Due to the length of my liver transplant journey, I’ll be sharing it in a series of posts, each focusing on different events and experiences from my illness to recovery.
It took me over three years to decide whether or not to share my liver transplant journey. After much deliberation, I chose to write about it as a way of expressing gratitude to all the positive forces in the existence that helped me through this difficult time. Initially, I hesitated to share my experiences due to the many negative experiences I encountered with. However, a deep desire to help others avoid similar hardships and motivated me to write.
You may find some of my views negative, but please refrain from being judgmental until you’ve read my entire series of posts. I’ve been as honest as possible, detailing my mental state when I had high ammonia levels and the reasons behind people’s negative attitudes towards me. I fully understand the frustration and financial burden my illness placed on my family. Dealing with such unexpected challenges is not easy, but smart decisions can make things significantly easier. Patients, families, and others each have distinct roles to play. By understanding one another and working together with a compassionate and scientific approach, we can achieve better outcomes with less difficulty.
As I mentioned earlier, please avoid judgment until you’ve read all of my posts. I pray that no one ever experiences the hardships I faced, but if they do, I hope my posts can offer help to patients, their families, and society at large. Hari Om.
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My health began to deteriorate in the final week of December 2019 or the first week of January 2020. I experienced persistent chills, weakness, and fatigue, but I didn’t suspect a severe liver issue. While I had a history of jaundice in 2017 and septicemia in 2018, both conditions were effectively managed. Although I required hospitalization for three days to treat the septicemia, my liver function tests remained normal. When I experienced jaundice, my doctor suggested that it could be attributed to contaminated water, unhealthy food, or a sedentary lifestyle. I regularly underwent blood tests and ultrasounds to monitor my health, but these examinations never indicated any signs of liver disease.
I’d like to share another incident that occurred in March 2019. My older brother, Shailendra, was visiting Varanasi and falsely claimed that his company offered free healthcare for family members, including me. He encouraged me to get an ultrasound scan using this insurance coverage. I knew he was lying, using the ultrasound as a pretext to discuss my declining health. I accompanied my brother to get an ultrasound scan. During the appointment, I noticed him speaking privately with the doctor, which seemed suspicious.
I suspected he might be requesting the doctor to provide a negative assessment of my health. Although I was somewhat upset, I still went through with the scan. Once the scan was complete, the doctor informed me that my liver appeared unhealthy and recommended consulting a specialized liver hospital in Delhi. However, I was convinced that the doctor’s assessment was pre-arranged and dismissed his advice. In retrospect, I wish I had taken his recommendation seriously.
Looking back on my illness in 2020, I believe it began in January, though I initially dismissed the symptoms. As I mentioned earlier, I felt constantly cold, weak, and fatigued. Over time, I also developed mental health issues likely attributed to high ammonia levels in my body. I recall feeling persistently upset and isolated, longing to escape from those around me. I was confused and disoriented, unsure what was happening to me or if I was living a different kind of life. The underlying reason for my desire to withdraw is something I choose to keep private. It was a personal burden that caused me constant distress. This secret will likely remain undisclosed until the end of my days.
Overwhelmed by stress, I once left home without informing anyone and stayed with a friend for two days. One night, I even called my mother to say I wouldn’t see her again. The combination of stress and high ammonia levels left me constantly upset, angry, and confused. Reflecting on those days, I realize my behavior was indicative of a mental health crisis. Suicidal thoughts were frequent, and I often contemplated ending my life. It’s clear now that my illness began in January, but I was oblivious to it at the time. Looking back at photos from that period, I can see that my skin had darkened significantly, and I was noticeably thin. However, I never suspected a severe liver condition.
Look at the sudden change in my face color
Reflecting on those days, I recall that even after consuming alcohol, my breath and urine would retain an alcohol odor for the following day. People would frequently ask me in the afternoon if I had been drinking, even though my behavior was not indicative of intoxication. I believe this was due to my body’s inability to metabolize alcohol effectively, causing it to accumulate. While I can’t pinpoint the exact date of my first drink, I had been consuming alcohol for approximately 10-12 years. Typically, I would consume a quarter of whiskey (165 ml) each evening. Although there were occasional lapses, I generally drank alcohol daily. In the last 2-3 years of my active drinking phase, I increased my daily intake to 200 ml. I rarely drank during the day, except for special occasions like Holi. While I’m unsure if this qualifies as heavy drinking, it’s clear that I consumed alcohol almost daily.
My final alcohol consumption was on March 8, 2020. With Holi approaching on the 10th, I was in a celebratory mood. I recall enjoying two cans of Kingfisher beer at home before heading out to meet friends. While I typically preferred whiskey, I opted for beer that evening due to feeling unwell and seeking a temporary boost. When I joined my friends, they were already drinking a variety of beverages, including whiskey and beer. Despite my initial intention to avoid whiskey, I ultimately consumed two or three shots.
I recall returning home late that night and going to my mother’s room, which was unusual for me. Typically, I would go directly to my room and sleep. However, on that night, I went to my mother and asked her to cook Khichdi. I remember she was visibly upset about my condition. Eventually, I went to my room late at night and slept. The next morning, I felt extremely weak, feverish, and shivering. Despite it being Holi on the 10th, my illness prevented me from celebrating. My ammonia levels were already elevated, and I felt confused most of the time.