The book that can save lives

In the year 2018, one of my favourite uncles passed away due to liver failure. I was working in Chennai then, away from my hometown, and my uncle’s home is my home in Chennai. I go there on most weekends, play with my brother and sister, watch movies, and go for outings together. He was my favourite uncle because he always wanted to hear my opinion, asked many meaningful questions that no one would mind asking me, and shared his knowledge and wisdom on the go. He is a family-first person and always insists on utilising all the leaves sanctioned in the office. In the middle of 2017, his health was deteriorating, and he had the worst fever episodes and swelling in his leg. In the previous years, my uncle’s brother had faced a fatal death, for which I don’t clearly remember the reason, but it was mentioned as a genetic disease. My uncle was very cautious after that and was taking some preventive measures. But slowly, his health was on the decline, too.

My uncle and aunt went to check a famous gastroenterologist in Chennai, and knowing the family history, they did all the tests, and his liver function tests were fluctuating. The first thing the doctor told was to stay away from alcohol, as the report mentioned alcohol-related liver cirrhosis. My uncle, who was a teetotaler, was shocked by this. To get a second opinion, they went to a different hospital and did another round of checkup, and it was pointed out that it could be Wilson's disease, and they started treating him for that. I along with my aunt, we discussed what would be the root cause of the issue. My aunt, who was a homemaker then, is a biochemist with a diploma in hospital management and has previously worked in a hospital. She has a good fundamental understanding of medicines and would rightly question the doctor's diagnosis. She clearly felt that doctors are missing the root cause of the problem. Once the treatment for Wilson's disease started, we ran tests on the drinking water to ensure it was not contaminated. Even after treating for Wilson's disease, his health was deteriorating. Doctors pointed out that it could be a genetic disorder and mentioned that the tests show an autoimmune condition leading to liver failure after biopsy. By then, the family of 4 was going through the toughest battle, and I was standing as a witness to all this. It was extremely scary, and the mental, emotional, and financial toll that the family was going through is difficult to comprehend in words. The fear of genetic disease and the possibility that the kids may also suffer, the financial toll due to the amount of money being spent on the medical expenses, deteriorating family’s quality of life, and the worst fever episodes of my uncle have become regular. My aunt, along with two kids who were 9 and 4 years old then, and my ailing uncle, was taking on more of the burden on her shoulders. I started to spend more time in my aunt's home on weekends to support her in small ways that are possible for me. Doctors finally announced that a liver transplant is the only option, exactly some time before demonetisation. By then, my uncle took a break from work and stayed at home. My aunt took all measures to ensure that he didn’t get the ascites condition, was extra cautious about food, hygiene, and did all things she could to take care of the kids and my uncle, too. The cost of a liver transplant is too high, and they had to shell out all their savings to cover the medical expenses. We all really hoped that a liver transplant could be a lifesaver operation, and he was put on the waitlist for it. One day, we got a call from the hospital to get admitted for a liver transplant due to organ availability. My uncle, along with my aunt, walked into the hospital, leaving the kids with their grandmother. I started to stay in my aunt's home at that time and thought I could support the kids, help them with their school work, and to ensure some kind of normalcy in their lives. My little sister, who was 4 years old and a strong-willed kid, found it difficult to stay home without her parents. I coaxed her in ways I know, and together we did activities at home, and she regularly asked if Daddy and Mom would be home tomorrow. She hated going to school, and somehow, with a promise of her parents coming home soon or playing her favourite game in the evening, I sent her to school. My quiet and obedient brother was becoming quieter by this time. With all hope, we waited for my uncle and aunt to return home. The procedure started, and I didn’t know a liver transplant would take more than 16 hours, and 3 shifts of doctors would move in and out to complete the procedure. The procedure ended, and unfortunately, my uncle's health was declining day by day, with his heart rate going lower. My aunt was trying her best to get most details from the doctor, and in many cases, her questions to the doctor hurt their ego, and a few doctors were rude to her when she questioned about the fluctuating heart rate, thinking she was ignorant. Still, she used to tell that doctors did their procedures well, but nobody cared to explain the science behind why this was occurring. She was in the hospital for around 50 days, sitting in the waiting room, and would come home once or twice a week to take spare clothes and needed things. Me being a witness to this situation, was questioning about life, the medical system, and knew from my aunt that my uncle’s health is declining. It was on a day before the weekend to handle my sister's tantrum, I promised her that we would go running early in the morning as she wished. By the evening, my uncle was on ventilation, and the doctor gave up, saying there was nothing that they could do. I rushed to the hospital, and my family members were there to support my aunt. That evening was unforgettable, and I, along with my aunt and a few family members, went into the critical care unit, where people other than patients are not usually allowed. That was my last time to see my uncle, and the doctors decided to remove his life support and put an end to his life. Seeing my aunt like that was worse, and with all things ended now, we returned home to perform the last rites. My aunt came back home and woke the kids to inform and my 4-year-old sister asked my aunt if she could go running today. Things that occurred at home for my aunt after the last days of my uncle were more cruel than death. Somehow, through the courage of my aunt, she was able to sustain, and now the family is doing better, and she started working to take care of the family. Even after 8 years, the scar never faded.

Even with the whole liver out, there is still no proper diagnosis of what caused this problem. The fear lingers that it would be a genetic disease, and my aunt ensured that the kids are tested for the whole body yearly. To be extra careful, my little brother did a liver biopsy to ensure that things are ok for him and was considered for doing a genetic screening test too. The entire family avoided eating mushrooms, shellfish, chocolates, and nuts, fearing that it would trigger Wilson's or any autoimmune condition. Somewhere in this process, I was becoming obsessed with identifying the root cause of the liver failure and started adding Google search filters on topics related to liver disease. I spoke to people in my office, checked with doctors in my circle to figure out if I can get some support to find the root cause. I started searching for genetic disorder-related health groups on the Internet to find if a similar pattern of symptoms had occurred to someone else. I tried building an app where hospitals, with patients’ consent/individuals, can add their medical records and find peer groups to build a support system, but I didn’t know what to do with that. I tried reading more medical literature, doing keyword searches, and tried collecting the list of doctors who can help identify the root cause. The search ended when theliverdr posted about a similar pattern of conditions on his Twitter handle. I started following his page and would use my Twitter account primarily to follow his updates. I shared about his posts with my aunt, and she confirmed that my uncle was taking one of the alternative medicines as a preventive measure and thought it was safe as it's natural. She also shared that every time after he consumed that medicine, he would feel extremely sleepy and doze off. The day the liver doctor announced his book, “The Liver Doctor,” I bought my copy and started reading the 1st chapter about his patient, Saikrishna. That chapter felt like reliving the exact phase my uncle had undergone. If this book were written in the year 2017, things would have been different. This book will be a saviour for many people, and I truly hope it reaches them and raises much-needed awareness. This one doesn’t feel like reading a medical book. But it gave a close look at the doctor-patient relationship, and why it's unfair to lose a patient without finding the root cause. Somehow, I wished every patient of his would go back home like a happy ending movie when reading the book, but life is not always like that. But the grace and sanctuary he provided to hold grief for the family and the scar of each patient's memory that he carries leave an everlasting impact. I wish we had found you earlier, Dr. Abby. Thank you, doctor, for all your great effort, and wishing you more strength and peace.

Fin.