Wednesday, February 8, 2017

Mindfulness - that elusive state of mind

The next time you're sipping on your favourite beverage - tea, coffee, wine, whatever, take this simple test. Try to focus completely on the experience of drinking the beverage. Feel the liquid go into your mouth, feel the taste, the temperature, the consistency. Feel it go down your gullet. See how long you can keep doing this until your mind gets distracted by other thoughts.

I used to think that meditation was something very difficult and boring. Earlier guidance I had received advised focus on the breath without allowing the mind to get distracted. This was a horribly wrong approach to meditation.

I realised later (and I'll get to how in a bit) that meditation is nothing but mindfulness, being present in whatever you are doing. While eating, be present in the exercise of eating. While you're in a meeting, be 100% present in the meeting discussion. Do not think about other things. That way, theoretically you can meditate all the time without making it sound like a chore.

However, if you're like me, you will soon realise how awfully distracted our minds are. When we are drinking tea or coffee, we are thinking about something else. When we eat, our minds jump to one thing after another. When we are having a meeting with someone about something, our mind keeps racing to something else. When we go out to have lunch with family or colleagues, we keep checking our phones.

I started reading about this a few months back when I read an article online. I was introduced to an app called Headspace. There are obviously many other apps as well. I was honestly very surprised when I realised how the mind works. I have been following the ten-minute meditation routine every morning for the last many months and I honestly have had many life-changing experiences due to this.

I am still very, very far from being mindful in daily life. However, I can confidently say that I now at least realise the extent of the problem. A simple thing like drinking some water from a glass can be completely different when we do it being 100% present. For someone like me who is on dialysis, even something so simple can make a huge difference. If I am focussing on the water, I feel much more satiated than if I let my mind wander away to something else (which is the default behaviour for most of us).

I was prompted to write this post when I read this article yesterday. The article gives some tips on how to be more mindful:

  • Practice 10 minutes of mindfulness training each day
  • Avoid reading email first thing in the morning
  • Turn off all notifications
  • Stop multitasking
  • Put it on your calendar
I would strongly recommend that you read this article. I have truly experienced some very blissful moments due to being mindful from time to time. You should, too.

Tuesday, February 7, 2017

Book Review: Dialysis - An Unanticipated Journey

I was recommended this book by Dr. P. C. Gupta, who is the vascular surgeon who created my fistula. I hold him in very high regard. He is considered one of the finest vascular surgeons in the country, someone who can literally create a fistula out of nothing! He's known me for quite some time now and told me about this book the last time I went to meet him about some numbness on my fistula arm.

The book is not available in India and I had my brother in the US order it from Amazon. It came to me after a few weeks.

The book is written by David L. Axtmann who was on dialysis for more than thirty years when he wrote the book. He was diagnosed with kidney disease in 1968 when therapies like dialysis and kidney transplants were still in their early stages. Axtmann died in 2004, after about 36 years on dialysis. In the book, he describes his journey with kidney disease and dialysis. These were days when you got dialysis only if you were between 15 and 55 years of age because of the lack of widespread availability of the treatment. In those days, patients were taught to assemble their own dialyzers. There was no blood pump and patients dialyzed for about twelve hours each time. A lot of the patients got dialysis at home.

Axtmann takes us through the turbulent times he faced describing with great detail the various medical and other problems he had while getting treated. What is striking is his desire to continue studying, at first and then working even as he struggled to cope with all the problems dialysis brought with it. Axtmann was lucky to be supported by his wife Marlene throughout the journey. They also had some very good neighbours who stood by them in every hour of crisis.

Apart from being a very inspiring story, the book also gives some very good insights into how healthcare facilities, specifically dialysis were in the 1960s and after in the US. I often wonder why the US has been the birthplace of so much medical innovation. The book gives you some nice details on how dialysis patients were treated, how the quality of life was so important, how doctors valued the patient's will and how they were so completely committed to bettering what was available.

I would recommend this book to anyone who is on dialysis r is caring for dialysis patients. It teaches us a few important lessons. Dialysis definitely need not be the end of life. Despite being on dialysis, we can live fulfilling, productive lives, lives that we were meant to lead had kidney disease not happened.

Saturday, January 28, 2017

My take on the first half of PM Modi's first term

We are about half-way into Prime Minister Narendra Modi's first term in Government. With what was the biggest mandate anyone has been elected with in recent times, he was sworn in as India's Prime Minister in 2014. We are about half way into his first term. I say 'first term', not because I am certain this will not be his only term, but because it well may not be. Given his performance and the terribly bad performance of the opposition, notably the Congress, it would be surprising if he does not get re-elected.

Overall, I think the performance of the government has been good. There have been some very good initiatives in various areas - the economy, foreign relations, fighting corruption etc. Some would argue that a lot of it is more style than substance. However, there have been many genuine achievements. Yes, some have probably not been seen through. Many of the initiatives will take much longer to complete and be judged. Some will be continuous and will not have a defined end date.

I am, what people call 'right-of-centre' in my thinking. This probably makes me slightly biased in favour of Modi than against him. However, I think I am very balanced in my assessment of the man. I have written a number of blog posts on what he did wrong and many blog posts on what he did right.

I am too naive to see behind the scenes (if there was anything like that) the actual reason for demonetisation. I remember listening to the speech on November 8th and feeling that it was a master stroke against corruption and black money. A lot has been written about the poor implementation and even hidden agendas. I really don't have an opinion on this.

What rankles me still is that the man was responsible for the 2002 riots. I was reminded yet again about the horrors of Gujarat at that time when I happened to see a part of 'Schindler's List' playing a few days back on television on the occasion of Holocaust Remembrance Day. The terror in the eyes of the Jews being massacred by the Nazis was gut-wrenching to say the least. Well, yes, the comparison is too far-fetched. 6 million Jews were killed whereas about a thousand Muslims and Hindus together were killed in 2002. To me, what is similar is the feeling of being victimised by the state for being born in a particular religion.

Modi will never be forgiven by the families of those that were slaughtered in those horrible riots. To those who say that the Congress did the same with the Sikhs, I agree with them entirely. We cannot justify one wrong by citing another wrong. Both the actions were completely wrong. Both the leaders at the time must be blamed.

So, while Modi can be praised for the good he does, he must also be blamed for his wrongs. We cannot justify one by the other.

Most people of India apart from the Muslims, I believe, have moved on. For the others, he will always remind them of 2002. Fair enough. At the end of the day, if an election is held today, he will win hands down. That's the way democracy works. We must accept it and also move on.

Thursday, January 19, 2017

My address to the United Nations opening of the NGO Committee for Rare Diseases

I spoke (via video) at the United Nations opening of the NGO Committee of Rare Diseases recently. The committee aims to address issues pertaining to rare disease patients across the globe.

I spoke about the issues of access to drugs in developing countries. I also said that the work of the committee can help patients from countries like India. Here, patients did not have access to drugs that can cure them even though the drugs were available elsewhere in the world.

This is a picture from the event.

Tuesday, January 3, 2017

Encouraging healthcare workers to admit mistakes without the fear of retribution

Recently, someone on Facebook posted this link. It described a doctor who made a mistake during a procedure and refused to admit it. Later, when he remembered an incident from childhood when his doctor had done something similar to him as the patient, he went back and apologised to the patient. This led me to think about simple mistakes that healthcare workers make.

We all find it difficult to admit our mistakes. It is human nature. However, when there is a possibility of being penalised for the mistake, then the disincentive to admit it is even higher. This can lead to some dangerous consequences.

Let us take an example. A nurse in a hospital has to do a number of procedures ranging from the really simple to some that are fairly complex. Let us say that while opening a syringe, the needle unintentionally touched a non-sterile surface. The best thing to do would be to discard the syringe and use a new one. However, if the hospital had a stringent inventory control process and the staff was penalised or scolded for using excess consumables, then what was the nurse likely to do?

Human nature would make him continue to use the same syringe. Who wanted to be penalised for this? Who wanted to answer questions from the audit team? At the end of the day, the patient would be the one who would suffer the most. This could potentially cause a serious infection depending on what the syringe was being used for.

So, while it is important for the Inventory team to do its job and ensure that operations are run in a prudent manner, hospital authorities need to figure out ways by which situations like the above can be avoided. While Inventory shortages were easy to identify, it is very difficult to identify the real cause of, in this case, an infection. Often, from the point when something like this happened to it actually manifesting itself in the form of symptoms, a lot of time has passed. So many things could have happened in the interim. How can anyone, then pinpoint that usage of that contaminated syringe caused the infection? This makes it easier for the nurse to continue to use the syringe rather than discard it and take a new one and then be reprimanded by the authorities for not being more careful.

What could be the possible solutions?

I think the first thing that needs to be done is to remove any financial penalty on the individual that commits the mistake. This can be the worst way to fix the issue. Assuming that a financial penalty, (especially when the stakes are so high) would cause the staff to be more careful in such cases is wrong.

Hospitals should allow for such instances while putting SOPs in place. Staff should be encouraged to document such instances so that audits can take these into account without any reprimands or penalties.

In some cases, proper training and education can also help avoid repeated mistakes.

Healthcare poses such challenges all the time. There is a very thin line between prudence and foolishness. Crossing this line can harm patients. At times, this harm can be irreversible. It is upon the administrators to identify the ways in which this can happen and fix the issues.

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.