Thursday, December 30, 2010

My article gets published in the American Journal of Kidney Disease!

Well, you must excuse the pompousness but I am really thrilled!

My article, titled "Taking the Uncharted Path", got selected and published in the American Journal of Kidney Disease's (AJKD) January 2011 issue!

It all started with an email from Dr. Sidharth Sethi, Pediatric Nephrologist at AIIMS, New Delhi in July this year. He told me that AJKD was inviting "essays of fewer than 1,600 words that illustrate some facet of kidney disease through a personal story".

I then wrote this article where I described how I got on to daily nocturnal home hemodialysis. The article went through a series of edits, some suggested by the editorial team at AJKD to make it make more sense to a global audience which is unfamiliar with the Indian nephrology context.

Finally, about a couple of months later, I was told that the article was selected! And now it has finally been published!

This is the link to the pdf version of the article which actually appears in the hard copy of the journal and this is the link to the online version of the article. This is the link to the online version of the journal's January issue. My article is under the section "In a few words" towards the bottom of the page.

Wednesday, December 29, 2010

NephroPlus launching second center

NephroPlus launches its second center tomorrow. This is a big step. So far, we had one center. All efforts were focussed on that center. Suddenly, now things become more complicated. Managing operations in two centers will bring more challenges. Catering to patients in multiple centers, making sure their every need is fulfilled, making sure the best possible care is given to them. 

The founders of a company are usually very passionate about what they are doing. The challenge is to make sure the same passion percolates down to everyone else in the company. The top management is rarely the face of the company for its customers. So, it is important for the management to make sure every single individual in the company works with the same motivation and zeal and has the same amount of passion for the job as them. This will be the main challenge for us at NephroPlus as we expand to truly become a 'chain' of dialysis centers. 

Tomorrow, the 30th of December at 10 a.m. Please do come and grace the occasion. We would be more than happy to have you!

Sunday, December 26, 2010

Does a chronic disease really change perspective?

I met with a few friends from engineering college a couple of days back. We had a great chat and caught up. I was meeting two of them for the first time after college, more than thirteen years later! One of them had undergone a heart transplant a few months after passing out of college. I was intrigued by his story. Here was a real fighter!

Vinay, one of those at the dinner mentioned how he thought that guy and I were really inspirations to him and how both of us looked at life in a very different way. We looked at the big picture and were not bothered by the little problems in life. He asked us if that was true. I nodded hesitantly. I wasn't so sure! It wouldn't of course, be politically correct to say it was not true. We are supposed to be really strong people. We were supposed to be the courageous ones. We couldn't care less about the petty things in life. Right?

I am really not too sure!

I thought about that on and off over the last couple of days. I realized that, at least in my case, that was not completely true. I still bother about the small things in life. I still worry about what others would think if I did this or that. It was much worse until a few years back however. I was constantly doing things others expected me to do. I had set certain standards for myself and I was constantly trying to measure up to them. Even though I was not enjoying it. Just because people expected me to live up to them.

Then I had dinner with Chetan, my best friend, my guru, my bro. I can hardly forget that day. At the bar in Taj Banjara. I was sipping a mocktail and Chetan, a beer. I told him about how suffocated I felt living this life. And then he told me those words. The words that changed my life. "Kamal", he said, "live your life like you are the center of the universe. And as if everyone else is revolving around you." He gave me an explanation too on what that actually meant.

I thought hard about this after and it made so much sense. Why was I constantly seeking approval from others? I must 'get a life', so to speak!

I was a changed man.

Monday, December 20, 2010

Mangosteens!

There is a legend about Queen Victoria offering a reward of 100 pounds sterling to anyone who could deliver to her the fresh mangosteen! It is such a delicacy.



I first ate a mangosteen at a wedding. It was one among many other exotic fruits being served at the dinner. I loved it at once. The waiter would slice through the outer rind of the fruit and then open it up and serve and we took a small spoon and scooped out the pulp. It had a sweet and slightly tart taste and was delicious.

I tried getting the mangosteen in many fruit shops in the city but nobody seemed to have it. The next time I got to have it was at another wedding! After a few such weddings, I was crazy enough about the fruit to actually walk up to the caterer for the wedding and ask him from where he got the fruit. He told us he imported it from somewhere. I asked him if he could sell some to me. He said he would when he got them the next time. Of course, he forgot about it soon.

A year or so back, I checked at Pure 'o' Natural, the fruit shop opposite L V Prasad Eye Institute in Banjara hills. They did have some. I was excited. I bought a bunch of them (they were terribly expensive) and rushed home to feast on them. As I opened the first one the way the waiter did, I was thoroughly disappointed. It was rotten. The next and the next. Almost all of them were rotten. Only one of them was good. My enthusiasm for the fruit disappeared.

A few days back, however, my parents went on a holiday to Dubai. There they saw some Mangosteens at a mall. They bought some for me. Coincidentally, that very same day, I saw some at Q Mart at Banjara Hills.  I bought a pack of 9 for Rs. 500! Very expensive! But what the hell?

They were delicious. Every one of them was excellent. I was thrilled!

When my parents got back a couple of days back, I got to feast on them again. Heavenly!

Here is a video on how to eat the fruit.

Sunday, December 19, 2010

What I am up to these days

I recently switched to an arrangement at Grene, the company I have been working for, for the last two years, where I would be like a contractor. I would have flexible timings. I could work from home when I wanted to but would come to the office as required. I would make sure all the work I needed to do would get it done in a timely manner.

Around the same time, I took on an official role at NephroPlus, the chain of dialysis centers I have been informally involved with right from its inception.

My life has changed dramatically.

When you are not an employee, there is a remarkable change in attitude towards work. Even though I am making significantly less money than I was until a couple of months back, life is much better professionally and personally. I find myself enjoying my work much more. I do not perceive my work to be a chore, to be done day after day. Suddenly, I find it very stimulating.

And then there is NephroPlus. I am enjoying my role there thoroughly. For the first time in my life I am working for a non-software company. The whole dynamic is very different from a software company. The goals are different. The working style is different. Well, obviously, you might say! But you only realize the extent of difference when you actually experience it. In a software company, despite all the complaints about the chaotic nature of the work and the schedules, there is a semblance of a plan, a structured team, defined deadlines, goals, deliverables.

In a startup chain of dialysis centers, there is no 'deliverable' as such. It is a continuous process of improvement, of catering to patient needs. There is no 'end point' as such. You have a few problems. You deal with them. Then the next set of problems comes up. There is not much scope for gratification at the end of a project like you have in software. After the successful execution of a project, there is celebration, a sense of catharsis, a time for relaxing. No such thing here.

What then is good about this?

Whenever I visit the center, I go over to chat with the patients that are getting dialysis there. I talk to them about how they are doing, how they are feeling and if they are having any problems. We usually have a heart to heart chat. I talk to them about the problems I might have had recently similar to theirs and how it got resolved. They give me tips about how they are dealing with the disease. I share my experiences. There is an immediate connect, an immediate feeling of empathy from both sides. I really like the time I spend with them.

There is one thing for sure. Only a dialysis patient can understand what another dialysis patient goes through. Not a nephrologist, not a technician, not a nurse, not a family member, not a best friend. Irrespective of any claims made by these people.

Friday, December 17, 2010

Mixing business with family

I strongly believe that you should never do business with family. I try to avoid doing any transaction that involves money with a family member or a close friend. I try to avoid getting into any business or hiring a family member or a close friend for a business. I also try to avoid working for someone who is family or is a very close friend.

Money is a strange beast. However professional we are or try to be, money can corrupt. Us and others. I don't claim to be unaffected by it, either. It is the very character of money. Due to this, our minds play havoc with the relationship and many times, a good relationship is soured due to this.

Some would argue that is is actually good to involve family or close friends in business because it is very good to have someone you can trust. That is really a call you have to make. Are you ready to risk spoiling the relationship?

The converse is also true. Never make someone you have a professional relationship with as close as family. Never get too close with someone you transact financially with. It can mess things up.

When you are paying for some services or products and the expectation is not met, you need to have the comfort to be able to talk about it. This comfort is compromised when you have a close relationship. It works the opposite way too. When you provide services or products in return for money and you have a grievance, it is difficult to air it with someone close.

I am writing this from experience and have seen both these aspects play out badly in the past.

Tuesday, December 14, 2010

Worst ever cramps

As you know, I have been trying to figure out my dry weight. I really should have figured this out sooner. Yesterday shouldn't have happened.

I was about 4.2 kgs above my dry weight. I had not got enough dialysis the previous night. So, there was some fluid from the previous day that I had to remove. So, I told Jayaram to set the UF to 4.5 kgs to account for the half liter of water I usually have at night and keeping in mind that I had just had dinner, so about 300 grams was probably food.

As usual, for the first few hours, everything went well. Around 4:20 in the morning however, I started cramping. The familiar sensation of the calf muscles contracting involuntarily causing my feet to get pulled was mildly disturbing at first. These days, in the rare occasion of cramps, I don't wake Jayaram. I simply press my feet downward and it usually takes care of the cramps. That is what happened yesterday as well.

But a few minutes later, the cramping worsened. The pain was severe and my left calf muscles contracted really badly. No amount of pressure on the feet would release my calf muscles. The pain become unbearable quickly.

I started screaming. I woke Jayaram up and shouted out that I had bad cramps. I asked him to push my feet to release the muscle that had contracted so stubbornly. He tried and it worked. But only just. Within a few seconds, the muscle contracted again, this time worse than before. With every passing second, the pain was becoming worse. I was shouting out with pain.

Jayaram immediately opened the saline clamp and let some saline into my blood. It did not help. By now I was sitting up on my bed. No help. I asked Jayaram to give me more saline. He reopened the saline clamp and pumped in about half a liter of saline. I also stood up simultaneously, something I have never done on dialysis. There was immediate relief. The saline was giving my blood some volume which was loosening up the muscles.

In a few minutes, the saline helped relieve the cramps entirely. I settled down in my bed and slowly went back to sleep.

Dialysis ended about an hour after. I was feeling quite exhausted and drained. My fingers were feeling weird. The left calf was also very sore. I went back to sleep after Jayaram closed and left.

This was probably the worst incident in terms of pain that I have had while on dialysis. The blood loss incident was probably more dangerous but I did not have any pain or trauma. This incident was like going through hell for that short period of a few minutes.

Jayaram remarked that he had never seen anyone have such severe cramps ever. I thought how lucky I was that this happened when Jayaram was there. I have no idea what I would have done if I was alone that night.



Monday, December 13, 2010

The First Annual Ex Effigent Reunion

First Annual Ex Effigent Reunion

Date: 25th December 2010
Time: 9 a.m.
Venue: A farmhouse on the outskirts of Hyderabad


Click here and register asap so that arrangements can be made accordingly.

A voluntary contribution towards the expenses would be appreciated! Link available in the site above.

(Acknowledgements: M V Krishna for taking this excellent initiative!)

Saturday, December 11, 2010

Figuring out my dry weight

Yesterday, as I was on my way from Grene to NephroPlus, I felt a familiar sensation. My head suddenly felt cold and I could feel tiny droplets of sweat on my head. I felt slightly giddy and weak. It wasn't very bad. But I knew it could get worse if I didn't do anything about it.

I asked my driver to go to a snack center nearby. I rushed in and ordered an Idli. It came pretty fast. I quickly ate the Idli and could immediately feel better. Not totally normal, but definitely better.

I then got dropped at NephroPlus and sent my driver to bring me a soft drink. I then sat down in a chair, set the air-conditioner to a comfortable temperature and took a few deep breaths.

Slowly, I regained composure and felt normal.

What was this? It could have been one of two things - hypoglycemia or hypotension. I cannot say for sure which.

Hypoglycemia is a condition where the sugars in the blood go down suddenly and you have exactly these symptoms. Diabetics experience this sometimes if they have taken too much of the sugar-lowering drugs.

Hypotension, on the other hand, is something which people lucky enough to be on dialysis sometimes have. Let's say you have been eating well and eating healthy food like sweets and fried food. Your weight increases. Now, when you go for your next dialysis session, this can be misconstrued as fluid weight and the good folks (aren't they all?) at the dialysis unit try to pull it off. Now, this results in the amount of water in the blood actually going below what it should be. This causes thickening of the blood and reduces its pressure.

This can result in the symptoms I had, as well.

So, knowing your 'dry weight' is key. I knew my dry weight had gone up a little but I was in a little bit of denial. I somehow wanted to convince myself that my daily swim is helping me reduce weight. What I did not realize is that my regular cola binges are not helping matters. Hence, the hypotension.

But then, if it was truly hypotension, maybe, I shouldn't have felt better with the Idli. But then, I did have cramps in the last hour of my dialysis and I also had a little bit of a cramp in my hand that afternoon.

So, I am really not sure what it was. All I can say is I really enjoyed the full bottle of Thums Up that morning!



Tuesday, December 7, 2010

The evolution of the humble khakhra

The khakhra is a Gujarati snack. It is probably one of the simplest foods ever. It is basically a chapati that is roasted as crisp as a papad. It is typically made of wheat flour, a little salt and a little oil. A dough is made with these ingredients and then made very similar to a chapati. This is then roasted in a tava by applying pressure with a wooden utensil. Ghee can also be used while roasting the khakhra to make it a little tastier.

The most a good cook would experiment with the khakhra would be by adding a little jeera to the dough to add a touch of flavor to the otherwise bland recipe. A few years back, however, people started experimenting a lot with the khakhra. They started making masala khakhras - basically adding turmeric, chilli and other masalas to make the khakhra quite tasty.

Most people would have the khakhra for breakfast with milk, tea or curd. Some people would also have it as a tea time snack, sometimes with a little pickle. But due to the plain nature of the snack, it would always need an accompaniment like curd or tea. With the masala-isation, however, the khakhra took on an independent identity and people started relishing masala khakhras plain.

Recently, people have started taking experiments with the humble khakhra to another level. You now have a large variety of khakhras. The mangroli khakhra, tomato khakhra, bajra khakhra, bajri-methi to even pani puri and pav bhaji khakhras! You also get a dosa khakhra which actually is dosa batter made into a khakhra!

As people started becoming more and more watchful about what they ate and how healthy it was, the khakhra adopted too. So, you now had seven-grain khakhras and khakhras without ghee!

There are entire stores in Mumbai and Ahmedabad that are devoted to khakhras and allied items.

Take a look at this picture of a variety that I recently saw:



The khakhra is shaped like a mobile phone, complete with a keypad on the packing and is called SMS khakhra! It is ideal for people like me for whom the khakhra forms a great 5 p.m. snack at work. Easy to carry as well. The interesting thing about this khakhra is it is labeled 'whole wheat bran diet and health' but at the bottom says 'Ghee sada'! Pray, how can a khakhra that has ghee be branded as a 'diet' khakhra??

Saturday, December 4, 2010

Does this ad inspire any confidence?

Recently, a new hospital opened in the city. They've probably got a really bad PR agency! Look at this ad that they have in many prominent places in the city.




Who is the guy in the ad? Is he a doctor? Why is he wearing a sherwani? I read somewhere that he is a ghazal singer. Hmmm. An unknown ghazal singer on the ad for a hospital! It's not even as if he is handsome or something. Seriously, what were they thinking? This is even more silly than the dick who had his pictures all over the city for a famous club in Begumpet.

They have also flooded radio channels with ads with some guy talking about the hospital. The voice is so sick and he talks like he is being very gentle and caring. This may serve to drive patients away from the hospital rather than to it!

A good PR agency is so key!

Monday, November 29, 2010

Fistula pain

For the last couple of days I have been having some pain in the venous site of my AV Fistula. I changed the location of the cannulation. I am actually at Care Hospital, waiting outside Dr. P. C. Gupta's OP room for my turn. Dr. P. C. Gupta is a vascular surgeon.

I suspect that there is an infection at that site. There was a similar pain a couple of months back and I had shown it to him. He put me on an antibiotic and asked me to give the site some rest. I haven't used that site since then. Now, a site close to that is paining.

I am a little worried about this. This is the second time in the recent past that this has happened.

A fistula is basically an access to your body's blood for dialysis. During dialysis, blood is continuously drawn from an artery and then passed through an artificial kidney - a dialyser - and then sent back into the body through a vein. Veins are generally small and cannot handle the flows typical during the dialysis process. For this reason, the artery and the vein are connected so that over time, the vein becomes large enough to be able to handle these flows.

Over the last thirteen years, I have had a number of surgeries that involved making accesses, most of them fistulae, in my arms. Once a site has been used or attempted to be used, it cannot be used later. So, except for my right upper arm, all potential fistula sites have been used up. The current fistula is in my left upper arm.

For this reason, I must do all it takes to preserve the current fistula because I do not have too many options left in terms of access.







Friday, November 26, 2010

Have you had an orange today?





Oranges are my fruit of the season. What better way to start your day than a ripe, sweet orange? I just love the taste of an orange - slightly sour, yet sweet. It is probably the only fruit that is also the name of a color!

Oranges are excellent sources of Vitamin C and 100 grams of the fruit can give you 75% of your daily requirement of Vitamin C. It also provides good amounts of Vitamin Bs.

Did you know that the word Orange is actually derived from Sanskrit? The word narangah means orange tree in Sanskrit and that is where the word Orange is taken from!

Oranges are best had as they are - the natural fruit pulp after removing the peel. Those on dialysis, unless you're on daily nocturnal, should stay away from the juice since it contains high quantities of Potassium. Orange makes for an excellent marmalade and it is probably one of the most widely eaten marmalades.

The variety that originates in Nagpur and other parts of India is quite different from the variety that is produced and consumed in much of the rest of the world. Nagpur oranges have greenish orange peels and - truth be told - I prefer the slightly sour taste to the variety available in other countries.

Brazil is the world's biggest producer of Oranges and India is the fourth largest.

I often think about how the foods that taste good are never good for the body. Well, the orange proves that totally wrong. So, have you had an orange today?

Thursday, November 25, 2010

Congratulations Nitish Kumar!

There's hope after all! After all the scams in recent times, we were slowly losing hope. Will India ever make it? But then the Bihar elections happened. The landslide victory that Nitish Kumar won shows that development works.

In the recent past, we have seen governments that genuinely work for the betterment of the people being voted back. Until some time back, with the exception of West Bengal, every state would invariably see the government in office being voted out. But then slowly we started seeing this trend changing.

Now, we see this happening in many states. The governments that pursued an agenda of development in Gujarat, Andhra Pradesh, Madhya Pradesh and now Bihar among others were all voted back to power.

In Bihar especially this holds so much significance. The state had become the worst state in the country with Lalu Prasad Yadav and his wife at the helm. Development was a joke. So, when finally, after decades of misrule, when Nitish Kumar was sworn in as Chief Minister, he had his task cut out. And deliver, he did.

From what I read, Bihar is now a changed state. You can see the difference on the ground. And the common man is not a fool. At least not any more. He now sees above caste and religion and votes for what is really good for him.

Congratulations Nitish Kumar!

Monday, November 22, 2010

Precautions I take on nocturnal home hemo

As you probably know, I am on nocturnal home hemodialysis. I dialyse every night for seven to eight hours. That gives me very good clearances, my hemoglobin is good and I live a close-to-normal life.

However, there are certain risks associated with nocturnal home hemodialysis. In my opinion, the biggest risk is that of blood loss during dialysis. Blood loss can happen in the dialysis center as well. The big difference is that in the center, you have people observing and monitoring you and it is day, after all. Everyone is wide awake. So, should there be any blood loss, it can be immediately noticed and corrected.

In nocturnal home hemo, both you and the tech, if any, are asleep. So, any blood loss can go undetected.

So, should you not do nocturnal home hemo at all? Far from it. The benefits far outweigh the risks. Do you stop flying after hearing the reports of hijackings or air crashes? Do you stop driving a car after hearing about fatal car accidents? By taking proper precautions, you can easily minimize the risks and get all the benefits of good, optimal dialysis.

I am a member of Home Dialysis Central and there I got some very good advice from home hemo veterans about the precautions to be taken on nocturnal. There are two possible scenarios that we need to be careful about. Blood leaks from the arterial and venous sites is the first and blood leaks from the dialyser itself is the second.

What I do is to make sure that the needles at the arterial and venous sites are taped really securely so that they do not come out of the sites at all. For both the needles, I use an 'X' pattern by using two half-inch wide transpore tape pieces and tape them across the needles and make the tape stick against the wings of the needles on both sides securely.

For the venous needle, since it is usually horizontal almost, I put a small cotton ball below and then tape it around. This gives a good angle for the flow and also secures the needle well.

The arterial needle is the one that gave me a major problem one time. This was mainly due to the primary tape in the 'X' pattern coming off. Ever since, I have been putting a half inch wide transpore tape around the wings so that the primary tape does not come off at all.

In addition, I have a blood leak sensor which basically has a sensor that is connected to an alarm and the sensor goes off should any blood touch it. I tape this sensor to the side of my arm just below where the arterial needle goes in. So, despite all this, even if any blood leaks, I will know soon enough.

The other place where a blood leak can occur is the dialyser itself. Now, the dialyser has two openable caps on both ends and after reuse processing, it is possible that the caps are not closed securely enough. This can cause a blood leak. Another possibility is the arterial and venous lines that are connected to the two ends of the dialyser are not screwed properly. This can cause a blood leak to occur as well. So, what I do is to put an empty, dry bucket right below the dialyser and put a blood leak sensor there as well. This will cause an alarm to go off if there is any blood leak.

So, you see, with proper precautions, it is possible to minimize the risks of blood loss during nocturnal home hemo. It is important for us to understand that this modality is the best there is today among hemodialysis modalities. It is the only modality that offers us a chance to live a life as close to normal as possible.





Sunday, November 21, 2010

Guzaarish: India's first film that shows dialysis and they didn't do badly at all!

Ok, first things first. I loved Guzaarish! It is a film about a quadriplegic - basically someone who is totally paralyzed from neck down. Hrithik Roshan plays the role of Ethan Masceranhas who was a brilliant magician who became paralyzed after an accident during a magic show. The film starts off with Ethan deciding to file a petition for euthanasia.

The rest of the film is about the petition hearings and Ethan's relationships with his nurse, his doctor and a student of his magic among others.

Performances are all very good. Hrithik Roshan is brilliant. Period.

Ethan has lost his kidney function and is slowly losing his other organs too. He is shown actually undergoing a dialysis session, needles in his arm, blood lines, dialyser with blood flowing. And to top it all, he is undergoing the dialysis at home. So, we haven't done badly at all. The first time dialysis is shown on Indian cinema, it is home hemo!

Of course, there are some glitches - a doctor comes home to do his dialysis and the main premise is also somewhat flawed - he really did not need euthanasia to die, all he had to do was not undergo dialysis. This is perfectly legal and he would die within a few days of not dialyzing. To make it less uncomfortable, he could also have just removed water - isolated UF - and not clean the toxins. But I guess, then there wouldn't be a movie to be made!

Not everyone will like the movie however. It is a little slow and the magic bit is probably overdone. Those who can relate to a chronic condition such as this and those who understand this will definitely appreciate it.

Saturday, November 20, 2010

How many times do you have to get it done?

I was asked this question in the pool today. It was with regard to dialysis. My fistula of course, is a dead giveaway. It inevitably leads to stares and then when the curiosity becomes uncontrollable, the question comes.

"If you don't mind me asking, what is that on your left upper arm?"

"You know what that is? That is none of your fucking business!" Of course I say that only in my mind. I mean, I have limited time in the pool. I would honestly rather enjoy the blue water with the winter sun shimmering on the surface rather than get into the details about dialysis. But then, I have not become rebellious enough to say that.

"That is a fistula and it is used for dialysis. I am Kamal and I am on dialysis. Hello!"

After the usual comments about how someone so young (I am only 25, remember?) could be on dialysis, the question about number of times usually comes, especially if they know a friend of a relative of a friend who is on dialysis.

Then comes the classical dilemma for me. How do I answer that question? How many times do I have to get it done? I get it done daily, for seven to eight hours. If I tell them that without any explanation however, they will surely need dialysis themselves soon because of the shock. And the question is how much dialysis I need, not how much I am getting!

Looking at it from a lay person's perspective, I have to get it done about once in a week actually. I can survive for a few months with that frequency. But then, I obviously don't want to get down to why that is really, really bad for the heart, the blood counts, the nerves and all. So, that brings me to thrice a week. Barely enough dialysis. But I have to get it done with that frequency to have some hope to last a few years.

However, in the end, my basic instinct to spread the word about more frequent dialysis takes over and I get into the details of how most people do it twice or thrice a week but I do it daily because it enables me to lead a life as close to normal as possible. Soon, I can sense it becoming information overload because I also go on to explain how daily dialysis brought my hemoglobin up, took care of my left ventricular dysfunction, totally cured my restless legs syndrome and damn it, enables me to swim every day and work full time!

Most people decide to call it a day and get out of the pool and I go back to my swimming.





Thursday, November 18, 2010

No point in setting Airtel caller tunes

I switched to Airtel from Idea a few months back because Idea had practically no coverage in my office area. I keep getting messages - up to three a day - from Airtel about different things. Rate plans to caller tunes to SMS packages.

One such message had an offer to set your caller tune to songs from Orange. I love all the songs of this film and thought I should set my caller tune to 'Rooba Rooba'. So I called the number mentioned in the SMS and went through the voice recognition based menu to eventually set the song as my caller tune. They charged Rs. 15 for the tune and Rs. 30 to subscribe to the service for a month. Ok, I thought. I got an SMS confirming my selection.

I called my phone from another phone to see how it sounded. I quickly realized that the whole purpose was defeated. First, a message is played where they tell you about the service and how you can copy the dialer tone and then how much it costs you. I can bet that most people would answer the phone before the song starts! WTF?

Rather than subject my callers to this torture, I promptly unsubscribed from the service. I have yet to figure out what happened to the Rs. 45 that was debited to my account.

Note: Non iPhone owners, please do not read the rest of the post

While on the topic of phone tones, have you tried setting a ringtone other than the predefined ones on your iPhone? Well, I tried and they sound really bad. First, I tried using Garage Band and it was terrible. I looked up the Internet for solutions and found some software that was supposed to do a good job. I paid $20 and bought iSkysoft's iPhone Ringtone maker.

I tried making a ringtone from Rooba Rooba and again, it sounded really bad. If I played the same song using the same iPhone using the iPod app, it plays really well. Why then can it not play well for a ring tone???



Wednesday, November 17, 2010

The McKinsey chapati

I was recently discussing lunch with a friend and colleague. This guy happened to have worked for a few years at one of the world's top strategy consulting firms (hint: look at the title of the post). I had actually finished my lunch in a few minutes and he was surprised. He asked me what I had for lunch.

"Vegetables with chapatis", I answered.

"Wow!", he exclaimed.

For a moment, I wondered, what was so "wow" about a chapati? It was almost like I said something like "Roasted pepper and asparagus marinated in Raspberry vinaigrette"! Never before has the humble chapati been the subject of such a "wow".

There was more to come, however.

He went on to ask me if I had chapatis for lunch everyday.

"No", I said. "Sometimes I have rice."

"Awesome!", he responded!!





Tuesday, November 16, 2010

On giving negative feedback

Let me relate a true incident. I was managing a team of software developers a few years back. I had heard a lot of dope on feedback and how a manager should give both positive and negative feedback to his or her team members to ensure that individuals grow in their job by addressing problems and working on their defects. It sounded very good in principle.

So, during the annual appraisal, I did a thorough exercise and came up with the positives and negatives of all my team members. During the discussion, I remember telling one of my team members that his technical ability needed a little brushing up. He did not show any signs of disagreement. A week later, I had his resignation in my inbox.

During the exit interview, I asked him the reason behind quitting. He did not mince words. He said he quit because I did not appreciate his technical ability.

From then, I have been careful with negative feedback. Most people, I feel, cannot take negative feedback the right way. Immediately they become defensive and try to justify to themselves on why that made no sense at all or worse, that the person giving the feedback actually had an axe to grind and loved putting him or her down.

It requires immense maturity to accept negative feedback and most people simply are not that mature.

How then do you handle this? I have a simple solution. Don't.

Desist from giving any negative feedback to such people. The reason is if you do give them negative feedback, they will anyway take it the wrong way. They are not going to work on their defects and try to correct themselves. Then, why bother?

As for me, when I get negative feedback, the way I react depends a lot on who is giving me the feedback and my mood at the time!



Wednesday, November 10, 2010

Theories that sound nice but have no factual basis

Over the years, I have heard some really fascinating theories about many aspects of kidney disease. Only one thing though - they have no factual basis. For the uninitiated, however, they make a lot of sense.

Sample this. When I was in my initial days diagnosed with kidney disease, a family friend came home. She had a fantastic theory. She made me lie down on my bed with three big pillows below my head. Another three pillows were placed below my legs. The rationale: excess water from the top of my body and from the lower part of my body would collect in my bladder and flow out as urine! Never mind the fact that the kidneys were not producing urine at a normal rate!

I tried a lot of alternate therapies to try and cure my kidney disease. One of them was acupuncture. The practitioner had cured someone with kidney disease. So, we decided to try it out. This person had a really amazing theory. He said that my kidneys had gone to sleep and by putting these sharp needles in the right points, he could 'wake' the sleeping kidneys by giving them a 'jerk'!

I was told by a well-wisher recently that I should not dialyse daily. My body will get used to dialysis and I will not be able to tolerate life without dialysis. Never mind the benefits of daily dialysis. Never mind the left ventricular hypertrophy it has helped me overcome. Never mind the improved hemoglobin. Never mind the active lifestyle this modality has afforded me.

All these theories sound really good. They are, of course, only that - theory. Not practical or scientific at all!



Sunday, November 7, 2010

Soon, it will be time to take a decision

I have a hemodialysis machine at home. Every night I use this machine to get dialysis - daily nocturnal home hemodialysis, the gold standard for hemodialysis today. This is which allows me to have a normal life - well, almost!

The blood pump is a very important part of the dialysis machine. It is this pump that basically draws blood out of the arterial line and pumps it to the artificial kidney and then returns it to the body through the venous line. For the past few weeks, this pump has been making some noise, similar to that you would hear when it is rusted or not well-oiled. I called the Fresenius folks and they came and took a look. They tried greasing it but the noise did not reduce. They eventually concluded that it needed to be changed. The pump costs around forty thousand rupees.

The machine is almost four and half years old. The life of these machines is close to ten years. So, I guess it is time for some parts to wear out or need to be replaced. The important thing to consider is how often this kind of a thing will happen and how much it would cost.

If, for example, this is going to become a regular feature, would it be wise to sell this machine off and buy a new one? If I am anyway going to have to spend about five to six lakhs on a new machine, would it make more sense to go in for a NxStage machine which would cost about twice as much? Though the cost of the disposables is going to be much higher with the
NxStage, would it be worth getting it for the flexibility of traveling it offers me?

These are decisions I will need to make sooner or later. Not immediately but definitely in the next few months.





Friday, November 5, 2010

Tamaso ma jyotirgamaya - Lead me from darkness to light



Today is Diwali - the festival of lights!

When I awoke this morning, there was an extra bounce in my step, an unintentional smile on my face, I was generally happy. There wouldn't be any work today. There would be sweets. There would be fun.

Many people however, woke up this morning feeling breathless, not because of the smoke from the crackers but because there was fluid in their lungs. Many people woke up this morning feeling nauseated, not because of eating too many sweets but because the toxins in their blood had crossed comfortable limits. Many people woke up this morning depressed and anxious about how the day will be, despondent, wondering how long this suffering would last.

Not because there was no treatment available for their symptoms. Not because they had some undiagnosed condition which baffled doctors were unable to cure. But simply because they did not have the money for dialysis. Simply because they could not afford to spend their life's savings on a treatment that they would have to undergo week after week after week, life long.

I myself have seen many people die due to the lack of resources to get dialysis.

This is now slowly changing. Apart from Aarogyasree in Andhra Pradesh, we have the Jain Dialysis Trust (or the Bhagwan Mahavir Jain Relief Foundation Trust) that provides dialysis at Rs. 300 for people who cannot afford it. The trust bears the balance cost of Rs. 500 per session. The trust is now more than a year old and has saved hundreds of lives by tying up with hospitals and dialysis centers in the city and offers subsidized dialysis sessions.

They distribute coupons for dialysis on the last Sunday of every month for sessions in the following month. They also provide erythropoietin injections and dialyzers and blood lines at cost by sourcing them directly from the manufacturers getting them at a low cost.

The trust has recently been allotted an area of 6,500 sft at King Koti Hospital and is setting up a state-of-the-art dialysis center with 20 machines. This is huge as now patients can avail dialysis sessions at the trust center also. The trust plans to make this center world-class and not compromise in any manner on the quality of dialysis being offered.

What can we do to help patients suffering from this disease lead a life that can be as close to normal as possible?

The trust has a simple scheme - "One dialysis for Rs. 500". You could donate from Rs. 500 and in multiples of that amount. All donations are exempted from Income Tax under section 80 G. You could send a cheque or a DD in favor of "Bhagwan Mahavir Jain Relief Foundation Trust" for the amount and courier it to the following address:

Bhagwan Mahavir Jain Relief Foundation Trust

4-1-690, Mahabhupal Manzil,
Vikranti Cinema Compound,
Jambagh, Hyderabad. India.
Tel. No.: 2474 2896, 2474 3445


You can also call Mr. Inderchand Jain on +91 98852 98100 for more information or visit their website.


If you think all this is too much a hassle but  still want to contribute, drop me a line and I could arrange for this to happen too.


Let us do something for the less fortunate this Diwali and bring light to their lives as well. Happy Diwali!

Thursday, November 4, 2010

Miles to go before I sleep

I have had kidney disease for more than thirteen years now, all of it on dialysis. I often wonder how long a person can live on dialysis. People have survived for decades after a transplant. But dialysis is different. It is at best a compromise in terms of replacement of renal function. And I also have many of the co-morbidities associated with long term kidney disease.

So, I scoured the mailing lists online to be able to find an answer to this question. Well, I wasn't looking for an exact answer but at least some indication. I wasn't depressed about this or anything. I just wanted to be able to plan my life better. Fortunately or unfortunately, the answers on the mailing lists were all vague. 'People have lived for long on dialysis'.

Then, yesterday I met Joseph Rajshekhar. And everything changed.

Joseph has been on in-center hemodialysis for the last eighteen years! No transplant. No PD. Only in-center hemo.

This gave me a lot of hope and cheer. If someone can live for eighteen years (and still going strong, touch wood) on thrice a week hemodialysis in-center, my odds of living much longer are pretty good! I am doing daily nocturnal home hemodialysis, after all!

And if I can survive for long enough, who knows, Soliris might become accessible and I might be able to get a good transplant. Then, what else could I ask for? I could live for centuries! Hehehehe!

So, it will be some time before I sign off, folks!



Wednesday, November 3, 2010

Dissent is ok

Many organizations are managed by a group of people. This is true of companies, non-profit organizations and social communities among others. In these organizations, among the management, I feel it is all right, even healthy, to have dissent.

Let me explain. Let's say, a decision about some important issue is to be made. Among the multiple managers of the organizations, it is not always necessary (or desirable) for all of them to hold the same views. It is natural for them to have differing opinions.

The important thing to do is to hear everyone out and then take a decision that the majority supports. I believe that consensus should never be the objective.

Many people believe that Sardar Patel would have made a better first Prime Minister of India. This did not happen due to Gandhiji's obsession with consensus. He wanted the Prime Minster to be chosen unanimously. So, even though Patel had the backing of a majority of the Congress committee, Nehru stayed silent when Gandhiji asked one of them to step down in favor of the other. Patel, despite having majority support, stepped down. So, had Gandhiji not insisted on unanimity, the course that India would have taken would have been very different!

I believe that consensus is not good always. It is important to have dissenting notes provided they are healthy and do not result in acrimony and jeopardize the functioning of the organization.



Tuesday, November 2, 2010

One hospital versus best doctors

Kidney disease often ends up being a multi-disciplinary thing. A nephrologist is not the only person you need to consult. With long term kidney disease, there are some conditions that could need you to consult a cardiologist, a neurologist, a hepatologist, an orthopedician, a dermatologist, a urologist and a vascular surgeon among others!

Most of these referrals will be by your primary nephrologist. Now there are often two choices in front of a nephrologist. He could either refer you to someone from the hospital you see him in or where he primarily works or he could refer you to who he thinks is the best (or at least very good) in the city.

Both these approaches have their pros and cons.

Referring you to the best in the city may be good because obviously you are seeing someone who is likely to advise the best course of treatment. However, as is almost always likely, there will be a need to consult the nephrologist because these kinds of things are not always black and white. In these cases, it could be better for both to be a part of the same team, in the same hospital. Things becomes much easier to discuss.

I see my nephrologist mostly at his clinic and rarely at his primary hospital. He inevitably refers me to the best in the city or to someone he thinks is very capable. He initially leaves the choice to me. And I invariably ask him to recommend someone.

As a result, I now see specialists in about five hospitals in the city! This might, at some point, becomes a logistical nightmare as it will be impossible to get these doctors to come together to discuss anything!



Sunday, October 31, 2010

A hectic fortnight

The last couple of weeks have been really hectic. There was this new project we started at Grene for which a prototype had to be completed asap. This resulted in some late nights and working weekends, something unheard of in my career at Grene!

The work culture at Grene is generally very healthy. You do your work. As long as you are reasonably productive and work responsibly, no one bothers you.

In addition to this, I was busy with things at Nephroplus too. We had a stall to manage at the TiE-ISB Connect event that was held at the Hyderabad International Convention Center. This was basically an event for budding entrepreneurs to meet people who had already taken the plunge and started businesses on their own. There were panel discussions on various topics (one of which was healthcare) where people from different backgrounds would discuss the topic and then there would be an open Q&A.

Initially I thought that these discussions serve no real purpose other than giving people an opportunity to network. I was probably wrong. I could sense the encouragement wannabe-entrepreneurs got by simply seeing people who have taken risks succeed in a field close to their heart!

Well, I also heard more jargon than I have in quite some time. Value proposition, stakeholders, tier x cities, strategic investments. Gosh, I did not even understand many of those terms! I wonder if the speakers themselves were just bandying them about without really meaning anything. In one answer to an audience question, the speaker used so much jargon that I got totally lost. In fact, I thought he answered yes to the question when I realized, to my utter horror, that he actually meant no!

Today, Sunday, I decided to take it totally easy. So, apart from my weekly pilgrimage to Poorna Tiffins (while on the topic, I might as well mention a joke I put together - Q. What is K Rosaiah's main contribution to the city of Hyderabad? A. He inaugurated Poorna Tiffins! hehehe... He really did, you know! When he was a simple MLA), so, apart from my weekly pilgrimage to Poorna Tiffins, I did not do ANYTHING. I practically was on my bed the whole day, watching TV and browsing using my iPad.

It's 4:30 now and I am feeling so much better. Rested. My body was actually aching last evening due to all the strain of the past two weeks. I am really glad I rested totally today. I even skipped a family lunch at an uncle's house.

I must really control the time I spend at work. This is totally not sustainable. It is good to say you are leading a normal life despite kidney disease. It is however important to not overdo it!

Saturday, October 23, 2010

CFH/CFHR1 hybrid

I got an email from Dr. Tim Goodship from the University of Newcastle upon Tyne in the UK this morning.

I had sent my blood samples to this lab in 2006 for genetic testing for atypical HUS. They had sent me initial results saying they could not find any mutations of Factor H, Factor I or MCP, the three most commonly implicated genes in aHUS.

Apparently, they did more tests subsequently and a very specialized set of tests revealed that I did have an abnormal form of the Factor H gene called CFH/CFHR1 hybrid. The chance of recurrence of atypical HUS after a transplant with this abnormal gene is 80%.

So, that pretty much rules out me getting a transplant using the current protocols. Even plasmapheresis may not help.

My only hope now is Soliris (Eculizumab) from Alexion Pharmaceuticals. They have just recently completed a set of Phase 2 clinical trials in patients who were resistant to plasma therapy and patients who were on chronic plasma therapy. The clinical trials have met the objectives, they say. I have myself seen scores of papers on the results of the use of this drug and the rate of aHUS remission has been 100%.

Though daily nocturnal hemodialysis has shown outcomes comparable to that of a deceased donor transplant, I still think I want a transplant. The hassle of undergoing dialysis every day and the restrictions on travel (portable machines are not yet available in India) make a transplant seem like complete freedom. So, I really hope Soliris becomes available for use in renal transplants soon. That, as I said, is my only hope.




Friday, October 22, 2010

A good IDE goes a long way

An IDE, or an Integrated Development Environment is the tool that you use to create software. A lot of the credit for the success of any development software goes to the IDE. Who would develop using Dot Net if it weren't for Visual Studio?

I primarily use two IDEs for my day to day development - Eclipse for all my WebObjects and Java work and Xcode for all my iPhone and Cocoa work. Eclipse is definitely the better of the two.

Eclipse is Open Source while Xcode is Apple's product (see, I am not biased!).

These days, an IDE does a lot more than just give you text editing capabilities. Code completion, refactoring, inline documentation, templates and more, all these make life much easier.

Code completion is one of the most important features for me and Xcode simply does a bad job. Let's say I type the first few characters of a variable or a method. Now, when I hit the key for code completion (Esc for Xcode and Control+Space for Eclipse), while Eclipse will show me a list of options, Xcode often fills the first available option which, most often is not what I want!

File organization is another area where Eclipse beats Xcode hands down. Eclipse simply mirrors the disk file system of your project folder. Xcode, on the other hand has no connection between the two. You could have all your files in one folder on the file system whereas the project could have everything organized in folders. This becomes a problem as you manually need to go and move things around when the number of files becomes large.

Of course, Apple fanbois will still swear by Xcode (as with anything that has an Apple logo on it), but I really hope Eclipse starts supporting Cocoa and Cocoa Touch! Or that Xcode 4, touted as the next best thing since the iPhone 4 lives up to its promise.





Friday, October 15, 2010

Mac OS X Lion?

I subscribe to Google Alerts on Apple stuff using Google Reader. Yesterday, I learnt that Apple has sent out invitations to an event on October 20th that said "Back to the Mac". The invitation had a hidden picture of a lion indicating that Apple might be coming out with a new version of its Operating System.



This is expected to be a major upgrade from the previous version, Snow Leopard which had mainly performance enhancements. People are speculating that Apple might eventually merge their iOS with Mac OS X and this might be the last version of the desktop OS.

Well, with Apple, you can never be sure. The entire world expects something and then Apple comes out with something totally unexpected.

I am going to be keenly awaiting the October 20th announcement. I have been using a Mac for years now and am really excited to see what Apple has in store for us! They have revolutionized the phone and the tablet in the last few months. Let's hope they have something equally great for the desktop now.

Thursday, October 14, 2010

Have you taken your Swine flu vaccine yet?

The swine flu vaccine is now available in India. I just got my shot a couple of days back. All people on dialysis should immediately check with their nephrologists and if advised, take their shot.

Even people not on dialysis should check with their primary physicians and get their shots if advised to do so.

And while you're at it, check with your nephrologist/primary physician and take the vaccine for pneumonia too. I took that vaccine too yesterday.

I am sure you have taken your Hepatitis B vaccine already. If you haven't, please do so asap. This is a no-brainer. When there is a vaccine available for such a deadly disease, why take chances?

People on dialysis should definitely get vaccinated against Hepatitis B. In fact, people on dialysis are advised to take a double dose each time for The HBV vaccine. We must also get a yearly check of our HBsAg titers and then take a booster shot if necessary.



Wednesday, October 13, 2010

Over-engineering projects

I have worked on a large number of projects in my software development career. The team sizes have been between one and about fifty. There is one thing common to most projects. In the beginning, most of them are over engineered.

During the beginning of a project, people are generally very gung-ho about the project. Right from the project manager to the developer to the tester, everyone is very excited to be on the project. So, every minute detail is discussed to death. Discussions are held with every single member on the team whether the database column to store the id of a product should be varchar(32) or char(32).

Towards the end of the project, it is usually about getting the damn id into the database and wondering why the id is not being retrieved at all, never mind the data type!

I had a terrible sense of deja vu recently when at my office we starting discussing a new project. The kind of detail we went into was mind numbing. I couldn't help but shake my head thinking about the futility of it all. A few more days and anyway everything would change. Why bother then?

In new projects, I strongly believe, we should always go about things in a top-down manner. Look at the big picture. What is the problem we are trying to solve? What are the pain points that are being addressed? Then get down to the rest of the stuff.

Often engineering teams spend hours trying to solve problems that the customer couldn't care about. I have seen this all too often. That is where the Project Manager must step in. She must never lose sight of the 'big picture' - what exactly is the problem we are trying to solve? Every decision taken in the project must keep this in mind.

That way, a lot of unnecessary effort and heartburn can be avoided in most projects.

Monday, October 11, 2010

A conversation at the lab

"I asked for 1,25 dihydroxy cholecalciferol. The invoice also says that. The report you gave me, however is for 25 hydroxy cholecalciferol."

"Hmmmm. Ok. Let me check."

(Calls someone.)

"Madam. There's a patient here. He says he asked for 1,25 dihydroxy cholecalciferol but we gave him the report for 25 hydroxy cholecalciferol. They are the same? Ok. I will let him know."

"No, no, one second, let me speak to her."

(hands over the phone to me)

"They are not the same ma'am. 1,25 dihydroxy cholecalciferol is the active form of Vitamin D3 while 25 hydroxy cholecalciferol is the inactive form. I want the level of the active form, not the inactive form."

"Hmmmm. But the bill said Vitamin D."

"Ma'am, I asked for 1,25 dihydroxy choilecalciferol and that is what the bill also says"

"Ok sir, please give me an hour and I will call you back"

This is the state of our labs. I paid a huge Rs. 2290 for this test and I wasn't going to accept a mistake someone else made. I asked for the correct test. I actually made the receptionist making the bill show me the monitor and made sure the correct test was chosen because I knew this could happen. And inspite of all this, I get a wrong test report!

For the last time, here is a summary of Vitamin D3:

25 hydroxy cholecalciferol is the inactive form of Vitamin D3. It is not of much use to the body. What the body needs is the active form - 1,25 dihydroxy cholecalciferol. 25 hydroxy cholecalciferol is what we get from our food and sunlight etc. The kidney converts this inactive form to the active form - 1,25 dihydroxy cholecalciferol. This is the form that is useful in our body. This is what absorbs Calcium from our guts into the blood. In people with impaired renal function, obviously, the active form will be less because the inactive form is not being converted into the active form. So, people with kidney disease need to take a supplement of the active form.

Sunday, October 10, 2010

Better is possible

"...better is possible. It does not take genius. It takes diligence. It takes moral clarity. It takes ingenuity. And above all, it takes a willingness to try."

This line from Atul Gawande's "Better" sums up the book - "a surgeon's notes on performance". It is an amazing book. To be honest, I felt a little bored while reading the first three chapters which are about how doctors in three different, yet trying circumstances overcome difficulties to succeed. But that only served as a backdrop to make the point Gawande was trying to emphasize - better is possible.

In the medical field, as in any other profession, you have people who go about their job as a matter of routine. Like an everyday chore. They do not have any real passion for their job. And then you have what Gawande calls the "positive deviants", the people who raise the bar, the people who dream about their job in their sleep, those who constantly improve not only their own abilities but also the system.

Medicine is full of such examples. These are the people due to which we have innovations. The human body is terribly complex. To innovate in treating such a complicated system has its pitfalls. The risks are great. Yet, we find individuals who have the willingness to try and the ingenuity to back this determination. Fortune, as they say, favors the brave.

Very often, in our jobs, it is easy to 'fit in'. You have set processes. You have established procedures. It is easy for us to follow them. In doing that, however, we lose out on improvising. We lose out on finding new and better systems. Most of us go about our lives in this manner. It is important to come out of our comfort zones, to take risks and try to be better. It is the "positive deviants" that make an impact on the world around us. It is these people who actually change the world.

In the medical profession, more than any other profession, this is so important. The impact of such endeavors is much more because it is human suffering that is being addressed. The effect is much more fundamental to our existence. It is more basic than developing a nice-to-have gadget, for example.

People in the medical profession should definitely read this book. Others will also take away a lot from it.

Wednesday, October 6, 2010

Nephrolife - Bangalore's one stop renal shop

During my recent trip to Bangalore, I got a chance to visit Nephrolife. It wasn't planned however. On my way to Wonder la, in the middle of a traffic jam, I happened to notice their ambulance which was right next to our car. I quickly noted the telephone number and called to check if they offered nocturnal dialysis in the hope of utilizing this facility the next time I visited Bangalore. The receptionist transferred the call to the MD, Shriram Vijaykumar.

Shriram invited me over to the center the following day. I went over to Nephrolife on Sunday at around 12:30. They had a few doctors visiting to see the center as well. I met Dev Roy, the Chairman and nephrologists, Dr. Topoti Mukherjee and Dr. Sushma Rani apart from the other members of the team. They really have a fantastic team. Shriram and Dev showed me around the center and I had a great discussion about a lot of things - both related and unrelated to dialysis! Both of them are extremely passionate about providing quality care to renal patients.

Nephrolife is a state of the art center which has the entire gamut of renal services from dialysis to access surgeries to even pre and post transplant care. They have a complete set of specialists on board to take care of every need of the kidney patient.

Their hemodialysis center is extremely high-end with very comfortable dialysis chairs (Shriram actually made me try one!), each attached with its own IP TV that boasts of hundreds of channels and a large collection of movies.

They also take care of all the ancilliary needs of patients like a dietician and a psychologist.

They have also integrated technology very well with the center. Each ambulance is equipped with a GPS. Doctors' notes are also instantly transmitted to a computer using a special note taking device.

The one thing I found surprising is the price of a dialysis session. I couldn't help wondering how they are able to sustain the operation at such low prices! If they are able to keep the prices low and yet run the company, their years at Carnegie Mellon and University of Chicago have not been wasted!

Nephrolife, I am sure, is a welcome change for dialysis patients in Bangalore. They started this center in February this year and already have close to 70 patients which is very commendable. They soon plan to expand to other cities in India. Here's wishing them all the best!

Saturday, October 2, 2010

Re-nopain - I spoke too soon!

Yesterday, I wrote about how I used Re-nopain, the anesthetic ointment that I used successfully before cannulation. Well, I think I spoke too soon.

I used it last night too and there was pain during cannulation.

I will probably use it for a couple of more days and then decide whether I want to continue to use it or not.



Friday, October 1, 2010

Re-nopain works like magic

I have been using Lignocaine just before cannulation. I take a little bit in an insulin syringe and then inject a little in both the sites - arterial and venous and then cannulate. So, even though the lignocaine injection itself stings a bit, the cannulation becomes painless. After all, kuch paane ke liye kuch khona padta hai!

Recently, Jairam brought me a tube of an ointment called Re-nopain. It had lidocaine and prilocaine. I think its composition is similar to the Emla cream available in the US. You basically have to apply it an hour before cannulation and then it is supposed to act as a local anesthetic.

The advantages are two fold - first and foremost, there is no injecting, so it is totally painless and second, since you are not injecting, the damage to the fistula is minimized.

I have been meaning to try it for a few days now but kept forgetting until I was about to cannulate. Jairam then asked me to put a reminder on my phone that repeated every day! I did.

Yesterday, I put the cream on both the sites an hour before cannulation. I was very apprehensive about the pain.

Fortunately however, the cannulation was totally painless!

I am going to use it again today and if it works, I will finally stop using lignocaine injections!

Thursday, September 30, 2010

Overwhelmed!

It was threatening to be a bad birthday. Personal problems plagued me right until the previous evening. I almost cried. I started dialysis and was tossing and turning in bed until I fell asleep probably around 11.

Suddenly, the lights in my bedroom turned on. Jairam, the dialysis tech stood next to my bed and did a jig and then wished me. As I shook his hand, he signaled to someone. I wasn't wearing my spectacles so I couldn't make out what was happening. I was also half asleep. But I could figure out that there were some people coming into my room, one by one.

I was wondering what the hell was happening!

I reached out for my spectacles. I could hear someone giggle on seeing this.
When I wore my spectacles, I realized that it was almost the whole Nephroplus team in my bedroom!

I was totally surprised! They had all come to wish me at midnight!

They brought an eggless pineapple cake and made me blow the candles and cut it - all while on dialysis!




Then Sandeep played a video on his laptop that had pictures of me right from when I was a baby of probably a few months old to recently with background music. The video ended with a slide that said "We all love you Kamal"! That was really so sweet!

They also got me some flowers and a gift.

I was so touched. No one had ever made so much effort to make me feel so good! I was truly overwhelmed!

This is one thing I will never forget all my life! Thanks again, Nephroplus!

I did not sleep much after that. I got up early too and went to the temple. I was alone there which made the experience really good.

I then went to - where else - Poorna Tiffins and had my fill of 'Nayee Idli'. I am actually tempted to praise the idlis here but I know that if I write one more line about these idlis, you guys will kill me!

I took the day off from work. I relaxed at home in the morning, went over to Nephroplus in the afternoon to thank them for their wishes. Almost all the patients there had also called me during the day to wish me (one of them actually called at midnight too!).

I had dinner out with my parents.

When I got back, I quickly started dialysis with Jairam's help. Just as I was about to go to sleep, Srinivas came with a couple of his friends. They got balloons, a cake and gifts too! So, I again cut the cake - while on dialysis! We chatted for a while and then they left.

This was the best birthday I have had in recent times!

Monday, September 27, 2010

Back after a great trip!

I got back last night after a great trip to Bangalore.

We reached Bangalore Saturday morning and headed straight for Wonder la. The traffic was really bad. It took us a good one and half hours to get there. The folks from Bangalore and Chennai had already reached.

We bought our tickets and went in. Some of us were interested in taking the dry rides. I was only interested in the water rides! After taking a dry ride, we grabbed a quick bite and then went to the the changing area, took some lockers and changed into our swimming gear. Wonder la is the only water park I have been to where they do not insist that you wear a swimming costume in the water area of the park. You can wear practically anything. So, most males wear T shirts and shorts. Females wear anything from salwars to saris!

We first hit the wave pool. They have an artificial beach like area - no sand though, which is kind of good - and then every hour, they simulate waves for about 15-20 minutes. Fun overall!

We then went to something called a Play Pool. They have this big pool, mostly shallow, with water spraying and falling from everywhere. Then there is this huge bucket placed at a height into which water keeps filling and then at one point, it suddenly tips over throwing a large amount of water at great pressure on you!

Then there is the usual set of water slides and rides. Every hour, for fifteen minutes or so, they also have a Rain Disco where, inside a big hall, they simulate rain with good music where you can dance. The experience was good. The music could have been better though.

There are two restaurants which serve food that is only manageable. This is one area they can really improve. Not only the variety offered but also the taste. One good thing about the park is that the temperature of all the water is controlled and that too using solar heaters.

By the time we left the park, it was close to seven. We got back to the city, had dinner at a restaurant and then got back to the hotel. It was midnight by the time we slept.

The next day, my friends decided to visit a waterfall called Shivanasamudram, about a three hour drive from the city. I opted out. The falls turned out to be really great. Something for next time!

I spent my day relaxing, met with someone on Peritoneal dialysis and then visited NephroLife, a renal therapy center. More about this soon.

What I like about these short trips is that there is not too much planning necessary. You can do them at short notice. The excitement and anticipation is still there. I also don't have to miss more than a night of dialysis. I really must do more of these!


Friday, September 24, 2010

Off to Bangalore for the weekend

I am going to Bangalore tomorrow. I will be there for the weekend. Well, the itch to go somewhere was getting to me. So, I checked with a few friends (all Effigent folks) and a plan was quickly in place.

There is no specific plan for the two days I will be there apart from going to Wonderla, my favorite water park. I have been there twice before and had a whale of a time.

Actually, this trip almost did not happen. The tickets were booked. Everything was ready. However the threat of disturbances due to the impending Ayodhya verdict was weighing heavily on us. A long email thread debated whether we should go ahead with it or postpone it to next week. In the meantime, however, the Supreme Court decided to delay the verdict, unexpectedly! So, finally, the trip was on!

Saturday we go to Wonderla. Sunday has nothing planned yet. I would like not to do too much though. On previous weekend trips (Hogenakkal, Coorg) I tried to do too much on Sunday and by the evening, was so tired that I barely had the energy to get on to the plane to come back!

Which reminds me - I did my lab tests recently and most of the tests were totally out of whack. I have no clue why. Hemoglobin, PTH, Calcium - everything was unexpectedly bad. When I get back from Bangalore, I will have some serious digging to do.

In the meantime however, I hope to have a blast!

Friday, September 17, 2010

Sharps sting

I had what looked like a slight infection because of which I was put on a strong antibiotic and had to give rest to the three buttonhole sites that I  have been using for my arterial access during dialysis. So, I had to make a new set of buttonhole sites for my arterial access. The venous guys as usual have been well behaved.

Now the area around my arterial sites have become quite hard with months of use. I started one a little down the arm, almost close to the fold on the other side of the elbow. That area was fairly soft and I had no problem creating the buttonhole. Three days of sharps were enough. No sting. No fuss.

The second however is proving to be a tough nut to crack. Last night, as I went in, I felt a sense of numbing pain. I should have known that is not a good sign. I let it be. Dialysis started. Sure enough, in less than an hour, the pain started. The effect of the lignocaine had worn off. The sharp needle decided to act tough and show its true color, so to speak.

In the beginning I tried adjusting my arm, tried massaging the area with my finger and every other trick I had learnt. The pain wouldn't subside. Sleep also decided to play truant. Pain and sleep usually don't tread on each other's toes. When pain is around, sleep lets it have its way. It won't interfere.

Around 12:30, I decided to do something about it. I woke Jayaram, the tech and told him to remove the needle and use the site that had already been formed. We could use a blunt needle. He said that the current site wouldn't stop bleeding so soon so that was not an option. Then I asked him to take some lignocaine in a syringe and push it down the site. That would numb the pain and hopefully I could go to sleep before the effect of the lignocaine wore off. He did that.

The effect of lignocaine in a painful cannulation site is only next to poetry. You can actually feel the pain disappear within a few seconds. It gives you so much relief! Once the pain was gone, I fell asleep. It was probably around 1:00 in the night.

Today, of course, I will be using a blunt needle in the site that has formed. Tomorrow will be tricky. Fingers crossed!

Wednesday, September 15, 2010

Dialysis versus Dot Net Programming

Many times I feel that I haven't got a fair deal in life. Kidney failure, dialysis and all. But then I think about the poor souls who have to do Dot Net programming and my spirits rise. I have got a better deal than them for sure.

People on dialysis have to undergo something close to torture only thrice a week for four hours each time. Dot Net programmers have to undergo worse eight hours every day, five days a week. And that is if they have a good boss (extremely rare in the Dot Net world, a few years on Dot Net robs you of every vestige of niceness). Otherwise, it is 10-12 hours each day, 6-7 days a week.

The four hours on dialysis can leave your body quite drained. The eight hours on Dot Net leave you emotionally and mentally exhausted. Dialysis actually seems like fun in comparison!

Dialysis can actually be fun. You get to relax in a bed for four hours thrice a week, watch a movie, surf the internet (especially if you're dialyzing at a center like Nephroplus), read books, chat with the nurse or your neighbor dialyzor (whoever is prettier). Dot Net programming, on the other hand can be quite traumatic. You have to work on Windows, for starters! Gosh, Windows? Yes, Windows. A-crash-a-day Windows. A-virus-a-day Windows. A-security-update-a-day Windows. A-throw-up-a-day-on-seeing-the-UI-Windows. Then you have to work on C#. Which has basically all the bad things about Java minus all the good things about Java. And that brings us to the framework itself about which the less said the better.

So, you see, a life on dialysis can be a lot better than a life on Dot Net programming. Even if you're not going rogue and taking dialysis for the ride!

Monday, September 6, 2010

Getting tired of dialysis

Yesterday after completing my stuff for the day, I was so exhausted. I really did not feel like dialysing. The problem however was my fluid gain was quite a lot. I generally put on more fluid weight on holidays. So, despite being totally tired, I had to get on to dialysis.

This is happening a lot lately. Putting in a full day's work after traveling quite a distance to my workplace and then getting back in the mind-numbing traffic can take its toll. And then, when I am tired and itching to get to bed and get some rest, I have to prepare for my dialysis. I have to prime the lines and start dialysis myself. There is a tech but he comes very late and I really don't have the willingness to wait for him to come and start. I want to get it done with and go to sleep.

However optimal your dialysis regimen is, you do get tired of it after a point. Especially when you do it on your own. So, you have a nice little contradiction there. If you want good dialysis, you have to do it on your own. And if you do it on your own, you are bound to get tired of it after a while. On the other hand, if you don't do it on your own, it is difficult to get optimal dialysis.

This brings me back to seriously considering a second transplant.

Friday, September 3, 2010

Don't do this to me, Poorna Tiffins

I am hooked to Poorna Tiffins. For the last couple of years (more?) I have been going almost every Sunday morning (and sometimes mid week evenings too) religiously to this small little joint in Krishnanagar, Hyderabad to eat what I think are the world's best idlis.

I have also intoduced countless friends and family to the place and most of them are quite amazed at the quality of the idlis.

My brothers are convinced that one of the reasons I took up my current job at Grene and the secret reason I am involved with Nephroplus is that they are both quite close in distance to Poorna Tiffins!

The problem with Poorna Tiffins is if I don't get my weekly quota of heaven in the form of ghee-soaked idlis, my week does not go well. Really. I feel listless, incomplete, like something is missing, like I have not had a shower.

Now, the guys at Poorna Tiffins have this habit of going off on annual jaunts unannounced. So every once in a way, when I drive all the way to Krishnanagar, all excited at the thought of gorging on those idlis, to my utter shock and horror, I find the joint closed. How can an eatery close ever? This is the only eatery I know that actually closes.

Sure enough, this happened this Sunday too. On enquiring with the neghbours, I was told 'oorki vellaru andharu' (they have all gone to their  native place)!

The Jain Paryushan Parva begins this Saturday which is a time of general penance and fasting during which we don't eat out. So, I thought in case Poorna Tiffins had opened (it had been more than 5 days since the unsuccessful visit), I could make up for the lost Sunday and make sure I have a peaceful Paryushan Parva, not troubled by dreaming about idlis. No luck. The shutters were open but apparently they were going to take up some renovation work. So, no idlis for 2-3 days more, they said.

Drat! That means no idlis for me until the end of Paryushan Parva (next Saturday). So, I can now go only next Sunday.

Tuesday, August 31, 2010

Italy institute could not extract DNA from blood samples

I just got an email from the institute in Italy where I had sent my blood samples to be tested for the genetic abnormalities that have been implicated in atypical HUS. I was hoping they could advise me about a transplant based on the results. Unfortunately, they were unable to extract the DNA from the samples.

The whole process of actually obtaining the samples in the desired form involved a lot of effort (you can read about that here, here, here, here, here and here). It cost me quite a bomb too. Though the good folks at Italy did not charge me anything for actually doing the tests, the courier cost quite a lot since the samples had to be sent at a temperature between -20 to -80 degrees centigrade.

I am at a loss. They have now asked to send the DNA samples directly. I need to check if there is anyone capable of extracting DNA samples here. Then I will need to figure out how to send the samples and then actually send them. This is so frustrating. I am sure the institute in Italy did their best and I am sure this was unavoidable. But for me, this is really frustrating.

It is not as if I can avoid doing the tests altogether. The results of this test will dictate whether or not I should go in for another transplant and if I should, then what regimen must be followed - whether plasmapheresis must be used or if they would recommend the new drug, eculizumab.

The problem with a rare disease is that not many people have any interest in finding out about it. Even if they find out something, how many people is it going to benefit? If my nephrologist spends time reading up about aHUS, how many people is it going to benefit? All of one. Me. Not worth his time. On the other hand, if he reads up about Diabetic Nephropathy, for instance, he will be benefitting a large number of people.

Where does that leave me? To fend entirely for myself.

Monday, August 30, 2010

Once you know the basics, its all about common sense

The basics (for folks on dialysis):

PTH is inversely proportional to Calcium
Calcitriol increases Calcium and therefore decreases PTH
Target Calcium - 8.5 to 10.5 mg/dl
Target PTH - 150 to 200 pg/ml

Hint to self: Try not to get off Calcitriol - since it has helped tremendously with my bone pain - Vit D is thought to have other unknown roles apart from the obvious role of improving Calcium absorption and PTH suppression

When I did my blood tests a few weeks back, my PTH was 448 pg/ml while my Calcium was 9.9 mg/dl. If I took more Calcitriol, my PTH would have come down but my Calcium would have also gone up which was not a good thing.

I could also have increased the Calcium conentration of my dialysate which would have brought my PTH down but that too (obviously) would have taken the Calcium way up!

Enter Cinacalcet.

Cinacalcet was a recent drug that would reduce PTH without increasing Calcium. (This got added to the Basics list.)

I started Cinacalcet 15 mg/day. (Credit to Dr. Girish Narayen, my super nephrologist!)

(Aside: He also asked me to stop calcitriol which I did not do….. ssshhhhh)

Results of blood tests yesterday:

PTH - 187 pg/ml
Ca - 10.2 mg/dl

So, I did manage to get my PTH down without increasing my Calcium too much! And I did not even stop Calcitriol! Yay!

So you see, once you know the basics, it is all about common sense!

Sunday, August 29, 2010

Wanted: A Nandan Nilekani for State Sponsored Healthcare

I just got back from the coupon distribution of the Jain Dialysis Trust which is held on the last Sunday of every month.  This event always leaves me full of mixed emotions. On the one hand, I see so many patients being benefited because these coupons are often the difference between life and death for them. On the other hand, I see a terrible lack of information about what constitutes optimal dialysis.

I overheard a donor ask a trustee about how many times a patient needs to undergo dialysis. I smiled in my mind. The classic question! How many times does a patient need to undergo dialysis?! Really. That is such a loaded question. Depending on the person asking the question and the person answering it, you could have totally different answers!

To someone totally uninitiated, how do you answer that question? To someone who has been undergoing dialysis for a while now, how do you answer that question? Most people I saw today find it difficult to even spend the Rs. 300 that they need to per session. They can barely manage to get 8 sessions a month. How do you then even begin to talk about things like more frequent dialysis and its benefits?

The trust itself is doing an excellent job by giving the gift of life to about 200 patients. What should their priority be? Better dialysis for lesser number of people or the minimum dialysis required for a larger number of people? Probably the latter. The more the number of lives you can save, the better, I guess.

What is the way forward? How do we change this?

Only the government can do something in this regard. It needs to get its priorities right. It is not as if it is an impossible task. Arogyasree has shown us that it is possible. All it needs is a little creative thinking and some balls. Instead of spending crores on things like the Commonwealth Games, the government should expand this scheme and introduce it across the country. Yes, there are problems with it. Make someone committed from the private sector in charge of it. Like they did by making Nandan Nilekani in charge of the Citizen Identity program. Give him or her a free hand. The results will be surprising.

Friday, August 27, 2010

Am I really hooked to dialysis?

A few months back I switched to seven days a week dialysis as opposed to taking Sundays off. The reason was simple. Weekends, I generally have little to do. I don't go to work. I usually eat out or go for a movie with my family. As a result, I tend to have a little more fluid than usual. So, if I don't dialyse on Sunday nights, sometimes on Mondays, I feel just a little different.

Different. Not uncomfortable. Not uneasy. Just different.

So, I thought why not dialyse on Sundays too? I have been doing that for the past few months now. I take a weekday off once in a way. This happens rarely though.

All this has led my brother Karan to say that I am really hooked to dialysis. When he was here on a break from his MBA in the US, he often teased me about this. Around 8 in the evening, he would say, "Its already 8! How come you've not yet started?"

This has set me thinking. Am I really hooked to dialysis? Am I dialysing to live or living to dialyse??

The truth is that I don't want to restrict what I eat and drink. And this is possible only if I dialyse regularly. I have not yet been able to get rid of my mental obsession with fluids. Inspite of four years on daily nocturnal, I have not yet been able to think of fluids like a normal person does. I still pull off 2.5 to 4 liters of fluid a day. Please do not tell me how wrong or abnormal this is. I know.

This is the main reason I like to dialyse daily. No, however much this may seem the case, I do not enjoy the process of dialysis, I do not enjoy the needles in my arm and I do not enjoy being tied to a machine every night of the week just to be able to eat and drink what I want.

Monday, August 23, 2010

Will the Mahankali temple down the road please change its only bhajan casette?

There is a Mahankali temple down the road from where we live. We moved to the place where we currently stay about 14 years back. Every year around this time of the year, the festive season starts. You first have the Bonalu festival, followed by the Ganesh festival, then Dasara, finally culminating with Diwali.

Every morning, during this entire season, the temple plays devotional music. On a loudspeaker. This music is audible in about a 2 kilometer radius. This post is not even about my problem with that. Though I am dead against 'loudspeaker religion', I will save my comments on that for another post. My problem is that this temple plays the same bhajan casette every morning, every day of the season, FOR THE PAST 14 YEARS!

I now know the exact order in which the songs come. When one song ends, I can tell which one is next. In fact, if I hear one of the songs somewhere else in some other context, I feel very odd and uncomfortable because the next song does not come!

So, here is my simple request to the temple authorities: Please, change the casette.

Friday, August 20, 2010

Caregiver burnout

Kidney disease can be quite taxing for an individual. It is not a short term thing. It is often something you have to live with life-long. Yes, you often have years of peace but it often comes back in some form or another.

This can also take its toll on caregivers, the people around the individual affected by the kidney disease. The serious nature of the disease makes the patient the center of the world around him or her. The entire family's life often revolves around the patient and the disease.

There are surgeries. There are doctor visits. There are hospital stays. There could very well be dialysis which is often a thrice a week thing which takes up half the day. Week after week.

In all this, often the primary caregiver undergoes tremendous stress and frustration. Worse, this is rarely recognized and addressed. The patient occupies centerstage and there is no bandwidth in anybody's mind (including the caregiver's) to recognize that there are problems elsewhere as well.

This is a genuine problem. There are simple solutions however. They may not address the problem entirely. They can help alleviate the problem partially though. And this may be a big relief in itself.

We, the people with kidney disease must realize that our problem affects others too. Most definitely, we are affected the most. No denying that. However, there is a definite effect on our families too. We must be sensitive to this. A simple word of gratitude for them can make them feel much better. Also, we must try to become as independent as possible. Not only will we feel stronger, but this will also reduce the things our families have to do for us.

Primary caregivers must learn to take some time off from the patients and the disease. They must do the things they like to do, away from the patient, without feeling guilty. This will help not only the caregiver but the patient too.

These are little things that make a big difference. Both the patient and the caregiver must appreciate this problem and make a conscious effort to make sure that kidney disease does not take over their lives.

Thursday, August 19, 2010

Secular schools should be really secular

Most schools in India are secular. They not affiliated to any religion in particular. Some schools, on the other hand, are started by religious organizations.

It is perfectly all right for schools that are run by religious organizations to promote or teach their religion.

It is important however, for secular schools to be truly secular. The 'G' word must never be mentioned. Now, before you go about shouting me down as an atheist, let me clarify that I believe in religion and am a temple-goer. I however believe that teachers should never mention religion or anything related to it.

Every religion is different. Yes, we've heard many times that the fundamentals of every religion are the same. However, there are some basic differences between the major religions.

Christianity and Islam say that there is one omnipotent God. Hinduism has a pantheon of Gods, all omnipotent. Jainism is an atheistic religion and says there is no omnipotent God and places 'karma' as the ultimate force.

This is a very major difference between these religions.

Most schools however (unintentionally?) propagate the monotheistic line of one omnipotent God who helps us or punishes us. This belief sometimes becomes so ingrained into children that they find it very difficult to reconcile or accept any differing belief even if it is the one their family follows.

Religion is an intensely personal thing and it is entirely up to an individual whether to follow it or not and if yes, which one to follow. It is definitely not something that should be learnt at school.