Continuing from Part 3

This phase of my journey was incredibly challenging. It was the first time I felt truly ill. After being denied admission at Samvedna Hospital, I went to Varanasi Hospital the next day. Upon arrival, I discovered that they were closing the hospital due to the lockdown of COVID-19 pandemic. Most patients were being discharged, and they only planned to retain those who could not be cared for at home. I went to the hospital office and explained my situation, but was still denied admission.

They suggested I either go to BHU or return after the COVID-19 pandemic subsided. Given my previous experience at BHU, that wasn’t an option. I was seriously ill and desperately needed hospitalization. Feeling hopeless, I decided to try another hospital and started walking away. While waiting for transportation at the hospital entrance, my neighbor, a cardiologist, saw me. He approached me and asked why I was at the hospital.

I explained my situation to my neighbor, who agreed to help me secure admission. He took me to see Dr. Kumar Abhishek, a renowned hepatologist in Varanasi and a visiting liver specialist at Varanasi Hospital. Despite his reputation, Dr. Kumar initially denied my admission. Dr. Kumar explained that the hospital was temporarily closing due to the COVID-19 pandemic. He mentioned a shortage of staff and doctors. However, my neighbor, the cardiologist, convinced him to admit me. With my neighbor’s recommendation, the doctor at Varanasi Hospital agreed to admit me. My AST, ALT, bilirubin levels were elevated, and my albumin levels were low

This was the first time I required an albumin infusion. My condition deteriorated daily. After two or three days in the hospital, I noticed a significant decline in my mental health. My thought processes slowed down, my head felt heavy, and I felt apathetic. I struggled to engage in activities or even converse with others. If someone asked me a question, it would take me a minute or more to respond. I could hear everything, but I was unable to respond immediately.

Even when I felt like communicating, it would take me several minutes to speak. My voice had changed dramatically, becoming raspy and hoarse. I recall my sister-in-law spending the night at the hospital with her husband and playing Ludo. While watching them play, I wanted to join, but it took me about an hour to simply express my desire. Once I started playing, it would take me five minutes just to roll the dice or decide on my next move.

My decision-making and cognitive abilities were severely impaired. I recall sitting on the balcony on a rainy night, watching the empty streets. Everything seemed slow and hazy, as if I were intoxicated or under the influence of drugs. By this point, I realized I was gravely ill. The elevated ammonia levels in my body were likely causing these symptoms. Due to my deteriorating condition, the doctor recommended discharge from the hospital. He explained that my treatment was beyond his hospital’s capabilities and that I needed to be transferred to a larger city like Delhi for an immediate liver transplant.

Nobody informed me anything as all the discussion were done in private but I knew very well what was going on. After two or three days, the doctor stopped visiting my room. He would continue to come to the hospital and check on other patients, but he would avoid entering my room. My family had been told multiple times that I needed to be transferred elsewhere. Initially, we believed that the doctor’s absence from my room was due to negligence. I would wait for him daily at 5 PM, but his consistent avoidance became disheartening. However, I now understand that he was frustrated with my family’s reluctance to transfer me to another hospital. His actions, although difficult to understand at the time, were ultimately for my benefit.

The cardiologist who got me admitted would visit me twice daily. While he had no expertise in liver diseases, he would still check on me, review my reports, say a few words and try to calm me down. Although his own clinic was closed due to COVID restrictions and people were not allowed to leave their homes, he took a risk and visited me at the hospital every day, which I truly admire. My condition was dire. I recall one day when my legs became numb, and the hair on my legs felt lifeless. I informed my family members of my deteriorating condition, telling them that I was dying. I pleaded with them to take me to ILBS hospital in New Delhi but unfortunately, no one listened to me at that time.

I suspected that financial concerns were preventing my family from seeking further treatment. I called my mother at home and asked her to come to the hospital. I told her that if there were any assets in our ancestral agricultural land in my name, she should sell them immediately to fund my treatment. My mother began to cry and said she would do everything she could, but it wouldn’t be easy during the COVID-19 lockdown. I pleaded with my wife and elder brother to take me to ILBS Hospital in Delhi, but they were unwilling to listen. I believe they were unaware of the severity of my condition, and financial constraints were likely a factor. I didn’t have the necessary funds, so the financial aspect would have undoubtedly been on my brother’s mind.

The elevated ammonia levels in my body were exacerbating my condition. At the time, I was unaware of the connection between ammonia levels and constipation. I now understand that constipation can be a contributing factor to rising ammonia levels in liver patients. My doctors had prescribed stool softeners, but they were ineffective, and my constipation persisted. This severe constipation was likely a contributing factor to my high ammonia levels.

After three days of severe constipation, I was finally able to pass stool. My energy levels and cognitive abilities improved significantly for a short time. Feeling somewhat better, I contacted my elder brother and wife, pleading with them to take me to ILBS Hospital. was determined to go to ILBS at any cost, but they continued to make excuses and fabricate stories. My elder brother suggested that I eat papaya and wait for two more days before going to ILBS Hospital. Someone had told him that papaya might help my condition. I explained that my situation was critical, and I was dying, and papaya wouldn’t be effective.

However, my brother, a very innocent and trusting person, insisted that I wait a few more days. I was in a dire situation, feeling as though I were dying. The doctor had stopped visiting my room, I had no financial resources or other support, and my only option was to repeatedly ask my family members to transfer me to ILBS Hospital. Eventually, they agreed to wait for the doctor to visit the hospital and then decide. My family went to meet with the doctor, who was seeing other patients in the evening.

The doctor reiterated that the only option to save me was an immediate airlift to Delhi for a liver transplant. However, he expressed concern that I might not survive the journey. Unfortunately, I didn’t have the funds to hire an air ambulance, and no one was willing to pay for it. Eventually, an ambulance was arranged, and I was discharged from Varanasi Hospital and transferred to ILBS in New Delhi. I am certain that if I hadn’t insisted on going to ILBS Hospital, my family would never have taken me there. They were unaware of the severity of my condition, and I would have likely died at Varanasi Hospital

As I mentioned earlier, many healthcare service providers took advantage of the COVID-19 restrictions in India. The ambulance service also capitalized on my emergency situation, charging us double the usual rate for an ICU ambulance. The ambulance provided was an ICU ambulance equipped with medical equipment. A doctor accompanied me on the journey. I later learned that he was an Ayurvedic doctor, despite the fact that he was caring for a patient on English medicines. Regardless, I was relieved to finally be on my way to ILBS.

I would also like to mention how some people tried to take advantage of my illness. In a previous post, I described how my wife’s uncle lent her money at high interest when I was admitted in BHU and we needed some help, which was very disheartening. Besides him, two other people from my in-laws’ family also exploited the situation: my sister-in-law and one of my wife’s cousins. My sister-in-law’s husband, who used to own a medical store, refused to let me buy medicines from the hospital, claiming he would offer a better rate. However, I later discovered that he was charging more than the hospital’s prices. I  don’t really mind it much but such behavior was disappointing coming from a close relative.

What I find unforgettable is that they charged for bringing food from their home. The doctor had advised simple, light food. My wife and other family members were with me at the hospital. My sister-in-law brought khichdi two or three times but charged my wife Rs. 2,000 for it Similarly, my wife’s cousin also brought khichdi a few times and charged Rs. 2,000. All of this happened in front of my wife’s uncle, who even instructed my wife to give them money. Even if he asked, my sister-in-law and cousin should have refused to accept it. In our family, we always welcome visitors and relatives needing medical treatment in Varanasi, offering shelter and food without expecting anything in return. People help even unknown people or their neighbors just for humanity, but my own in-laws saw my distress as an opportunity to profit.

Conclusion:

1:Liver diseases can also lead to severe mental health issues, and it’s crucial for caretakers to be aware of this. Please try not to be angry with the patient or think poorly of them. They need understanding and reassurance. Simply listening to them and helping them feel secure can make a significant difference, allowing them to stay calm and cope better. 

And one other important lesson: No one’s true character is written on their face. People often treat you according to their own interests, so it’s important to be cautious about whom you choose to trust.

To be continued in Part 5