Sunday, July 30, 2017

“God doesn't exist. But don't tell that to my servant...”

“God doesn't exist. But don't tell that to my servant because I am afraid he might kill me while I sleep.” - Voltaire

I came across this quote in the book Sapiens by Yuval Noah Harari. It struck me as really profound. The concept of God was probably created to bring some kind of order to society. Think about it. Do you think a majority of the people who do not have the fear of divine punishment would stay away from things we consider ‘wrong’? Granted, there are some people who would not do ‘wrong’ because it is ‘wrong’. But how many such people are there? My thinking is that a vast majority of human beings, sapiens if you will, don’t do ‘wrong’ because of the fear of punishment of some kind - by the law or by God.

Take away the fear of punishment and then the world would quickly descend into chaos and anarchy. People would be doing all kinds of things - murder, rapes, cheating, dacoity, you name it.

Having law was simply not enough. People would be punished only if they got caught and then there was also the burden of finding evidence to prove your guilt. There was something more powerful than law that was needed. God fitted the bill nicely.

The trouble is the concept of God relied on something called faith. You did not need evidence to prove anything. Nobody could question anything. Dogma was the order of the day. This lead to some rather unfortunate consequences: rituals and rules.

I think religion was a good thing that man made. However, the real problems began when layers kept getting added to every religion. With every generation came another layer - a layer of rituals and rules. “You should not do this”. “If you do this, this will happen”. “If you do this ritual, this can be cancelled out”. The rituals and rules became so complex and so irrational that religions today are probably completely unrecognisable when compared to their original forms. And the most important rule was “Theirs not to reason why, Theirs but to do and die.” No questions could be asked. That would be blasphemous. With this came absolute power for the clergy and unquestioned obeisance from the laity.

In the end, religion has become a monster that is being misused so badly that it completely defeated the purpose for which it was created.

Wednesday, July 26, 2017

Keeping busy is the best way to restrict fluids for those on dialysis

If you asked me what was the toughest thing about dialysis, I would say the fluid restriction. Restricting all fluids put together to a litre a day, which is the typical fluid volume most people are allowed is very difficult. Many people give different suggestions on how to limit fluids. Use a one litre water bottle and drink only out of that, squeeze a lemon in a glass of water and freeze it in an ice tray and then suck on a cube when thirsty, limit salt etc.

These options are great. However, I think the best way to restrict fluids is to keep busy. Working full time obviously, is the best option. If not full time, at least part time. If working is not an option at all, then find something productive to do that keeps your mind occupied. Everyone needs something to look forward to. In the book, ‘Being mortal’, Atul Gawande recounts how adding a vegetable patch and some pets to a home for the aged improved outcomes dramatically for all the people staying there. Everyone started looking forward to doing some work for the patch and the pets. They had something to do. They had something to look forward to.

In dialysis, apart from the mental benefits in terms of being productive, limiting the fluid intake is an added advantage. If you believe it is thirst that is causing you to drink more water, think again. This is completely a mental game. The mind is like a spoilt child. Tell it that you cannot have something and it will crave only that. If you keep it busy with something else, it will forget about what it cannot have.

Most people I know that have survived long on dialysis have been working. It need not be a regular job. It could be anything. It does not have to pay anything either. The mental benefits are far greater than anything else that you may gain from this.

Tuesday, July 25, 2017

How I fixed my non-dialysis day sleep problem

I used to relish my non-dialysis days for a long time. However, the numbness in my left hand  which was eventually diagnosed as Carpal Tunnel Syndrome did not allow me to sleep beyond 2 or 3 am. I would wake up with a severe sensation of pins and needles and pain in my left hand. I would need to massage it and shake it and then try to go back to sleep. I would be able to sleep for a short while and then the sensation would return. Around 4 am or so I would just give up and then wake up completely.

I was operated for Carpal Tunnel Syndrome in June which relieved the issue in the left hand. Strangely, the sensation began in the right hand almost immediately after the left hand was operated upon. You could argue that this looked like it was a psychological issue. Believe me, it was not. 

I was planning to watch for a while and then have the right hand operated too. However, suddenly I got to know that one of our NephroPlus partner hospitals was conducting a clinical trial on a device that cured Carpal Tunnel Syndrome without surgery. The device was invented by a German mechanical engineer who had the same issue and did not want to undergo surgery for it. I got in touch with the hospital partner and managed to get the device.

I have been using the device for two weeks now and I am happy to report that I was able to sleep through until 6:30 am this Tuesday, my non-dialysis day. Inspired, I took even yesterday (Saturday) off from dialysis and was able to sleep through till 6:20 am. I am so thrilled that it looks like this device will cure the issue for me without surgery.

I will post more details about the device here once I check with the team on whether it is ok or not.

Sunday, July 23, 2017

The secret recipe of longevity on dialysis

Recently, I completed twenty years on dialysis  In India, only a few patients complete such a long time on dialysis. I am fortunate enough to know 3-4 people who have completed a long time on dialysis.

Each one, I guess, has his or her own secret to live long on dialysis. For me, it is only one thing - get  as much dialysis as you practically can. I dialyze for 7-8 hours at night, six times a week. I can confidently say that I am alive due to this. There are many people who are on thrice weekly dialysis and have been on dialysis for longer than me. So I guess the magic recipe is different for different people.

Dr. John Agar, a nephrologist from Australia says dialysis is like love making: longer the better, gentler the better and the more frequent the better!

I couldn’t agree more.

When I tell people that I dialyse daily and that too for 7-8 hours every night, they are surprised. They ask me, “You need that much?”

Well, I don’t need that much. I choose that much.

 It is not rocket science honestly. The kidneys of a healthy human work 24 X 7 X 365. No breaks. Dialysis is simply replacing kidney function. So, it is quite obvious that the closer you to get to 24 hours a day, 7 days a week, 365 days a year, the better it is for you.

The best part of getting optimal dialysis is that it allows you to be more relaxed with the diet and fluid restrictions. I pretty much eat and drink what I want and however much I want. Since my body gets such good dialysis, I am able to swim every morning, work full time and travel quite a bit.

Yes, the long term impact of being dialysis is felt from time to time in the form of co-morbidities of various types but those are not avoidable. I manage to deal with them in different ways.

Again, I cannot emphasise enough that each individual is different. You don’t need to be on daily nocturnal dialysis to be able to live long. There are many people who’ve lived longer than I have and are on thrice weekly dialysis at the hospital. This is just my experience. 

The key, however is that the myth in India that you cannot live for long on dialysis is wrong and needs to be dispelled. Individuals can live long, happy, productive lives on dialysis. It’s only a question of how much you want it.

Friday, July 14, 2017

Twenty years with kidney disease

Today, I complete twenty years with kidney disease. Back in 1997, on this very day, I took those vaccines that triggered Atypical Hemolytic Uremic Syndrome, the ultra-rare disease that damaged my kidneys. In a matter of twenty four hours, my life had changed completely. On that day of course,  I had no clue about what was actually happening inside me. The initial symptoms were put down to side effects of the vaccines. Only when the symptoms did not abate after three more days, did we consult my family physician, Dr. Kirit Parekh who ordered some initial tests and discovered that my kidney function was affected. He then put me onto Dr. Girish Narayen, the nephrologist who treated me for a long, long time.

Update: here is a picture of me with him when I went to meet him on the twentieth anniversary of me meeting him back in 1997:

About ten years back, I started this blog and my first post was titled, “Ten years with kidney disease” and in it I had outlined the first ten years of my journey. There have been small ups and downs since then - some neurological issues, a cardiac problem (now resolved), arthritis, Carpal Tunnel Syndrome etc.

On the professional front, of course, the biggest thing that has happened is NephroPlus which has come to change my identity from ‘the guy on dialysis’ to ‘the guy on dialysis who co-founded India’s largest dialysis company’. Not bad eh? Thanks Vikram and Sandeep for this!

For the last twenty years, I feel very grateful. The entire duration has been on dialysis since my transplant did not work. Not many on dialysis have had such a journey. My parents and family have been a massive source of strength and support. Without them I would never have made it so far. Then, Dr. Girish Narayen, the man who put me on daily nocturnal home hemodialysis. I can safely say that I am alive because of this modality. I can also never forget Jayaram Reddy, the Head of the dialysis centre in KIMS Hospital. If it wasn’t for Jayaram, his expertise and and his confidence in his abilities, I would not have begun home hemo.

Where do I go from here? I swim every day, I work full time. I don’t travel as much. I would like to do some more travel. I would like to do more things I genuinely enjoy. I realise the limits of my body but would like to make the most of the coming years.

When I look back at this journey, I see one recurring theme which can aptly be summarised by these immortal lines by Robert Frost:

Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

Tuesday, July 11, 2017

Everything we hear is an opinion, not a fact

I came across this quote on Whatsapp recently:

"Everything we hear is an opinion, not a fact. Everything we see is a perspective, not the truth."

I couldn't agree more. I did some research on whose quote this was and ironically, this quote is wrongly attributed to Marcus Aurelius all over the internet!

However, this does not take away from the truth of the statement. These days, you get to hear and read such contradictory 'facts' that you are never sure what is true and what isn't. Gone are the days when you could rely on news channels and the print media to deliver to you news, uncoloured by the opinions and leanings of anyone.

Online media has made it even worse. Here there is no pretense of being neutral either. When I browse through my Facebook / Twitter feeds, I very often see completely contradictory claims about the same fact posted by friends with differing loyalties.

People with staunch religious beliefs have an unquestioning attitude towards their religions. After reading the book, Sapiens, by Yuval Noah Harari, you realise that even those beliefs stand on shaky ground. By that same logic, you should not consider everything you read in the book Sapiens, to be factual!

When you realise that many things you have based your world-view upon could have questionable foundations, you feel quite insecure. What is true, what isn't? What is a fact, what is an opinion?

People who twist facts and then spread this alternative reality are doing a lot of harm to the collective conscience of humankind. But then, as much as we would like to believe that this is a recent phenomenon, in reality, this has been happening for a long, long time now. The trouble is the longer the so-called fact has been round, the more firmly entrenched it tends to be in people's minds and the truer it seems to be perceived as.

In the age of the internet, it is very difficult to separate fact from fiction. A few years back, as part of a harmless prank, I managed to convince a colleague that man had landed on Mars by sending him some links from the internet! When even such pages exist, there would obviously be a lot more authentic-looking stuff that would support some selfish narrative.

So, it would do us well to keep the above anonymous quote in mind and not accept everything we hear to be true.

Sunday, July 2, 2017

Health Update

I got done with my surgery for Carpal Tunnel Syndrome on the 15th of June. The surgery was uneventful. I was home before lunch the same day. In the days after the surgery, (19th of June) however, I foolishly tried to move a sofa in my house with my right leg after which I sprained my right thigh badly. I did not realise until the next day however that the pain I was having in my right thigh was due to the sprain. I put it down to the side effects of the antibiotic.

On the 20th evening, when it struck me that it had been a full day since the last dose of my antibiotic and the pain was showing no signs of relenting, I thought about it and figured that the pain could be due to the sprain that could have been caused by moving the sofa!

I went to the orthopedic doctor who did the surgery for Carpal Tunnel Syndrome and was examined by him. He concluded that it was muscular and thankfully not related to the bones. He prescribed a muscle-relaxant and some pain killer. By the end of that week, I was feeling better. By Monday, the 29th, the pain was completely gone.

This week I have started going to office after a ten day gap. From the last couple of days, I have resumed swimming as well. I hit the pool after about three months. I am taking it a little easy to begin with though.

I have been suggested a synovectomy in the left knee to send the synovial fluid for a biopsy to try and figure out the cause for the pain that I have been having for the last 8-9 months there. I have decided to delay it for some time as I have been through quite a lot in the last couple of weeks.