Raj K. Verma
Dedicated in deepest gratitude to the multitude who helped me survive End Stage Alcoholic Liver Disease to live and tell this story for the benefit of those who need to read it.
Prologue:
It was the midnight of 4th October 2005 when all hell broke loose. After an extensive fortnight tour of villages in Nagaland I was admitted in Metro Hospital with malaria when my liver finally caved in to years of alcoholic abuse. 80% of it had degenerated. I spewed crimson blobs of blood all over the cabin floor, almost a bucket full. Semi-comatose, I was helped into bed. I hazily remember nurses scurrying around with all sorts of gadgets and a doctor pushing injections into my vein. I was fading……. and fast.
Then the first of many miracles happened. My good friend, Dr. Tokoho Chishi, came by to check on me (yes, at half past midnight!) and he took control of the situation. As luck would have it, we shared the same blood group (A+), and it took him 30 minutes to pump in more than a unit of his blood into me without observing the usual protocols of cross matching, Elisa test etc. More injections, chest thumping and coaxing. Gradually, the heartbeat started responding. The family rushed in. My cousins were all A+. Four more units of blood. Another miracle, but who was counting?
The losing battle:
After a month, I managed to wheel chair into an airplane seat to Delhi and another hospital. The next 18 months were an odyssey in agony of epic proportions - 7 relapses of internal bleeding, 3 rounds of endoscopic banding, 11 endoscopies, more than 30 units of blood from relatives and 24 hospital admissions spread over Delhi, Dimapur, Pune and Hyderabad. I am sparing readers the gory details.
My life was like driftwood floating in a raging river. Swept by the turbulence, bobbing up and down, sometimes disappearing altogether only to reemerge downstream, chastened and repentant. But the malaise was unforgiving. I went through the entire gamut of emotions known to man – sadness, happiness, hysteria, dementia, schizophrenia, gluttony, determination, despair, hope – you name it, I went through it. I kept sliding downhill. On New Years eve 2006, I asked my wife, Naro, to arrange a big party, though we could ill afford it, to herald a new dawn in my life, for better or worse.
The doctors tried to rush me into a liver transplant, saying it was the only option, but I refused to accept the reality. I was dogged in wanting to fight the good fight, taking refuge in my new found relationship with God. I prayed and spoke to Him, and found strength through my faith. Maybe that’s what enabled me to bounce back umpteen times. I jokingly told a friend “there are no vacancies in Heaven” (“Or hell”, I thought to myself.) Even my family and friends were filled with hope and we celebrated each time my blood count improved. This lasted till the next relapse and consequent hosptalisation, mostly in the middle of the night. We cried and consoled each other then.
In this never ending spiral of pain I sank deeper and deeper into the morass leading to oblivion. Remaining steadfast in my faith, I began to question God. I pleaded with Him to reveal His plans for me. I knew I would have died months ago if it were not for His mysterious ways. The thought gave me renewed hope, and with hope came the will to continue fighting. I went to Pune to try out Ayurvedic medicine. It did not seem to help. I suffered another relapse there and was hospitalized for a month. I recovered sufficiently enough to crawl back home to Dimapur. By now I was totally bedridden and entirely dependent on my wife and my caregiver, Kheghovi. They assisted me tirelessly to go through the motions of staying alive in what was a living hell on earth. I tried to remain sane in a sea of delusions. My family, friends and colleagues tried to goad me to continue fighting but the writing was on the wall.
My beloved daughter, Esther, called from Pune where she attends college and said she had decided to donate half her liver for the transplant. Despite my condition, the very thought was anathema to me. She kept persisting and I kept desisting. Literature on the internet revealed that the donor faced an equal life threatening risk as the recipient. How could I ask my daughter to pay for my mistakes? I almost went crazy and the clock kept ticking.
Then we heard that the Global Hospital at Hyderabad performs cadaver (dead donors) liver transplants so my wife and I went there on 18 March 2007 hoping to find a viable alternative. I was subjected to a battery of pre-transplant checks that ravaged my body only to be told that there was a waiting list for cadaver livers that could take anything between a month to 6 months for my chance to come. I knew I did not have that long and preferred to die at home rather than on a hospital bed in an unknown place. Disconsolate, we returned home on the 24th March.
My body had become skin and bones, except for my stomach and legs, which were bloated with ascitic fluid, indicative of a non-functional liver. The fluid would be drained out through tubes injected into my stomach only to reoccur again. Bacterial infections wracked my body and it was immune to the best antibiotics. The veins and arteries on my stomach wall and intestines were like a breached dam waiting to burst into a deluge of blood. My lungs were also filled with residual fluid and another tube was inserted between my ribs. Zion Hospital had become a second home for me. The valiant doctors there tried their utmost, but I was tired and my heart had wearied. I think by now I had become more than just a patient to them – a personal challenge. My heart went out to them as they worked tirelessly to keep me alive and felt frustrated that I could not help them help me.
Finally, on the 16th April 2007, Dr. Tali stated the inevitable and urged us to go to Apollo Hospital, Delhi for a last ditch effort by his batch mate, Dr. Gupta, who specialized in liver transplants. I protested vehemently, but my uncle Tojo, who had steadfastly been a pillar of support throughout, forced me to take the 17th April flight with my wife and a relative, Dr. Atsung. The tube jutting out my chest kept dripping fluid throughout. In retrospect, I think God had begun to intervene with His enigmatic plans.
Reversing the tide:
The ambulance with its screeching tyres and blaring siren heralded my late night arrival on a stretcher into the sterile portals of the Apollo Hospital, Delhi.
Dr. Subhash Gupta and his liver transplant team of 7 other specialists examined me and ruled out any possibility of an immediate transplant. My condition had deteriorated to the extent that they even could not risk removing the tube from my chest though the incision was beginning to fester. I was put on life support systems. The seepage in my lungs were infected and I was drowning in my own fluids.
Esther flew in from Pune on 18 April. She had appeared her final semester paper the day before. She seemed calm and composed and as a donor, she had to undergo the mandatory tests over the next one week, including psychiatric evaluation and interview by an official from the Health Ministry to ensure that she was donating her organ on her own accord and was not being coerced. I was still against the idea but my choices were limited. Either I could take a chance and put both our lives at risk or face certain death if I did not. Not much of a choice. Imagine the plight of my wife, son and brothers family in this scenario. Risk losing 2 loved ones or reconcile to surely losing one. I tried to sabotage the process by refusing to cooperate with the doctors and nurses, hoping that fate and nature would contrive a decision. But Esther was determined. I thank God for having blessed me with a daughter with the wisdom and heart of her biblical namesake. The decision was made and the transplant would take place if it were medically expedient.
I was the subject of constant debate within the liver transplant team. There were 3 schools of thought. One who wanted to go ahead and operate, another that felt my body would not take the trauma and the third who said “He’s going to die in any case, so lets go ahead”. Gradually my body started responding to the antibiotics and the tube insertion in my lung was removed. But my mental health was taking its toll. I became insomniac and could not sleep, sometimes for 3-4 days. Sedatives had no effect and only served to add to my crazed state of mind.
Finally, after I had been forcibly induced to regain some modicum of strength, transplant day was fixed for 2 May. Pre operative checks that found me unfit forced a postponement to 5 May and again to 9 May for yet another deferment. 11 May dawned and the surgeons decided it was now or never. Esther and I were readied for the final countdown. We prayed for God’s continued presence in our lives.
It was dark and silent when Esther was wheeled in first at 4.30 AM to the operation theater. For the first time she dropped her façade and her heart rending cry of “mummy!” as the doors swung close to swallow her in still haunt my wife. I followed an hour later.
My next recollection is of masked faces telling me “Mr. Verma, breathe!”. I had all sorts of blinking gadgets around me that rendered a choral of “pip, pip” and “whoosh, whoosh”. There was no pain. Numerous pipes sustained the life-breathe in my body. I tried enquiring about Esther but my voice was a gurgle due to the respirator pipe. It was frustrating and I got agitated. Finally, the doctors caught on and informed me that Esther was stable. We were in the liver ICU, which is the mother of all ICU’s. It resembled Hitler’s Bunker and was timeless. The only way to differentiate between night and day was from the meals (“Is this lunch or dinner?”). Liver transplant patients bear the highest risk of infection and there is a 60% chance of the body rejecting the new liver. Although the risk perception decreases over time it is a life long condition.
Later, I learnt that I had been on the operating table for 17 hours and Esther for 14 hours. My family and friends waited in what is aptly called “the prayer room”, eyes mesmerized by a ticker tape that continually scrolled across the wall hypnotically pronouncing “No. 2325 operation in progress, No. 2324 operation in progress”. For them it was an infinite vigil of a thousand deaths. The surgery itself was carried out on 2 parallel tables with literally surgical precision by a team of over 20 doctors and assistants. Our stomach’s were cut open in a wide T shaped incision to expose the liver. The blood vessels were severed and clipped. As the right lobe of Esther’s liver was carved out, mine was removed. Within minutes Esther’s liver was transplanted and attached into my body, the blood vessels rejoined. 15 units of donated blood were transfused to keep us alive. Sounds simple, doesn’t it?
The post-operative recovery period was equally traumatic. The anti rejection medication gave rise to a number of adverse side effects. I suffered hallucinations, severe mood swings and violent fits. My wife was permitted to visit me for 10 minutes daily and I longed for her presence. To keep myself sane I forced my son to smuggle in my cell phone. I spent hours on the phone speaking with friends and relatives from my lonely tower. Esther also faced her own trials. The sense of losing part of a vital organ can play havoc on the psyche. She was in the adjacent cabin and we kept each other company till we tired. The irony of this new born relationship was not lost on me. We had both given life to each other across either end of time. I the father, and she the child. She the mother, and I the child.
Epilogue:
It is a little over 2 months since the transplant. The nightmare seems over and the awakening is sweet. Esther is back in college working towards her graduation as a media communications person. The family is relieved and life goes on. I am trying to rehabilitate myself into the mainstream. The last 2 years have been spent in suspended animation – a never, never space between then and now.
I continue taking strong immuno suppressants and steroids. My health is improving at a rapid pace. My mental faculties are slowly normalizing. Esther’s liver has regenerated to normal size and so has mine. The hard disk in the obsolete laptop has been reformatted and Windows XP loaded. Picking up the pieces is not easy and the ghastly scar on my stomach remains a constant reminder of yesterday. I have a family to raise, a home to build, debts to pay and a job that needs catching up with. My task is cut out for me. But I sleep easy in my new understanding of God’s wisdom (that are too personal to express here) and know that just as He has resurrected me, He shall also provide.
Acknowledgments:
A swathe of emotion sweeps through me as I attempt to key in this section – primarily that of gratitude and love. There are hundreds of people to whom I owe my life. People who provided in terms of solace, material and moral support, prayer, succor and even 27 units of blood for the surgery at Delhi. Some of them remain anonymous. People from Nagaland and around the world. People in government, NGO’s, business, churches and other walks of life. People who gave with an open heart. To their love, I can only reciprocate with everlasting gratitude and indebtedness. It would be a gross injustice if I tried to name them all as I am sure I will inadvertently miss some names. A liver transplant is one of the riskiest and most expensive surgeries in the world and I came out of it because God put these people there in my hour of need. Throughout the period of pain and suffering, there was never a moment when I came up short of coping. It was because of these people, each a miracle of God. May they be blessed and continue to be used by our Lord. Please continue to pray for me.
A special mention about my family- my wife and children, my uncles and their kinfolk, the extended family and especially my mother whose incessant prayers were answered. I can also never forget my “two Heaven- sent guardian angels” who took on the onerous task of raising funds and expediting matters within the government so that the burden was eased off me. More than that, their omnipresent aura provided me with a promise of the future and a reason to fight and live on. The doctors and nurses played their part in struggling ceaselessly to keep me alive and through their deeds taught me to never give up. Thank you for being witness to my rebirth. Words fail me.
Tailpiece:
I have been told that I am the first liver transplant from Nagaland. This must be true as there are less than 200 in India (and 1000 worldwide). A dubious distinction and nothing to be proud of. The statistics are stark. 20% do not come out of the OT alive and another 20% never make was it beyond the first 6 months. The treatment costs are prohibitively high before, during and after the surgery. All this was avoidable if I had not been stupid and an insult to my intelligence. My heart goes out to the multitudes who have succumbed to this disease in the past. Most were intelligent, talented and versatile human beings. They had so much to give and yet …..
I extend my hand in support to the thousands of others who are drinking themselves to a slow and painful death induced by alcoholic poisoning. To them I say read this story once more and consider if it is worth it. There is no such thing as “I am cutting down” or “I have things under control”. I used to say the same myself and look where it got me. The only way is to quit before it is too late and believe me that is only the beginning of a long journey. “The road is for the journey and not the destination”. Think about that.
I feel humbled by this experience and am unworthy of the love bestowed upon me.
To the Almighty Lord who accepted me and made all this possible I owe everything.
(The writer invites queries from readers and offers to advise, counsel or facilitate those in need. He can be contacted at 98620 11033 or narolav@hotmail.com)
