It was early January 1998. About five months into my diagnosis of kidney disease. I had lost hope of my kidneys recovering their kidney function by normal means. I had, by then, tried a number of other alternate therapies. Nothing worked, of course.
One afternoon, an anonymous cover arrived by mail. These were the days when email had not yet invaded our lives. This was plain and simple mail. The one that you can touch and feel. The one that arrives once a day and a postman delivers.
It had a newspaper cutting in it. An article was circled with a pen. It had the picture of a man holding a glass of water. We read through the article. It talked about a person, Dr. Gupta who stayed in Mumbai, who had apparently cured many people of kidney disease by giving them a glass of charmed water. He had received a mantra from a sage in a forest which when chanted over a glass of water had the power to cure kidney disease.
Could this be it? I was very frustrated by then with the events that had turned my life completely upside down. Dr. Girish Narayen's promise that my kidneys would jump back to life in a few days was long forgotten. I had even stopped asking him about this.
The next few days saw a flurry of activity and animated discussions at home. My extended family were called in. Everyone thought there was no harm in trying it out. It was water after all. My aunt and her family stayed in Mumbai. I could stay there. I could dialyze in Jaslok Hospital which was close to her house. Dialyze, only till I needed it, that is. The magic water would anyway get the kidneys to start working soon, right?!
We talked to my nephrologist about this.
"Defies science", I remember Dr. Dakshinamurthy reacting after he read the article. "We have no problem if you try it", he added. Obviously he did not believe it would work.
The plan was for my dad to come with me, get started on the "treatment" and then my parents and my other aunts and uncles would all take turns to stay with me in my aunt's house for the four month duration I would need to undergo this therapy.
My dad and I took a flight to Mumbai, the first time I was travelling out of Hyderabad after my kidney disease struck. In Mumbai, we lost no time in meeting Dr. Gupta, the to-be savior. He administered the water at his office. He was a regular businessman in one of the old buildings of Mumbai. Every morning, all his 'patients' would troop in, one by one, to drink this elixir of life.
Words have this habit of taking on new meanings ever so often! Water, in this dingy Mumbai building, offered hope to the many people for whom the torturous lifeline called dialysis had become a part of life.
I wondered about the diet restrictions that would be put on me. I have tried a lot of alternate therapies in my long innings on kidney disease. The amazing thing is that each therapy has its own unique set of diet restrictions. How can the diet recommended by different systems vary so much while treating the same disease? The last therapy I tried had a really shocking diet to be followed. They made it really simple. Basically just rice and buttermilk. Three times a day. The same food. Rice and buttermilk. Over and over again. I gave up in three days flat!
We talked to the folks outside waiting for their turn to drink the water. Each one knew someone who had benefited. Many of them claimed they themselves had benefited too. Some said their frequency of dialysis had reduced from thrice a week to twice a week. We were impressed.
We waited patiently outside the doctor's office for our turn. The queue was not too long. Each person did not take a whole lot of time either. I guess there was nothing much to do inside. How much time does it take to drink a glass of water?!
I remember seeing a whole lot of Reader's Digest related stuff. Though we called him doctor, Dr. Gupta wasn't a medical doctor. I am not sure if he is a Ph. D. though.
The meeting with the doctor was unremarkable. A quick glance at the reports I had brought. I do not think they really mattered. It was not as if the quantity of the water or the type of mantra would vary based on the reports! There was one treatment. Period.
I looked on with the utmost respect and faith as the rotund doctor poured out a glass of water, brought it close to his mouth, chanted something inaudibly into it and handed it to me. I drank the glass of water.
We were given a photocopied diet restrictions chart and a recommended meal plan. Pulses were to be avoided like the plague. Most of the rest was similar to the regular kidney disease diet.
We left the place, full of hope. Hope that the four month journey that I had set out on would be the end of all my problems.
Next, we met Dr. B. V. Gandhi, a nephrologist at Jaslok Hospital. Dialysis had to be continued until the water showed its effect. We were quite upfront about why we were there. The doctor knew about Dr, Gupta and his water therapy. He did not proffer a comment on its efficacy neither did we ask him about it. He put me on twice a week dialysis, five hours each time.
The routine was set. Every morning, after getting ready, I would be driven to Dr. Gupta's office. The doctor would pour out a glass of water, chant his mantra over it quietly and I would gulp the water down. On Sundays, we would go to his house.
Dialysis would be twice a week. Each time, five hours of pure, unadulterated torture. I could hardly wait for the miracle-inducing water to start acting!
My aunt, her husband and their two sons were a very loving and cheerful family. Tanay and Malay, my cousins, looked after me really well! My aunt assiduously prepared my food separately keeping the diet restrictions in mind.
My uncle loved to go on long drives. I was a natural traveler myself. Every Sunday, we would all head out to some place and spend a few hours before returning in the evening. These breaks offered me a chance to get away from the boredom of the daily routine of doing nothing much I had become accustomed to in Mumbai.
One thing that comes to mind when I think about those days is the dialysis regimen. Against the thrice a week, four hour sessions, I was getting twice a week, five hour sessions. Not only was the number of hours less, the gap between two treatments was also more. A sure recipe for disaster! Surprisingly, many of my fellow patients were on the same schedule.
On one Sunday, all of us went to a new temple about a couple of hours away. The sun was scorching that day. In spite of it being January, it was quite hot! A perfect excuse to binge on water! I drank quite a lot of water that day. By the time we returned, I was quite tired. By night, I started feeling uncomfortable. I had difficulty breathing.
We had an oxygen cylinder at home from which I would take some oxygen through a small mask. I hooked on the mask and tried the oxygen. To no avail. The breathlessness was increasing every minute.
Within an hour or so, I was feeling suffocated. It was as if there was no air around me. I was trying to take in air desperately. Nothing seemed to go in. I started panicking. I really thought I was going to die. I ran from the window to under the fan and back to the window again, desperately trying to get some air to my lungs. The problem was not the lack of air, of course. The excess water that I had drunk was filling my lungs. No matter how much air I took in, the lungs would not be able to process it until the excess fluid was removed.
My uncle and aunt got me into a car. I stuck my face out of the window trying to get some air. I was literally struggling to live.
We rushed to Jaslok Hospital where I was put on emergency dialysis. They pulled off a large amount of water in the first hour. My life slowly came back to me. I gradually slid into deep sleep. When the session was over, I got up, relieved that I was still alive.
Malay, my little cousin, and I used the term 'golmaal' for cheating on fluids! He would see me sometimes drinking water from a source other than the bottle I was allowed to drink from. He would warn me about this reminding me that I would suffer by doing this. He was really upset because of this incident.
Next morning, he told me, "No more golmaal from now!" "Sure", I replied. I stuck by that. I have never had a similar incident after that.
Around early March, my hopes about the water curing me had vanished. My argument was if I was supposed to be cured within four months, there should be some improvement in 2 months. And there was absolutely no improvement until now. My family thought I was being impatient and should wait for some more time. They said the only other way out then was a transplant and a transplant had a lot of other complications associated with it.
I argued that I had had enough and was tired of this. One other factor that influenced my decision was that I was feeling wasted. I wanted to do some productive work. Keep busy. In Mumbai, I was idle the whole day. This was not even related to my Mumbai stay. I was generally disgusted for not doing anything for more than six months then.
I had another aunt, from my mother's side who stayed in Mumbai too. She was a writer and did an article on me for the 'Health and Nutrition' magazine. She agreed with my reasoning.
Eventually, we all gave up on the miracle cure.
I was on my way home.
During my 12 odd years with kidney disease, I have tried a number of alternate therapies. There is a pattern I have recognized by now.
Some genuine well-wisher would come to know about the treatment. They would have heard about it from someone who claimed to know someone who benefited. They would call or send a message that I 'have to try this'. We would all get excited. We would go and meet the person who gave the medicines - the nature of this person varied from a practitioner of the methodology to a businessman to a complete quack.
They would give us the medicines. Give us a chart of the diet restrictions. And give us false hopes that I would be cured in a certain amount of time. Many of them did not charge any money for their medicines. That gave the whole thing an aura of respectability.
"If they are not doing this for money, it has to be genuine."
As I keep stressing in many of my posts, there is an undeniable, much stronger mental impact in a chronic disease like this. These alternate therapies literally rape your mind repeatedly. There is so much hope to start with. You subject yourself to severe diet restrictions in addition to the restrictions imposed by the regular doctors. You bear everything. To what end? Nothing comes out of it. Within a few weeks or months, you start losing hope and eventually give up. Only to pick up another thread a little later.
One major problem I have with these people is that many of them have no basis behind their assurances. It's like they all want to try their therapies on me. If it works, great. If not, no harm done. My family and I gave a lot of respect to these practitioners. More than the conventional allopathic doctors.
I have yet to see for myself anyone being cured of kidney disease by any alternate therapy.
Its not as if I believe that there is no substance in alternate therapies. But it is extremely difficult to find the right practitioners. I wonder why this whole industry is unregulated. There are no standards, no formal books or established procedures. Yet thousands of gullible sufferers including me go to these people again and again in the hope that their conditions will be cured.
We are all looking for light at the end of the tunnel, not realizing that this tunnel is not so short.