Tag Archives: Liver transplant

Organized loot of Indian Pharma Industries, Retailers and the Government

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My liver transplant was performed in November 2020, and I have been on a specific regimen of medication ever since. My body recognizes the new organ as a foreign object, so my immune system could potentially attack it at any time. To prevent this, my doctors have prescribed immunosuppressive medications. I take two different immunosuppressant drugs and a steroid that acts as an anti-rejection medication. These drugs are Tacrolimus, Mycophenolate, and Prednisolone. The most common brand of Mycophenolate worldwide is Cellcept, produced by Roche.

Initially, my doctors prescribed Cellcept, but I experienced side effects including upset stomach and headaches. Consequently, they discontinued it. Since my transplant, I’ve primarily relied on Tacrolimus and Prednisolone. However, during the past four years, I’ve had occasional infections requiring Mycophenolate. While the standard brand is Cellcept, I’ve been taking Mycofit S, produced by the Indian company Intas Pharmaceuticals. Cellcept is available in 500mg and 250mg strengths, whereas Mycofit S comes in 360mg capsules.

Cellcept typically costs around ₹650-700 per strip of 10 tablets, with a print rate of ₹750. Some people report getting even better deals, purchasing it for as low as ₹550. Mycofit-S 360, on the other hand, has a print rate of ₹1,330 per strip of 10 tablets. Given this significant price difference, I’d aim for a substantial discount on Mycofit-S. A 30% discount would bring the price down to around ₹930, which is still higher than Cellcept but more reasonable. However, I’d personally negotiate for a discount closer to 40% to make it more comparable to Cellcept’s price range.

Due to their specialized nature, immunosuppressant medications can be difficult to find. Despite Varanasi having a large medicine market near BHU, I struggled to locate Mycophenolate last year. Eventually, I found a shop that carried Mycofit-S 360 and purchased it for ₹900 after a 30% discount. I was surprised by the price. Considering my previous experience with Cellcept, I anticipated a similar or lower cost for Mycofit-S 360. However, it was nearly twice as expensive.

Given the high print rate of ₹1,330, I initially accepted the ₹900 price without question. However, I had a gut feeling something was amiss. I contacted a friend who had also undergone a transplant and was taking Mycofit-S, but in the 500mg strength. To my surprise, he paid only ₹300 per strip, despite a similar print rate of around ₹1,400. This significant discrepancy between the print rate and the actual selling price was shocking.

My friend explained that these pharmacies often charge regular customers between ₹900 and ₹1000 for Mycofit-S 360. However, they offer significant discounts to repeat customers or those with personal connections. He introduced me to his pharmacy, where I’ve been purchasing Mycofit-S 360 for ₹275 per strip ever since. Incredibly, this pharmacy is located just 50 meters away from the one that initially overcharged me.

Print rate of Mycofit S 360

I purchased Mycofit-S from the new pharmacy for a month until my doctors determined it was no longer necessary. Unfortunately, my liver function tests have been unsatisfactory for the past month, and despite adjusting the medication dosage, my doctors have restarted Mycofit-S 360. I typically buy medications from the ILBS hospital pharmacy in New Delhi. However, to my surprise, they quoted me ₹850 per strip for Mycofit-S 360. ILBS is a semi-private hospital operated by the Delhi state government, where I expected to receive subsidized medicines.

Initially, I considered buying other medications at ILBS and purchasing Mycofit-S 360 in Varanasi upon my return. However, I was concerned about the availability of the drug in Varanasi and my deteriorating health, so I opted to buy it at the ILBS pharmacy for ₹850 per strip. Upon returning to Varanasi, I visited a local pharmacy and was shocked to find the same medication for ₹275 per strip. Questioning the drastic price difference, the shopkeeper claimed it was a coordinated exploitation by pharmaceutical companies, retailers, and the government.

He explained that pharmaceutical companies have free rein to set exorbitant prices, and there’s little to no oversight. They collaborate with retailers to create a deceptive marketing strategy. While companies sell medications at relatively low prices, retailers drastically inflate costs. These retailers can offer substantial discounts while still making enormous profits, keeping customers satisfied. Unsuspecting consumers believe they’re getting a great deal with a 30% discount, unaware that they’ve actually paid four times the reasonable price.

Mycofit S 360

India boasts a massive pharmaceutical industry with a stellar global reputation. However, this sector is also plagued by significant control issues. Contributing over 20% of the world’s pharmaceutical supply and meeting approximately 60% of global vaccine demand, India’s pharma industry is a cornerstone of healthcare. It supplies 40% of generic drugs to the US and a quarter of all medicines in the UK. Given its immense scale, it’s shocking to witness such a lack of oversight. This clearly indicates a substantial failure in government regulation.

It’s impossible to claim the government is oblivious to these unethical practices. They’re fully aware but seemingly indifferent to addressing the issue. Prime Minister Modi launched the Jan Aushadhi Kendra initiative to provide affordable, quality medicines. While offering generic alternatives at reduced costs, these centers unfortunately don’t stock all medications, including immunosuppressants. Had they done so, it would have been a game-changer for patients like me.

Life becomes prohibitively expensive after an organ transplant due to exorbitant medication costs and frequent hospital visits. Patients endure significant financial hardship, a reality that pharmaceutical companies seem to disregard. While pharmacies often overcharge, it’s essential to acknowledge the role of companies in setting inflated prices and the government’s failure to regulate the industry. Every patient I speak with expresses deep concern about the astronomical cost of their medications.

Immunosuppressive medications are a lifelong commitment, and I’ve observed that patients consistently seek ways to reduce costs. They explore different brands and alternatives to manage medication expenses, especially for Mycophenolate, the most expensive drug in the regimen. Exploiting the financial vulnerability of already suffering patients is unconscionable and must be stopped. However, considering the industry’s current practices, immediate hope for change seems elusive.

My Liver Transplant Journey Part 6 | Admission at ILBS

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Continuing from Part 5

My admission to ILBS was far from easy. The Covid restrictions had already caused numerous issues, and my elevated ammonia levels only exacerbated the situation. When I arrived at ILBS, everything seemed surreal to me. I was in such a distressed mental state that, even though I was physically inside the ILBS premises, it felt as if I were standing in a building next door to my home in Varanasi. Given my deep-seated suspicions about my family—fueled by a belief that they were trying to harm me or send me to a rehabilitation center—the ILBS building appeared to me like a stage set, with everyone playing roles orchestrated by my brother.

ILBS was not accepting new admissions at the time, but my brother managed to arrange for my admission through some of his political connections. The hospital was crowded, and many faces seemed eerily familiar to me. I even saw people I knew—like friends and relatives—dressed as doctors and nurses, laughing at me. Everything felt so staged and fake that I just wanted to escape. Despite my apprehensions, I reluctantly agreed to enter the emergency ward. The doctors reviewed my reports, asked a few questions, and then requested that I lie down on the bed. Distrustful of the situation, I fled from the ward. I told my family that the entire scenario felt staged, that the ILBS hospital didn’t seem real, and I refused to be admitted there.

I was shouting, crying, and pleading with people around me for help. Others tried to convince me that the hospital was indeed the real ILBS and urged me to stay, but I couldn’t bring myself to believe them and fled. I ran about 200 meters from the hospital, then called the Delhi police to inform them of my location and urgently request their assistance. I also reached out to a relative and a friend named Sharad, desperately asking them to help me. They contacted my wife, who then explained my situation to them.

They called me back, suggesting that I should get admitted to the hospital. By that point, I had lost hope and was just waiting for the police to arrive. Despite my resistance, my brother managed to convince me to return to the hospital, and this time I lay down on the bed. However, I still felt distrustful; as they checked my blood pressure, the machine appeared to me as though it were fake. I told them I believed they were trying to create a placebo effect with what seemed like a toy machine. Overcome by my suspicions, I jumped off the bed and fled once more.

This time, I moved even further away and waited for the police to arrive. My brother appeared again and urged me to come with him, but I had lost all trust in him. It was the last week of April, and with temperatures around 45 degrees Celsius, I was shivering from the cold, feeling extremely dizzy, and eventually collapsed on the ground. I wanted to escape again, but my brother held me back and said he would wait with me for the police. Despite my pleas to let me go, he insisted that the police would decide what to do next.

After a while, the police arrived at the hospital. They spoke with my wife, who explained my situation, and then they came to find me. Seeing the police walking toward me with my wife only deepened my conviction that they were all part of my brother’s scheme. I was convinced that my brother had somehow manipulated them as well, leaving me feeling that I had no choice but to surrender. When the policeman approached me, I explained that I believed my family was trying to harm me. However, the policeman told me that I was unwell and that it would be best for me to be admitted to the hospital.

I told the policeman that I only wanted to go to ILBS, and he assured me that this was indeed the real ILBS hospital. He also promised to take responsibility for my safety and assured me that he would hold my family accountable if anything happened to me. Despite my doubts, I felt I had no other option, so the police helped get me admitted to the hospital. When I arrived, the hospital staff seemed prepared for my arrival. As soon as I lay down on the bed, they immediately secured my legs and hands with restraints.

ILBS is a semi-private hospital, known for its high costs. The average expenditure for a patient in the emergency ward is around ₹40,000 per day. In the general ward, it ranges between ₹10,000 and ₹15,000 per day. For the HDU ward, the cost is about ₹50,000 to ₹60,000 per day, and in the ICU or liver coma unit, it can reach around ₹1,00,000 per day. These costs were explained to my brother before my admission.

I know that it would have been be a significant financial burden on him since I had no money, yet he agreed to cover the expenses. My brother works in tourism, an industry severely impacted by Covid, and his office had been closed, leaving him without a steady income. Despite this, he still chose to support me financially. Without his help, it would have been impossible for me to survive that night.

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.

2: If there’s anyone who can offer you help in a crisis, it’s ultimately going to be your family.

 To be continued in Part 7…..

My Liver Transplant Journey Part 5 | Travel to Delhi in an Ambulance

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Continuing from Part 4

I was discharged from Varanasi Hospital on April 26th and transferred to Delhi in an ICU ambulance. India was under a nationwide lockdown due to the COVID-19 pandemic, so we required special permission from the district administration to travel, which was arranged by the hospital and the ambulance service provider. We began our journey around 8 PM. As an overnight journey, the accompanying doctor advised me to try and sleep. However, due to my elevated ammonia levels, everything felt abnormal

My head felt heavy, and I was confused and scared. I experienced a strange sensation in my head, as if I were under the influence of drugs. As the ambulance began to move, I tried to sleep. My elder brother, Chandan, my younger brother, Rajan, and my wife were accompanying me. Rajan and I were in the ambulance, while Chandan was driving his own car. I asked Rajan which route we would be taking, and he said that the driver wanted to pick someone up in Bhadohi hence will drive through Bhadohi-Prayagraj–Kanpur–Delhi route.

My anxiety was high, and everything seemed suspicious. I felt like my family was taking me somewhere else. This was likely due to my mental health condition and their constant disregard for my requests to go to ILBS Hospital. I suspected they knew I was dying and were simply trying to keep me comfortable by driving me around in an ambulance. After a few minutes of driving, I asked my younger brother where we were, and he replied that we were near Durgakund.

I pretended to sleep, but I was actually terrified and observing everyone in the ambulance, trying to eavesdrop on their conversations. After a few minutes, I asked my brother again where we were. This time, he said we were near the Radisson Hotel, which heightened my anxiety. These locations were in opposite directions, confirming my suspicion that they weren’t taking me to ILBS but were simply driving around the city, waiting for me to die.

I questioned the doctor, the driver, and my wife, but everyone insisted we were heading to Delhi. Despite their reassurances, I didn’t believe them, and my suspicions were likely influenced by the high ammonia levels affecting my mental state. Overwhelmed by fear, I got out of the ambulance in Bhadohi to verify our location. I checked various signs around the city to confirm my whereabouts. That night was terrifying. Everything seemed suspicious, and I felt like I was dying and my family was trying to harm me.

I took this pic of my wife sleeping in the ambulance

Seeing my wife fall asleep filled me with fear and sadness. I thought I was dying, and it was incomprehensible to me that my family members could sleep. I recall seeing the doctor on a video call with his daughter, where he joked about his tired face looking like a monkey. However, I interpreted this as a mockery of me. I was absolutely certain that they were taking me somewhere else. These doubts and questions raced through my mind.

I called my mother and informed her that I might not survive. She began to cry and asked me to request sleeping pills from the doctor. However, consumed by negativity, I believed she wanted me to be sedated permanently. I then contacted a neighbor and explained my situation. I told him that my family was taking me somewhere dangerous and that I might not survive. I asked him to record my voice and report it to the police if I passed away.

I sent my neighbor a WhatsApp message so he could present it to the police. I spent the entire journey observing the others in the ambulance. Whenever my wife fell asleep, I would wake her up, feeling insecure and scared. I constantly reminded her to talk to me, as I believed I wouldn’t survive for long. Somehow, the night passed, and I didn’t sleep a wink. The ambulance stopped early in the morning for tea and refreshments.

I took this picture of the ambulance to inform the police, look at my yellow eyes

I refused the tea offered by my family, suspecting they might have tampered with it. I kept a distance from them, observing their actions and taking pictures of the ambulance, my brother’s car, and my wife. I planned to send these images to the police and seek help. After taking the pictures, I tweeted to the UP Police, urgently requesting assistance as I believed my family was trying to harm me. I also sent the images and additional information to the police.

I was pretending to take a selfie with my wife but my actual plan was to have the car in the picture so that I could send the information to the police 🙂

The police responded to my tweet, requesting my exact location. I provided my coordinates, and they dispatched officers to locate me. However, by the time they arrived, I had already moved on. They contacted me again for an updated location, but I was unable to stop the driver, so they were unable to catch up. This happened three or four times, with the police arriving at a location only to find me gone.

We stopped at a cafeteria for a restroom break, and I heard someone mention nearby monkeys. Suspicious and fearful, I believed my brother was trying to have me attacked. I refused to use the restroom and stood at a distance from the car. During this time, I asked a local about the nearest police station. I wanted to go there and report my family’s potential attempt to harm me.

I shared my experiences with the locals, pleading for their help. They spoke with my family, but when they heard about my mental health struggles, they suggested I continue the journey with them. I was terrified and nervous, my heart was pounding, and I felt suffocated and dying. I informed my wife of my condition, and she alerted the doctor, who checked my blood pressure and determined that I was physically okay. He suggested oxygen support. While arranging the oxygen supply, a machine fell near me, and I suspected the doctor had tried to harm me by hitting me with it.

I confronted the doctor, demanding oxygen. Although he provided it, I felt more suffocated, believing he was trying to harm me with a dangerous gas. In a desperate attempt to escape, I opened the door of the moving ambulance and jumped out. Fortunately, I was not injured. I still had infusion needles attached to my arms, which I forcefully removed to frighten others. I began bleeding heavily, and my arm was covered in blood. I shouted for help, warning my family to stay away or I would harm myself further. As I ran away, shouting for help, a few people stopped. I explained my situation to them, but when they spoke with my family, they advised me to return to the ambulance.

My injured forearm after I forcefully removed the infusion needle

I refused to return to the ambulance and asked my brother to take me in his car. Despite my fear and anxiety, I was relieved to be out of the ambulance. Suspecting they were taking me somewhere else, I pleaded with my brother to drop me off at a Sikh Gurudwara. I believed they were planning to take me to a rehabilitation center where I would be mistreated. I tried to appeal to my wife’s emotions, sharing stories to persuade her to help me. However, no one was engaging with me, which increased my fear.

Blood on my hand after I forcefully removed infusion needle

I noticed that my brother’s car had a small display that would warn of nearby high-tension wires. This system would sound an alarm when we approached such wires. Suspicious, I began to believe that he had rigged his car to electrocute me. I started crying and begged him not to harm me. Although I’m still unsure how it happened, I felt several electric shocks while in the car, despite avoiding touching anything.

My brother explained the alarm system, but I was unable to believe him. I insisted on returning to the ambulance. Once back in the ambulance, I had crossed the border of Uttar Pradesh. I contacted the Delhi police, and they responded promptly, promising assistance. I requested them to send someone to my location, but I was unsure of my exact whereabouts. They informed me that they would wait for me at ILBS Hospital, and I should try to reach there.

I was skeptical about our destination, so I used Google Maps to navigate towards ILBS Hospital. Despite the challenges, I eventually reached the hospital. Overwhelmed with anger and frustration, I verbally abused the doctor who had accompanied me. I made hateful comments about him and his family, wishing them death. I still regret my actions, but my judgment was clouded by my mental state at the time. Reflecting on that journey fills me with fear and regret, as I acknowledge the irrational behavior I exhibited.

I was unaware of the connection between liver health and mental health until I encountered numerous mentally ill liver patients at the hospital. Elevated ammonia levels are a significant contributor to these mental health issues. The condition is called Hepatic encephalopathy and it happens when toxins (poisons), including ammonia, build up in your brain because your liver is unable to break them down. It can cause memory loss, confusion, loss of consciousness, coma or death. Reflecting on my own behavior, I believe my mind sensed something amiss and began interpreting every situation negatively.

My suspicion of my elder brother stemmed from his deception about his company’s free insurance offer in 2019 and his insistence on accompanying me for an ultrasound scan. Similarly, my suspicion of my wife and others arose from their initial reluctance to take me to ILBS Hospital. I was suspicious of Rajan because he smiled when the doctor, on a video call with his daughter, joked about his tired face. I misinterpreted this, believing the doctor was referring to me, and Rajan was amused. I also suspected my mother’s intentions when she suggested I ask the doctor for sleeping pills. While their intentions were likely not malicious, they were unaware of the severity of my condition. Financial constraints were undoubtedly a factor. My mind connected these events, leading to a negative interpretation. That night was terrifying, and I was consumed by fear and suspicion.

Conclusion: Families should take doctors’ advice seriously. If my family had followed the doctor’s recommendation and taken me to ILBS Hospital on time, my condition might not have deteriorated so much. They should also try to understand the patient’s perspective. I was scared, nervous, terrified, and mentally unstable. When someone exhibits unusual behavior, it’s important to recognize that it may be a symptom of an underlying medical condition. Liver health can significantly impact mental health. High ammonia levels in the blood can lead to a coma and even death.

If a patient is exhibiting unusual behavior, it’s important to remain calm and supportive. Listen to them, provide reassurance, and avoid displaying anger or frustration. Patients in distress need to feel heard and understood. If they are acting irrationally, remember that their decision-making abilities may be impaired. Offer care and compassion, even if their behavior is challenging

To be continued in Part 6

My Liver Transplant Journey Part 4 | Hospitalization at Varanasi Hospital

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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

My Liver Transplant Journey Part 3: Two weeks at home after getting discharged from BHU

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Continuing from Part 2

I was discharged from the hospital on March 21st, just before the nationwide lockdown was imposed on March 24th. I remained at home throughout the lockdown and managed my daily routine without any issues. I followed my doctor’s instructions and took my medication as prescribed. A follow-up appointment with blood tests was scheduled for two weeks later. Obtaining a blood test during the peak of the COVID-19 pandemic was challenging. I conveniently booked an online appointment with Lal Path Labs

They collected blood samples from my home and sent the reports to me online. Another challenge was seeing a doctor, as most of the hospital was closed. Only emergency services were operational, but even those were limited. In reality, the hospital was not even providing emergency care. Patients arriving with urgent medical needs were often denied admission. The senior doctors were absent, and only resident doctors were available to see patients, prescribe medication, and schedule follow-up appointments.

Many people who died in India during the COVID-19 pandemic didn’t succumb to the virus itself but to other underlying health conditions that they couldn’t receive treatment for. When I arrived at the hospital, the doctor’s outpatient clinic was closed. There was no one to even speak with the patients. I went to the emergency ward and explained my situation, but they were unresponsive and told me to return after the COVID-19 pandemic subsided. As a last resort, I went directly to the doctor’s personal office at the hospital.

I presented my reports to the doctor, but he became very angry that I had approached him directly. He began yelling at me and told me to return after the COVID-19 pandemic ended. I pleaded with him to simply tell me if I should stop, change, or continue my medication. However, he was so enraged that he threw away my reports without even examining them. He called his assistant, and they forcibly removed me from his office. It was a cruel and inhumane act from someone entrusted with public health.

I did nothing wrong by going to his office, as doctors were mandated by the government to be present at the hospital to care for their patients. I was also strictly adhering to COVID-19 protocols. Unfortunately, the doctor’s behavior was typical of many government hospital doctors in India. I was unsure what to do next. Should I continue my medication, stop it, or change it? My supply of medication had also run out, and purchasing medicines during the COVID-19 lockdown was challenging due to the closure of many medical shops.

Feeling well and concerned about potential medication overdose, I decided to stop taking my medication. Although I initially felt fine, the relief was short-lived. I began experiencing severe, indescribable pain in both legs. The pain was so intense that I required constant massage. My wife and mother were incredibly supportive during this time. They would take turns massaging my legs throughout the day and night. When they fell asleep, I would cry in pain and massage my legs myself.

Nothing was working, and my condition was deteriorating rapidly. I began experiencing severe stomach discomfort, weakness, and fatigue. I spent most of my time lying in bed, massaging my legs, and crying. I tried to contact the doctor at BHU again, but it was impossible. Desperate for help, I decided to visit another hospital. I went to Popular Hospital in Varanasi, where a doctor recommended hospitalization. Unfortunately, they had no available beds.

I took the prescribed medication and returned home. However, none of the medicines were effective. I felt weak, tired, nauseous, and had a heavy stomach. My fatigue and difficulty breathing persisted. The leg pain also showed no improvement. One night, feeling particularly unwell, I went to Samvedna Hospital, located near my home. Samvedna Hospital has a reputation for overcharging patients, but I had no other choice.

The main doctor was unavailable, so a nurse examined me. The nurse spoke to the doctor by phone, who requested my hospitalization. I agreed to be admitted, but there were no available beds in the general ward. The nurse explained that I would need to be admitted to the ICU due to my condition. After a chest X-ray, I was admitted to the ICU ward.

The ICU ward was not what I expected. It was a large hall with multiple beds, lacking essential medical equipment. It resembled a typical hospital ward without even a doctor present. I observed the nurse sending my X-ray image to the doctor via WhatsApp. After a few minutes, the doctor returned and asked me to follow him. I assumed he was taking me for further tests, but he instead brought me back to my family members on the ground floor.

I noticed that the hospital staff maintained an unusual distance from me. I also saw another person spraying sanitizer everywhere I touched or stepped. My family members suggested that we return home. Later, I learned that the doctor suspected I had COVID-19 and decided to discharge me from the hospital. I was frightened to hear that I might have COVID-19, even though I had no symptoms. We decided to visit another hospital the next day and then returned home.

To be continued in the part 4

My Liver Transplant Journey Part 2: Stay with in-laws & Their Behavior: BHU Hospitalization

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Continuing from the post number 1 …………….

My wife was visiting her parents during that time. One day, I called her and mentioned that I’d like to join her for a few days. I’m still puzzled by that decision, as I’m not someone who typically enjoys extended stays at my in-laws’ place. My wife was equally surprised, as it was likely the first time in our marriage that I’d expressed such a desire. I did go, and it was there that I began experiencing daily evening fevers accompanied by chills.

Sigmoidoscopy Report from February 2020

Whenever I felt cold, I would take Zerodol-P for temporary relief. I was also experiencing severe, persistent leg pain that was difficult to describe. This continued for three or four days, prompting me to get a blood test. I opted for a CBC and LFT. The results showed slightly elevated TLC counts, elevated bilirubin (around 8), elevated AST and ALT levels, and low albumin levels. While I initially believed it wasn’t serious, my family insisted on seeing a doctor. I eventually agreed and consulted a doctor at BHU.

Endoscopy Report from Feb 2020

The gastroenterology department head at BHU, Dr. V.K. Dixit, ordered additional tests: CBC, LFT, KFT, PT-INR, Endoscopy, and Colonoscopy. The results were concerning. In addition to abnormal LFT, my PT-INR was alarmingly elevated, far exceeding the safe range. My PT-INR was 3, while it should have been below 1. A resident doctor initially reviewed my reports and advised me to seek treatment at a larger hospital due to their severity.

Color Doppler Report from March 2020

His first question was whether I had experienced bleeding through my stool, nose, or cough. I replied negatively. He then explained that my PT-INR levels were so high that I risked vomiting blood or falling into a coma at any time. He recommended seeking treatment at a specialized liver hospital in Delhi. However, I insisted on seeing a senior doctor first. The senior doctor concurred with the assessment of my PT-INR levels and asked the same questions about bleeding.

BHU Prescription Page 1

I was unfamiliar with PT-INR levels and unaware of the dangers posed by elevated levels. The doctor instructed me to be admitted to the ward immediately. I complied, but after only two days, the doctor asked my family to take me home. He explained that there was little left to do, and they should either transfer me to a specialized hospital in Delhi or take me home. The doctor emphasized that the only potential option for survival was an immediate liver transplant.

BHU Prescription Page 2

My family requested that he keep me in the hospital for a few days, but he refused. He explained that it wouldn’t be beneficial to stay at BHU, as they lacked the necessary facilities for my condition. After much persuasion, he agreed to admit me. Fortunately, my body responded to the medication, and I began to feel better. I stayed in the hospital for a week and was eventually discharged. The doctor prescribed some medications and scheduled a follow-up appointment for two weeks later.

I was discharged from the hospital on March 21st, just a day before the lockdown was imposed. I’d like to reflect on my time at my in-laws’ place, as it taught me a valuable life lesson. Their family is a joint family, consisting of my in-laws and my wife’s uncle’s family. This includes my mother-in-law, my wife’s uncle, aunt, their son, and my wife’s grandmother. My father-in-law passed away in 2017, and since then, my mother-in-law has been living with my uncle’s family.

When I moved in with them, my aunt seemed somewhat upset. The next day, she told my wife that if we were staying for a few days, we should bring all our groceries and give them to her. My wife complied, emptying our kitchen and giving everything to her aunt. My aunt would also ask my wife to buy milk, vegetables, and other groceries in exchange for our stay. Essentially, I was paying for our stay, which is unheard of in Indian culture.

I later learned that my wife’s uncle had lent her money at a high interest rate while I was fighting for my life at BHU. While high-interest loans are common in the market, you wouldn’t expect such behavior from your own uncle in an emergency. He lent Rs. 60,000 at a 10% monthly interest rate, even deducting one month’s interest upfront. My elder brother and my wife contributed to my hospital bill.

We humans have categorized our personal and social lives in specific ways. We anticipate certain behaviors from certain relationships. My relationship with my wife’s family is deeply sacred, but such behavior raises questions about the fundamental nature of human connection and relationships. While such incidents are rare—I’ve never heard of anything similar elsewhere—I experienced it firsthand. I acknowledge his assistance, but I no longer consider it help because he charged money for it…

To be continued in Part 3……

My Liver Transplant Journey: How it all started: Post 1

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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.

To be continued in Part 2…….