ability to reject a transplanted organ just like any bacteria or virus.

Also, I'd like to mention I know Dr Guleria pretty well because he diffused the bombs of MDR TB in my lungs.

These days people understand only their own troubles and see their own perspectives. Soft-brained, weak-minded, chicken-hearted people get the best attention whereas a warrior is like an elephant in the room like something everyone is aware of, but which is being ignored because everybody finds discussion about it uncomfortable. I am afraid the differentiation between diseases, comparison of lives will stop when pigs fly.

While the world wages a war against COVID 19 my war intensifies.

There is a concern that immunocompromised patients are at a greater risk of morbidity and mortality due to COVID-19 infection, although data on liver transplant patients is limited at present [6].

Immunosuppression strategy during the COVID19 pandemic 

Although there is a concern that organ transplant patients may be at a higher risk of COVID-19 infection, there is no evidence as of now to modify the immunosuppression protocol. Standard immunosuppression should be followed in the post-transplant period until further data is available.

Follow up post-transplant.

Patients should follow up with their respective centres as usual. It is strongly encouraged that the patient should avoid hospital visits for routine follow up and consult online via telemedicine.

However, those patients with post-transplant emergencies should attend hospital as usual and should be provided with necessary standard care by the transplant team.

Recipients with symptoms such as fever, cough and breathing difficulty should be evaluated for suspected COVID-19 infection as per the national guidelines.

- a message from my doctor Dr Sanjiv Saigal, Senior Director Transplant Hepatology at Medanta the Medicity.

Thus, I assume being a prisoner in your own home isn't a good idea but a sensible one until it's safe outside.

 Prometheus unflinchingly bore the cruelties and the tortures inflicted by a bird of prey eternally, but so have I. Perhaps in the face of life’s mutability, its unceasing and unforeseeable vicissitudes if I face life with spirit, courage and boldness my Creator will grant me the much-coveted healing powers of Wolverine and then I will be the saviour of mankind. If not in this life perhaps the next but I tell you I will be a superheroine doing good for the world.

Image credit: Akash Sharma. 

The picture was taken with Dr Guleria in 2013.

From:https://timesofindia.indiatimes.com/blogs/warrior-princess/miracles-and-madness-of-life/