The True Story of a Liver Transplant Recipient

The day I found I had a cancerous liver tumour, was the day I’d gone visiting my Gastroenterology, Dr Deepak Amarapurkar at Bombay Hospital to inform him that I’d successfully completed my two years drug therapy of Sofavir.

Sofavir is a wonder drug for Hepatitis C, the chronic liver disease I’d been diagnosed with for the past ten years. Yes, Dr Deepak Amarapurkar was the same doctor, who met with a tragic death by falling in a manhole, during Mumbai’s monsoonal deluge in August, last year.

Not a man to waste pointless emotions, I distinctly remember the bespeckled gentleman poring over my lab report, look up at me in alarm and say, “Your Alpha-fetoprotein (AFP) has gone up very high. Get an MRI done and come back with the report.”

“What is that?” I dumbly asked.

“It’s a cancer marker. But you don’t worry about that. Get the MRI first, so we can rule it out,” he said, impatient to get on with his work and not to get into that difficult conversation with me.

“But I am cured of Hepatitis, right?” I pressed on.

“You don’t understand,” he impatiently said. “I am talking of hepatocellular carcinoma, not Hepatitis. Get the MRI done and we will talk,” he summarily said.

“And, if its cancer?” I nervously asked.

“Then you will need a liver transplant,” he said.

Cancer. Liver Transplant. It made no sense.

It was the first time; the truth hit me like a bolt from the blue. Although I’d been living in denial of my Hepatitis for the past ten years and taking all sorts of treatments – Allopathic, Ayurveda, Homeopathy – to finally respond so well to Sofovir 400 mg, a costly drug that had cleared Phase III Clinical Trials and entered the Indian market an year ago - and managed to flush out the virus in three months of the drug therapy – this was an anti-climax, I was not prepared for.

What happed was that before leaving my body, the deadly virus had already caused its damage to my liver, leading to cirrhosis, and ultimately cancer. The alarming speed at which the tumour was growing left no doubt in anyone’s mind that it could only be cancer, leaving transplant as my only option for survival.

I was issued a three months’ deadline to have it done.

The rest of the evening from Bombay Hospital to my home in Malad-E, I remember passed off in a daze. I don’t have any recollection of boarding the local train, rubbing shoulders with the crowd, returning from a busy day at their offices, and quietly sneaking into my home-cum-office; sitting there in pitch darkness for maybe hours, just sobbing my heart out and not knowing what to do next.

My eyes fell on my office desk. Sitting on it was a crisp envelop. Inside was my top-up medical policy from New India Assurance taken out, after I was cured of Hepatitis-C and my first thoughts were – is this is a signal from above? I had no way to tell. (Incidentally, I am still waiting for Bima Lokapal’s verdict on that, after a hearing that happened in August, this year), a good two years after the surgery and the claim settlement is still pending.)

That night, in that office, plunged in dark, I didn’t know who to break the news to – my 76-years-old dad, my 14-year-old daughter, or one of my sisters. The one person, I really wanted to pour out my heart to at that moment – my Mom - had expired, nearly four years ago. As a single woman, and a sole breadwinner of the family, I’d shifted base to Mumbai soon after her death, in order to have my married sister close by, to lend support with the care of my aging dad and young daughter.

“It might run into Rs 22-25 lakhs, including the cost of pre-tests and post-care,” explained Dr Vinay Kumaran, who in September 2016, headed the Liver Transplant Team at Kokilaben Dhirubhai Ambani Hospital, Mumbai.

My jaw dropped.

“What is the process….err…who donates?” my sister asked dumbly. This time, my sister and brother-in-law had accompanied me to the hospital.

“It can either be a live donation by a blood relative, in which case, we take a portion out from the liver from the matching donor. Or else, a cadaveric donation from a brain dead person,” Dr Kumaran explained.

My sister grabbed my hand, under the table, and looking into my eyes said, “You don’t have to worry. You have a donor,” as stunned tears streamed down my face. Later of course, we had to rule her out as my donor because of her own failing health. This left cadaveric donation as my only shot at survival.

The irony of my situation was that, when my mom passed away, I donated her eyes (she had septicaemia, so I couldn’t donate her other organs) and I got organ donor cards made for everybody in my family, not realising that four years down the line, I would be standing in the other queue – waiting for an organ donation. Such is life.

Today, I am convinced that if I had not donated my mother’s pair of eyes to a stranger, I would not have received a liver from my anonymous stranger, who before passing away, gave me a part of himself that I now host in my body.

Next one month, pre-surgery passed in a whirl. It started as a series of pathological tests to rule out any other fatal ailment. At Kokilaben, they found pre-cancerous cells in my breast. With live donations, medical teams don’t bother so much, as the risk is clearly understood between the consenting donor-recipient, related to each other by blood.

But in my case, because I was standing in a long queue for a rare cadaveric donation – the State’s Zonal Transplant Co-ordination Committee (ZTCC) – has to be sure, I was a fit candidate, physically and mentally and would survive a major surgery. Since we have so few voluntary organ donors in India, despite having the highest rate of road accidents in the world, and because of so much of scare over “kidney rackets” patients often die in India waiting for donations.

I was lucky.

But I know the procedure is long, tedious and costly. I must have undergone at least a 100-odd path tests, scans, and probes into every organ part. I was put on a very strictly-watched, high-protein diet to build muscle prior to surgery.

Even the post-surgery recovery was slow and demanding – took me nearly four months to fully recover, during which time I had to practically maintain no physical contact with the outside world, except my day nurse. I wasn’t even allowed to meet my daughter, who would stand at the door of my room, and talk to me, wearing a mask.

While stepping out, I had to be in full gear – face mask, a heavy hospital gown, shoe-covers, gloves, cap, and a heavy douse of sanitizer. My body was gradually getting used to a daily dose of immunosuppressants (which is my drug for life), to counter organ rejection, as my chances of catching any kind of opportunistic infection were extremely high.

“I run a business. How can I be away from work for so long?” I once rued to Dr Diptiman Roy, the Radiologist at Kokilaben Dhirubhai Ambani Hospital, who was on the liver team, and in response, he gently patted my back and got up from the table.

I was registered with four hospitals – Kokilaben and Jupiter in Mumbai, Apollo Chennai (because they have better record of organ donations from down South) and Sahyadri Hospital, Pune. The chosen hospitals had to be close by, so I could be rushed there in time, when a donor became available.

It was during these four months of pre and post-surgery that I wrote my book, Second Go, that will be out in the market next week. It tells the story of a liver transplant recipient’s journey in India, and I hope sailors, sailing in the same boat over the choppy waters of life, may find it useful.

Initially, it started as a series of blogs on LinkedIn, then TOI website, and finally landed me a book deal with Fingerprints through Book Baker. Summoning up every ounce of strength I had in my disease-wrought body, I would viciously punch away on the small keypad from my hospital bed at Sahyadri Hospital on a Samsung Galaxy smart phone, the only device allowed to me in my super-sanitised room.

The next four months, this device became my window to the world. It was my lifeline. I actively blogged, wrote my book, negotiated with clients on behalf of my agency Write Solutions (www.writesolutions.co), discussed and delegated work to colleagues; did business, and also watched all the good cinema, I had always wanted to, but couldn’t make the time for. I also soaked into soul-stirring music; and became a practitioner of Soka Gakkai.

And how can I ever forget the huge effort put in by my liver team at Sahyadri Hospital, my surgeon Dr Bipin Vibhute, Dr Manish Pathak, and various mausis and mausas (an endearing term I discovered for paramedic staff in Maharashtra) that made sure I got back on my feet again to tell my tale.

Lying prone for hours in my bed, with no one for company, the one thought that sailed me through that difficult period was that of my 15-year-old adoptive daughter, Aarzoo. I wanted to be around to see her grow up into a responsible adult and run a dance school in the name of my Mom, as Aarzoo is an extremely gifted dancer.

“What’s eating into you?” a friend, mentor and client Kapil Vaishnani once asked me, over phone from Ahmedabad, where he runs his creative agency, Litmusbranding.com.

“Just that I may not be around to see her school,” I rued. He laughed. A week later, I received a painting from him that shows Aarzoo’s little feet dancing and in the distance there is a faint outline of this school of my dreams. A professional artist, Kapil had painted it and my sister put at a strategic location from my bed, where I could study it daily.

“You ghostwrite for others. When will you write your own book?” my mother would ask, and I had no answer for her then, because I did not have a book in me. Had she or I, known I would have to pay such a steep price to finally be able to find the stirrings of a book in me, I am sure, we would both not have wished for it.

Post-surgery were extremely difficult and draining days – physically, mentally and financially. But if I was eventually able to pull through, it was because my family – my sisters and two brother-in-laws, as a unit put their weight firmly behind me. My younger brother-in-law, Vishal Dhawan, started a Whatsapps group “Yes!” where the five of us would keep tabs of my medical reports, discuss treatment, file papers with the insurance guys, manage my shaky finances, assign tasks to each other, and just as casually, also make daily inane talk.

This chat history, along with my chat with my team mates, sometimes conducted at midnight, over another whatsapp’s group are both now a part of Second Go. Life, those days was both funny and tragic. One client kept calling, a day prior to my surgery, over a few changes in his company brochure. “I am in the hospital, Sir! One of my teammates will be in touch with you!”I had to tell him.

Second Go, necessarily follows a hybrid model of an online-offline format – as any other way of doing this book, would have been nearly impossible for me in my weak, physical, ‘quarantined’ state.

Earlier in my life too, whenever I found myself down in the dumps, Mom would suggest, “Go, write! You’ll get it out of your system,” and writing (earlier it was poetry) to this day, continues to be cathartic, even therapeutic.

These days, I’ve started working on my next book, tentatively titled, Daily Survival Mantras, as a collection of micro blogs on LinkedIn that I hope to compile into a book in six month. This one also follows a hybrid format, as the form comes easy to me, through the course of my super hectic life, and readies me for the next day!

You can find more about my book at www.radhikasachdev.in, or wait for it to get listed on Amazon, next week. Sorry, if this has turned out to be a long read.

(Second Go with list on Amazon soon. This is an unedited version of a story that appeared in Mumbai Mirror on November 26, 2018)