Monday, January 22, 2018

Making an annual plan

I recently chanced upon an article that talked about planning an ideal year. I have found my life meandering recently and this article resonated with what I wanted to do. It basically encourages you to make a plan for the year and then taking steps to fulfil the plan. 

Making the plan involves listing down the various aspects of your life that are important to you like work, family, financials, hobbies, spirituality etc. and then writing down your annual goals for each of these aspects. The key is that each of these goals should be measurable and time bound. Then you plan a month at a time breaking down the annual goals and setting goals for the coming month. You conduct periodic reviews to see how you’re doing. I highly recommend reading the article.

Many of us go about life in a completely reactive manner. We let things happen to us and then act accordingly. This is a poor way of living, in my humble opinion. I believe that each of us must aspire to live a life that is dictated by what we want to do with it. This may seem obvious but funnily, we don’t do things this way. We go about life in an ad hoc manner - typically juggling work and family without doing anything else about the other aspects of life that we consider important. The excuse is typically that we don’t have the time.

After many years, when we look back to see what we have achieved, we might not feel very good about ourselves. We might feel that we have prioritised completely wrongly and we could have done much more with our lives than make progress only on the work, family and financial sides.

We, as human beings have so much more potential to achieve things. We need to identify what we truly care about and then work towards making progress on those fronts, year by year, month by month, day by day. Only then can we look back and feel good about the life we’ve lived.



Saturday, January 20, 2018

An unintended benefit of having a small appetite

As I wrote some time back  I stopped taking antacids recently. This has reduced my appetite quite dramatically. I have now lost about eight and half kilograms. I continue to put on less fluid weight between dialysis sessions.

Yesterday I realised that I got one more benefit from this - eating mindfully.

I am a big fan of idlis. I frequent this place called Govind’s in Hyderabad which serves really delightful idlis. When I had a ravenous appetite, I used to gobble up a large number of idlis quickly, one after another. I did realise at some point that I was eating too fast and that I should slow down and try to relish every morsel. I tried but inevitably after a couple of bites, I would becomes fast again.

Yesterday, I knew I was going to be able to eat only one plate. I ate slowly, relishing every bite, feeling the taste and texture of the idli and the chutney. I enjoyed the experience.

Many of us probably go about life in such a rush that we don’t actually enjoy each moment even though we are doing something we purportedly like. Our minds are occupied with a hundred other things and we don’t realise that we have gone through our favourite activity without actually being present. Meditation has helped me realise this and try to change it from time to time. I have a lions way to go but I at least I have begun the journey.

Being present and being active in the moment giving our full to the present activity enables us to live a life more fulfilling.

Sunday, January 14, 2018

Having a blind uncle is better than having no uncle at all




Many states in India have begun offering free dialysis to its citizens. Some are under the Central Government’s National Health Mission Free Dialysis Program  Some schemes already existed before this program. Some of the schemes are flawed in their design and some are flawed in their execution. A few of these schemes are implemented very well.

It takes a lot of effort, knowledge, asking the right people for advice and most importantly, intent for a government to do things the right way. Not all schemes have got the details right. What constitutes a well-designed and well-implemented Dialysis provision scheme? I would list the following items as some of the important aspects to consider if genuinely good outcomes are desired:

- Providing thrice weekly dialysis. Some schemes offer only twice weekly sessions. World over, the minimum recommended dialysis frequency for dialysis patients on MHD is three times a week. Anything more is welcome. Anything less can be called half-baked at best

- Including ESAs, IV Iron and other medication like phosphate binders and blood pressure medication. Without this, it is very difficult to maintain good anemia management and effective management of co-mobidities like Mineral and Bone Disorders, Left Ventricular Hypertorphy etc.

- Including blood tests and other investigations. If this is not done, it is like shooting in the dark. How can clinical outcomes be managed if they are not even measured?

- Implementing a comprehensive Renal Replacement Therapy program by including Peritoneal Dialysis and importantly, Kidney Transplants under the purview of the scheme

- Having a comprehensive prevention program where governments target population segments that are considerd high-risk such as diabetics, hypertensives and implementing an effective program to manage such conditions to prevent or at least delay progression to kidney disease

These are only some of the aspects which must be included.

However, it is very difficult to expect a government who is not sure of whether they would be continuing for another term to think long-term and to be able to effectively come up with such an ideal program. After all, such as program would require a lot more funding, effort and infrastructure to be able to implement.

In these circumstances, should no program be implemented at all?

We have a saying in Gujarati that loosely translates to “It is better to have a blind uncle than no uncle at all.” In this context, it means that it is better to have a flawed program than no program at all.

Perfection is difficult to achieve at first. Implementing a flawed program and then continuously keep making changes to the program to include the above items in the program might be a better idea.

Rome, they say, wasn’t built in a day. Implementing a Free Dialysis Program in a country like India is arguably even more complicated. Let us take it one step at a time. Let us make one improvement at a time.

Saturday, January 13, 2018

Should constrained public healthcare systems spend on expensive maintenance therapies?



I often envy countries that have public funding or a mature healthcare system that takes care of expensive drugs such as Eculizumab that is the only known approved treatment for my disease Atypical HUS. I often wish that my country too had a healthcare policy that could provide this drug to me.

India’s public health spend is a little over 1% of GDP. This is way below the world average of about 7%. The National Health Policy 2017 has targeted to increase this to 2.5% of GDP.

Yes, this is low as well but we must remember that India is a severely resource-constrained country and we need to spend every rupee after a lot of thought. There are several basic areas where India lags behind world averages when it comes to healthcare statistics such as Maternal Mortality Rate and Infant Mortality (which, thankfully are getting better, see here and here). When many Indians do not have access to basic healthcare, should the government spend on expensive things like the drug Eculizumab? Many times, questions are also raised on maintenance therapies like dialysis.

I have had several discussions with people on this subject. I have usually taken the line that the government should spend on dialysis along with other aspects of healthcare like the ones mentioned above. 

The overarching theme of any such decision would usually be the number of lives being saved or affected. Kidney disease affects about 10% of the world’s population and about 1% require dialysis or are on a transplant. aHUS affects 2-3 per million population. With such small numbers, do such therapies really merit funding by the government? The US Government spends about 7% of its Medicare budget on dialysis which accounts for less half a percent of its population. We, in India, some would argue would be better off spending this money on primary healthcare rather than maintenance therapies that are often life-long with poor outcomes.

Unfortunately, healthcare policy has to be driven by the number of lives affected. There just is no other reasonable way. Would you rather spend crores of rupees to save one life or use that money to save hundreds of lives? That is the unfortunate truth today for India. India cannot afford to spend on secondary and tertiary healthcare when the primary healythcare system itself is in shambles.

This means that I will probably have to just wait in the hope that another cheaper drug comes out to treat my condition and becomes available in India. This means I will not be able to get a kidney transplant any time soon. This is a little difficult to digest as I see so many people around me getting a kidney transplant and not needing dialysis any more. But, at the end of the day, it is what it is.

Friday, January 12, 2018

The agenda for the 2019 Lok Sabha elections



I saw a report a couple of days back about the BJP planning a ‘mahayagna’ to appease the Gods for the 2019 General Elections. We are also seeing the BJP and the Congress bring Hindutva into the agenda for the Karnataka assembly elections. Rahul Gandhi has been on a temple-visiting spree and is having people in the Congress talk about him being a Brahmin. Is this really what people in the country care about?

I often wonder why political parties speak about issues that are irrelevant to people’s basic needs like food, shelter and clothing? That’s actually a wrong question. The real question is why political parties speak about issues that we feel are irrelevant to people’s basic needs. One thing’s for sure. Politicians are all shrewd, self-serving people. So, why then do they talk about things that we feel are irrelevant to people?

I think the rather troubling answer is that politicians would not talk about things that are irrelevant to many people. To many Indians, things like religion and caste are probably more or at least as important as food, shelter and clothing. Why else would politicians make these factors so important in the days leading to an election?

I think people value their sense of identity, their sense of being a part of a larger something - a community, a caste, a religion irrationally. They do not realise that at the end of the day these things don’t matter much at all. These things are probably fictitious structures created by our species centuries ago and have no real significance whatsoever. However, they have been ingrained so deeply in our psyche that we find it impossible to believe otherwise.


Politicians understand the way people think. They know that they don’t have to win arguments made in television debates to win elections. All they need to do is to win the minds of people which have so many demons, that they can pick and choose what suits them best. So, despite all we know, the agenda to the 2019 Lok Sabha elections may not be the so-called development plank that PM Modi and the BJP keep talking about. It may well be about emotive issues that don’t actually matter at all.

Thursday, January 11, 2018

Dialysis patients, be thankful if you have a supportive family



I have been very lucky to have such a supportive family in my journey with kidney disease. I realise that everyone is not so lucky. I have seen all kinds. Some are extremely supportive, some not so much. Some, unfortunately treat the patient like a burden. No wonder so many dialysis patients are suicidal. A supportive family is a blessing. If you have one, be grateful. 

I don’t blame families for getting tired of the disease. Kidney disease can be frustrating both for the patient and the family. While there is no doubt that it is more unforgiving for the patient, families often are affected quite badly as well. Typically, it is the closest caregiver who is affected the most. Accompanying the patient to dialysis thrice a week, making sure medication is taken, going to a range of doctors from time to time, hospital admissions and blood tests, all take a toll on the family member as well.

Then there is the important aspect of expenses on the treatment. In India, where most expenses are borne out of pocket, this can be quite debilitating for a family’s finances. Many families have their entire life’s savings wiped out in a few years. This increases the frustration of the family especially since the patient has not been cured by the time this could happen. It is an unending moral dilemma. Should the limited resources of a family be spent on a maintenance therapy with the patient becoming worse over the years with increasing co-morbidities? All this turmoil can cause a lot of mixed emotions among the family. Many family members take their anger out on various unrelated targets like hospitals, doctors, other family members, colleagues etc.

Patients can try and ease some of the trouble by becoming as independent as possible. Patients should try to get back to work if possible. They should take control of their health. They should ensure that they take their medication as prescribed on their own, follow their diet prescription diligently and even try to go to the dialysis session on their own. All this helps ease the burden on the family. Patients must keep telling them how much they appreciate the family’s efforts in helping. Indians are not very vocal about gratitude. Merely feeling grateful is not enough. Making it known is equally important.

All this helps to build a relationship that is not dysfunctional but mutually supportive and appreciative. This can go a long way in adding to the patient’s feeling of well-being and eventually make it easier to deal with the ups and downs of this disease.

Tuesday, January 9, 2018

Why more people don’t do nocturnal home hemo in India




I often wonder why more people don’t do nocturnal home hemo in India? To many people, it might seem it is about the cost. I don’t think this is true. I know many people on dialysis who are far more wealthy than I am and yet do not pick this modality.

I think it has a lot to do with fear. Most people have either had a bad experience in the dialysis centre or hospital where they get dialysis or have seen someone else have a bad experience. They fear that should something like that happen at home, how will they be taken care of? They feel that the absence of an emergency support system at home, there could be a high risk of death. The emergency management infrastructure in India is also woefully inadequate. An ambulance could take long to get to you. In the US it is different - help comes to you within minutes.

What many people don’t realise is that if you’re doing daily, nocturnal home hemodialysis, the chances of anything going wrong during treatments are very low - far lower than something similar happening in the hospital. The reason is that the dialysis is much gentler. The blood flow rate and ultrafiltration rates are very low and this dramatically reduces the risk. The risk is not zero but it is low.

Another possible reason is that people do not want to take the hassle of taking care into their own hands. Currently, they show up at the dialysis centre and everything else is done by the team at the hospital. I am not sure if people like the control they get when they bring dialysis home. This is also possibly one of the reasons some people, even if educated about Peritoneal Dialysis are loath to adopt that modality despite the tremendous freedom it gives them. 

The benefits of doing long duration, more frequent dialysis at home are enormous. Freedom from most diet and fluid restrictions, flexibility to fit dialysis into your schedule rather than the other way round, better quality of life, better longevity and lower incidence of comorbidities are only some of them. The low adoption of this modality is there even in countries where people pay little or nothing out of pocket for healthcare. This lends credence to my  assertion that this has to do with things other than affordability.

This is sad because a lot of people are missing out on the better life possible due to this amazing modality.

Wednesday, January 3, 2018

Science and Religion




The debate between science and religion has been raging for centuries now. I have always been fascinated by this debate. Having been an extremely religious guy for a long time, I was always intrigued by arguments from both camps and have endlessly debated this in my own mind without ever having reached a conclusion.

Religion is this constant theory, unchanging with times, based on dogma, based on one or more religious texts. Science is open to change. Scientific theories are discarded all the time based on new evidence or in favour of theories that can explain known phenomena better. Both the approaches have their advantages and disadvantages.

Science is completely free of dogma. If you are able to prove a new theory sufficiently well, it is accepted and the old theory is discarded. Religion refutes all new theories and claims that science will eventually come around and accept that religion holds the key to understanding the world. 

Science is the easy pick among the two for many. You believe what you see. You believe what is proved by reasonably accurate experiments that can be replicated in different circumstances. For example, it is a well-established fact that the species Homo sapiens originated somewhere in Africa and then moved to the rest of the world. This is based on a number of excavations that have proved a number of traits like the size of the species, the tools they used, the food they ate etc. The trouble is let’s say you believe that and refute religion’s claim about the origin of man (based on which religion you believe, this could again be very different). After a decade, some archeologists excavate some site in Australia and find relics of ancient man that pre-date the African relics. Suddenly all hell would break loose. Science would have no hesitation in accepting that the old notion of the African origin of man was flawed and that the species actually existed before this in Australia.

This is true for every aspect of science. Medicine keeps changing every day. What was supposed to be good for the heart one day is found to be not good the next day. The anemia target range for those on dialysis keeps changing faster than a dialysis patient’s dry weight!

Where then does that leave someone who discards religion in favour of science? 

On the other hand, religion does not care about evidence. It claims to be the ultimate truth. It does not need evidence. This is a difficult pick but if you have deep faith in a particular religion, you don’t need to worry about the changing evidence. You rest in the belief that what your religion says is all true.

What about some incontrovertible evidence then about things that are firmly established in science? For example, most religions say that the earth is flat and that the sun revolves around the earth? This is clearly not true. The US would not have day when India had night if this was true. This is something that can never be proved wrong. Where does that leave religion?

So, this debate will continue to rage forever. While religion relies on faith, science, on evidence. Take your pick but be ready to challenge yourself whenever a troubling question arises.

Tuesday, January 2, 2018

Being grateful


I have been meditating for ten minutes every morning for the last many months now. I use an app on my iPhone for this. For me, this practice has been a life-changer. It has completely changed the way I think. In today’s exercise, the topic was gratitude. I have read multiple articles about how gratitude helps to be happy. But in today’s exercise, I was asked to actually practise it. The ten minute exercise was really beautiful.

I have so much in my life to be grateful for. I think the most important reason I have for gratitude is my parents. This may seem cliched. But I honestly did not feel this way until not so long ago. Today, I cannot thank them enough for all they have done for me. Right from ensuring that I have a good education to providing for every comfort I had during childhood despite being a family with limited means, my parents have been such an important part of my life. During my journey with kidney disease, they have been such solid pillars of strength that I can never imagine having come so far without their support.

I am also grateful for NephroPlus and Vikram and Sandeep who have been a part of this incredible journey. I credit Vikram for being the main reason NephroPlus has reached such great heights. His amazing foresight, his legendary networking and his ability to never lose sight of the big picture are things without which this company could not have achieved what we have been able to achieve today.

I can safely say that without the ability to do home hemodialysis, I would not be alive today. I am so grateful to be able to do this type of dialysis. Much of what I am grateful for is thanks to this modality. I am able to eat and drink pretty much what I what. I am able to work, exercise and travel freely. I am able to do so many things which are due to the benefits of home hemo.

I am so thankful for having reasonably good writing skills. This has enabled me to write this blog which has brought me so much appreciation. I was able to be a part of the NephroPlus journey only due to this blog. Had Vikram not found this blog while researching for kidney disease in India, we would never have met. Who knows, he might have started something else in healthcare. This blog has made it possible for me to touch so many people by encouraging them to lead full lives despite being on dialysis.

There are so many more things that I have to be grateful for - friends who have given me such an important perspective of life, my brothers who have always been there in times of need, my teachers who have played such an important part in shaping my thinking, my doctors who have constantly endeavoured to enable me to live the life I wanted to live.

I am really thankful for all these blessings in my life today.