Saturday, December 24, 2016

Encouraging children to develop the ability to think for themselves

My family is from Gujarat. As you can imagine, my entire extended family is a staunch supporter of Prime Minister Modi. A few have become more circumspect recently but I will not get into that for now. Any voice that opposed anything Modi did or said in the past many years would be labelled 'pseudo-secularist', 'MIM', 'Rahul Gandhi fan' etc.

Parents would be so emphatic in their support that children would begin to believe that not supporting Modi, whether they genuinely liked the man or not, was a crime.

I tend to take contrarian viewpoints in any such debate. With a bunch of Modi supporters, I can be rabidly anti-Modi while I could put my family to shame in front of Modi-haters. During family debates, when I find fault with many things Modi did, I find some of my cousins beginning to speak up, even if just a little. It's as if, almost for the first time, their inner thoughts have a found a voice.

I put this down to the unintentional consequences of having strong parents. Children tend to emulate their parents' opinions rather than developing their own.

It is important for parents who want their children to grow into mature individuals to ensure that they also become capable of thinking matters through, from different perspectives, and then forming their own thoughts on any subject whether political or otherwise. By being strong-headed about such things, they would be stifling the child's ability to think for himself or herself.

This freedom to think should also exist in religious matters even though this could result in far more controversial results. Shoving religious beliefs down a child's throat can cause rebellion later in life when even basic tenets of humanity could eventually be rejected. Most religious thinking today is constrained by dogma. Instead of trying to understand the fundamentals of religion, children are taught 'not to reason why, but to do and die'.

I believe that encouraging children to develop a mind of their own by laying before them the facts and your perspective and then strongly encouraging them to think through (and also letting them know that it's always alright if they change their mind) is a much better way to help them grow into complete individuals.

Wednesday, December 14, 2016

Rumour mongering about NephroPlus

I have heard some really crazy rumours about NephroPlus in the last year or so. But the one I heard last night has to top them all.

My mother ran into an aunt last evening. She said that someone told her (strangely she forgot the name of the source) that there was no point in sending kids abroad as in India itself there were many opportunities. Well, nothing wrong with that! She went on to say, "Look at Kamal. He is rolling in money. He now has money for ten generations. NephroPlus received funding from Bessemer Venture."

My, my. How insanely accurate the facts and the perceptions around this rumour are. So, allow me to break this into multiple parts:

  • Bessemer Venture Partners invested in NephroPlus many years back. It was covered widely in the press. Since then, NephroPlus has received two more rounds of funding, one from International Finance Corporation and the last one from Sea Link Capital. All this information is in the public domain and NephroPlus has held press conferences to announce these investments.
  • When an investor invests in a company, however much I would like, the founders don't get a single rupee from that money to spend on themselves or store for generations to come. That money is invested for the growth of the company and give returns to the investors. The money is invested with stringent targets of various kinds.
  • If I had a lot of money, I would rather spend it on myself and not leave it for ten generations. I am not married and also do not have any illegitimate kids for whom I need to leave any money.
  • If I was really rolling in money, would I not get Soliris from the US and get a kidney transplant? The only reason I am not able to get a kidney transplant currently is because I cannot afford the cost of Soliris. I do not like dialysis. I am aching for a kidney transplant. But I cannot for the simple reason that I cannot afford the drug and without the drug, my transplant is likely to fail.
I really wish the rumours were true. But unfortunately, they are not. It is just astonishing how people conjure up such statements. They put two and two together and conclude that the sum is twenty two. Without understanding the background and without understanding the facts, they make atrocious claims and spread them crazily.

My poor aunt was completely fooled by the unnamed source. My mother hurried back worried that I was hiding this huge wealth from her! I had to convince her that these were just rumours and the handiwork of some fools who had too much time to spare.

Saturday, December 10, 2016

A million shades of grey

I had written about this topic back in 2008. Every individual is very complex. It is impossible to classify someone has completely black or completely white. Everyone is somewhere in between - a shade of grey.

Despite realising this, I find myself (and others around me) bucketing people into either black or white. If someone has done something bad, I immediately assume that he is a bad person. If someone has done something good, I immediately assume that he is a good person.

The truth however is that it is merely the action that was good or bad, not the person himself or herself. All of us do good things and bad things. We tend to be less generous of others than we are with ourselves.

This colours our perspectives in very biased ways. If someone whom we have classified as 'bad' does something good, we look for some selfish motive behind that act. On the other hand, if someone we've classified as 'good' does something wrong, we explain it away by saying he or she might have had some compulsion.

We must try to separate the actions from the individuals.

Some people go to another extreme and generalise entire communities, religions and countries in this manner. If they've come across a few individuals from a community doing something, they will generalise and assume that the entire community is like that. At this point, the principle of collective justice is inevitably invoked. For the actions of one person in the community, the entire community must be punished!

In reality, it was one action from among many other actions that caused us to perform this classification. How dangerous this kind of classification can be?

Friday, December 9, 2016

Why am I a huge fan of Peritoneal Dialysis?

I often get asked which type of dialysis is better - Hemodialysis or Peritoneal Dialysis? That question really has no standard answer. It's like asking someone which flavour of ice-cream is the tastiest? It depends on the individual. Some prefer Hemo while others prefer PD.

If you asked me which I prefer personally, I would unabashedly say PD. Why am I such a lover of PD?

I honestly hadn't heard about PD until after my failed transplant in 1998. When I was researching the internet, I actually stumbled across the term by chance. This says a lot about the way medicine is practised in India. "Kidneys are failing, get a fistula made" is the mantra here. When I read about PD for the first time, it almost seemed too good to be true. I decided to ask my doctor about it, half-expecting to be told that it was not available in India or that I wasn't suited to it. Imagine my excitement when he said that I could definitely go for it.

The next six years on PD, as I keep saying to many people I talk to, were the best during my life on dialysis.

There are many reasons I liked PD:

  • Less diet and fluid restrictions: I was not asked to restrict anything. I did four exchanges a day compared to many PD patients who do only three exchanges these days. This was a welcome relief from the severe diet and fluid restrictions I was asked to observe while on HD.
  • No needles: Who does not hate needles? The very thought of two thick needles in my arms is even today,  a huge put off for me. The best part about PD was that there was no need for needles.
  • No thrice weekly hospital visits: PD is almost always done at home. The whole effort of going to a hospital thrice a week for about five hours each time was physically and mentally draining, not only for me, but also for my family.
  • Independence: I did my exchanges and exit site dressing myself. This was very different from HD when you showed up at the hospital and surrendered completely to the centre staff. In PD, I had complete control. This does put a lot of responsibility on you. Some people like this, others don't.
  • Freedom to travel: On HD, I can travel only to places where there is a good centre. Also, five hours at a hospital, every alternate day, does not appeal to me on a holiday! With PD, I could travel easily. All I needed to do was to order the PD fluid bags to a place close enough to where I was travelling. The rest was a breeze. 
I was told later that PD worked best when you had some kidney function remaining. I had zero kidney function during my entire PD tenure. It worked beautifully for me. I think the big difference was that I did four exchanges. That is probably why it worked so well for me.

If there was a way for me to go back to PD today, I would close my eyes and take it.

Thursday, December 8, 2016

Why is the new blood donation technique invented in 1977 still not being used?

A new blood donation technique that was invented in 1977 in India is still not being used. I am not sure why. Lot of the challenges we face today have been overcome in this invention:

  • No pump needed to draw blood, blood can flow against gravity
  • Blood from multiple donors can be mixed together and then donated to one recipient
  • No screening required for viruses etc.
  • No anti-clotting agents needed
We should popularise this technique. I am sure many other applications of this are possible. For example, currently, pumps are needed to pump out blood from a dialysis patient's arm. This is just one of the many areas where this can be used.

Here's a video that first demonstrated the technique: (note that there's an audio that plays in the background that says "Yeh sirf kahaani nahi" which undoubtedly proves that this is not just a movie but reality)

Tuesday, December 6, 2016

My non-dialysis day

I dialyse six nights a week, for seven or eight hours each night. No, I am not in a dire condition that I need so much dialysis. I dialyse so much because it allows me a good life. I am able to lead a pretty normal life. I don't need so much dialysis. I choose so much dialysis.

I used to skip dialysis on Sundays earlier. The tech, Jayaram, who used to come home to help with my dialysis had his weekly off at work on Sundays and so, that felt like the right thing to do. It wasn't any scientific decision. It just happened. When Jayaram left because his day job was keeping him too busy, I got a couple of folks from NephroPlus to help with my dialysis.

Somewhere around that time, I decided to change my weekly night off to Tuesdays. Why Tuesdays? Well, I was swimming at a pool that was closed on Wednesdays. What has that got to do with my dialysis weekly off?

Honestly, I am about as non-compliant as they make dialysis patients these days. On a good day, I put on at least 3 litres from morning to night. On a bad day, don't even ask. So, when I skip a day, the fluid weight gain is at the very least 5 litres. I find it a little uncomfortable to swim with too much fluid inside me. Play the fool in a pool - sure. But not rigorous swimming.

So, if I continued with the Sunday dialysis weekly off, I would miss two days a week for my swimming - Wednesdays, because the pool was closed and Mondays, because I was fluid overloaded (sort of).

By coinciding these two days by not dialysing on Tuesdays, I needed to skip only one day in the pool.

Today is Tuesday. My weekly day off from dialysis. I am feeling good today. The thought of not having dialysis seems appealing. No, it's not that I hate dialysis. My regular dialysis keeps me healthy and allows me to eat and drink whatever I want and however much I want. But still, one day off gives me a nice feeling. I have me to myself. No machine, no needles, no timing.

Today, I actually made some progress on my new short story. I have been having writer's block. I don't claim to be some great writer and all to be able to justify calling it a block. But I have just been unable to write more of the story I'm working on currently. I have been stuck at the same point for months!

Why couldn't I take two nights off if I liked it so much? I tried it. I didn't like it. I felt too constrained. I had to watch my fluids too much. And that's the worst feeling anyone can have, IMHO.

So, I will let you go now. Just wanted to share my joy of not having dialysis today. See you soon!

Friday, November 25, 2016

Are humans inherently selfish?

A few months back, a discussion broke out during lunch at work on altruism. Some of my colleagues insisted that humans are inherently selfish and people who engage in altruism are actually doing it not out of some genuine desire to help people who are needy but to make them feel good about themselves. I felt that might be the norm but there are still some people in the world who help out of a genuine desire to benefit those who need it.

When it comes to human behaviour, I believe it is too complex to classify easily, especially by using generalisations.

I have seen a lot of people, especially those who donate to religious causes who insist that their name be displayed prominently among the list of donors because they have donated a larger amount. Some would even decide the amount of money being donated based on how visible the news of the donation is going to be.

Sadly, my religion, Jainism has also become prey to this culture of vulgar displays of generosity. It is more important to many people to be seen doing charity rather than actually being charitable. The sangh and the clergy encourage this as well. It serves their purpose well.

Another fashionable trend that has started is for people to donate in their late parents' memory. The parents' name is displayed rather than their own. It's almost as if people wouldn't get to know who has actually spent the money.

No right thinking individual can condone this kind of conditional charity. It would be interesting to see how things change if for just one year, a decision is taken that all donations would be anonymous.

However, the topic at hand is the more subtle kind of altruism where people don't get the publicity that I have talked about above. They may donate anonymously. My colleagues argue that even this is with a selfish intent of 'feeling good about themselves'.

Even if this is true, I wouldn't mind this kind of 'feeling good'. At the end of the day people can feel good about themselves in whichever way they want to. Some people feel good by spending on themselves, while others may feel good by spending on the needy. At least in the latter, someone who really needed the money or the resources (arguably more than you did) has benefitted.

The point I'm trying to make is that first kind of people (who spend the money on themselves) are more selfish than the second kind (those who spend the money on the needy). And all this is assuming that those who donate are doing it only because they feel good about themselves. As I said before, human emotions are too complex to categorize in this manner and it is difficult to say with any certainty how they play out in the end.

Thursday, November 17, 2016


I awoke this morning at the usual 5 a.m. I gently put my NxStage System One in rinseback mode and then once the blood had made its way back into my body, removed the needles and disposed off all the used up consumables.

It was a cold morning. I was wondering whether I should put on a sweater but then decided against it. I made my way to the kitchen and put the water to boil. I decided to have the Rohini Premium Black Darjeeling this morning. One and a half teaspoons. Five minutes to brew. I chuckled to myself thinking about the irony of having Darjeeling tea in the midst of the Nilgiris! I took my steaming cup and went towards the backyard. I opened the door from my living room and took out my easy chair and placed it on the platform just above the grass. I settled in with my cup. I could see the moist air emanate from my mouth as I breathed out. I could actually feel the sips of tea going down all the way from my tongue through my throat and then right down my gullet, invigorating and warming my entire body. What would I do if there was no tea in my life?

I then did my usual ten-minute meditation routine and then wrote for about an hour. I had started writing this book within a week of moving to Coonoor. In the past three months, I had completed about half the story.

As the sun started rising, I realised I had begun to feel a little hungry. I had some cornflakes and then got ready and went to the community swimming pool. The heated pool in this part of town was absolute bliss. About 40 minutes of swimming and I was feeling so nice. The best part of the pool was a waterfall at one end where you had hot water gushing with force on your head.

I came back home and had a breakfast of Idlis. I then headed to the Coonoor NephroPlus centre. I checked on all the guests who had come in for dialysis, had a Skype call with the centres scheduled for today and then got about my daily emails and other tasks for the day. We were planning to submit four abstracts for the upcoming World Congress of Nephrology and the data was coming along just fine. I caught up with my Hyderabad team on some stuff and then went back home.

Traditional Gujju lunch and a nap later, another cup of Darjeeling black and then back to my book. Fiction gives you so much freedom. You give your characters the traits you want to, no restrictions imposed by actual people! You make things happen. You add a twist where you like to. No constraints! I am excited thinking about what the response would be! Of course, it may turn out to be a dud. But I wouldn't mind. I enjoyed the journey.

By around 6 p.m., I began to feel tired. My mind was exhausted. I munched on some berries. How I loved berries, in all colours and sizes. Not that I needed to watch my potassium since I was on daily dialysis but they did have low potassium. If there was one thing I missed when I was in Hyderabad it was berries. I watched some television. Modi was in the thick of campaigning for the 2019 election. I wondered if he would win. I think he did a good job overall. But was he as good as people thought he would be? That may be up for debate.

A light dinner followed. Some fresh bread with herbs and butter, homemade pizza - only Margherita (toppings were still overrated). I went through my Pocket and Flipboard apps and read some good articles.

I was soon back beside my companion for the night - my faithful NxStage machine. I was so grateful that I had access to this beauty. Just a few years ago, I had honestly no hope of being able to get one. But then suddenly it all changed. Indian health-care became dramatically different. It brought access to the latest and the best. With it, came the little NxStage machine. The lesson for me from all this was - never give up hope.

These thoughts lulled me into deep sleep in a few minutes.

Wednesday, November 16, 2016

Inflammation, inflammation!

It's been a long time since I blogged! I have been having pain in my left knee from about a month now. It gradually increased over time and about a week back, it became really bad. I could barely walk and when I did, I was in a lot of pain. The pain is worst when I sit for a while and get up and then reduces if I stand for a little while.

I consulted an orthopedician who got some X Rays and then an MRI and said I have some inflammation in that area and some fluid has accumulated and formed what is known, rather colorfully, as a Baker's cyst. When I first heard the term I wondered whether it was related to something that formed in bread when it was baked! Wikipedia put it down, disappointingly, to the cyst that was named after the doctor who discovered it and went by the last name Baker!

I was asked to take an NSAID called Indomethacin. Now, usually NSAID are prohibited in people with kidney disease because they can harm kidney function. But since my kidney function is already at 0, they were okay with me taking it because there was no lower the kidney function could go. Talk about a silver lining!

The drug has made it possible for me to walk, although with a slight limp. The pain has reduced significantly. However, I still have moments, especially when I get up after sitting for a while, when the pain is bad and I need to stand for a minute or so before attempting to walk.

In the recent past, I have had inflammation quite a lot. It was in my wrist at first and the same drug would relieve the symptoms in three days. Now, it's the knee. I wonder why I am so inflamed! I had read that dialysis is a very inflammatory process. So, it must be the long term dialysis.

I do hope I get better in time for my holiday this weekend! So looking forward to it!

Tuesday, October 11, 2016

The truth behind the 13 year old Jain girl's fasting accident

Recently, a thirteen year old Jain girl based out of Hyderabad, Aradhna Samdariya, died after a 68 day fast. The press covered this incident quite extensively. It also made it to some national news bulletins. Many people called it a 'cold-blooded murder' by the parents for which they should be 'locked up in prison'.

First, some facts. Jainism encourages fasting. But it clearly articulates that all religious activities including fasting, donating money etc. should all be done 'yatha shakti', as per each individual's capabilities. It never recommends to go beyond your capabilities. Yes, it also encourages you not to fall short of what you're capable of. Fair, in my view.

There is absolutely no evidence of the parents forcing the child to fast beyond her wish. This is mere speculation by a section of the media. The parents probably encouraged her. There is a very important difference between 'force' and 'encourage'. They did not deter her from fasting. They did not stop her from fasting. They encouraged her to fast. If the girl wanted to stop, she definitely could have stopped. So, to charge the parents with 'culpable homicide' is totally unfair. The parents have committed a mistake, a very serious mistake. They did not cause the death of their child. There is absolutely no ground to proceed legally against them.

Latha Jain, in an interview with NDTV stated that this was cold blooded murder. I would like to ask her whether she understands what cold-blooded murder even means. Please don't sensationalise the loss of a child to get your two minutes of fame on television! Some people have called for the society to not provide any legal help to the parents. Just to put things in context, I would like to remind them that even Ajmal Kasab was provided legal aid! Are the parents worse than him???

There have been wild, baseless allegations about the father of the girl having had losses in his jewellery business and that they were advised by some sadhu in Chennai to get their girl to fast for 68 days! From where has this come? What evidence does anyone have to prove this? How low can the media go?

There have been many discussions about allowing children to fast or not. Jain fasts are very rigorous. The upvaas consists of no food and only water. Water is also to be consumed only up to sunset. The same girl did an 8 day fast and a 34 day fast in the preceding two years. She was completely fine. Nothing happened to her. There are hundreds of children around the country who fast for various number of days during the 'paryushan' every year. Nothing happens to any of them. Where were the child rights activists when these fasts went off well? Some people argue that 68 is too high a number for a thirteen year old. Accepted. What is the right number? 1, 3, 8, 16, 30? Who is to decide? Each individual is different! There can be no fixed rules for all!

Any individual should fast only up to a point where he or she is able to independently do his or her day to day activities. Beyond this is not advisable.

What happened with Aradhna Samdariya was a very sad, horrible mistake. A mistake. Nothing more. Nothing less. She should not have been allowed to go to a point where she was unable to stand, sit or move about independently. Let us not ostracize the parents. They have lost their daughter. They must already be feeling so miserable. To proceed legally against them is a travesty of the law.

Sunday, October 2, 2016

Look for joy in the little things in life

Many articles I have read in recent times have suggested that happiness is usually found in experiences rather than products. They suggested that the initial thrill on buying an expensive new thing such as a fancy, new car, a new phone or a new home usually fades away quite quickly. The joy of experiencing something like a holiday at a new place, doing something adventurous like rafting or zip-lining gives you happiness that is felt for a long, long time and gives you memories that can last a lifetime.

I find this to be very true. When I buy a new iPhone, within a few weeks or at best a few months, the initial excitement is dead and gone. And I actually feel bad when the new iPhone is announced because it is usually so expensive that I cannot afford to buy one so soon after I've just spent quite a bomb on another one!

On the other hand, I can never forget the trips I've had. I relive the joy whenever I think about them, talk about them with people I've been with. Take the 2012 Alaskan cruise for example. Just the other day, when Dinesh wished me on my birthday, we reminisced about the fantastic time we had. This, after four years had already passed! I often revisit the videos of the Niagara Falls and even much simpler places, closer to home like the natural water slide at Chepa Rai! I still feel the thrill of these places.

I firmly believe the best things in life are the simplest. I savour every sip of my morning Darjeeling black tea, love my Sunday morning Idli jaunt and relish my morning swim. When you think about these things, you realise that you don't need too much money to experience true happiness. We often get into this endless cycle of trying to make money because we believe that in money lies the secret to happiness. It is true that we need money to take care of the basics. But beyond a point, money cannot make us happy. It is how we look at life and how we try to find those moments of true happiness and genuine joy that eventually dictate how happy we actually are.

Sunday, September 25, 2016

Two little Elevator button rules to use in life

I think it's high time someone published the rules for using elevator buttons, especially the ones outside (that call for an elevator). I am sick and tired of the way these buttons are misused.

So here goes:

Rule #1:

The two buttons available to call an elevator have an up arrow and a down arrow. These are meant to indicate whether you want to go up or down, not whether the elevator must come up or down. For example, if you're on Floor 3 and you want to go to Floor 7, you need to press the Up arrow button. Many people see that the elevator is on Floor 5 and press the Down arrow button. When I ask them why they pressed the Down arrow button when they wanted to go up, they say I want the elevator to come down. Well, the elevator will figure out where it has to go but you please just let it know where you want to go because the elevator has no way to figure that out.

Corollary to Rule #1:

Never press both Up and Down arrows. It does not cause the elevator to come to your floor quicker. It simply causes more delays later in the process! Let us say the elevator is on Level 7. You are on Level 0. You want to go to Level 5. The Up arrow is already pressed. You come and press both the Up and Down buttons. The elevator was planning to go to Floor -2. Since you pressed the Down button, it will stop at Level 0. No one will get in or out. But you will have to wait until the door opens, waits a few seconds and then closes. You could have saved all that time!

Rule #2: 

If one of the arrows (Up or Down) is already lit up, pressing it again 2-3 times in quick succession does not make the elevator come to your floor quicker.

I see people who are in a rush. They will come to the elevator, see that one of the buttons is already pressed. But they're apparently in a hurry and so they will press the button again muttering some profanities under their breath. No, it does not help!

There you go! Two simple rules to ride elevators efficiently and make this world a much better place!

Sunday, August 21, 2016

In how many different directions will we pull our government?

So, Sakshi Mallik and P V Sindhu win medals at the Olympics. Countless hours are spent in television debates on how India has failed her sportspersons. People talk about how they have won medals despite the system rather than because of it. All very true.

All this will be forgotten in a few weeks and people will be talking about how the government failed some other section of the population. And then another. And then another.

People like me who've been affected by health issues and who are in the healthcare industry and see people dying due to lack of access to decent healthcare would always argue that the government's focus should be on providing good healthcare. Even among healthcare enthusiasts, there would be differences on whether the focus should be on primary healthcare, preventive healthcare or chronic diseases.

Then you would have people who would argue that education should be where the government should focus. Some people would contest that poverty alleviation should be the focus. There would be some who would say that the government should concentrate on the public distribution system and ensure that no one is hungry.

In a severely resource-constrained country like India, sports, honestly will never be on the list of priorities. When we do not have the basics like food, education and healthcare taken care of, we cannot expect the government to focus on sports and Olympic medals.

While each section of the population that demands that the government focus on one particular aspect is justified in doing so, it is a fine balancing act that any government must perform in order to ensure that it is seen to be spending every rupee in a meaningful manner. At the end of the day, this will mean only incremental progress on many aspects rather than completely eliminating the most basic problems first. 

Monday, August 15, 2016

An accident of geography?

I was in the middle of a meeting. My cell phone rang. The number was unknown. I muted the phone. I called back after the meeting was done. It was an unknown male voice. He introduced himself as Abhijit Chatterjee*. He spoke in Hindi with a heavy Bengali accent. I found it difficult to follow what he was saying. But I could figure that he was talking about his daughter, Ananya Chatterjee* who was diagnosed with aHUS. She was currently on Peritoneal Dialysis.

I get roughly one call a month these days. After setting up the Atypical HUS India Foundation, putting up a website and a Facebook and Twitter account and trying to publicise the news that trickles in from time to time, people have been contacting me. My response is usually very standard. After all, nothing much changes in the grim, dark world of aHUS in India. No Eculizumab. No other good options for most of the mutations.

Over the next several weeks, I got introduced to Abhijit Chatterjee through a series of different people. The Atypical HUS Foundation in the US, aHUS UK, other aHUS family members from different parts of the globe. The man was desperately trying every source of information and help he could find on the internet. He contacted every person or organisation he found linked to aHUS. Unfortunately for Abhijit Chatterjee, all his efforts finally ended at my email Inbox or my phone.

My response was standard and offered little hope. “Eculizumab is the only good treatment for this disease. It is not available in India. Until it becomes available (this may take a few years more) or another drug becomes available, we need to do maintenance treatment like plasmapheresis, plasma infusions, dialysis etc.” I introduced him to some leading hospitals and clinicians so that he could talk to them first hand and see what other options might be available. He probably got similar answers from them as well.

On one call, Chatterjee talked about his daughter. I could sense the fondness he had for her, for little Ananya.

“She is so cute and innocent. She has no idea what is wrong with her. She has such a sweet face. I am feeling very helpless. I have spent lakhs of rupees on her treatment. I have borrowed money from everyone I know. I am not sure how I will repay them. I just want her to become well.”

As my eyes swelled, I could feel my gut wrench. What have we done to deserve this? Wouldn’t it have been better to have a disease that had no cure? It was so frustrating to know that there is a cure, there is a drug that can cure us completely. It’s just that we can’t afford it. It’s just that we were born in a country that did not have access to it.

Then, one day, there was suddenly a ray of hope. It came in the form of an email from a company that was working on a new complement inhibitor. They wanted to explore the possibility of conducting a clinical trial in India. As eculizumab was already available in countries like the US and the EU, it made perfect sense for them to do a trial in a country like India where there would be patients without any options and who might be perfect candidates for a trial.

I promised all help. Their Asia representatives were asked to contact me. I put them in touch with all the clinicians I knew who could have such patients. My hopes however came crashing down when I learnt that the company was currently enrolling only adult incident patients. That is adult patients who had just been diagnosed and had not proceeded to kidney failure.

I wrote to the company asking them to include paediatric patients as well as they would be able to enrol many more patients that way. The company responded that it would get back to me after discussing with the management. I haven’t heard back from them yet.

About a month back, I got a call from Abhijit Chatterjee again. They had sent Ananya’s blood samples for genetic testing. The reports showed a Complement Factor I Mutation. She would need Eculizumab for a transplant, I thought to myself. The doctors were recommending a kidney transplant. I asked him what the plan was in case of recurrence. He said he did not know. I asked him to discuss with the doctor that since they did not have eculizumab, what was the point in undergoing a kidney transplant especially if she had a Factor I mutation?

He said he would discuss with the doctor and get back to me. 

A couple of days back, Chatterjee called again. I thought he must be calling to update me about the transplant plan. However, I could immediately sense from his voice that this was something else. He sounded completely distraught. Little Ananya was admitted in the ICU at a very reputed hospital in South India. She had worsening blood counts. Her Platelet Count was dangerously low. She was put on a ventilator. They were monitoring very closely. I did not say much.

That evening I could not stop thinking about the little girl. 

The next afternoon, I got a call from Chatterjee. I was honestly scared to take the call. I feared the worst. I answered the phone after an excruciatingly long wait. Chatterjee broke down. “It’s all over. Last night, Ananya had a cardiac arrest, multiple organ failure and then she died.” I hung up. My heart sank. My throat choked. My mind went blank. Little Ananya was no more.

I muttered a curse to the skies. I asked myself what was wrong with this world? Of what good was all the progress mankind has made when the life of a little girl could not be saved merely due to an accident of geography? Why do people in some countries have access to the drug while others do not? 

Alexion Pharmaceuticals, the company that manufactures the drug has priced it so high that very few people in the world can afford it. Forbes magazine has declared their drug to be the most expensive drug in the world today. They have probably spent millions of dollars on the research for the drug. They have probably spent a lot of time, money and effort in navigating the various patent laws and making their drug available to people. Given that the number of patients in the world is so small, are they not justified in pricing their drug high enough to be able to make profits?

I honestly don’t know the answer to that question. All I know is that what happened to Ananya is just wrong. I don’t know what can be done to change the situation for aHUS patients in India and many other countries in the world where the drug is not available. Something needs to change. How many more such lives are going to be lost fighting this disease? How many more Ananyas are going to die before this situation is remedied? Someone needs to find a way out.

(* Names have been changed to protect identity.)

Sunday, July 31, 2016

Indoctrination of impressionable minds: what is the real cause?

Brainwashing of young minds that are vulnerable happens in many religions. The clergy of many religions commonly teach children and the youth, things that may or may not be in line with the original teachings of the religion. These concepts however lead to the students developing a warped world-view which causes a lot of discord in their life and in several cases, in the lives of others.

Islam has been accused of this a lot in recent times but this is prevalent, with less devastating consequences in other religions as well. Christianity teaches some very intolerant stuff (only believers  in Jesus Christ will be granted eternal life) to its adherents. Some Hindu sects also teach their children that Christians and Muslims are their enemies and that India belongs to the Hindus and that other followers of other religions are outsiders and should stay "within their limits". This kind of indoctrination of young, impressionable minds is very effective in ensuring a lifetime of hate and resentment towards others. 

I started thinking a lot about this due to three things that happened coincidentally at the same time. I watched the Pakistani film "Khuda ke Liye" which depicts how a young man from Lahore is brainwashed by a Maulana who quotes verses of the Quran out of context and makes him do some very despicable things. The film climax shows a court scene where another Maulana (played very well by Naseeruddin Shah) demolishes each of the fanatic's arguments with references from the Quran. The film goes to show how people misuse religious scriptures which are written in languages that are understood today by a few to disastrous consequences.

Around the same time, I saw a television debate involving the actor Irfan Khan about his comments that Islam has become very ritualistic and people are not following the real tenets of the religion which call for inner change and introspection. I find this is true for nearly every religion! Most religions today have become extremely ritualistic and emphasize external activities rather inner changes. 

Islam has indeed come under a lot of scrutiny, as I said before, due to the rather dramatic and serious effects of its indoctrination in the form of horrendous and innumerable terror strikes that have killed many. However, as is evident, this indoctrination is going on, in some form or the other in almost all religions.

I, rather surprisingly, realised recently that I myself have been a victim of this indoctrination by a Jain monk. Suffice it to state that this has resulted in me developing a very deep-seated view about certain things which has affected my thinking about certain aspects of my life. My recent foray into meditation has helped me realise this and has also helped me in cleaning up my thinking. It is obviously not easy. It will take a lot of effort to dust away the many layers of negative thinking that have gathered over the years.

This brings me to the question I raised in the title of this post. What is the real cause of this kind of indoctrination? In my view, there could be two reasons: 
  • the clergy genuinely believe their religion calls them to do this
  • the clergy do this to achieve some selfish goals
Most religious texts are written in old languages that are not popular in today's age. They are also often written in the form of poetry with a generous use of metaphors and allegories. Typically, these can easily be misinterpreted by the reader. So, some clergymen can mistakenly read some parts of the texts in a way that inspires them to indoctrinate the youth of their religion to do things that were never intended by the author of the texts.

Another possibility is that the clergymen actually understand that the original intent was never to cause harm to anyone but despite this, quote from the scriptures in a manner that justifies the acts, mostly out of context and to suit their own deceitful agendas.

Whatever the cause, it is important for saner minds to prevail. Let Islam not be the only religion that is reviled. Though it is possibly causing the most harm, other religious men and women are also guilty of the same crime, albeit, to a lesser extent.

Wednesday, July 27, 2016

Just where are we headed?

These days, every morning, when I wake up and turn Wifi on, I dread the alerts that my NDTV app has waiting for me. It is just one thing after another. If you look at the way violence has increased in the past year or so, it is quite alarming.

There were multiple attacks in France, so many in the US, one in Australia, in Bangladesh, so many in Afghanistan, India and Pakistan. Many countries in the world are getting added to the list. Though most of these are terrorist attacks, there are some which are being carried out by disgruntled individuals as well.

Why is there this spurt in violence suddenly in the world? Why is there so much disturbance suddenly in the world?

We also have political upheavals in many parts of the world - the threat of the breaking up of the EU, the threat of the most powerful country in the world being headed by a capricious, bombastic man, coups and failed coups in many countries.

In my science class in high school, I learnt that the world always moves in a direction of increasing entropy. This definitely seems true in the current circumstances.

Sunday, July 24, 2016

How a ten minute meditation routine every morning helped me

I have been traditionally wary of meditation. I have participated in a few meditation sessions where a guide would ask you to focus on the breath for a long, long time and I would just not be able to do it.

A few months back, however, I chanced upon an article that talked about a ten minute meditation routine every morning  using an app called Headspace. The author said that he benefited immensely from it. I decided to give it a try. The thing I found attractive was that it was only a ten minute routine.

So, I downloaded the app and tried the ten day free pack they offered. I started to like it. The best part was it was only ten minutes. This did not make it difficult. You can sit comfortably on a chair. The sessions are guided. The guide understands that the mind can wander and says that it is only natural for this to happen. All you need to do when you realise your mind has wandered is to gently bring it back to the exercise.

Another good thing about the app is that it has different parts to it. It is not just about focussing on the breath. There are things like visualisations, introspections and other techniques which make the different sessions interesting and not at all boring.

The key aspect in these sessions is being aware of things and noticing what the mind is thinking and how it behaves. It's almost like you detach yourself from your mind and watch it in third person! This makes a dramatic difference to the way you think.

I have been taking the monthly subscription for four months now and have experienced some of the most profound changes ever in my way of thinking. I know this may sound unrealistic. I could of course say that these changes have nothing to do with the meditation and it is mere coincidence that they have happened around the same time. But I don't think that is true. It cannot be a coincidence. The fact that these happened after about a month of doing this and continue to happen has to have to do with this new change in my routine.

I am planning to continue doing this for now. I have my morning cup of black Darjeeling tea when I wake up and then do the ten minute meditation and then go about the rest of my day. 

Sunday, July 17, 2016

Handling a fistula rupture

For those on dialysis, an AV Fistula is a lifeline. We must protect it at all times. When a fistula is created, we are given guidelines like the following to protect and maintain them:

  • Don't allow Blood Pressure to be measured on that hand
  • Don't allow any injections to be administered on that hand
  • Don't carry heavy weights with that hand
  • Don't sleep on that side
I am quite scared of a fistula rupture. Most people on dialysis have some aneurysms (bloated or bulging veins) on the fistula hand. These are the things which healthy people find scary, weird or ghastly depending on how well they know you! :-)

Many experts have warned me of a rupture. I cannot change my fistula because the number of possible access sites left in my body are low. With nineteen years on dialysis behind me and hoping to continue for a long, long time (unless of course I get a transplant), I need to preserve my fistula for long.

I read this and this article on the blog Big D and me which I found very useful to handle fistula ruptures. The key point is this:

"Press down with your finger and Lift your arm above your head!"

All dialysis patients with an AV Fistula need to memorize this like a mantra and repeat it every day so that we never forget and are ready if and when this happens.

Thursday, July 14, 2016

19 down, many more to go!

Today, I successfully complete 19 years on dialysis! Of these, there have been some years on hospital hemodialysis, some years on PD and most years on Daily Nocturnal Home Hemodialysis. And yes, 11 days on a transplant! Looking back, I haven't done too badly for myself!

Here's to my 20th!

Saturday, July 9, 2016

The National Dialysis Program takes off - surprisingly early!

In this year's budget, Finance Minister, Arun Jaitley had announced the National Dialysis Program which aims to have a dialysis centre in every district of the country under the PPP model. I was skeptical initially on the contours of this program and how it would be implemented. I was also concerned with how long it would take for the program to actually be rolled out.

Surprisingly, many states have already jumped onto the bandwagon and are in various stages of starting the program using the PPP route. The Andhra Pradesh government was the first to do so and has already completed the tendering process for the 13 districts of the state.

This is really a welcome change from the slow manner in which government projects are generally rolled out. Various other states are in the process of rolling this program out.

Some good aspects of the guidelines of the National Dialysis Program:

  • Quality makes an appearance, well, not in the most perfect manner but definitely in a non-insignificant manner! The program talks about staff ratios, separate machines for positive cases, Kt/V targets etc.
  • There is a facility for Above Poverty Line patients to avail dialysis at these centres by paying what the government is paying the providers.
  • There is a requirement for a double RO treatment plant which means even if one plant breaks down, dialysis will not stop
  • There is a schedule of investigations to be performed for the patients and this includes viral markers, iPTH apart from the anemia management and biochemistry related parameters

I am still a little worried about how all this is going to be monitored and compliance ensured. But I have been surprised with the initial pace at which this has happened. Hopefully, I will be surprised in the future as well!

Sunday, July 3, 2016

Aakar Patel's attack on vegetarianism - flawed reasoning, superfluous and badly written

Aakar Patel writes in today's Times of India on "10 reasons why DiCaprio shouldn't preach vegetarianism to desis". The article is about a forthcoming visit to London by RSS chief Mohan Bhagwat for an event of some Sangh group in the UK. Some celebrities like Leonardo DiCaprio and Richard Attenborough are expected at the event to talk about the benefits of vegetarianism.

Before I go any further, I would like to state that I am neither a member nor a supporter of the Sangh Parivar. I am a vegetarian by birth and now by choice.

Patel, for some reason, includes vegetarianism in a purported "war being forced on a majority by Hindutva".

Patel's first reason is that the word 'non-veg' is a word that only Indians use. How that implies that DiCaprio should not talk about vegetarianism is lost on me!

Reasons 2 and 3 contradict each other. First he says that 70% of Indians are meat eaters. Then he says vegetarianism hasn't helped Indians as our life expectancy is low and that our incidence of diabetes and cardiovascular diseases is high. Isn't Patel implying the opposite of what he's setting out to prove?

It is true that Indians have the highest incidence of diabetes but that is due to historical reasons (many, many years of famines where the Indian genes have adapted to store fat and carbs).

In #4, he says vegetarianism does not represent some higher achievement. Okay. So what? The reason many vegetarians are vegetarians is that eating meat seems very cruel. Especially the modern abattoirs which adopt some horrible methods to produce meat cause many meat-eaters to give up meat as well.

In #5, he says Patels are the only low-caste folks that do not eat meat and that is because of Hindutva. This may be true. But that does not mean DiCaprio should not speak about the benefits of vegetarianism! What is the connection between the two? Is there some link between him being a Patel and this point?

In #6, he says meat-eating is a very low-caste thing and vegetarianism is considered a high-caste thing. This could be true for some vegetarians but this is definitely not the case for all!

He then goes on to make a point about Gandhiji's position on meat eating and milk. Again, no connection to the topic at hand.

Point #8 is a repetition of Point #5. In the next point, he talks about eateries that have caste related names. Again, Mr. Patel, this is true for only a handful of eateries! Please do not generalise. I honestly have no clue about what #10, a self-confessed digression, has to do with this topic.

Many vegetarians in India would say that eating any meat is wrong because of the cruelty involved. Killing and eating a cow is as wrong as killing and eating a chicken. Both are life forms. Both experience the same amount of pain and suffering. No one can justify eating a chicken or a goat if they do not eat cows.

Granted, as Patel says, there is bigotry in India. But to make the case for meat eating using this is not fair. Fight bigotry for bigotry's sake. Fight the way some Hindus use caste and the 'holy cow' to attack others. Don't use these to fight vegetarians.

There could be some vegetarians who are like what Patel describes. However, make no mistake, there are many who are vegetarian not because they want to be high-caste, not because they want to be pure, not because Gandhiji told them, but because they genuinely want to avoid cruelty to animals.

One swallow does not a summer make!

Money, power or fame - what gets you high?

I think most people measure success in terms of their acquiring one or more of these three things - money, power or fame.

For a vast majority of people, I am guessing, it would be money. The more money they make, the more successful they consider themselves. They would also look at others and consider them successful if they've made a lot of money.

For people in politics, people in the government, people deciding national and state policies, I would think power would get them high. The power to influence people, the power to change things, the power to change an entire country's future would all be measures of success for them.

For some people, fame would be important. They like to know that people are talking about them. They like to see their name published in the newspapers. They like to know that people appreciate their work. Scientists, researchers, writers might probably come in this category.

There would be many people for whom a combination of these would work. Our Prime Minister Modi, for example, I think would be driven by power and fame. For corrupt politicians, it might be money and power. For businessmen like the Ambanis, it could be money and fame.

There possibly is a fourth thing that drives some people - the genuine, selfless desire to touch people's lives. The people who serve the poor, the suffering without expecting anything in return would come under this category.

I know some people who are like this. Many of the trustees of the Hyderabad based Jain Dialysis Trust (Bhagwan Mahavir Jain Relief Foundation Trust) are like this. I know one of them - Mr. Inderchand Jain personally. I see no clamouring for fame or power in this man. I only see a genuine, selfless desire to serve poor dialysis patients. Even a 2 minute conversation with him leaves you feeling warm and nice. In this world driven by greed, it is people like him who make you feel that humanity still exists. There is still hope.

I, personally, still aspire for one of the original three. I am not going to reveal which! Those who know me well would know. I wish I could be like Mr. Jain however. If I genuinely, selflessly touch even 1% of the lives he has touched, I would consider my life a great success.

Saturday, July 2, 2016

Karnataka government likely to enable free healthcare for all cancer and dialysis patients

The Karnataka State Government is likely to enable all cancer and dialysis patients to get free health care similar to the current facilities available for those below the poverty line. Recognizing that these two diseases eat into the family's life's savings, former Health Minister U T Khader said: "Many patients have been pushed into poverty as they cannot afford the treatment. The move will mitigate their financial problems to an extent."

This is a welcome step. It is a pleasant surprise that a government is thinking on these lines. Both cancer and dialysis render hundreds of families penniless without any guaranteed cure or relief. People who are poor often give up and let the patient die. The middle class are often made poor due to the severe strain the treatments put on the family's finances.

The government must also simultaneously ensure that adequate infrastructure is setup to cater to the increased population that will now avail the treatments. The availability of good quality dialysis centres would be the first requirement for at least the dialysis part. I am sure similar facilities (chemotherapy centres?) would be needed for cancer treatment.

Any number of companies would be interested in partnering with the state government to set up dialysis centres using the PPP route. The government needs to ensure that these centres meet quality standards and are not focussed on making a quick buck.

This year has been good for health care, especially dialysis! For the first time, we hear governments talking about this massive problem. Only about 10% of people who need dialysis get dialysis in India. This can only be changed by government intervention.

Friday, July 1, 2016

Dinner menu

In my house, we have been used to variety for dinner. We don't have the same thing every night. It's not even a standard menu like lunch. For lunch, the standard stuff is rotis, rice, dal and a vegetable. The vegetable keeps changing every day. Sometimes, we would also do a different dal as well, other than the regular toor dal. But dinner was neither the same nor standard. For example, one day we would do Parathas, Paneer Butter Masala, Rasam and rice. Another day, we would do Wada Sambar and Dahi wadas. Most Sundays, my parents and I go out for dinner. On Sundays, we try to have something fancy for lunch.

We have luckily not had much attrition when it comes to cooks. This makes it easier for my mother to teach the various dinner items to the cooks. However, the tough part is deciding what to make for dinner every day. When I switched to a dinner of only soup and salad a couple of years back, things kind of fell apart. Since my parents are not fussy about food, they defaulted to simpler stuff for dinner.

Sadly, my soup-and-salad-for-dinner fascination did not last beyond a few months. When I reverted to normal dinners, somehow the dinner menus became a tad boring. The problem was more around deciding what to make rather than the making itself.

Yesterday, I was feeling a little under the weather. I took the second half of the day off from work. After a two hour nap, I was playing the fool when I suddenly decided to solve this dinner menu problem once and for all.

I opened an Excel file and added a column for days of the week. I filled in about four weeks worth of days. I then started writing different menus for different days. I also put down a separate entry for each Sunday lunch.

In about half an hour, I had come up with a different menu for every night of the month and a different fancy lunch menu for every Sunday of the month!

Looking forward to July like never before!

Sunday, June 19, 2016

Gulbarg massacre verdict - a grim reminder of how a state failed its people

A special court in Ahmedabad sentenced 11 people to life in jail for one of the worst massacres during the 2002 Gujarat riots. Some were given lesser sentences while many of the 66 people originally accused were let off due to lack of evidence.

The Gujarat riots will always remain a blot in India's history. By being the head of the state at the time of the riots, Prime Minister Narendra Modi's legacy will always be soured by a reference to these riots. At worst, the Modi government in Gujarat actively abetted the rioters by instructing the police to 'let the outrage of the people find an expression'. At best, it failed miserably to act to effectively control the marauding mobs. Either way, it failed in its paramount duty to protect all citizens of the state, irrespective of their caste, religion or creed or as former Prime Minister Vajpayee put it - to follow 'Rajdharma'.

In this case, as expected, the foot soldiers are the ones who are finally implicated. Most of them have probably received very little education. They were probably swayed by the rhetoric of their leaders who egged them to go and commit this beastly crime. There was a reference in the verdict to former Parliamentarian Ehsan Jaffri's provocation of firing from his gun triggering the mob's fury. Well, when a mob of several hundred people gathers outside your home and the police and other high ranking government officials ignore your calls for help, anyone would resort to every possible way to try and save one's family.

As I have said in the past, courts can only act on the basis of evidence. If no evidence has been found, the accused are let off. That does not mean a crime has not happened. It just means that there is no evidence to prove it. The guilty just got lucky. So, while the foot soldiers have been sentenced, the masterminds of the crime continue to roam free.

While much of India has moved on, giving the Narendra Modi-led BJP a massive majority in Parliament, the ghost of Godhra and the carnage after will continue to haunt people who have been affected. Their lives changed that day forever.

The last has not yet been said about the Gujarat riots. It will still be a while before all cases pertaining to this horrible period of India's history are closed for good. We must all hope that such pogroms never happen in this country again.

Saturday, June 18, 2016

The futility of a lot of Whatsapp groups

The Verge reported recently that the number of Whatsapp and Facebook messenger messages per day was three times that of the humble SMS. Around 60 billion Whatsapp and FB messenger messages are sent daily worldwide compared to only 20 billion text messages!

When I look at my Chats tab in Whatsapp on my iPhone, I find a whole lot of them are group chats. While some of these groups are useful and actually serve as a very useful communication tool, a large number of them are very quiet or worse - overactive with junk. Meaningless gibberish in the form of advice on life, irritating stock pictures of nature with enough 'gyaan' to put a sage to shame and sickening jokes that are not at all funny plague most Whatsapp groups that do not have strict rules in place about not posting such spam.

The Unreal Times, a source of news that is as reputed as The Verge estimates that almost two-thirds of the messages on Whatsapp are junk that make no sense at all. Ok, I made that up.

But honestly, I have most of my Whatsapp groups on Mute for the next one year. And as soon as they become unmuted after the year, I plan to mute them again, if possible forever. You might ask why I cannot simply leave the group? Trouble is I've been added by close friends who would be offended if I left. There's a price one must pay for everything in this world!

Another large number of groups are deafeningly silent. You need to literally shake them into being active. Now these are where your close friends or family are. You like communicating with them. You want to stay in touch. This is a great avenue to do this. But people get so busy with their day to day lives that they don't have time for such groups. Maybe they should be just destroyed!

I think the presence of the junk Whatsapp groups partially cause the good groups to become silent. People are just too fatigued by the sheer number of messages they get.

Which makes me think, maybe Whatsapp should charging a very small amount for each message sent. That way, people would use it sensibly and not post meaningless crap that irritates the hell out of everyone. 

Friday, June 10, 2016

Some unsolicited career advice for those starting out

I have been working for about seventeen years now. My first job was as a part time software developer in my mother's friend's company. Currently, I am a Co-Founder and Director of Patient Services at NephroPlus. As I keep saying, my only qualification for my current job is my GFR! Surprisingly, I have never worked in the area of my primary educational qualification which was in Chemical Engineering.

One thing that I have realised after all these years is that if you want to make yourself count in things that matter in any job, you need to understand the numbers, the financial part of it all. Whether it is software development or healthcare or even in an academic institution, money is one of the most important things in any venture. If you look at for-profit entities, this is pretty obvious. The company has to make money. It has to make surplus cash after accounting for all expenses. While this may not happen immediately, in the long run this has to happen for the company to survive.

Even in the case of not-for-profit entities, it is critical for enough funds to be available for the day-to-day operations to be run smoothly. So, though the entity may not generate surplus cash, it is important for some other balancing mechanism to be in place.

Let's face it: in any entity, cash is king. You need cash to run your entity. You need cash to keep it sustainable. You need cash to oil the machinery.

This is probably the only common thread across all organisations.

Therefore, you need to understand the numbers to be taken seriously in any organisation. You need to understand the various financial terms. You need to be well-versed with accounting principles. You need to be very comfortable with financial statements and how to read them.

Now, you may be content being good at your domain and you may find numbers very boring or worse, intimidating. But then, you must also be content not rising to the very top of your organisation. You must also be content not being involved in the decisions that matter.

The best way to get yourself setup for a position of importance is to do an MBA or an equivalent. An MBA gives you the necessary education to become adept at these things. There are many other ways to gain this knowledge. The important thing is to realise early enough that you need to learn these things and to make a plan to do so.

After all, that famous Bollywood actor of yesteryear, Mahmood had said in one of his films: The WHOLE thing is that, ke bhaiyya sabse bada rupaiyya!

Sunday, June 5, 2016

Indian dialysis patients, please hold your horses

The internet has suddenly been agog with news about the Wearable Artificial Kidney. Many articles did the rounds about the trial on seven patients for 24 hours straight. Many Indian patients and well-wishers got excited about this news and started dreaming of the day when they could simply wrap a belt around their stomachs and live an untethered life free of diet and fluid restrictions.

My advice to them: hold your excitement.

So, here's the truth: the device, though very exciting and the first real innovation in dialysis technology in decades is still in its very early stages. As you might have read in the article:

"this trial of the device was stopped after the seventh patient because of technical problems with the device. These included the excessive formation of carbon dioxide gas bubbles in the dialysis solution, and intermittent variations in solution and blood flow."

There will be many such roadblocks that will need to be solved. I have had the good fortune to meet with Dr. Victor Gura, the brain behind the WAK. Dr. Gura is an extremely passionate man, an exceptional genius and has the determination to see this project through. But it will take time. Rome, they say, wasn't built in a day. Neither will the WAK.

Once the WAK is ready for commercial production (and I estimate this to take another five years at the very least), it will be another ten years for it to come to India, if at all.

I sound very pessimistic but take a look at a related fact. The NxStage System One, which is the world's first portable hemodialysis machine has been available in the US for at least a decade now. There is no sign of the machine coming to India. India is not even on the radar of the company. This is quite understandable because most Indians pay for their healthcare expenses out of pocket and would not be able to afford the machine or the recurring costs of the supplies. Government and private insurance coverage is also minimal. Most insurance coverages are also restrictive and have low caps.

Keeping all this in mind, I estimate the WAK to become available for patients like me and you only after 15 years at the very least. So, we must still keep our excitement under check!

Wednesday, May 25, 2016

Ganga behti ho kyun?

I've been haunted by this song by Bhupen Hazarika recently. Addressed to the River Ganga, it moans the general decline of human values and the suffering of humanity, questioning the river on why she does not do anything about it?

Here is a YouTube video of the song:

Here are the awesome lyrics of the song (taken from Hindi Tracks) by Pandit Narendra Sharma:

बिस्तिर्नो पारोरे, अशंख्य जोनोरे  
हाहाकार खुनिऊ निशोब्दे निरोबे 
बुढ़ा लुइत तुमि, बुढ़ा लुइत बुआ कियो ?

विस्तार है आपार, प्रजा दोनों पार
करे हाहाकार निःशब्द सदा 
ओ गंगा तुम, गंगा बहती हो क्यूँ ?

नैतिकता नष्ट हुई, मानवता भ्रष्ट हुई
निर्लज्ज भाव से बहती हो क्यूँ ?
इतिहास की पुकार, करे हुंकार
ओ गंगा की धार, निर्बल जन को
सबल-संग्रामी, समग्रोगामी
बनाती नहीं हो क्यूँ ?

विस्तार है अपार, प्रजा दोनों पार
करे हाहाकार निःशब्द सदा 
ओ गंगा तुम, गंगा बहती हो क्यूँ ? 

अनपढ़ जन, अक्षरहिन
अनगीन जन, खाद्यविहीन
नेत्रविहीन दिक्षमौन हो क्यूँ ? 

इतिहास की पुकार, करे हुंकार
ओ गंगा की धार, निर्बल जन को
सबल-संग्रामी, समग्रोगामी
बनाती नहीं हो क्यूँ ?

विस्तार है अपार, प्रजा दोनों पार
करे हाहाकार निःशब्द सदा 
ओ गंगा तुम, गंगा बहती हो क्यूँ ?

व्यक्ति रहे व्यक्ति केंद्रित
सकल समाज व्यक्तित्व रहित
निष्प्राण समाज को छोड़ती न क्यूँ ? 

इतिहास की पुकार, करे हुंकार
ओ गंगा की धार, निर्बल जन को
सबल-संग्रामी, समग्रोगामी
बनाती नहीं हो क्यूँ ?

विस्तार है अपार, प्रजा दोनों पार
करे हाहाकार निःशब्द सदा 
ओ गंगा तुम, गंगा बहती हो क्यूँ ?

रुदस्विनी क्यूँ न रहीं ?
तुम निश्चय चितन नहीं
प्राणों में प्रेरणा देती न क्यूँ ? 
उनमद अवमी कुरुक्षेत्रग्रमी
गंगे जननी, नव भारत में
भीष्मरूपी सुतसमरजयी जनती नहीं हो क्यूँ ? 

विस्तार है अपार, प्रजा दोनों पार
करे हाहाकार, निःशब्द सदा 
ओ गंगा तुम, गंगा बहती हो क्यूँ ?
ओ गंगा तुम, ओ गंगा तुम 
गंगा तुम, ओ गंगा तुम 
गंगा... बहती हो क्यूँ ?