Thursday, December 29, 2011

Can I please have my news channel back?

I suddenly realized that news channels are not the same any more. Earlier we had news bulletins at 8 p.m. and 9 p.m. that gave you 'news' as in 'news' not 'news' as in discussions to death about every happening of the day!





Every single bit of news has to have a discussion associated with it. And there always are the so-called resident experts giving their much more than two cents.

When I watch the news, all I want are the headlines and a quick summary of the main news of the day. That's how it used to be. 30 minutes of crisp, objective reporting of the incidents. Not opinions of every party involved and more.

Now suddenly, every channel has a debate after every news item! And some panelists are asked to stay on for all the news stories. Like they are experts on everything. Think Renuka Chowdhary.

I wonder why this change has come about. Is there any English news channel that does news in the good old format?


Tuesday, December 27, 2011

Trying to figure out the Effigent bond

On 25th December this year, former 'Effigentians' had the second reunion. It was great fun. We had some games, lunch and a whole lot of catching up.



When I look back at the gathering and also the years in Effigent, I wonder what it was about Effigent that brought everyone so close, what it was about Effigent that gives many people goosebumps even today, what it was about Effigent that was so magical?

I had written about this during Effigent's last few months here.

I still do not have any perfect answer.

I just leave you with the video that I put together when the consulting division was sold to another company:




Thursday, December 22, 2011

Steve Jobs - the book

I just finished reading Steve Jobs' biography by Walter Isaacson. It is a brilliant book. It takes us right through  Jobs' childhood up to the time just before he died. It brings us perspectives from Jobs, his family, colleagues, adversaries and many others. I read it entirely on my iPad and iPhone. The beauty of the seamless integration between the devices championed by Jobs was evident from this one fact: when I left the book on the iPad after reading for a while and then took it up a little later on the iPhone, the book on the iPhone opened up exactly where I left it at on the iPad!

Isaacson was called by Jobs to write this book. Jobs knew that books would be written about him after he was dead. They would not be able to get his side of the story. He wanted to correct that.

Jobs has often been portrayed in the media as someone who easily rubs people the wrong way, can be brutally frank and critical and tells it like it is. He can also be insulting. The book confirms this. However, this, in conjunction with the 'reality distortion field' led him to inspire people to do better and make such great products.

People have also criticized Jobs for the 'closed' nature of Apple products and the fact that Apple controls the entire eco-system around its products. The thing to realize is that this is the only way the experience while using these products can be seamless and enjoyable. The little thing I described in the beginning of this post is only possible if the devices are 'closed'.

I have a MacBook, an iPhone and an iPad. I never have a problem with crashing or hanging computers, viruses, transferring my music and books between devices and so many other things people around me working on Windows, Linux, Android and what-have-you complain about. iCloud is also such an amazing service that it takes this whole syncing business to an entirely new level.

There is no doubt that Steve Jobs has made a dent in the universe. Thousands of people around the world have experienced pure joy from the many products (and movies) that he has produced. He will be remembered for a long, long time.

Wednesday, December 21, 2011

Wanted: An Anna Hazare for the medical industry

Anna Hazare has stepped up the pressure on the government to bring about an effective Lok Pal Bill in the winter session of Parliament. People asked why Anna Hazare was assuming that the bill is not going to be passed and was planning an agitation. I kind-of saw reason in those arguments. But now, when I think about it, had the pressure been eased even if just a bit, the bill would never have been brought in this session. Well, I am still not sure if the bill is going to be a reality because our politicians are so thick skinned and devious that they may still find a way out.

Anyway, coming to the topic, we really need a crusader similar to Anna Hazare to check corruption in the medical industry. It is so widespread that it is a bigger danger than the administrative corruption that he has been fighting against. This is because it directly affects the life of the citizen. If administrative corruption is not checked, the worst that can happen is that someone's house may not be built, someone's pension may not be released or some corrupt ministers may get away after thieving the nation of a few thousand crore rupees.

What is happening due to medical corruption? First, what do I mean by medical corruption? Medical Corruption is basically when doctors and hospitals treat a patient for considerations other than the patient's health. For example, a doctor prescribing a brand of erythropoietin simply because that company sponsored  a foreign trip for him and his family. Or a doctor eschewing a particular brand because he was not sent on such a trip! In these cases, clearly, the patient's condition has become secondary. What became important is what the doctor gained from the transaction.

Referral fees is another huge area of massive, brazen corruption in the medical industry. Doctors are given huge referral fees for almost every service. Doctors, for the most part, send their patients to the service providers that offer the largest cut.

There are many such areas where corruption has become so deeply ingrained in the industry that it is no longer seen as 'corrupt' and yet it is nothing short of corruption. Shameless, absolute corruption.

It is more important for this corruption to be fought, in my opinion. For it is not merely money that is being lost, it is often lives that are put at stake.

Tuesday, December 20, 2011

The problem with monks who sell Ferraris

I had heard so much about the book that I finally bought it and read it. I actually heard the audio book first (much to the disgust of my driver who had to put up with an accented voice talking nonsense for hours on end instead of hearing the latest chartbusters) and then thought I would go ahead and read the book because the audio was abridged.

It was a good book. Good messages, a good style of writing, overall simple to follow, not too weighty. I was blown away when I read it at first.

However, what was new? Nothing much, IMHO.

We all know what's being said. We all know that we are spending way too much time in things we don't like. We all realize that we need to take a step back and see where our life is heading and then take corrective action. But how many of us actually do that?

I don't find myself having made any change or practising any of the steps mentioned there. I suspect that a vast majority of the readers of the book haven't either. Well, there are definitely a few who have but those are really very few.

Things like Art of Living and Landmark courses are similar. People are highly impressed at first, especially when they read the material or do the course. The key to making it work though and see any perceptible difference is continuous practice of the concepts involved.

Yes, there is nothing wrong with these courses or books per se but they are not like some magic wands that are suddenly going to make us feel very happy and contented. It requires much more than reading the book or attending the course. And at the very base, all of them are very similar in content.

So, stop and think hard before selling that Ferrari.

Monday, December 19, 2011

A fundamental question - Is the treatment giving a better quality of life?

I had written about dialysing our elderly here a few days back. I reflected on that deeply a few days back while discussing the treatment options of a patient with her son along with a nephrologist. The lady was 70+ years old. Her son was as committed as ever. I could tell that the option for withdrawing treatment had not once crossed his mind.

The nephrologist made a very important point. The question she asked was, "Is the treatment doing anything to improve her quality of life or is it merely prolonging her suffering?"

It was easy to see that the dialysis session was nothing short of torture for the patient. Within a few minutes of starting, she would ask for it be closed. She was also not totally aware of what was happening around her. For her, it was a strange surrounding even though she had been there a few times. In her mind she was probably wondering why she had been brought there.

The family was considering PD as one of the options to make it easy on her. The nephrologist did not feel it would benefit her.

The nephrologist asked the family to consider this question and answer honestly if they really thought the treatment was benefitting her.

Once the conversation wound up, the son went over to her mother and gently stroked her head asking her if she wanted to eat anything. He could hardly hold back his emotions. Neither could any of us.

Sunday, December 18, 2011

The Second Annual Ex Effigent Reunion

Second Annual Ex Effigent Reunion

Date: 25th December 2010
Time: 9 a.m.

Venue: A farmhouse on the outskirts of Hyderabad (same place as last year)

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 yet again taking the initiative!)

Thursday, December 15, 2011

Try not to change your nephrologist

Many people on dialysis keep changing their nephrologist. Every now and then. This is not a good thing. There is a lot of undocumented history that resides in a nephrologist's mind. This can never be substituted by anything.

Why do people change their nephrologist?

Mostly, it is because they hear something good about some other nephrologist. "He is very good, why don't you try him?" kind of a thing. Remember one thing. Once you're on dialysis, things happen. It is often not due to the nephrologist's fault. Chronic Kidney Disease lends itself to a host of co-morbidities (conditions that occur alongside the primary disease itself). This is part of the game. The nephrologist can often not do anything to prevent it. So, do not blame your nephrologist for everything that happens to you.

Some people do not find the time given by the nephrologist to them adequate. This is a valid concern. Some nephrologists do not spend enough time with their patients. It is not their fault. They have to see so many patients in a limited span of time. But what does the patient do in the circumstances? This is something that I have no solution for. But think hard before changing the nephrologist.

The time the nephrologist spends with you is very important in your overall treatment. A lot of thought goes on in his or her mind that gets stored in his or her brain. This cannot be replaced by any amount of documentation.

Think about how the human brain works. There is a lot of processing that goes on before arriving at a decision. Things that can never be substituted by books, journals and documents. The decision is arrived at based on a lot of experiences of the past, the dozens of cases the nephrologist has dealt with in the past and the results of so many different treatments and their outcomes that are stored only in his brain.

I am not saying NEVER change the nephrologist. But you must have a strong reason to do so. Don't do it just because the patient in the next bed at the dialysis unit asked you to.

Rolling stones, they say, gather no moss.

Tuesday, December 13, 2011

Wait!

I was recently chatting with an elderly gentleman of my 'sangh' (the community of people who belong to the same temple). He asked me what I was doing these days. I said I was working at NephroPlus, a chain of dialysis centers.

"Oh! so you have dedicated your entire life to this cause?"

I immediately clarified that I was getting a salary and this was a for-profit organization.

Yesterday's Business Line also attributed a lot of things to me that are not entirely true. They said that I started NephroPlus after years of fighting kidney disease. It was actually Vikram Vuppala who started NephroPlus. I was with him in spirit from Day 1. But it was totally his baby. I supported him. I officially joined part time last year and full time a few weeks back. To Vikram's (and the other co-founder Sandeep's) credit, they involved me right from the beginning so that they could get the patient's perspective while setting this up.

I loved the time spent there as this was very close to my heart. I finally answered my calling and joined the company. But this is a for-profit organization and I get a salary and sweat equity. So, its not like I have sacrificed anything for this or am giving up anything for this. So, please don't accuse me of these honorable things!

Monday, December 12, 2011

ISN Conference at Hyderabad

This year, NephroPlus put up a stall at the Annual Conference for the Indian Society of Nephrology. I attended all the days of the four day event. It was a great experience.

First of all, I saw everything 'nephrology' around me. Erythropoietin stalls, Iron stalls, Dialysis machine stalls, Dialysis center stalls. Kidney was probably the most used word around the conference!

There were a lot of very good sessions by stalwarts from round the world. And there were a lot of people attending the sessions - something contrary to what I was given to believe.

More than anything, however, I got the feeling that it was a great opportunity to network. For nephrologists, for corporates, for vendors, for everyone in the Nephrology industry.

I met with a lot of nephrologists, some of them pioneers, from around the country.

I ran into my own nephrologist, the man who has been treating me for the last fourteen years, Dr. Girish Narayen. He introduced me to his friend. While introducing me, he said he was not sure whether he should refer to me as his patient or his colleague (because of my current job at NephroPlus)!!

The most interesting meeting was with a doctor formerly associated with AIIMS, New Delhi. He came to our stall along with another doctor and started writing his name in our Visitor's Register. I was dumbstruck for a second as I saw the letters form. It was Dr. S. C. Dash. Dr. Dash is a very senior and respected nephrologist. When I was initially diagnosed with atypical Hemolytic Uremic Syndrome, a kidney biopsy was done to confirm the diagnosis. Due to the extremely rare nature of this disease, the biopsy slides were sent to Dr. Dash to confirm the diagnosis. This was a major step in my treatment.

I introduced myself to the doctor and told him that he had seen my biopsy slides years back! He of course did not remember that (he has probably seen thousands of biopsy slides!). But he gave me a playful box on my stomach and said he was very happy to see me like this, meaning, in good shape.

It was an excellent experience overall. When I moved to healthcare, specifically nephrology, from something as different as software, I never thought these things would happen. It has brought me close to many people I never imagined I could even be in touch with.

Sunday, December 11, 2011

In search of the perfect Baklava

Albert Einstein, while describing relativity said, "Put your hand on a hot stove for a minute, and it seems like an hour. Sit with a pretty girl for an hour, and it seems like a minute. THAT'S relativity.”

You might wonder what relativity has to do with finding good Baklava. Bear with me for a bit.

So, there I was, returning from the Indian Society of Nephrology's Annual Conference after winding up the last day this morning (NephroPlus had a stall and coming up is a post on the happenings), I took the short cut from Hi-tec city to Banjara Hills that goes through the road that houses "Sweet Nirvana", a place where I was told you get great Baklava.

Baklava is something I have been dying to eat from many years now. My yearning began when my grandmother returned from the US and Canada after a visit to her son and daughter. Apparently, my uncle, her son, makes great Baklava. My grandmother is very well read and has a flawless command over language. She described the whole process by which my uncle made the Baklava. He laid out the sheets of 'flow-dough' and then brushed it with syrup and then put crushed walnuts and then another layer of 'flow-dough' and another round of syrup and walnuts. And then he baked it at such and such temperature for so many minutes. The whole description caught my fancy and I have been dreaming of eating the Baklava since then. This was at least fifteen years back.



I have eaten what people thought was Baklava. I have eaten what people called Baklava. But I don't think I ever ate what was actually Baklava! Weddings, restaurants, no place served the real Baklava. Note that I had never eaten the real thing to actually know what it was supposed to taste like either. But I had made a mental note of what it was supposed to taste and look like and always compared it to that!!

So, I stopped at Sweet Nirvana and asked for some Baklava. I was told there was only one slice left. I asked how much it cost.

"Two fifty"

"Two hundred and fifty rupees?"

"Yes sir!"

"Ok, please pack it."

I was asked to sit at a table and wait. Rs. 250 for one slice of Baklava? I started thinking about how I will explain this to my mother!

In a few minutes I was on my way home. The container was opened and my parents asked me what it was. I told them. The slice was fairly big. We all took a portion. My parents said it was 'ok'. I kind of liked it. It was the closest it had come to my mental image and taste.

Then came the tricky part.

"How much did you pay for it?"

"You won't believe it! This thing usually sells for a couple of thousand. But I got it for six fifty!"

"What? You paid six hundred and fifty for that?"

"It is not at all like the Baklava we bought from Dubai. That simply melted in the mouth. Tell me the truth."

My mother was fairly sure the stuff she got from Dubai was better. Especially since this was six hundred and fifty rupees!

After a few minutes of this charade, they were convinced that it cost Rs. 650.

Then I told them, "I was just joking. It actually cost only two fifty."

"Don't tell lies Kamal. I am sure you paid more."

"I swear. Do you want to see the bill?"

"Yes, show us the bill"

I darted to my room and brought the bill and gave it to my mother.

"Hmmm. Rs. 250."

She was actually quite happy!

I said a mental thank you to Albert Einstein for his theory of relativity and took another piece of the Baklava. I promise that this time it tasted exactly like what I had in mind.

Thursday, December 8, 2011

Hitler gets angry about 'Kolaveri di'

A friend posted this from YouTube. I found it hilarious! This scene is very popular for such spoofs.


Wednesday, December 7, 2011

Bone pain rears its head again

For the last few weeks, I have been having bone pain again. I had severe bone pain towards the end of 2009. At that time I had realized that it was due to multiple factors - the low Calcium level in my dialysate and the low levels of Vitamin D in my body.

The problem with things that develop gradually in the body is that you are not sure until it becomes bad. For the last few weeks, I had pain on and off but I did not do anything about it. I was always wondering if it really was serious or was it just a passing phase? For example, joint pains can happen once in a while without indicating anything important, right?

But for the last few days, the signs were unmistakable. The only difference from last time was the areas in which the pain was there. While last time, it started mainly in the feet and back, this time, it is in the shoulders and back. It is quite bad in the morning. In fact so bad that I invariably get up at around 4 - 4:30 with the pain!

A few days back, I concluded that something was definitely wrong and got a battery of tests done including those for 25 hydroxy Vitamin D3 and 1,25 dihydroxy Vitamin D3 apart from Calcium and PTH. Both the Vitamin D3 results came back low. Especially the 1,25 test was shockingly low. The report says it was less than 1.6 pg/ml whereas the normal is 19.6 to 54.3! They don't even give a value. Just less than 1.6, they say. So it could practically be 0!

I went over to my nephrologist yesterday and he put me on Calcitriol 0.5 mcg once daily. Hopefully, this should correct my problem.

Monday, December 5, 2011

Unfairly condemned Creatinine

Ask any dialysis patient worth the little salt he eats which is the blood test he would most commonly associate with kidney disease and chances are that the answer would be creatinine. From the time you get diagnosed, everyone talks about creatinine. "How much is your creatinine?" is a question I have been asked the most, even more than, "What is the secret of your good looks?"

I have talked a lot about Creatinine in a recent post here.

However, a very interesting perspective about Creatinine was offered by Dr. Ashwin Aiyangar at the patient meet we had at NephroPlus recently. What he said was that Creatinine is a product of the breakdown of a certain compound in the muscle. So, if your muscle mass increases, your Creatinine increases.

Many people on dialysis in India have a huge malnutrition problem. Many nephrologists do not impose any diet restrictions on such patients. Heck, they are not even getting the basic nutrients; what is the point in asking them not to eat this or that? Many dialysis patients are so malnourished that their potassium and phosphorus are below normal!

So, in this context, the Creatinine is a good measure of how well you are eating. This is true for those dialysis patients that are on maintenance hemodialysis or those with End Stage Renal Disease. (Note that the end stage is not end stage as in end stage of life but end stage of kidney function!) These patients need not worry when their creatinine is too high. All that means is that they are eating well and they don't need to worry about being malnourished. These patients should check their creatinine only to serve as a marker of nourishment, never as a marker of kidney function.

In patients who are in the early stages of kidney function, the creatinine serves as a marker of kidney function and they should be worried if their creatinine is going high.

Sunday, December 4, 2011

One way not to proselytize

For the last few months, every Sunday morning at 6, an autorickshaw roams around in our locality and on the loudspeaker begins a sermon in Telugu. The voice is not pleasant. The sermon lasts about twenty minutes and then some music is played for a couple of minutes. The intent is obvious.

I have nothing against any religion. To each his own. However I am dead against this intrusive attempt to proselytize. The worst part about it is that it is entirely ineffective. Who would be willing to listen to a horrible voice trying to thrust religion down your throat at 6 on a Sunday morning? Anyone thinking about converting would have second thoughts!

Religion is a highly personal thing. It should never be worn on your sleeve. I wrote about this here and here earlier too. It has now spread to almost all religions. Its almost as if they are each trying to outdo the other in being 'heard'!

I doubt if any religion was like this a few centuries back. They have all evolved so much. Most have moved into becoming more external rather than internal. More about show, less about reality. More about competition, less about inner introspection. The clergy are often to blame.

Even my own religion has fallen prey to this trend.

Wednesday, November 30, 2011

Overheard at the dialysis unit

I was sitting inside the dialysis unit at NephroPlus doing my work at the nursing station desk when the nephrologist from UK I have been talking to came on her daily rounds. She was reviewing all the patients one by one and she came to a young 28 year old guy who has been with us for the past half year or so.

After some discussion, I heard the guy ask, "Can I have one liter of water right now? They can pull it off during dialysis, right?"

All of us including the nephrologist, the other patients on dialysis and I burst out laughing!

In the same breath, he said, "Doctor, I feel like having six liters of water every day!"

No one except a dialysis patient can understand these emotions.

Sunday, November 27, 2011

Pulling off more than I can handle

Most people on dialysis have this irresistible urge to pull off more fluid during a dialysis session than is actually required. The reason is very simple. We have to restrict our fluid intake. Most of us are allowed no more than a liter of fluids in 24 hours. And this includes anything that is fluid at room temperature. Curd, ice-cream, tea and of course water among other things all put together should not cross more than a liter.

So, when we get off dialysis, the meter starts ticking and every sip of water we take counts towards the fluid weight gain between two dialysis sessions. All the fluid that is present in our body above the 'dry weight' (weight of the body minus any extra fluid that would have been removed if the kidneys were working) is usually targeted for removal during a session.

If too little is removed, you need to watch your fluid intake very carefully until your next session - when you can pull off the extra fluid. Removing too much can cause your Blood Pressure to fall or can cause muscle cramps. Most people on dialysis prefer the latter! Because we hate, simply hate restricting our fluids! The basic restriction is bad enough. Further restricting because you did not remove enough is simply not acceptable.

This is what happened to me recently. I tried removing too much fluid and this caused the low BP.

Most family members of people on dialysis just cannot understand why we do this. Technicians and nurses rarely even make the effort. They treat it like another problem to deal with during dialysis sessions - one that increases their work.

This can be understood only by someone who goes through this. Someone on dialysis.

Saturday, November 26, 2011

The human body's alerting mechanism

Last night I found myself up around 3:30. I was slightly sweaty and felt weird. I tried hard to go back to sleep but couldn't. I waited for a while thinking that I would fall back asleep. No luck. I was feeling strange. I figured that my Blood Pressure (BP) was a little low. My body felt weak and drained.

I then woke up Jairam, the tech who comes to help with my dialysis. It was quite an effort. I told him to check my Blood Pressure and infuse some saline. I also asked him to turn the ultrafiltration (UF - removal of water from the body - an important function of dialysis) down. He did all this. He then checked my BP. The higher one was 60! Which was terribly low. Probably the lowest I have ever had! He infused some more saline. My BP was now 80. I could go back to sleep in a few minutes.

I had had a heavy dinner last night. I had skipped dialysis the previous night. When I checked my weight it was 4 kgs above my dry weight. So, I set the UF target to 4 liters. What I overlooked was that I had just had a heavy meal and 4 kgs was probably only 3 kgs of fluid weight. But I had skipped dialysis the previous night and thought I could not put on anything less than 4 kgs!

The important thing I want to highlight is how my body woke up when the BP went low and I couldn't sleep back. If I would not have woken up, the result could have been disastrous. But despite being very tired, I woke and couldn't sleep back. It was almost like my body realized that something was wrong and something needed to be done.

Isn't this simply amazing? I had written about the human genome and the sheer beauty of it all and this is another example of how fascinating the human body is. It has its own little mechanisms of working. It has its own little sub-systems that are so strikingly complex and yet so strikingly wonderful.

Sunday, November 20, 2011

In search of the perfect Sitafal ice cream

My memories of Sitafal ice cream go back to my childhood when my grandfather (mom's dad) would make it and call my brother Prasan, my cousin Nisha and me to his house to have it (we were his only grandchildren at that time). We absolutely enjoyed this and several other treats he prepared and spoilt us completely with! 'Ferndale' boasted of a garden like few others in the city and he grew amazing sitafal, tamarind, guava and mangoes along with things like curry leaves, limes and badams.

Making sitafal ice cream is definitely not for the lazy. This fruit is, by itself, difficult to eat. Every bit of pulp has a big seed inside and you need to use your teeth dexterously to remove the pulp and throw the seed away. These days, a lot of chemicals are also sprayed on the fruit presumably to prevent pest attacks. This makes it necessary to be careful while eating the fruit so that none of the pesticide gets into your mouth. It can lead to a bad cough. The sitafal itself is often wrongly accused of causing the cough but in reality, I think it has more to do with the pesticide that gets into your mouth in small quantities.



Making sitafal ice cream is an infinitely more arduous endeavor. You don't have the luxury of using your teeth to de-seed the pulp. You have to do it with your bare hands if you're doing it at home. Once you have the pulp, you can use it for ice cream or basundi or whatever other concoction you can come up with. Almost anything with sitafal should taste good!

Mumbaikars were treated to sitafal ice cream at the popular Apsara parlour. Then came Naturals. Naturals came to Hyderabad a year or so back and they already have a few outlets in the city. The sitafal ice cream, like many of the other fruit based ice creams is available only during the sitafal season. The sitafal ice cream from Naturals is truly a boon to mankind! It is so good.


The sitafal bits which are in abundance in the ice cream really enhance the flavor. It is nice and creamy, has the right degree of sweetness and the texture is just right. This is one of the ice creams you want to relish every little bit of. A little creamy flavor here. A little bit of sitafal pulp there. Every spoonful is a delight in itself. You just don't want the bowl to finish. And when it finally does, you are so disappointed and craving for more, it is difficult to resist the temptation of ordering another.

Saturday, November 19, 2011

Dialyzing our elderly

One of our older patients at NephroPlus passed away last night. He would come in twice a week. His son mostly accompanied him. I have rarely seen a son so dutiful and loving. He would bring in his laptop and work from the couch we provide next to the dialysis bed. The patient was getting tired of the disease. A couple of weeks back he had stopped coming. I talked to this son and wife a couple of days back. They said he was not willing to come for dialysis. They were trying hard to convince him but he just wouldn't listen. I talked to them yesterday morning and was planning to go over to their house this morning to try and convince him to come for dialysis. Suddenly last evening he became unconscious and was rushed to a hospital. But I guess it was probably all over.

Dialysis can be mentally draining. Week after week, without any relief, without any end to the suffering in sight, you go on and on. There is no light at the end of the tunnel for many. The lucky few who get a transplant get some respite at the end of it all but for the vast majority, this is a permanent thing, something they have to endure for life.

This has led many to question the necessity of dialyzing people who have 'lived their life'. Dialysis is not going to cure anything. Neither is it going to make their lives more pleasant. Dietary and fluid restrictions can be torturous. But this leads us to the question, "What if you don't intervene? What if you don't dialyze them?"

Dr. John Agar, an Australian nephrologist of international repute, in an answer to a question on a forum, says, "Conservative (non-interventional) care is a real and often advisable course. By intervention here, I mean machine and equipment intervention. Good studies - really sensibly and well done - have come from the UK and elsewhere, showing that CKD patients >80 years of age with more than one comorbidity ... do as well - or better - and certainly maintain an better quality of life if treated conservatively without dialysis. Their survival is a little less than 3 months shorter (on the average) than matched patients who chose dialysis ... but their quality of life, their hospitalisation rates, their last remaining time, is better."

He goes on to add, "The dialysis only adds to the misery, rather then relieving it."

The key here is whether to start dialysis or not? Once you start it is very difficult to withdraw. So, relatives of patients above eighty years of age must weigh the pros and cons carefully before deciding to start dialysis. More importantly, doctors must think hard about the benefits and the difficulties and then together with the family make this decision. I am not, for a moment, suggesting that we should not dialyze anyone over 80. All I am saying is it is not the same as dialyzing someone who is much younger. I am saying weigh the pros and the cons, arrive at a decision after a logical consideration of the facts and if the decision is that the patient is going to benefit with dialysis, then go for it.

Don't do it just because you have to do it.

Tuesday, November 15, 2011

Have Anna Hazare and friends lost their way?

I think so. Ever since Anna Hazare ended his fast at Ram Lila Maidan, the group has been plagued with one problem after another.

It all started with the Hisar by-poll. I agree with the Congress' contention that the entire anti-Congress campaign was unnecessary. What had changed since the fast was called off? Did anyone say the Lok Pal bill would not be passed in the winter session of Parliament? If they had doubts about the Congress' intentions, then the fast itself should not have been called off!

Then the allegations against Kiran Bedi. She billed her hosts for executive class whereas she flew economy. The excess money, she says, went to the NGO and not to her. You cannot call this corruption, for sure. But dishonest, definitely yes! A group of people fighting against corruption at this level and claiming the support of the masses must be totally above board. They must have impeccable credentials and no one should be able to point a finger at them. Sadly, Kiran Bedi has not lived up to this ideal.

Which brings me to the referendum they claim to have held in which an astonishing 99% of the respondents said they would not elect Sonia Gandhi if the Lok Pal bill is not passed. Just what were they thinking? This last act was extremely immature. Dorab Sopariwala, on a news channel said that when pollsters come up with anything more than a 60% majority, they start getting nervous. And here was a 99% result. Obviously, the question was 'leading'. "If your MP does not support the Lok Pal bill in parliament then will you vote for him/her?" Who would answer that with a 'no'?

I am fully in support for a strong Lok Pal bill and have written in support of it here and here. But after the fast, I think the group has failed to act in a mature and reasonable manner. And if the group doesn't correct this, this could cost us the bill. Anna Hazare must be strong and take bold steps and be more in control of what is said and done in his name.

For the sake of this country!

Friday, November 11, 2011

Yesterday, I did the unthinkable


Yesterday, I went out for a drink with some folks.

I ordered a mocktail and some bruschetta and made myself comfortable on the sofa-like seating they had at the bar. The bruschetta was good and the mocktail was tasty. It was served in quite a big glass. I wasn't dialyzing yesterday - it was Thursday. In fact, I mentioned to one of the people on the table, who asked me if I drank and I replied that I did not, that I wasn't supposed to drink even the mocktail since I was supposed to watch my fluid intake.

Under normal circumstances, I do not leave liquid in a glass. Even if it is water. If I am served liquid, I finish it. No exceptions. So, I usually rarely fill up a glass of water. I feel guilty. Two half glasses is fine. But never one full glass! Even though I am on nocturnal and can afford to have a full glass, the medical community has gotten me used to never having a full glass! Damn them!

But yesterday was different. I was sipping the mocktail slowly, enjoying every sip. I was half way through. I left the rest! I don't know why. It was not like it was not tasty. It was very good. But for some reason, I drank only half. Maybe because I was not dialyzing yesterday?

When I went home and checked my weight, I was only 1.5 kgs above my dry weight! Drat, I thought to myself; should have had the full glass. Only 1.5 kgs in one day? Even conventional dialyzers do better than that! And then I had a horrible thought. Am I becoming a compliant patient? Nooooo! Spare me!

Wednesday, November 9, 2011

Having standards of care in dialysis units

I have recently been interacting with a nephrologist of Indian origin who returned to India from the UK. During my discussions with her, I found that in nephrology settings in the UK (and in most of the US, Canada and possibly Australia and other 'developed' nations as well), they have standards of care that are well documented for all the common stuff related to dialysis patients.

For example, these are the blood tests you do every month. If the hemoglobin falls below some value, you start the patient off on Darbepoetin. No other type of Erythropoiesis Simulating Agents, mind you. Only Darbepoetin. And the dose would also be fixed. If the hemoglobin rose above some value, then you reduce the dose to this much and above this value, you stopped it altogether.

You had the basic rules for almost everything. What basic medication types must all patients on dialysis take? For example, most would be put on Phosphorus binders unless there was a compelling reason not to.

This is very different from the way medicine is practiced here, in India. Here it is very individualistic. And no, I am not referring to the patient! Everything depends on the doctor treating you. If your blood tests shows some value and you take it to your nephrologist, the way he would react could be totally different from the way the nephrologist of the dialysis patient on your neighbouring bed in the dialysis unit does!

While I agree to those that might argue that medicine is a very subjective thing and every patient is different, I find it difficult to see why the basics must be different. I interact with a lot of dialysis patients at NephroPlus and since we get patients from multiple nephrologists, I find that most of them are on very different treatment regimens for the same condition. It cannot be that different.

With some of the basics being determined by maybe, a panel of experts in advance, the nephrologists can actually focus on the more difficult challenges presented by patients. They could, without thinking too hard, instinctively react to the fundamental problems and spare their thinking time for peculiar problems faced by some patients.

There is one more advantage with this approach. Any new developments can be incorporated into these standards more uniformly and early on and not be prevented from reaching the patient simply because his or her doctor does not read up on the internet that often.

Tuesday, November 8, 2011

Is checking creatinine really useful once you are on regular dialysis?

Most dialysis centers have standard protocols when it comes to monthly blood tests. Most centers have Serum Creatinine as one of the tests required to be done as part of these tests.

From Wikipedia: "Creatinine is a break-down product of creatine phosphate in muscle, and is usually produced at a fairly constant rate by the body (depending on muscle mass).... Creatinine is chiefly filtered out of the blood by the kidneys."

So, if the kidneys are not functioning as well as they should, the levels of Creatinine in the blood rise. So, Creatinine can tell us how well the kidneys are functioning.

Once you are on maintenance hemodialysis, it means that your kidneys are not functioning. This is different from the few sessions that you need to do when you have Acute Renal Failure due to snake bites, accidents etc. When you are on maintenance hemodialysis, it means that you have Chronic Renal Failure (CRF) which means that the kidneys are not going to get back their function.

What is the point in checking Creatinine levels for those with CRF? Are you going to do something if the Creatinine level rises? Or if the Creatinine level falls?

Internationally too, mostly, Creatinine levels are not checked for CRF patients.

Despite this, month after month, most doctors prescribe Creatinine levels for their CRF patients. Patient also get attuned to this and expect to be asked to get their Creatinine levels checked. They are actually shocked when Creatinine levels are not checked!

A lot of these patients are secretly hoping for a miracle. That their Creatinine levels start falling and their kidney function returns. Well, I really don't blame them. But there are other ways to know this. Your urine output would start rising to begin with.

Please correct me if I am wrong on this!

Monday, November 7, 2011

Moving from a jugular to a fistula: mixed feelings

When I was put on dialysis way back in 1997, I was given an AV Shunt. It was a small surgery, done in an Operation Theater. Dialysis was totally painless. The arterial and venous lines were connected to the two ends of the shunt and dialysis would be done.

Shunts are outdated these days with the preferred mode of a temporary access for dialysis being a jugular catheter. The insertion of a jugular catheter is a more simple process than a shunt. It is mostly done outside an Operation Theater, often on a dialysis bed.

Dialysis using a jugular catheter is also painless. The two ends of the bloodlines are connected to the two ends of the catheter lines and the dialysis is started.

When I eventually got my fistula in 1997, I remember every one around me was excited. "The fistula is working!" "Here, feel the thrill, the bruit", the doctor would say offering me the stethoscope to hear the whoosh sound inside.

Dialysis, however, became horrible. There would be four needle pricks every time. Two to inject local anesthetic and two more for the actual fistula needles which were monstrously huge. I started dreading the whole thing.

So, what is it about the fistula that has medical professionals so excited?

For one, accesses like shunts and jugular catheters are temporary. They last for at most, a few months. And the number of such accesses you can have is limited. A fistula, on the other hand can last for decades. The main reason for this is that while temporary accesses are external accesses (there is something coming out of the body and this 'exit site' is highly susceptible to infection), a fistula is an internal access (the vein and the artery are connected inside the body, under the skin - so there is very little chance of infection).

However, the start of a dialysis session and at times, the entire session becomes a painful experience. The needles are by no means pleasant. So, while everyone around you is happy that you have finally got a fistula, you start wondering what the excitement is all about?! Days with the jugular were so much more pleasant!

One thing positive about the fistula from our perspective is that we can finally take a complete shower. With a shunt or a jugular catheter, you had to always be careful that you did not wet the site. With a fistula however, once the surgery site has healed, you can take a full blown shower, for hours even, without having to bother about wetting the site!

Thursday, November 3, 2011

Blood transfusions - very different from the Bollywood version

Recently someone on dialysis who had a low hemoglobin was advised by his doctor to take a blood transfusion. Innocently he asked me if he could get a donor and we could take the blood from the donor and transfuse it immediately to him?

The scene from the Bollywood classic Amar Akbar Anthony came instantly to my mind where Amitabh Bachchan, Vinod Khanna and Rishi Kapoor, lying on three beds are donating blood. Blood from the three cannulas is flowing into one bottle and from that bottle, the blood flows through a line to Nirupa Roy's veins - all inline!

Makes for some excellent cinema. Unfortunately, blood transfusions are not so simple and straightforward in real life!

In real life, blood is never directly transferred directly from donor to recipient. It is first collected from the donor, then screened for viruses such as HIV, Hepatitis B and Hepatitis C and then a cross matching sample is taken from the recipient and another test is performed to certify that the donor's blood is suitable for the recipient.

Also, often, the recipient is advised some subset of the whole blood that is drawn. It could be packed cells, platelets etc. Sometimes, whole blood is also infused.

Also, blood transfusions are not a very healthy thing to do too often. There is always a risk of catching viral infections that have not been detected due to the virus being in the incubation period. Even inherently, blood transfusions are unhealthy because they prevent the body from producing antibodies.

This means that we should be constantly monitoring our hemoglobin levels and take the dose of erythropoietin necessary to avoid blood transfusions. The guidelines for the dosage of erythropoietin varies from country to country but the guideline that I have been recommended is to make sure the hemoglobin is between 10.5 and 11.5. Anything less than that and you don't feel as well and is risky in other ways. Anything more than that and you could risk clotting your fistula. Again, you should check with your nephrologist about what hemoglobin range you should target.

Thursday, October 27, 2011

Update

I have not posted for really long now. I have been down with a bad bout of cough, cold and fever. I was given some very strong anti-biotics which had their own side-effects. Looks like things are turning around now. I should be back pretty soon. I hope you had a great Diwali!

Wednesday, October 19, 2011

Adjusted dosage of drugs for those on nocturnal dialysis?


Many drugs that are prescribed for people with healthy kidneys have dosing adjustments for those with impaired renal function. This is mainly because the kidneys that usually clear these out from the body are not effective and giving the normal dose can cause unsafe levels of the drug to build up within the body.

So, for example, though the recommended dosage of the drug Levofloxacin, a potent antibiotic for people with normal renal function with certain kinds of bacterial infection is 500 mg every day, those on maintenance dialysis are advised to take only 250 mg every other day after the initial dose of 500 mg. This is simply to prevent the drug from accumulating in the body because the kidneys are not causing the drug to be excreted out of the body.

Dialysis does remove some drugs but only to a certain extent given the short nature of the treatments and the relatively infrequent sessions.

With me? Great! All good so far.

Now, what about people on nocturnal dialysis - those that are getting much longer, better and frequent treatments? One would expect that the dosage for them (rather, us) would be close to those with healthy kidneys.

Not so simple!

There are a lot of factors that come into play here. The molecular weight of the drug is one of them. The ease with which substances are dialyzed out during dialysis is inversely proportional to their size or molecular weight. The protein binding of a drug is also important. The greater the protein binding of a drug, the lesser the tendency for it to dialyze out during a dialysis session.

It is therefore very difficult to come to any conclusion about the dose in those on nocturnal dialysis simply because there just haven't been enough studies on this subject. Well, you would expect that, wouldn't you? There are such small numbers of people doing this therapy that researchers probably feel that it is not worth the effort!

This whole question came up when I was advised by my family doctor to take the regular dose of Levofloxacin along with a cough syrup to battle my horrible cough. As is my habit, I looked it up on the internet and sure enough found that there was an altered dosage recommended for those on dialysis.

I posted this question to the good Dr. John Agar of Australia on the Home Dialysis Central forums. He said the same thing. We don't know for sure but he would recommend going with the hemodialysis dosage.

But in a theoretical sense, it is still an open question!

There is a great article for the medically inclined available here on the subject.

Tuesday, October 18, 2011

There are cough syrups and there are cough syrups

I have been down with a bad throat infection and congested nose along with fever for the last few days. As usual, I tried some home remedies but did not get better. I then started an antibiotic and a cough syrup. Two more days. No luck.

One evening, my temperature touched 102 degrees Fahrenheit. I then decided it was time to see a doctor. I went over to Sunshine Hospital to meet our family physician, Dr. Kirit Parekh. Dr. Parekh was the one who diagnosed my kidney disease in 1997 and I have been a huge fan since.

Dr. Parekh examined my throat and lungs and asked me to cough. One sound of the cough and he said, "Azethromycin is not going to work for this!" He then went on to prescribe another more potent antibiotic. He also prescribed a cough syrup. Once I was done with the doctor, I rested on a chair in the waiting lounge and asked my mother to pick up the medicines from the pharmacy. She did. I opened the packet just to see what she bought. I realized that the cough syrup that the pharmacist gave was not right.

There are two types of cough syrups. Cough suppressants and expectorants. Suppressants are used in dry coughs and they suppress the urge to cough. Expectorants, on the other hand are used in coughs where you bring out phlegm and they attempt to loosen up the respiratory tract to make it easy for you to bring out all the phlegm.

What I was prescribed was an expectorant. What I was given was a suppressant. Under normal circumstances, I would not have checked. I would have taken the syrup and my cough would have actually got worse because the phlegm would be suppressed inside. Of course, this would be discounting the action of the more important drug under the circumstances - the antibiotic. But you get the drift right?

When I returned the syrup to the pharmacy, the lady at the counter said that there was no expectorant available under that name. I asked for another expectorant that I had used in the past and she gave me that and I started using it.

This is why it is so important for all of us to be proactive when it comes to our health. These days you can never be sure. I believe a degree in pharmacy is required to run a pharmacy. But who cares about what is required? Whenever you buy some medicines, make sure that the name is exactly what is there in the prescription. There are tons of medicines with similar names with an extra suffix. For example you have Norflox and Norflox - TZ. Both are antibiotics but can have different actions. You have Becosules and Becosules - Z. You have many medicines that have a "plus" added. It is easy for the pharmacist to pass off one for the other because he does not want to lose the sale just because he does not have the correct drug. It is entirely up to you to make sure you have been given what you have been prescribed.

Monday, October 17, 2011

Yours truly on Nephron Power!

Nephron Power is a popular nephrology blog authored by Dr. Kenar Jhaveri, nephrologist from New York. It is an academic blog for nephrologists.

I wrote an article, "Give us the choice" on Dr. Jhaveri's invitation and I am so happy to report, it has been published today on the blog. You can find the post here.

At the end of the post, Dr. Jhaveri comments:

"What Kamal is saying is not only true likely in India but in USA as well. This is an ongoing problem as more and more Younger Nephrologists don't feel well trained or comfortable in taking care of PD.  Meanwhile countries like Japan, have majority of their dialysis patients getting PD.  Economics or patient preferences - both might be playing a role in this sad state of affairs."

Thanks Dr. Jhaveri for keeping the patient's perspective in mind and for giving me a chance to write for your blog!

Saturday, October 8, 2011

Six times, Seven times, Five times

When I started daily nocturnal home hemodialysis in May 2006, I dialyzed six times a week and took Sundays off. It was that way for a long, long time. However those were the days of huge fluid weight gains. Sometimes even 5 kgs in one day! So, my Mondays would be pretty uncomfortable. Heavy chest and all. There were two main reasons I was doing this. Most of my mentors in the US (Bill Peckham, Rich Berkowitz and Pierre Lachan) were doing six nights a week. So, I did too. And Jairam, the guy who did the dialysis for me would take Sundays off.

Then somewhere down the line, I learnt the ropes and could do everything on my own - from start to finish. So, I thought why not make my Mondays comfortable? And I switched to seven times a week! Six nights Jairam would do most of it and Sundays I would do everything. I would be alone in my room and I would do everything from start to finish on my own. My parents would be in the house though and I always had my cell phone next to me to call them should I need help.

Earlier this year, however, my parents went on a holiday to the US. I was home alone. Before going, they extracted a promise from me never to dialyze alone. They shuddered at the thought of a blood leak and no one in the house to help me. So, I switched back to six nights a week when Jairam would come and took Sundays off from dialysis.

Recently, involuntarily, my fluid intake has reduced. I put on, on an average, only about 2 to 2.5 kgs of fluid weight between sessions. Also, to be honest with you, I have started to tire of dialysis. Fourteen years are taking their toll. Needles are not pleasant. It is very difficult to get used to them. I was also 'inspired' by Bill Peckham's "two nights on, one night off" regimen! So, I decided to take Thursdays off as well. So, these days, I dialyze Monday, Tuesday, Wednesday, take Thursday off, then dialyze Friday, Saturday and take Sundays off.

Thursday, October 6, 2011

Farewell Steve Jobs


"Your time is limited, so don't waste it living someone else's life. Don't be trapped by dogma - which is living with the results of other people's thinking. Don't let the noise of other's opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary."

Steve Jobs, 1955 - 2011

Tuesday, October 4, 2011

Spare a thought for the caregiver

Being on dialysis is difficult. Being a caregiver for someone on dialysis can be difficult too. Seeing a loved one being diagnosed with a life-threatening disease can be emotionally very stressful. Every individual reacts differently.

I have seen my family over the years. And now, because of NephroPlus, I have seen and interacted with a whole lot of caregivers. Sons, daughters, wives, husbands, fathers, mothers. Almost every possible relationship.

Everyone starts off with shock and extreme feelings of love and sympathy for the affected person. How that holds differs from person to person. Some maintain the same level of love and affection over the years. In some, it slowly starts to wear off. In some, it turns into total apathy; in some even hate.

The patient also changes mentally. And this causes the family to change as well. I have seen people who were executives at good companies being reduced to simply names who occupy beds at the dialysis units during their allotted shifts. This can be quite humbling for the patients. They, who used to command the  respect of dozens of their subordinates, earned huge salaries, enjoyed the best comforts, always flew business class are now at the mercy of unethical technicians and nurses who sometimes even scold them. Yes, this can be humbling indeed.

I often see caregivers being severely burdened with guilt. Guilt for not doing enough. Guilt for not being there throughout. The whole problem with kidney disease is the continuity, there not being light at the end of the tunnel, it being a week after week thing, in perpetuity. Unlike cardiac disease where a surgery ends the problem (at least for the most part) or cancer where the problem often ends with the person (and the attempt here is not to lessen, in any way, the enormity of the suffering of the patient or the hurt in the family of these two health conditions), the fight with kidney disease is often drawn out over years causing a huge impact on an entire family's finances apart from the mental trauma.

Caregivers often realize that they need to get back to work! And to get on with their life. Sometimes patients make it easy by co-operating and being practical. However, sometimes, due to genuine reasons or otherwise, patients see this as being a crime. "He does not care for me any more!" Or worse, go into bouts of depression.

So, here's my advice to patients: Yes, we have the disease. We suffer the most. No two ways about that. However, let us understand that our family is also affected. In ways that we do not realize. Spare a thought for them. They have their own life. Let us not make our life theirs. Give them space. Let them live their life. If we do that, they will be recharged to help us with our problems.




Sunday, October 2, 2011

The software world loses a great programmer...

... to the healthcare world!

I recently switched to a full time role with NephroPlus. These have been very exciting times. Throughout my working life, the only thing I have ever done was software. Development, testing, managing. Years full of deadlines, requirements, design documents and code reviews. It has been a very rewarding experience.

When I started off in late 1999 at Summa Computers, the company belonging to my mother's friend, it was my first job. I was part time. I had just settled down into CAPD after the extremely tumultuous two-odd years with kidney disease and the unsuccessful transplant. I was itching to do something useful and my mother's friend agreed to take me on. I started learning Visual Basic and MS SQL Server.

A few months later, Obul, my uncle Paul's friend was looking to start a software company around web applications using Apple's WebObjects and he was in India and we met up and Effigent was born. Effigent took up the next eight years of my life. I worked on WebObjects apart from doing a lot of management. Effigent was definitely the most significant part of my career till now. I learnt a lot during these years both in terms of software and general stuff as well.

Somewhere in the middle, the tsunami happened and I had to eventually move from PD to home hemo.

I then joined Grene in November 2008 and worked on WebObjects, Cocoa and Cocoa Touch. This were probably my best two years as a pure programmer with no management distraction. I did some great work on home automation.

Software was my first love. It will always hold a special place in my heart.

I have been involved with NephroPlus since Day 1. There is no doubt in my mind that the work I do at NephroPlus is my 'calling'. I have struggled for years to find it. I am glad that I have. Many people don't. So, that way I am fortunate.

Life is very different from that in the software world. When you develop software, you basically enable people to do things. Outside it, you actually do those things! I am now on the other side of the fence where I am looking after the implementation of software prepared by someone else at NephroPlus.

I am very excited about the work at NephroPlus. I hope the years to come are productive, fruitful and intellectually satisfying!

Saturday, October 1, 2011

Birthday Videos

Here are the two videos done for my birthday, the first one by the NephroPlus folks and the second one by my Engineering College friends.



Friday, September 30, 2011

The 48 hour birthday

I celebrated my 26th birthday on the 28th. Yes, I finally started growing. I was stuck at 25 for quite a while. After a point, you have no choice but to accept your age. Gracefully. So let it be with Kamal.

So, I went to sleep the previous night. Last year, the NephroPlus team had come home in the middle of the night and surprised me like hell. There was no way they were going to do it again. I mean, who does these kinds of things every year?! I was on dialysis. I fell asleep after a while.

Suddenly the light came on. And there they were. The NephroPlus team trooping in one by one. Even Sara and Tabassum, former NephroPlus team mates had come! They brought a cake that I cut while on dialysis. They brought a beautiful clock and some cards. The best part was the videos that they recorded of the patients that dialyze at NephroPlus wishing me. Those were very sweet. There were also videos of the NephroPlus team that couldn't make it at night. I was really touched by Dr. S. Krishnan's video. He is a senior nephrologist of the city. This entire effort was co-ordinated by Sandeep Gudibanda, fellow director at NephroPlus. I will never forget what he did for me that night.



I couldn't sleep for almost two hours after they left.

The next morning, I went to - where else - Poorna Tiffins, had my fill of Idlis with ghee. After this I went to the Banjara Hills center where the team had decorated a part of the center with balloons and confetti and we had the cake cutting.




After this, A Srinivas suddenly called me and suggested that we have lunch together. Sure, I said. When I reached the restaurant, I was surprised to see some other really good friends there. We had a great lunch! That evening I had dinner at my favorite restaurant with my family.

At the dinner, I was shown a video by my brother done by Dinesh, Kamal Kumar and their families. These are my friends from engineering college. That video was also so beautiful! Thanks all of you!

I thought I was done. Nope. Not so soon. The East Marredpally center team complained that they did not get a chance to do the cake cutting with me. So, next morning, I went to the East Marredpally center and we had another round of cake cutting and general hungama.



And now a word about Facebook. Last year, I had this crazy notion that I shouldn't display my birthday on Facebook. Those who remembered my birthday would wish me, I thought. I was so wrong! I am no great celebrity! This year I realized that and changed the settings to show my birthdate. I was overwhelmed by the wishes. Almost 70 people wished me. Yes, it takes very little effort but the feeling that so many people wished me was really touching. People who I have talked to last close to twenty years back. They were wishing me! This is possible only on something like Facebook.

This birthday was probably my best ever. So much love and affection. I was moved beyond imagination. Thanks everyone who did this!

Tuesday, September 27, 2011

There is a solution for Restless Legs Syndrome

Many dialysis patients have something called "Restless Legs Syndrome". There is an irresistible urge to shake or move the legs and the inability to sit or lie still. This was my biggest problem many years back.

Many patients do not know how to describe this feeling. Many doctors don't know about it either. But it is a common problem. So, what happens is, let's say you're sitting (maybe at home or in a car). After a few minutes, you just have to get up and walk briskly. You just cannot sit. Or at night, when you are sleeping, suddenly you just have to shake your legs vigorously. You cannot sleep. All these are symptoms of Restless Legs Syndrome.

Remember, you are not alone. this is a common side effect of kidneys not working properly.

Luckily for us, there is a solution. If you are facing these symptoms, you should talk to your nephrologist about Gabapentin. Describe the symptoms and ask if you can use Gabapentin. It is available in doses of 100 mg and 300 mg as Neurontin in the US and Gabantin in India. Definitely do not take it without consulting your nephrologist who will assess the severity of your symptoms and decide the dosage and frequency.

This drug actually saved me from a lot of problems. It rid me of the symptoms in days.


Monday, September 26, 2011

Informative brochure released by the aHUS Foundation

The atypical HUS Foundation has just released a very informative brochure about the disease. The brochure can be downloaded from here.

The brochure explains the disease in simple terms and also talks about the types and the treatment options. It also has some stories of people affected by this disease. (Hint: See Page 5 of the brochure!)

It has been put together by the Foundation for Children with Atypical HUS, a group of people whose children have been affected by this disease. It also has some adults (like me) who have aHUS.

This is a very rare disease and some 300 children and a handful of adults in the US are expected to have it. It requires a very dedicated team to do any kind of research on diseases such as this because there is hardly any bang for the buck, so to speak. So, only the very academically inclined who really have a deep interest in this class of diseases or the underlying phenomena get into this.

For diseases that are more 'mainstream', any work by researchers yields a lot of benefits simply because of the volume of patients that would benefit from the work.

It is through this foundation that patients such as me can come to know about all that's happening in this small world of aHUS.

Sunday, September 25, 2011

How RSS feeds dry up our lives

I use Google Reader to track all the news I am interested in on different subjects for example, aHUS, dialysis, Apple etc. And I use the Reader app on my iPad to check the feeds and go through the stories. I also use the same mechanism to read the blogs I follow. This method however, strips out the 'soul' of the blogs - the backgrounds, sometimes the images and videos and the comments.

This is all right for news articles but not for blogs. Blogs must be read on the original site, not using a feed reader. Is there a solution for this? I had written something similar a while back here and I haven't found a solution for this yet.

Basically all I want is an app that checks the blogs I follow if there are any new posts and then show only those blogs in their original interface - exactly like they would appear if I visited the blog website.

Any suggestions?

Saturday, September 24, 2011

FDA approves Soliris (Eculizumab) for atypical HUS

In a significant development the FDA in the USA approved Soliris (Eculizumab) for use in atypical Hemolytic Uremic Syndrome.

To those saying, "Huh?": Read on!

Atypical Hemolytic Uremic Syndrome (aHUS) is a rare disease that afflicts mainly children and a few adults. It causes kidney failure in a lot of cases. I have that disease and it is the cause of my kidney failure.

For years, there was no treatment for aHUS. Plasmapheresis was the only thing that could be tried and that too with varying success.

Eculizumab, manufactured by Alexion Pharmaceuticals as Soliris is an extremely promising drug that has been found to be useful in the treatment of this disease. For those just diagnosed with it, treatment with this drug can prevent them for going into kidney failure to begin with.

For those like me whose kidneys have been affected by this disease, this drug offers hope of a successful transplant. Without this drug, the chances of a successful transplant for me are a pathetic 20%. With this drug, the chances of success zoom into the heady 90s!

This drug has been FDA approved for treatment in another disease called Paroxysmal Nocturnal Hemoglobinurea for a long time. Only yesterday did the FDA approve it for use in aHUS.

This is a significant moment for the aHUS community as this means the drug will be more widely available.

For me to able to use it, if course, it will need to be available in India, which is another story!

Sunday, September 18, 2011

Leeching of vegetables - a great way to reduce your Potassium intake

People lucky enough to be on dialysis must watch their Potassium intake. Just imagine. Life becomes so interesting with these kinds of rules, right? And it can be an edge-of -the-seat thriller if you go above the normal limit of Potassium in the blood. You can become breathless, your heartbeat can become irregular and in extreme cases you may also no longer need to do dialysis! (Yes that was a mean joke, forgive me for this bad attempt at humor on a Sunday morning!)

So, what must we do to limit our Potassium intake. First of all, the simple stuff - don't touch bananas (raw and ripe), chikoo, mangoes and such similar high Potassium fruit. Don't even look at coconuts - they have that much Potassium that it can actually travel over air into your system (hehehe!). Most fruits are high potassium. So, while we may be able to have a little low-potassium fruit (half an apple, a small pear, a small guava, a slice of papaya etc.) - you should check with your doctor or dietician about this - provided we are getting regular, thrice a week (at least) dialysis, we should never binge on fruit.

Most vegetables also have moderate to high potassium in them. However, there is a great way to remove most of the potassium from vegetables without actually impacting their taste. It is called leeching. Now, how many times have you heard that you can actually do something like that - get rid of most of the bad stuff (potassium) while retaining the good stuff (taste)? Not very often since you first saw that high creatinine report, huh? Same here!

So, basically, you dice the vegetables into small pieces. Wash thoroughly under water. Take enough water in a bowl and put the vegetables into it. Boil for about 15-20 minutes. Discard the water. Now you can use the vegetables as you would normally. Most of the Potassium is leeched out of the vegetables. In most of the vegetables, the taste is retained almost wholly.

This technique will not work for vegetables like bhindi, brinjal and some other vegetables but it works wonderfully well for things like beans, cauliflower, cabbage, ridge gourd (toora), bottle gourd (lauki) and most other vegetables.

Yes, it is an additional hassle for the cook! But I would say it is worth it. All the extra potassium is really not good. So, if there is a way to remove it without losing the taste, why not?

Monday, September 12, 2011

Billing at hospitals

As I mentioned in this post, I had to consult the hepatologist at Asian Institute of Gastroenterology a few days back. His OP room (the room where he saw his patients) was on the mezzanine floor of the hospital where the lift did not go. So, you basically had to take the stairs to go there. Or so I was told by the staff at the hospital.

By the time I had figured that he was indeed in the hospital and seeing patients at that time, I had already made one trip up and down by stairs. Though I am not sick enough to not be able to do that at all, I am not well enough to do that without becoming short of breath. Anyway, I gave my file to the hep's secretary and it was put under the files of patients who reached there before me. Suddenly, the secretary asked me for the bill for the consultation fee. I asked him where I could pay. He said I would have to go to the main reception and pay.

Crap! I would have to climb down to the Ground Floor, pay and then climb the stairs again!

I have never understood why most hospitals have billing centralized at the main reception. Yes, it is convenient for the hospital management. But it can be a nightmare for patients. Only when you become a regular do you realize this and pay on your way up. For the hapless newcomer, it is always at least a few visits before this is figured out. Even if there is a lift, hospital lifts are almost always busy and you waste a lot of time making the unnecessary trips.

Some hospitals have billing at the respective counters. This is so much better. You simply need to add this to the job responsibilities of the secretary. It is so important for hospitals to think about these little things from the point of view of the patient.

Friday, September 9, 2011

Callous hospitals

Yesterday I had to go to the reputed Asian Institute of Gastroenterology in Hyderabad. I have been going there for the last few years to consult a gastroenterologist for some stuff. Yesterday I had to consult a hepatologist as well (on the advice of the gastro) to take some important decisions.

So, I went to the reception where they do the billing to ask what were the consultation timings of the hepatologist. The lady at the reception said that the concerned hepatologist does not see patients in the morning. He comes only in the evening between 6 pm. and 8 p.m. So I went back to the gastro's OP room and waited for him thinking that I would first consult the gastro and then return that evening or the next for the hep.

About half an hour into waiting, the gastro's secretary, with whom I had established a good rapport during the past so many visits there asked me about the hep consult. I said the hep did not see patients then apparently and came only in the evening. He told me that was wrong and the hep was actually seeing patients in his room right then!

I was shocked. Here I was waiting like a fool assuming that the hep wasn't available and was planning to make another trip that evening or the next day and all this while the hep was actually seeing patients! I rushed to the hep's room and found that he was, indeed, seeing patients! I quickly gave the hep's secretary my file. There were about ten patient before me. If I had come half an hour before, my turn would probably have come and I would have been done by then!

For the bitch at the reception, it was one careless, capricious remark. For me, it not only wasted so much time, but it almost made me make another whole trip.

Why can't hospitals pay a little more attention to such basic stuff?

Sunday, September 4, 2011

Beware of Reliance Big Adda - they're huge cheats

My mother lost her cell phone recently. So, she needed a new phone. I thought she should get something that gave her instant access to email since many of her friends were on email and it would be nice for her to get hooked to email too. She has an email address but you know how it is with some people, right? Send them an email and then call them and tell them you've sent an email! Heck, you might as well tell them the content as well on the phone! My mother is like that. She rarely checks her email but she proudly goes about giving her email address to everyone.

So, I thought we should get her a phone that will give her instant email access. That narrowed the choice to two phones - an iPhone and a Blackberry. Now, under normal circumstances, I wouldn't have thought twice about this and straightaway gone for the iPhone which is a far superior product than anything out there (BB, Android, Nokia, Galaxy something). But it was far beyond our budget at this point. Even the iPhone 3GS at Rs. 20,000 seemed too high.

At this point, one fine day, my mother got an SMS from an unknown number saying that they were selling the Blackberry Storm 9530 for Rs. 9,999 and that the phone was actually worth more than Rs. 26,000. My mother forwarded the SMS to me. If I was interested I was supposed to send an SMS to some number. I did that. No harm in checking what it was all about!

A little later I got a call from someone asking if I was interested in the phone. I had looked up the features and it had what we needed. It may not be the best Blackberry model available. But it had what we needed. The guy on the call was a typical call center sales executive. Heavily accented voice. Full of enthusiasm. Making promises like nobody's business.

The model that they had messaged about did not have a physical keyboard. I asked for a model that did. He suggested the Tour 9630 which had all the features of the 9530 but had a physical keyboard. I asked him if it was locked to any provider. He said no. I asked him about warranty and service. He said we just had to call a number and someone would come and collect the phone in 48 hours and then have it repaired or whatever was needed. I then said I needed some time to think. He asked me to place the order. When the order was ready, I would get a call and I could say I did not want it. Fair enough. I confirmed the order.

After ten days I got a call asking about the order. I asked them to deliver it. The next day the parcel came. I paid the cash and took the phone. I opened the box and everything seemed all right. It was a sealed box. I opened the covers and then put the battery in. the display said 'Insert sim". I took my mother's sim and then opened the back and tried to figure out where and how I could insert the sim. Believe me, inserting a sim and removing it is such a difficult thing in this model (may be other models too?), that I rued the minute I ordered this phone. The worst however was yet to come.

Even after managing to insert the sim, the phone continued to say "Insert sim". I removed the sim and put it back again. Restarted the phone. Still the same. I put in my sim thinking may be the sim has a probably. Same thing.

I called the number I had for customer care. Some weirdo answered and gave me the typical bull shit that call center executives are trained to give. Try this. Try that. Restart. Sit on it. Throw it up in the air and try catching it. Then they say they will make a request for replacement. And how will they replace it, I asked. They asked me to courier the instrument to their address. Yeah right! They send me a defective piece and I have to courier it to them?

I looked up the internet for this problem and now think that they have sent me a locked phone. I get the Verizon logo while shutting and starting it up. So, it is either a locked phone or a defective one.

I now feel I should have gone for the iPhone 3GS. There are no free lunches in this world. If you pay less, you get less. It is as simple as that!

Thursday, August 25, 2011

Anna's three conditions must be met

So, the government has finally given in. Or have they?

The three conditions that Anna Hazare has set for him to give up his fast - that discussions must start on the State Lok Ayuktas, on the Citizens' Charter and that the lower bureaucracy must be included in the Lok Pal - are the absolute crux of this whole movement that has galvanized the entire nation!

Team Anna has hit the nail on the head. These are the most important parts of the Lok Pal. Honestly, if the Prime Minister is corrupt or if the Higher Judiciary is corrupt, it does not affect the common citizen directly. We may seethe with anger. We may discuss it and post statuses on Facebook and Twitter. But it will not affect our day to day actions.

However the lower bureaucracy is what you and I have to deal with in our daily lives! It is the citizen's charter that will help us get our things done. For example, that a ration card must be given in three days or that a passport must be issued in fifteen days are revolutionary steps that will make the life of the common man so much less frustrating.

So, at the risk of sounding cruel towards Anna's health, I am hoping that the fast is broken only if absolutely fool-proof assurances are given by the government on these three issues.

Saturday, August 20, 2011

I might as well give my 2 cents on Anna

You remember this song:


Its Eer Bir Phatte. In the middle it goes, "Eer kahe chalo lakdi kaat aae, Bir kahe chalo lakdi kaat aae, Phatte kahe chalo lakdi kaat aae, Hum kahen chalo humau lakdi kaat aae..."

So, since everyone is giving their two cents on Anna Hazare and the Jan Lokpal, I thought chalo hamau apne do cents de de!

Ok, so after hearing this topic debated to death on the news channels (mainly NDTV, I find Arnav Goswami making everything a national issue of grave consequence so even a real national issue of grave consequence seems mundane), I agree that people rallying around Anna are not really rallying around his version of the Lok Pal but are rallying together since they are so fed up and angry over the corruption this Congress government has systematically institutionalized. Every government is corrupt. But the Congress takes it to entirely different levels! 

And excuse me, why are they harping about bringing Raja and Kalmadi to book? Why were the 2G and the CWG scams allowed to happen in the first place? The PM keeps blaming the compulsions of leading a coalition for all the ills in the country. Sometimes I feel we need more of a strong PM than an honest one!

Coming back to Anna, I strongly feel they should be more reasonable. Rather than set impractical deadlines and fritter away a golden opportunity, they should come back to the negotiating table and sort things out with the government. The wily government managers are waiting for things to cool down. Public support for the cause may not last long. When people tire of camping at Ramlila Maidan, the numbers will soon dwindle and Anna will be called a loser. At that point, all we will be left with is, as Arvind Kejriwal famously termed it, the 'Jokepal'!

Team Anna should start talking with the government and sort out the contentious issues now. Now is when the heat is on. The government cannot be seen as going soft on corruption. They will have to compromise on some of the issues. Get what we can when we can. Later might be too late.

Thursday, August 18, 2011

My changing attitude towards dialysis

Until a while ago, I never used to like to miss a dialysis session. I would go for at least six nights a week and at one point actually started dialyzing every day. Seven days a week. No break whatsoever. At that time, I was mostly starting on my own and Jayaram would close. On Sundays, when Jayaram did not come, I would do everything on my own. Of late, however, I have been waiting for Jayaram to come and start. I had a couple of scary incidents and so got a little wary of starting.

Honestly, for the past few months I have become a little tired of dialyzing every night. The whole rigmarole of priming the dialyzer and the lines and then starting on your own and then being all alone while dialyzing has got to me. Also, I sleep about 70-80% as well on dialysis than off dialysis. The most important factor, however, is my fluid intake. Believe it or not (and swear you are not going to tell my nephrologist) I used to put on 3-4 kgs of fluid weight every day. Even people with healthy kidneys don't drink that much! But I had a major mental problem.

Recently, my fluid weight gain has dropped to an average of 2.5 kgs per day. I know, that is also quite a lot. But it is at least better than before and headed in the right direction. Not that I am making any conscious effort or that I am unduly worried!

The thing with this is now I can afford to miss a session, especially on Sundays, since my weight gain does not warrant one. So that obviates the need for me to do everything on my own. And I get a full night's sweet, deep sleep.