Second Go: First-hand Account of a Liver Transplant Recepient's Journey in India

By Radhika Sachdev

Penned in real time, from the hospital bed while battling for life, on a Samsung Galaxy smartphone' s 4x2 inch keypad, the only device allowed to the patient in her super-sanitized recuperating room, this book follows a hybrid format of medico-psycho thriller, interspersed with SMS chats, transcripts of medical records, and other workings of an addled mind overcome by sickness, yet determined to pull through. It is a first-hand account of a liver transplant recipient' s journey in India, chronicled from the patient' s perspective in vivid detail as a series of dramatic events unfold in her life, completing the cycle from sickness to health, despair to hope. It also tells the story of a single mom and breadwinner of the family, her strong bonding with her adoptive daughter, and her family and friends' support. The author hopes that this book will give courage and direction to other patients whose lives are hanging by a thread, patients awaiting a life-saving cadaveric organ donation.

• Language: English
• Publisher: Fingerprint Publishing
• Release date: Nov 1, 2018
• ISBN: 9789390183456

Book preview

Second Innings

I am caught in a very Kafkaesque situation.

In four hours from now, I will be boarding my flight to Chennai to find a cadaver donation for my liver transplant.

I’ve been issued a month’s notice to look for a cadaver, or else, my sister would have to be my live donor.

However, before I make it sound so damning for my loving sister and myself, let me clarify that a liver transplant is more common these days, and I am being told by my doctors that the risk to the recipient is 80/20; while the risk to the liver donor is less than one per cent. But there is tremendous amount of post-surgical care that is required for both.

The package cost (all inclusive) for a liver transplant in India is formidable ( 24 to 30 lakhs) and even if you have adequate insurance cover and a loving family to bail you out, as I have, organs for donation are in acutely short supply simply because as Hindus, Christians, and Muslims, we believe in cremating or burying the body, rather than donate it to a person battling for life.

I was surprised when I was told that every human part—even hair, nails, skin, bones or cornea—are recyclable. Nature has given such tremendous reserve to the human body, and the liver in particular, that it has miraculous regenerative powers. Even a small section of the liver can re-generate itself to the normal size in both the donor and the live recipient in just a few weeks.

Four years ago, my Mom was battling for her life after a doctor botched up a routine gall bladder laparoscopic surgery at Max Hospital in NOIDA (UP) leading to acute respiratory disorder syndrome (ARDS), a stroke, and multiple other complications arising from septicaemia. At the time, we were faced with a tough choice; whether to let her go peacefully from her comatose stage, as she would undoubtedly have wanted, or put her on a ventilator, hoping against hope that the powers of modern medicine would be able to revive her.

They couldn’t.

Eighteen days later, she left us and except for her eyes, I couldn’t donate anything of her body because of septicaemia.

This time, I’ve managed to extract a promise from my family. If anything goes wrong on the table, they will gracefully let me go and give away all that I can to people struggling for that one dysfunctional organ that mine can replace.

My Mom, Dad (now seventy-eight years old), and my daughter (going on thirteen) and I got our donor cards made ten years ago. I hoped it would come of use to me when I was found to be Hepatitis C - positive. The only route of catching this infection is through contaminated blood, during an intravenous or dental treatment.

Hepatitis C is a chronic disease. The virus gradually works on the liver (the chemical factory of the body) cells and destroys them to the point of no return. Ten years ago, there was no cure for Hepatitis C in India and liver transplants and organ donation was rare but last year, after the drug ‘Sofovir’ became available in India as a generic composition, there is hope that the virus can be cleared in a majority of cases.

In my case, although I completed my drug therapy in June, the damage to my liver was already done. When I went to see my hepatologist to announce my virus-free status, he discovered a carcinogenic tumour in the MRI report.

The first option that a person has in my condition is something called TACE (Transarterial Chemoembolisation), which is a kind of localised chemotherapy, administered only to the tumour. But again, this is palliative and not curative, because a cirrhotic liver has a tendency to produce tumours again.

The only permanent cure is a transplant. To increase my chances of finding a cadaver donor, I’ve registered with five to six well-known hospitals in India and met with nearly all their senior surgeons. Each one of them gave me hope. As wishes and prayers pour in from all directions, one statement of a friend gives me great courage. He said, when you clear one test, you are given another, more difficult than the previous one. The idea is to help you make the grade, come what may. This is my test.

In the past one month, I’ve been asked to take innumerable pre-surgical pathological tests (including a psychiatric evaluation as per the medical protocol for a major surgery) and found faith in Buddhism to sail through the choppy waters.

I’ve also begun to value life, decided to turn vegetarian, forget the past, forgive all real and imagined wrongs done to me; be more patient, happy, and cheerful for whatever duration I am here on this planet. If I come back, I am going to start on the book - not a survivor’s guide, as there are plenty of those out there - but another, more cheerful book that my mom believed I carried in me.

As I pack my bag for Chennai, not forgetting to pack my music and my books, I steal a look at my octogenarian Dad. He’s glued to the TV as usual, watching the ‘Live’ telecast of West Indies vs. India cricket test series. Our boys are playing extremely well, he cheerfully declares, and instead of feeling irritated at the inanity of the remark, I feel glad that he can keep his spirits up, through everything.

My pre-teen daughter is also preening before the mirror, packing all the stuff she would require at my sister’s place, yelling for all the missing knick-knacks that she can’t do without. Her class teacher, the school bus have all been notified. Life continues.

At Writesolutions.co, my work-from-home content writing venture, the work is delegated. Our regular clients have been informed, my insurance company has been notified, my savings have been pooled in one account, and the details shared with my sisters to withdraw as needed. With my family’s help, I’ve made arrangements for the next three months. Beyond that we are not looking.

One thing remains - I still have to paint my toe nails. I can’t be allowed any accessories inside the hospital - but I can be allowed this small bit of feminine vanity, right?

The

Countdown Begins

I am back from Chennai with a MELD (The Model for End-Stage Liver Disease) score of 22.

This is an internationally-accepted objective measure of how urgently a patient needs a liver transplant within the next three months. The score ranges from 6 (less ill) to 40 (gravely ill). Based on the lab values of Bilirubin (a measure of how effectively my liver is excreting bile); INR (how effectively it’s clotting blood), and Creatinine (my kidney function), MELD helps hospitals and government agencies monitoring liver donation prioritise patients waiting for a transplant.

My blood group is O+, which means I am a universal donor, but when it comes to receiving blood products or a liver, I am at a disadvantage. I don’t have antigens A or B, which makes me a rare blood group type. So, in order to prevent the tumour in my cirrhotic liver from growing at its current alarming speed, I must undergo Transarterial Chemoembolisation (TACE). During TACE, the radiology team will administer drugs into my hepatic artery to kill the tumour. This non-invasive procedure will buy me a three months’ wait period.

The wait-list at a multi-specialty hospital is a dynamic list where a patient’s name rises and falls every week, depending upon the number of cadavers received, matched (as per the recipient’s blood group, weight etc.), and the physical availability of the patient.

It made sense for me to register at two hospitals in Mumbai (Jupiter and Kokilaben) and five Apollo Group hospitals in Chennai, where I have to rush to within three-four hours flight time, for that’s how long the hospital can keep a cadaver liver alive. There are others in the lineup at Apollo Chennai, which, I realise has turned into the ‘cadaver capital’ of the world, with patients flying in from across the globe.

At the hospital that receives a cadaver from the Zonal Transplant Co-ordination Centre (ZTCC), a not-for-profit government agency, the medical team calls the first three patients on the wait list and if, God forbid, the first happens to be running a fever, the second is unable to arrange funds, and the third is unable to make it to the hospital in the given time slot, the liver will be assigned to the fourth patient.

The name shuffle also happens if, during the interim, the patient on the wait list dies or receives his transplant at another hospital, where he was higher up on the list. I am at No#2 to No#5 on the four hospital lists I’ve chosen to register with.

To be on the active list, I’ve had to pay a fee (anything between 5,000 to 60,000 in each hospital). This is refundable if I don’t end up taking the liver from that hospital or pop off in the meanwhile.

Therefore, I must keep my bags ready, my funds liquid, my sagging spirit high, and remain in the best of physical and mental health to stay in the race and to be able to answer the hospital’s call anytime of the day or night. I am now the mistress of my destiny.

While my family is assisting me in the funds department, I have to concentrate on keeping enough work in the pipeline at www.writesolutions.co to have my fledgling content development practice running, my kitchen fires burning, and be able to support my aged father and my young daughter survive the crisis during the two months’ post-surgical recuperation. As the sole bread earner of my family, I must live or die in harness.

Since my cirrhotic liver is not allowing me to make or store adequate amount of proteins and has begun to lose weight, to ensure that I am in a fighting fit condition for my surgery, my dietician has advised six egg whites a day, lots of fish, milk, pulses, soya, and fresh fruits, and instructed me to switch to a no fats, no oil, no sodium (salt), low sugar diet. Eat like a baby; frequent, small meals, bland, mashed, and cooked well, she said, or you can end up cannibalising your weak muscles.

Meanwhile, I’ve also been issued a strict exercise regimen by my physiotherapist, if you want to bounce back on your feet quickly and not stay on the vent for longer than a day, he cheered.

I broke down during my psychiatric evaluation, so the shrink had to re-schedule it for another day. Get a grip on yourself, my good-natured bro-in-law chided. You don’t want ‘this’ to be a hurdle, he winked and I understood the pointlessness of being vulnerable, when I have such limited options. Surely, I wanted a second shot at life?

Since I have severe ascites (fluid retention in my legs) due to the malfunctioning liver, I’ve been advised to restrict my fluid intake to one litre a day (maximum), and take a diuretic to flush out the excess fluid build-up. The daily ablutions should be normal, so exercise daily my physio warned.

As I walked into my home-cum-office this morning, my daughter greeted me with, Did you take pictures in Chennai, Mama? and before I could find a suitable answer, my concerned intern chimed in, Did you find a cadaver, Ma’am . . .?

Sometimes, I don’t know whether to laugh or cry at the ghoulish tale unfolding in my life.

Why me? I want to ask my God.

And then the answer comes, Why not me?

Poked, Pricked,

and Prodded

Things are moving fast, so I must pick up speed with my writing, while the memory is still vivid and sharp in my mind. My objective for doing this series is not to seek sympathy or appear altruistic but be practical. Trained as a journalist, I must truthfully record a patient’s perspective as he swiftly turns into a dysfunctional entity, much like Gregor Samsa’s change into a monstrous spider in Franz Kafka’s 1915 seminal work The Metamorphosis. I read the novella in college and its starkness still hits me like a bolt.

An optimist at the core, I cannot allow a fate like that to befall me - EVER.

Taking my story forward, I will be admitted into Kokilaben Hospital, Mumbai, tomorrow morning for what surgeons there smartly refer to as ‘work-up’ to the transplant. The phrase is self-explanatory.

The main reason, a major surgery like a liver transplant is so successful in India these days is that the multi-specialty team doesn’t leave anything to chance. They don’t want surprises in the Operation Theatre.

Therefore, over the past one month, I may have been poked, pricked, and prodded all over my body, and must have given at least 3 litres of blood, one litre of urine for numerous culture tests, and submitted my body to a dozen-odd radiological examinations, sonographies, magnetic resonance imaging (MRI), performance tests (2-D Echo, Stress, Doppler’s), dental and ophthalmological examinations, psychiatric evaluation, gynaecological assessment (mammography, D&C), endoscopy, and bone and positron emission tomography (PET) scans.

Other than the mandatory pathological tests recommended by the autonomous Zonal Transplant Co-ordination Centre (ZTCC) that are accepted at all hospitals, there are a few additional tests that each hospital can add to the pre-screening rigmarole. A few do so to run up their medical bills. The prices of these pathological tests vary across the board, so check the tag before you shop. The tab? Anything between 2 to 2.5 lakhs, and there is bound to be some overlap and avoidable routine investigations.

Endoscopy is a non-invasive digestive track examination to check the presence of swollen veins (varices) that might rupture in the oesophagus during a transplant, so these have to be banded ahead of the surgery. Bone scan or a full-body positron emission tomography (PET) scan is done to check if the cancer has spread to the bones, in which case, transplant of any one organ may not be a viable option. Nor will it signify maximum use of a rare, donated organ.

If these evaluations throw up some medical issues, such as a suspected calcification in any part of the body, a polyp, or a lesion, those have to be dealt with first with biopsies and surgical removals. Even a blocked artery to the heart must be attended to first, with an angioplasty. Individual medical clearances have to be sought from specialists in each domain; these include a Cardiologist, Pulmonologist, Oncologist, Nephrologist, Radiologist, Diabetologist, Hepatologist, Gynaecologist and/or an Urologist to build a strong case for the recipient before the Hospital’s Medical Ethics Committee.

If the issues relating to any of these vital organs turn out to be bigger than the main liver issue, giving the patient a new lease of life in the form of a liver won’t be an optimum use of the donated organ that should ideally go to the next in the lineup.