Kamal Shah's Blog

Announcing Aashayein 2012

2012-01-26T08:59:00.000+05:30

Aashayein is back!

Aashayein, the one day exclusive free event for dialysis patients is back. After creating quite a sensation last year, the NephroPlus sponsored Hyderabad Kidney Foundation is organizing the second edition of the event this year on Sunday, 19th February, 2012 at 9:00 a.m. The event is being held at the same venue as last year, Hotel Fortune Select Manohar, Begumpet, Hyderabad.

The event will have educational talks by nephrologists, urologists, dietitians and patients. There will also be a whole lot of fun and games exclusively for dialysis patients. There will be an elaborate lunch prepared as per the dialysis patient diet. There will also be a whole lot of goodies for dialysis patients which will include erythropoietin injections.

NephroPlus is the chief sponsor and the title sponsor of the event. Biocon Nephrology and Nipro are the other main sponsors.

Seats are limited and last year, the registrations had to be closed a few days prior to the event. So, I would suggest that you register early enough. To register, please visit the Hyderabad Kidney Foundation website or call 8008-964-888.

My Lawn project - Part 2

2012-01-25T06:00:00.000+05:30

Yesterday, I wrote about how I did up my lawn initially and how it finally dried up.

For a long time, there was a small patch of grass, dried up, almost anemic, that remained to one side of the lawn. Every morning as I sipped my steaming hot cup of Darjeeling tea, I would look sadly, helplessly at the lawn and wonder when I would do it up again.

At one point, I almost committed a blunder. I almost decided to cover the area with stone. "Limestone!", my granite expert brother suggested. We actually went to a shop and selected the stone, fixed up the price and asked them to send the marker to measure the area. Luckily, the marker never bothered to show up and I never bothered to follow up. My heart was wedded to the lawn.

A few days back, in an extraordinary moment of determination, I pulled up justdial.com and keyed in "carpet grass" for my city. A bunch of numbers were sent to my mobile number and email address in a second. I called couple of them, picked one that seemed most professional, checked the price and asked him to send 120 square feet of carpet grass. I asked him to send a variety that did not need sunlight. He said that would be shade grass and would come in a sack and they would need to plant the blades and we would need to wait for 45 days.

Nooooooooo..... not again!

I asked him to send the carpet grass. If the parts of the lawn that did not receive sun light dried up, I could always order a few blocks of the carpet grass and replace those areas, I reasoned to myself. All this happened on a Friday. I asked him to have this done on Sunday. I would be at home. I could supervise this myself.

The grass arrived Saturday evening. I was excited. I also ordered the other things that would be needed - vermi compost and neem cake.

Sunday came. 9:30 a.m. No sign of the maali. I called him. He said there was a strike and they would not come! I asked him why he did not inform me that he was not planning to come. He did not understand that question! Inform? For what?

I let it rest. Monday it would be.

After a couple of phone calls on Monday morning, the maistry arrived with a maali and maalin in tow. He asked me to get a trolley of red sand. I had that arranged. The maistry gave instructions to the team on what had to be done and left. The duo got to work. First they cleaned the area thoroughly and removed the old patch of grass. They also cut the lower branches of the palms so that light could enter the area.

Then they started laying the grass, one slab at a time. Each slab measured 2 feet by 1 foot.

Here is the finished lawn. The lines that you see between slabs should gradually disappear.

This is a shot of the lawn from inside.

Overall, I am very happy with the lawn. The maistry sort of dampened my enthusiasm a bit by asking me not to step on it for a few days. The number of days varied from 4 to 15 at different stages in the conversation. I am going to average it out to 7.

The lawn will require a lot of work - watering twice a day, mowing etc. But this time I am determined to make it work!

My Lawn project - Part 1

2012-01-24T09:54:00.000+05:30

In our house, we have space for a lawn. It is a small little private space hidden from prying eyes on the road, tucked away at the back of the house. When we moved in, we were all gung-ho about the lawn. On the advice of the architect, we planted a Silver Oak at one corner. Slowly, however, we got sucked into our busy schedules and nothing was done about the lawn. It lay just like that - a brown piece of land awaiting some love. The Silver Oak was a lonely crusader in the battle for green.

A few years into my kidney disease, I developed a green thumb - not sure if that has anything to do with the kidney disease though! I then went and got hold of a maali - a gardener and got him to do up the lawn. He brought grass in a bag and dexterously planted the blades at small distances from each other. It did not make a great visual but I was promised by him that in a month or two we would have a beautiful lawn.

I religiously would water the lawn every morning and wait. "Ah, look there, there's a green patch coming up", I would exclaim every now and then. In about two months we had a functional lawn. In the meantime I had also brought some potted plants and placed them at the front of my house. I also planted some Arecka palms at one end.

Lawns can be demanding. Our lawn quickly grew wild and needed urgent trimming. I hired a gardener - a young guy, Veerappa - to come every Sunday and do the mowing and the necessary maintenance for the potted plants. This gardener was a dedicated soul. Clearly, he enjoyed his work. He loved plants and would caringly look after them. For a few years, things continued well. I was very proud of my lawn.

At Veerappa's level however, passion is rarely enough to feed hungry stomachs. He became a traffic policeman and told me he would no longer be able to look after my garden.

I looked around for replacements. Spread the word among everyone who worked for us, the security guy of the neighbours, anyone who might know a maali. After all, Naukri.com has no section for maalis!

We did get a few applicants. We even hired a couple of people. Their quality however was pathetic. All they wanted was money. No passion, no commitment. I quickly got angry and fired them.

So, that was it. The lawn received no attention. All of us were busy with our lives. Who had time to look after a lawn? It quickly grew wild and unwieldy. No one dared venture into it. Slowly, the Arecka palms continued to grow however. They totally blocked out the sunlight from the lawn.

Due to the lack of sunlight, the lawn dried up. And that was the end of the story.

Until, of course, Part 2 happened!

Sapnon ki rajdhani? The problem with doing the lyrics after the music

2012-01-19T20:42:00.001+05:30

I really loved A R Rahman's music for 'Ye maya chesaave'. The music was redone for the Hindi version 'Ek Deewana Tha'. There is this song - 'Phoolon jaisi ladki' the original for which was the brilliant 'Kundana Bomma'. The music is exactly the same as the original. These are the lyrics for the first part of the Hindi version:

Aahaan... hai yeh kya?
Aankhein..
Aankhein yeh aankhein
Saagar se gehri yeh aankhien (hey!)
Jhookti (hey!)
Uth.ti (hey!)
Sharmeeli se aankhien, yeh aankhien
Sapno ki rajdhani
Saare... jugnu... taare
Inse hi jagmagana seekhe
Oh ho ho..

I don't understand Telugu so I am not sure if these words are a direct translation of the original. But honestly, these lyrics are pathetic. I make no claims to a poetic temperament but I can tell this is plain bad poetry. Especially the phrase "Sapnon ki rajdhani"!

Javed Akhtar, the lyricist, could definitely have done better. In fact, the album is touted as "An A. R. Rahman and Javed Akhtar musical"!

This is what typically happens when the lyrics are done after the music. And especially so when the music is redone in another language. So, while we see good lyrics for original music like 'Rockstar', we see disasters like this.

Do you keep your investigation reports electronically?

2012-01-16T06:16:00.000+05:30

When you're on dialysis, within a few months, you could build up a mountain full of investigation reports. Referring back to check how much your hemoglobin was a few months back could be an impossible task. So, here's a handy tip: start recording your investigation values on your computer!

Since you're reading this, you obviously use a computer. So, make better use of your computer. Record all your investigations on it. You could either use Excel or even better - a Google Doc spreadsheet so that you can access it from anywhere. There was a tool called Google Health which was discontinued on January 1 this year. There are other similar tools like Microsoft Health Vault and so on but I am not really sure how they are. Excel or a Google Spreadsheet are good enough for my needs. So, I will stick to that.

The next question is how do we maintain the vast range of blood tests that we usually get done?

I put the dates in the rows and the test names in the columns. But with the large number of tests, the sheet could become unreadable. So, I split the tests into the groups that are usually used - Complete Blood Picture (which includes things like Hemoglobin, RBC, WBC, platelets etc.), Biochemistry (Urea, Creatinine, Potassium, Calcium, Phosphorus etc.), Liver Function Tests (SGPT, SGOT etc.) and put each group in a single sheet. I also have a sheet for Others which includes all other tests that are not done frequently. That way all my blood tests will come into 5-6 sheets without any sheet becoming unreadable.

Now, looking for an older blood test value becomes very easy. Since all these tests will be entered in chronological order, you can also see trends and do cool looking graphs!

If you have an iPad, you could also sync this file with it and carry it along with you when you go to your nephrologist on your monthly review. And if he asks you, "Has your hemoglobin been this high ever?", you can quickly open that file and scan the sheet in a second and tell him, "No, doctor, never!" and then he might actually reduce your erythropoietin dose! So, moving to the electronic form of investigation record keeping can actually save you money!!!

(If you want a copy of the file I keep - without the data, simply the format - so that you can start entering your values immediately, send me an email and I will send the file to you.)

Three A. R. Rahman masterpieces

2012-01-15T06:10:00.000+05:30

Yes. Undoubtedly, A. R. Rahman is a genius. No two ways about it. His music is something else. His songs have an enchanting effect. Though they can take some time to grow on you, once you are hooked, you can never have enough.

Though many of Rahman's songs are amazing, I find that there are small pieces tucked away inside some songs that are the real gems. Here are three of my all time favorite pieces from his songs.

1. Kehna hi kya... (Bombay): Check out the part from 1:43 to 2:20.

2. Jiya jale... (Dil se): Check out the part from 2:55 to 3:30

3. Naadaan Parinday... (Rockstar): See from 4:06 to 4:32

Chennai Diary

2012-01-14T19:15:00.000+05:30

Last minute thingie

It was a last minute trip. Oh, how I hate these last minute trips! You always get high fares and you don't get the timings you want. And you invariably forget something. Honestly, I am quite a fussy guy. I need my stuff around me and feel quite lost without some of my things.

Anyway, I did not have a choice. The meeting had to happen. So, within a few hours of crystallizing the plan in my head, I found myself in a cab driven by an oblivious cabbie on the way to the Shamshabad Airport en route to Chennai.

Chennai

I find that people have extreme feelings for Chennai. Some love the city to the core. I know people who willingly give up high paying jobs just so they can settle down in Chennai. They simply swear by the city! And then there are the rest of them. They loathe the city. Everything about it. The food, the people, the place.

I am neutral. I have no problems with the people or the place. I love the food here (more about this in a bit). I was warned about the airport even though this was not the first time I had been there. I was told that a whole swarm of taxi drivers would accost me and ask me to take their taxi. No such thing happened because I took a pre-paid taxi. I guess it is an unfair bias after all.

Highway Robbery at Lunch

I reached my hotel at around 12 noon and checked in. I had a meeting scheduled at 1:30. That gave me enough time for lunch. I checked with the room boy where I could get a decent South Indian Thali. He told me to go to the Malgudi restaurant on the Ground Floor. I went there with high expectations. This was Chennai after all - the best place for a South Indian Thali. I asked for the menu. This turned out to be a branch of the Malgudi restaurant at Hyderabad - only much pricier. Disappointing! I looked for the Thali. All I got was some platters. Guess how much they were priced at? The cheapest was Rs. 1,300! WTF??? Thirteen hundred bucks for a thali?

I decided to go for a dosa with some Karnataka-origin curry (I forget the name). The dosa was good. I took one spoon of the curry and left the rest. The bill came to Rs. 641 - for a dosa and one spoon of curry!

There are idis and there are idlis

Many people in Andhra Pradesh are used to a variant of the idli rather than the idli itself. Most hotels do not use rice while making the idlis. They use rava. This makes good idlis too but the original is something else. In Chennai and the entire state of Tamil Nadu, the rice idli is the default. There is a difference. The rice idli, though a bit heavier to feel, is much lighter and better to taste.

When I come to Chennai, I always make it a point to visit the Murugan Idli Shop. They started off with one outlet in T Nagar, close to Vani Mahal and have now expanded to 15 outlets including 2 in Singapore! They serve out-of-the-world rice idlis. The other fare is also good. I was told not to miss the uttapam. I tried it. Good. But not as good as the idlis.

The important thing to know is what the best thing about a place is and then focus only on that. When I go to Poorna Tiffins in Hyderabad, I only eat idlis. Nothing else. So (I must) let it be with Murugan.

On an interesting note, a relative of mine, also an idli aficionado, suggested I try the Idli Vilas, a new joint opened right outside Savera Hotel, where I was staying. I kept space for a plate of idli and checked Idli Vilas on my way back from Murugan. The idli was good. But not as good as Murugan.

All in all, it was a great trip. Thanks in no small measure to the idlis!

(This post is inspired by a similar series that appears on the last page of 'Outlook' - an Indian weekly.)

The oblivious cabbie

2012-01-13T21:19:00.000+05:30

I was on a cab this morning. After a few minutes, the cab driver struck up a conversation. He asked me what I did in Hyderabad. I told him that I work in a dialysis center. (He spoke in Hindi. I am translating here.) "Hmmm, dialysis? Kidney stones related huh?" I explained that kidney stones were different and that dialysis had to be done when someone's kidneys failed. Dialysis was needed to clean the blood and remove excess toxins and water.

I wondered how oblivious this guy was to what his kidneys did. They worked every instant of the day, tirelessly cleaning the blood. And he was not even aware of their existence. Well, to be fair to him, we are all like that. I had no clue that there was a word like 'dialysis' until I had to get onto it.

"There are many dialysis centers in Hyderabad, na?"

"Yes, most big hospitals have one. But ours are different. We do only dialysis."

"How much does it cost?"

"Roughly Rs. 1,500."

"Oh, that's it? Quite cheap!"

That was one thing that dialysis has never been accused of! "Quite cheap"! Everyone complains about the price of dialysis. You have got your frequency wrong, dear, I mentally addressed him.

"Thrice a week"

He turned his head towards me in disbelief. "Thrice a week?"

I gestured to him to turn his head to the front. He was driving, after all!

"So, Rs. 4,500 a week?!"

"Yes"

"I thought it just had to be done once!"

"Oh, how I wish that were true!", I thought to myself!

I refrained from telling him that I was on dialysis. I wanted to get to my destination.

PD first

2012-01-10T22:46:00.000+05:30

I have a huge bias for PD and my six years on PD were my best among those with CKD. PD, I feel offers the best quality of life among all dialysis modalities. The few diet and fluid restrictions, the possibility of unhindered travel and not having to go to the hospital thrice a week all make this modality very appealing.

The nephrologist community has historically been step-motherly towards this therapy. There are multiple reasons for this. Some of these are due to the doctors, some due to the patients. From a patient's perspective, introducing PD first rather than hemodialysis allows patients to settle into a therapy that is less violent, offers more independence and fewer problems. The switch to hemodialysis, from then on, would pose the same challenges as does the switch to PD from hemodialysis currently.

Dr. Kenar Jhaveri of the famous Nephron Power blog interviewed Dr. Arshia Ghaffari from the Keck School of Medicine for eAJKD, the oficial blog of AJKD. Dr. Ghaffari recently concluded a study where PD was presented as an 'urgent start' modality - where PD is the dialysis modality used without any prior preparation for dialysis. The results were great.

This initiative is very welcome. PD as a successful first line of therapy and that too without any prior preparation should at the very least, reduce an excuse from the list of excuses for not recommending this modality.

Fresenius must explain

2012-01-09T06:00:00.000+05:30

In a very concerning post, Dr. Peter Laird says, "The jury is still out on whether FMC bought these companies to expand home dialysis options or instead to stifle competition with their own dialysis oligarchy. The only proof of the former will be the actual release of sorbent technology for clinical testing and rapid penetration of the home dialysis market. Until then, all we can ask is where have they gone for we know that the good, they die young."

'These companies' refers to Renal Solutions and XCorporeal, both of which had portable home hemodialysis machines, one almost ready to market and the other ready for clinical trials. Fresenius Medical Care bought both these companies. We have not heard anything about these machines since the acquisitions.

I will really be happy if Fresenius proves us all wrong and releases home hemodialysis solutions better and more accessible than those available currently. I have been using a Fresenius machine for almost six years now and have received excellent support from the company on everything. So, I really have no personal reason to complain about them.

However, this is a serious concern and it would be great if Fresenius explained where they are with these machines or a suitable portable home hemodialysis solution. I somehow don't believe that home hemodialysis will ever cannibalize in-center dialysis all that much. Very few people will ever switch to home hemo despite all the advantages.

Why the 'Kt/V deception' is a good start for India

2012-01-04T08:02:00.002+05:30

Dr. Peter Laird, in a great post at his blog, "HemoDoc, From Doctor to Patient", says "Each month, dialysis patients anxiously await the results of blood tests. Each month, the renal staff and physicians pronounce their dialysis adequate by a magical wand without dimensions called the Kt/V. Yet, each month, these same patients die at a rate 2.5 times that of patients undergoing chronic hemodialysis in Japan."

Entirely true Dr. Laird. This is entirely true for the United States and countries that are using at least Kt/V to determine adequacy. The main argument against Kt/V is that it uses urea as the molecule to determine clearance and from this, the measure of adequacy.

While urea is one of the molecules being removed by dialysis, it is by no means, a representative molecule that actually determines that the dialysis is adequate. There are a number of other molecules that dialysis removes and which have a different rate of removal than urea. Urea is a much smaller molecule than many other molecules that are being removed and is therefore, removed much more easily than these other molecules. So, to assume that if you've removed enough urea, you have had adequate dialysis is to be too optimistic since dialysis is actually much more than removing only urea.

There are a number of other measures that have been suggested by a number of different experts. Many of them are much better than Kt/V to determine adequacy. These are all excellent alternatives to Kt/V. Not for India however.

Let me explain.

Most of these indices require a host of blood tests to be done every month or every six weeks. Take Dr. John Agar's Good Dialysis Index. It is one of the best that I have seen among the newer adequacy measures. However, it needs the Serum Iron, Transferrin Saturation, Serum Calcium, Serum Phosphorus, Serum PTH Intact, Albumin and C Reactive Protein to be checked every six weeks.

Yes, I can almost hear all Indian readers of this post laugh out loud!

Many patients resist any blood tests to be done every month. Some will agree, but only after a howl of protest. I don't blame them. Most countries that get these kinds of blood tests done are from countries where the patients do not have to pay for them out of pocket. So, they would hardly have a problem with that. In India, where costs are the biggest problem since most patients pay out of pocket, how can we expect patients to get the battery of tests required to be able to calculate these indices?

Coming back to Kt/V. Yes, it is a flawed measure. But it is a measure nevertheless. In fact what the experts ask us to do (including Dr. John Agar) is to not rely only on the Kt/V. But they would never say do not measure the Kt/V.

When I joined the dialysis industry as a professional and started looking at dialysis from the blunt side of the needle rather than the sharp side I was used to all these years, I found a shockingly great apathy for adequacy. No one did Kt/V! It was mostly some theoretical concept in the text books. Of course, the industry had a reasonable argument to back this. Patients did not want to do tests. Patients did not want to increase their monthly financial burden.

But a start must be made somewhere. We need to move towards adequate dialysis for patients. To be able to do that we must, first of all, know for sure, what kind of dialysis they are getting. I find that Kt/V is a good start. Gradually we must combine it with other measures to come up with our own index. But Kt/V must be measured. It will at least tell us those patients in whom even the urea is not being adequately removed and I suspect that there must be quite a bunch.

Two nights on, one night off?

2012-01-03T07:30:00.000+05:30

That is Bill Peckham's dialysis regimen. What it basically means is you dialyze two nights and then take the next night off. And then you dialyze the next two nights and take the next night off. And so on. This of course applies only to those on nocturnal dialysis.

I started off my nocturnal dialysis by dialyzing six nights a week. Sundays were always off. Those, however, were the days of huge fluid weight gains and there would also be days when I put on 4-5 kgs between two consecutive days - that is 4-5 liters of fluid consumed in less than 16 hours! Sundays would become difficult then since I would have to consciously restrict my fluid intake. And I absolutely loathed that.

So, I decided to do true daily nocturnal dialysis. No Sunday off as well. On Sundays, though, since the technician would not come, I would do everything from start to finish. This got to me quickly and reverted to six nights a week.

Recently, I started getting fed up with dialysis. I decided to take an extra night off. So, I took Thursdays off in addition to Sundays.

Now I find I find it difficult to do more than two nights in a row. The quality of my sleep on dialysis is not great. So, more than two nights on dialysis is a little frustrating. I am thinking I should also switch to Bill's 'two nights on, one night off' regiment. Heck, if it's good enough for Bill, it's good enough for me!

How Facebook's tagging ruined my new year's eve

2012-01-01T11:30:00.000+05:30

So there I was happily partying away last night when something terrible happened.

A friend tagged me on his Facebook picture. This wasn't a real picture as in 'real picture' but a collage of motley pictures which did not even have me in them. But my enterprising friend decide he wanted to show off his artwork (done on Photoshop?) to the rest of the world. So, he uploaded the pic to Facebook and tagged every single friend on his Facebook to it.

Chaos followed.

Now it was New Year's eve. So, many enterprising friends of this friend of mine decided they have to appreciate my friend's creative collaging skills. So, many of them started commenting on them. Now, because I, unfortunately, was also tagged in that pic that did not even have me, started receiving an email every time anyone commented on that picture! And I had my phone with me on which I would get every email and I also had the Facebook app with push notifications enabled on it so every time someone commented on that I got a separate notification as well.

By 11:30 p.m., I had received like a gazillion emails and another gazillion notifications. It was New Year's Eve, after all and the festive spirit was at its peak.

I couldn't take it any longer. I ran to my laptop and launched Facebook on the browser and went to the pic and 'unsubscribed' to the pic. I felt relieved.

But it was not to be. The emails and the notifications continued.

This morning I went back to the pic on Facebook and realized that because I was tagged I would receive the comments irrespective of whether I was subscribed or not. Then I had an aha moment.

I had to remove the tag. 'Na rahega tag, na bajenge comments.'

I went and successfully de-tagged myself from that pic. Peace ensued.

Happy new year to you!

Can I please have my news channel back?

2011-12-29T06:00:00.000+05:30

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?

Trying to figure out the Effigent bond

2011-12-27T21:40:00.000+05:30

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:

Steve Jobs - the book

2011-12-22T08:14:00.000+05:30

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.

Wanted: An Anna Hazare for the medical industry

2011-12-21T05:16:00.000+05:30

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.

The problem with monks who sell Ferraris

2011-12-20T05:43:00.000+05:30

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.

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

2011-12-19T05:23:00.000+05:30

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.

The Second Annual Ex Effigent Reunion

2011-12-18T10:30:00.000+05:30

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!)

Try not to change your nephrologist

2011-12-15T08:24:00.000+05:30

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.

Wait!

2011-12-13T21:19:00.000+05:30

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!

ISN Conference at Hyderabad

2011-12-12T21:55:00.001+05:30

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.

In search of the perfect Baklava

2011-12-11T16:14:00.000+05:30

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.

Hitler gets angry about 'Kolaveri di'

2011-12-08T06:16:00.000+05:30

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

Bone pain rears its head again

2011-12-07T06:47:00.000+05:30

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.

Unfairly condemned Creatinine

2011-12-05T06:29:00.000+05:30

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.

One way not to proselytize

2011-12-04T06:28:00.000+05:30

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.

Overheard at the dialysis unit

2011-11-30T20:48:00.000+05:30

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.

Pulling off more than I can handle

2011-11-27T07:02:00.003+05:30

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.

The human body's alerting mechanism

2011-11-26T07:02:00.000+05:30

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.

In search of the perfect Sitafal ice cream

2011-11-20T21:26:00.000+05:30

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.

Dialyzing our elderly

2011-11-19T22:38:00.001+05:30

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.

Have Anna Hazare and friends lost their way?

2011-11-15T19:43:00.000+05:30

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!

Yesterday, I did the unthinkable

2011-11-11T21:24:00.000+05:30

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!

Having standards of care in dialysis units

2011-11-09T06:22:00.000+05:30

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.

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

2011-11-08T08:17:00.000+05:30

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!

Moving from a jugular to a fistula: mixed feelings

2011-11-07T07:36:00.000+05:30

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!

Blood transfusions - very different from the Bollywood version

2011-11-03T22:19:00.001+05:30

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.

Update

2011-10-27T07:10:00.000+05:30

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!

Adjusted dosage of drugs for those on nocturnal dialysis?

2011-10-19T20:49:00.000+05:30

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.

There are cough syrups and there are cough syrups

2011-10-18T20:28:00.000+05:30

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.

Yours truly on Nephron Power!

2011-10-17T19:59:00.000+05:30

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!

Six times, Seven times, Five times

2011-10-08T20:05:00.000+05:30

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.

Farewell Steve Jobs

2011-10-06T06:48:00.000+05:30

"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

Spare a thought for the caregiver

2011-10-04T22:34:00.000+05:30

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.

The software world loses a great programmer...

2011-10-02T07:37:00.000+05:30

... 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!

Birthday Videos

2011-10-01T20:35:00.000+05:30

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.

The 48 hour birthday

2011-09-30T21:43:00.000+05:30

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!

There is a solution for Restless Legs Syndrome

2011-09-27T20:28:00.000+05:30

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.

Informative brochure released by the aHUS Foundation

2011-09-26T20:09:00.000+05:30

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.

How RSS feeds dry up our lives

2011-09-25T18:58:00.002+05:30

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?

FDA approves Soliris (Eculizumab) for atypical HUS

2011-09-24T18:54:00.000+05:30

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!

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

2011-09-18T07:09:00.000+05:30

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?

Billing at hospitals

2011-09-12T07:28:00.001+05:30

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.

Callous hospitals

2011-09-09T06:45:00.000+05:30

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?

Beware of Reliance Big Adda - they're huge cheats

2011-09-04T21:30:00.000+05:30

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!

Anna's three conditions must be met

2011-08-25T22:14:00.000+05:30

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.

I might as well give my 2 cents on Anna

2011-08-20T22:57:00.000+05:30

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.

My changing attitude towards dialysis

2011-08-18T19:44:00.000+05:30

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.

The beautiful genome

2011-08-13T20:04:00.000+05:30

Have you ever thought, how, when a surgeon opens up a patient on the operating table, (mostly!) he finds everything in the right place? The kidneys are where they are supposed to be, the portal vein is where he expects it to be. If he wants to take a jab at the liver, he will know exactly which area he has to look in.

All this, despite not having opened that patient ever before. Well, he probably would have seen scans but heck, those too are mostly on expected lines!

How is every human so alike? Well, externally humans are very different but inside the body, physically, everything is so similar! Normal spleens are about the same size, shape and texture. Everyone has bean shaped kidneys. Almost everyone has two.

Medical science is entirely based on the fact that humans will have mostly very similar insides which will behave very similarly under similar circumstances.

I often wonder, with amazement, how experienced surgeons know their way inside a human body; how skillfully they stitch together veins and arteries from one place into another; how, during a transplant, everything works with clock-like precision. Put the kidney there and connect up all the veins and arteries and within a jiffy you see urine being produced! And all this, despite the surgeon not ever having seen the insides of that patient before!

I find all this totally incredible!

All thanks to the genome! The genome for a species dictates all this, I guess. Everything is encoded in those tiny little structures! Isn't it amazing that those sequences of alphabets should dictate such complex structures, such complex chemical reactions that are happening every second inside our bodies, we being blissfully unaware all the time!

I know you might think I am growing a little crazy here but stop and think for a moment of how all this magically happens and you will be amazed!

Missed diagnoses

2011-08-12T22:14:00.000+05:30

Medicine is not an exact science. A lot of it is subjective. Doctors have to rely a lot on their experience and the results they have had with other patients. Lab test results rarely tell the entire story. It is not a set of mathematical equations that they can follow to get the desired results.

We often blame doctors for missed diagnoses. "Why didn't they detect this earlier?"

It is easy for us to say this in hindsight. But at the time of diagnoses, a multitude of factors go into making a decision. It is not at all easy for doctors. They have to strike a fine balance between making a diagnosis based on the available facts and prescribing too many tests that may help in arriving at a better, more informed decision.

Another major problem is the number of patients doctors in India see. Most doctors that I go to are so busy that I have to often wait for a long time to get to see the doctor. And after all the wait, you get very little time with them. With all this, how much time would they have to read up or research on your particular case?

I have realized these problems and changed my attitude towards doctors. Even though an important diagnosis was missed in my case as well.

A tribute to Pujya Panyas Chandrashekharvijayji

2011-08-09T21:24:00.000+05:30

Param Pujya Panyas Chandrashekharvijayji

Param Pujya Panyas Chandrashekharvijayji attained kaal-dharma (passed away) yesterday at Ahmedabad. He was a Jain monk, an inspiration and idol to many Jains throughout the country. My entire religious thinking has largely been shaped by his books and periodicals which I have read over the years.

I was introduced to the persona of the Panyasji maharaj by my grandmother, Sarojben, who was an ardent devotee. I was thoroughly impressed by his unflinching loyalty to the agams (the Jain religious scriptures). He strongly believed that they were the ultimate truth and followed the tenets to the letter.

While many fellow sadhus today have given in to using modern amenities, few sadhus and sadhvis like him strictly followed the stringent rules of the Jain monastic order. Till the very end, he did not use vehicles or electricity and lived a frugal life.

He was one of the three famous disciples of one of the greatest stars to ever shine in the Jain firmament, Param Pujya Acharya Bhagvant Shrimadvijay Premsuri Maharaj. The other two disciples who passed away a few years back are Param Pujya Acharya Bhagwant Ramsuri Maharaj and Param Pujya Panyas Bhuvanbhanuvijayji Maharaj. These are all what my grandmother calls, "Chotha aara ni vangi" - basically people who actually belong to previous, purer eons but somehow have been born in this age! Very true indeed!

Chandrashekharvijayji will be remembered most for the three Tapovans he set up. The Tapovans are schools that teach a blend of modern and religious curriculums. The students are true all-rounders and are encouraged to imbibe values of strong loyalty to the nation, purity of thought and action and care for the environment and the less privileged. His focus was entirely on the younger generation who he believed must be moulded in the right manner to build a stronger, more ethical nation.

His monthly, 'Muktidoot' , was a phenomenal success with thousands of Jains (including I) totally hooked to it. His style of writing and complete dedication to the agams made many Jains swear by his word. His life, like many others before him, was not devoid of controversy. The controversies could not tarnish his image however and till the very end he was highly regarded by all Jain sects.

I had the good fortune of obtaining his darshan twice, both times, coincidentally at the Sabarmati Tapovan.

With his passing, Jains all over have lost the beacon of light, the torchbearer of the sangh and the voice of the agams forever.

What message would I like to give people on dialysis?

2011-08-08T19:18:00.001+05:30

Yesterday, the Welfare Association of Kidney Patients, Hyderabad organized a one day picnic to Nagarjunasagar for kidney patients of the city. It was an excellent initiative that aimed to create awareness of kidney disease and the risk factors so that people could avoid it in the first place. The group planned to stop at various villages and towns on the way to Nagarjunasagar and distribute pamphlets and explain to the general public about this disease and how it can be avoided.

Mamatha, who spearheads this association is on dialysis for the last 12 years. She is a highly energetic lady with great passion for this cause. She called me to accompany the group as well but I could not go due to some other commitments. I plan to go the next time for sure.

Before the flagging off, there was a small gathering where the Commissioner, Information and Public Relations, Govt. of Andhra Pradesh, Mr. Venkatesam, spoke to the gathering. I was asked to speak as well. I was wondering what to say. I ended up making an appeal to the Commissioner to abolish import duties on life saving drugs and to increase the exemption limit under section 80 DDB that allows people with chronic conditions to claim an exemption up to Rs. 50,000 per year. This amount is a bloody joke. I spend more than that in two months on my medical expenses.

Looking back, however, I feel I should have addressed the dialysis patients rather than the Commissioner. I am sure nothing is going to happen on the government front for decades. However, a small message to dialysis patients could have set them thinking about how they can lead normal lives on dialysis.

What I should have said was something on these lines:

There are three things a dialysis patient can do to lead a life as close to normal as possible:

1. Get as much dialysis as your money permits: With dialysis, without doubt, more the better. In fact, co-incidentally, Dr. Ashwin Aiyangar has blogged about this recently. So, let only your financial resources limit the amount of dialysis. The more dialysis you get, the better your blood counts, the less severe your co-morbidities, the more active your life.

2. Exercise: Even if it means just a little bit. But move about. Do as much as your physical condition permits you. Of course, talk to your doctor first. But even a little exercise helps not only your body but your mind as well.

3. Work: If you are able to, work. Even if it is only part time. For one, it takes your mind off the medical problem. It gives you tremendous amount of self-confidence. Your sense of self-worth improves. And, heck, whatever money you make can help you pay your dialysis bills!

Processions that disrupt traffic

2011-08-07T11:18:00.000+05:30

I was on the way back from Hyderabad to Secunderabad. On the way, suddenly I noticed a huge traffic jam ahead of me somewhere in the middle of the Tank Bund road. I could not avoid it since I was already on the Tank Bund road. The traffic was moving at a snail's pace. I was very surprised since it was a Sunday. As the traffic inched its way ahead I noticed a huge group of people wearing saffron clothes with flags and carrying banners of some organization. The group occupied nearly half the width of the road and the entire traffic was held up for at least 45 minutes.

I muttered a curse under my breath. What business had this group, however noble its cause, to hold up traffic in this way? What if someone had an emergency to attend to? What would anyone do in these circumstances?

Then suddenly, I remembered that my own religion organized such processions every year! I was wondering if the objectives behind such processions were really being met. Do people really get impressed by such processions or curse the religion and its followers in the procession?

I have often heard arguments in favor of this procession that go, "All religions do it. If they can do it, so can we!" I usually give up right there.

Maybe what should be done is have such processions in huge grounds - maybe the Exhibition Ground or Parade Grounds or something similar. That way the procession can also be done and people are also not inconvenienced. But, some would argue, that the whole purpose of the procession is to show the people. I am not sure I agree with that.

A visit to the post office

2011-08-03T21:07:00.000+05:30

I got an email from LIC India one day saying that they sent a cheque to me (pertaining to a policy that my parents had taken for me) quite a while back and it had not been encashed. They wanted to check if I received it or not. As it turns out, my address in their records was an old one and that is why I did not get the cheque.

The email asked me to send the new address if it had changed which I promptly did. I got a response confirming receipt of the new address and that I should contact a certain person with such and such telephone number in case I did not receive the cheque after ten days.

After ten days I contacted the person and asked him about the cheque. He said it had been sent by Registered Post and that I should get it in the next 2-3 days. I waited for 5 days. No sign of the cheque. I called the guy again. He was surprised that I had not yet got it. He asked me to call back the next day and he would enquire about it.

The next day when I reached home, my cook told me that the post man had come home with a registered post cover and refused to give it to her. He insisted that only I collect it. He left a message asking me to come to the post office to collect it. No mention of which post office. No mention of who to meet and when. Just come to the post office and collect it.

I was lost. I had no idea what to do. The cheque amount was non-insignificant. I had to do something.

I mustered all the courage I could and went to the General Post Office at Rashtrapathi Road in Secunderabad. The building looks quite majestic from outside. Only when you go in do you realize that it is a fit case for the saying, "Paina pataram, lona lotaram"!

There is an Enquiry counter inside. I went up to it and asked the person behind the desk where I could pick up registered post? Without as much as a look back, he said "Go inside". Well, wasn't I already? I figured he meant really deep inside the maze that the office was. There some counters with monstrous lines in the front with an almost hidden entrance to the "inside".

I went through. There were dozens of tables with people behind them animatedly scribbling away on papers with dog ears. Not one computer in sight! I had to ask random people on the way where the Registered Post delivery was made. After listening to contradictory responses and going back and forth "inside" and "outside", I finally met one man, deep inside, that asked me, what I thought was the first relevant question in my adventure.

"Which area do you live in?"

"Balamrai", I responded.

"Oh, vaadu elipoindu", the guy responded, adding that the concerned person left at 11 in the morning. That was a first, I thought to myself. I have heard of truant and lazy government servants. This took the cake. I realized later, however, that I had to basically meet the same postman that delivers letters to my house and that he is usually there in the post office from 8 a.m. to 11 a.m. and I had to come at that time the following day if I had any hope of getting my cheque.

Cut to the following day. I confidently walked to the same room and asked a totally random person in there where I could colect Registered Post for Balamrai. "No. 30", he responded. I asked around where No. 30 was and was directed to a post man sitting on a desk that had a small label that said "30" inside a shelf on the desk. So much for "No. 30"!

I asked him about the cover and he promptly pulled it out and made me sign the Receipt paper. To his credit, he did not ask me for a tip. I was totally shocked!

A few questions still remain unanswered in my mind:

1. How did any random person I asked about where I could collect my cover have an answer? How come no one said I don't know?

2. Why can't they have one section for uncollected registered post with a big sign board that says so where anyone can go and collect their post?

3. Why didn't the postman tell my cook that I had to come to the GPO at R.P. Road between 8 a.m. and 11 a.m.?

4. Why does LIC have to send cheques by registered post when almost the whole world uses private courier companies to deliver cheques?

5. In fact, why can't LIC have a direct credit to bank account option?

6. And finally, why, oh why, did my parents take an LIC policy for me?

My AJKD article now available as a podcast!

2011-08-01T14:31:00.005+05:30

My AJKD article, "Taking the Uncharted Path" is now available as a podcast! You can find the podcast here.

Thanks to Dr. Sidharth Sethi for posting about the podcast on his website and also letting me know about it. I had no clue! By the way, thanks also Dr. Sethi for complimenting my voice. And you haven't even heard me sing! Hahahaha!

The team's contribution to a company's identity

2011-07-29T21:04:00.000+05:30

I have been a part of two startups. Effigent and NephroPlus. I have seen both these companies from scratch. There is one thing that I have seen in both. The identity of the company is often shaped by the first few employees in the company.

I find this to be universally true because the management can do only so much in shaping the attitude and behavior of the team. Though the overall guidelines can be given, values and missions stated, unless the first set of hires really believes in them and adopts them genuinely, it is very difficult for the rest of the hires to do so.

That is why the first set of hires is so important!

At Effigent, we were really lucky to get someone called Neelapalla Srinivas as one of the first few employees. He was an amazing guy. Technically solid. Amazing attitude. He would help the juniors come up to speed, spend time with them, coach them. Not only did this help the juniors in grasping programming concepts the right way but it also encouraged them to help others at work. This attitude in everyone was one of the most liked by the Effigent team. The folks that joined later carried on this legacy much after Srinivas left.

At NephroPlus, Sara the nurse that was hired in the early stages set the standards in nursing care at NephroPlus. The NephroPlus standard of care was informally institutionalized by her. She walks out all the patients after dialysis holding their bags and seeing them off. This is one of the many things that patients love at NephroPlus - personalized, homely care. Today, as Sara moves on to bigger challenges, her impact will not be lost. Nurses after her must adhere to the same standards that have been set.

Fortunately the managements of both these companies strongly believed in the values that the first few employees were torch bearers of! And the companies were fortunate enough to get these people to actually help realize their dreams.

Zindagi na milegi dobara - must watch

2011-07-25T19:39:00.000+05:30

I watched Zindagi na milegi dobara the day after Delhi Belly. What a change! Maybe I liked it so much because I watched it immediately after such a bakwaas movie like Delhi Belly.

I won't go into the story and performances. You can find that anywhere. I will tell you what I liked about the movie.

Basically, there are two messages for me from this movie. One is Hrithik's story. He is fully engrossed in his work. His life is pretty much calls, meetings, customers, money, money and more money. Many of us get into this mode of making work our entire life. We don't realize that work is only a part of life and not life itself. Hrithik's character understands this as the movie progresses and eventually breaks free.

The other part is where the characters face their deepest fears head on. It does seem too simplistic and unrealistic at times. But then this is a movie, not a news show. Let's not forget that. The key is to face our fears. It is easier said than done. But once we do this, it does not seem that difficult at all. This is something worth hanging on to.

The music is really good. The Senorita song is excellent. But then, I did not want to do a review!

If you haven't watched this movie yet, go watch it! You will love it!

Started off on Chloroquine

2011-07-24T14:37:00.000+05:30

I have been put on Chloroquine to treat my suspected Porphyria Cutanea Tarda.

This is purely an empirical treatment which means treating based on symptoms and not any confirmation of the diagnosis. So, they can confirm the diagnosis using a test of the urine where they test for the presence of Uroporphyrins in the urine but since I am anuric that is ruled out. The blood can be tested for this but no one does it in India apparently.

The other option is a biopsy of the skin where they take a small bit of skin and then analyse it for signs of this disease. However skin biopsies can only be useful if done on a blister that has actually formed and for some reason, my dermatologist says it can be done only on blisters that form on the back of my hand or feet and all the blisters that I get are on the fingers and toes! Also, he says, biopsies are often inconclusive.

Since the symptoms are all in tune with Porphyria Cutanea Tarda, we are going ahead, empirically if you will, and treating it.

Chloroquine, most famously used for treating malaria is supposed to be effective for this disease as well if given over long periods. So, I've been asked to take it for a month and watch out for any rashes or change in vision.

Ha! That's the beauty of medicines these days. They will cure you of one condition but can give you another!

Dr. Ashwin Aiyangar, Nephrologist is in Blogosphere!

2011-07-21T19:26:00.000+05:30

A nephrologist I hold in really high esteem, Dr. Ashwin K. Aiyangar now has a blog. Its called Kidney Pulse.

From the blog: "This blog is an attempt to try to help those millions who may be patients suffering from the disease, their relatives, friends and well wishers, or just someone who wishes to know about the kidney and wants to contribute .... perhaps aiming to make this so-called dreadful disease not-so-dreadful anymore."

An excellent start I must say!

Welcome Dr. Ashwin!

Yes, crucify me, but I hated Delhi Belly!

2011-07-16T22:27:00.000+05:30

First things first. In a twist to a famous quote, "You may not agree with what I say but you must fight for my right to say it!"

So, you may have liked the movie but I didn't. Simple. And I will not deny that I thought the movie was disgusting. However much you thought it was hilarious.

I don't like movies that show dirty, shabby houses, toilets, flushes falling on people and such other gross things.

For most of the movie, one of the main characters is struck by diarrhea. Hasn't he heard of antibiotics and other astringents? Worse, hasn't his doctor? Even if they haven't, why take the camera behind him whenever he has to relieve himself.

The worst part of the movie was a scene where they actually show someone pouring out liquid human poop (purportedly, a sample given for a test to a lab). I almost threw up right there. I closed my eyes after one single frame to prevent this.

This, in the name of entertainment? And you have hordes of people loving the movie!

Well, I don't hold any grudges against those who liked the movie. To each, his own! But I found it horrible. Utterly disgusting. A pathetic attempt at humor.

My 14th dialyversary!

2011-07-15T18:18:00.000+05:30

Was yesterday, 14th of July 2011.

What the hell is a dialyversary? Well, my anniversary of getting onto dialysis!

Exactly fourteen years back, I was hit with kidney disease. 14th of July, 1997. What a ride it has been! And no, I am not depressed at all. Would I have liked it some other way? You bet! But am I going to sit and cry that my life has been snatched away from me? No way!

It is true that kidney disease changed the course of my life in unimaginable ways. When I was diagnosed, I had no clue about what kidneys did or what happened when they failed. I had never heard of the word 'dialysis' that was going to rule a large part of the rest of my life.

A lot of people commend me on how brave I am. I honestly don't understand that at all. What makes me brave? They conjure up these fancy images of me fighting this disease and all that. For me, giving up is never an option. Yes, once in a way, the thought of ending it all does cross my mind - much rarer these days though - but the thought never lasts too long.

One very important factor in my positive attitude has been work. I have, for the most part, been doing some very interesting work. Even though I never put in long hours at work, it kept me busy enough not to have time to think about the disease itself. Dealing with the disease was one of many things I had to do. A typical to-do list during my Effigent days would read something like this:

- Call meeting of VCA developers about Sync issue
- Talk to Testing team about last build
- Follow up with Religare about PTH report and then meet Dr. Girish Narayen about it
- Discuss with HR about status of new hiring

You get the picture! It is that simple.

The secret to dealing with this disease is work. Keep yourself busy. Yes, that is my mantra!

Earlier it was Effigent. Then Grene. Now NephroPlus. I work full time and that is all there is to my bravery/positive attitude/whatever.

NephroPlus brings dialysis to Mahabubnagar

2011-07-14T18:49:00.000+05:30

This morning, the third NephroPlus center was officially inaugurated. This is a very significant milestone in many ways.

For one, there was no dialysis facility in Mahabubnagar. Dialysis patients currently travel about 100 kilometers each way to Hyderabad to get dialysis two to three times a week. It takes a good two hours to travel one way. So four hours for traveling and at least five hours for the four hour dialysis session itself and about half an hour before and after. The whole day gone. For the patient and an attender. Twice or thrice a week. People we talked to said that they were spending more on travel than on the dialysis session itself.

No more of that!

People can literally hop, skip and jump into the swanky dialysis center that has been built inside Mahabubnagar's S. V. S. Medical College and Hospital. And you're not going to believe the last part - they can get dialysis for free since the unit is going to be shortly empaneled under the Andhra Pradesh Government's revolutionary Aarogyasri scheme!

This inauguration is significant in some other ways as well. This is NephroPlus' first dialysis center outside Hyderabad and its first inside a hospital. The earlier two units were inside Hyderabad city and were standalone centers. This will bring on a lot more challenges. We are, of course, all looking forward to this new experience!

Why Potassium and not Phosphorus is the bogey for Indian dialyzors

2011-07-13T18:26:00.000+05:30

When I first started going over posts in forums meant for people on dialysis (most people were from the US), I would find so many mentions of Phosphorus. People would crib about having to take binders. They would worry about the Phosphorus content of the different foods they would take.

Surprisingly, I never heard as much a fuss being made about Phosphorus among Indian doctors, dietitians and patients. Here Potassium was the popular word! Be careful about your Potassium. Don't eat fruits. Phosphorus was mentioned only in passing.

I often wondered about the difference in attitude in these two populations.

Could it be chiefly due to the difference in diet?

Indians, probably, on an average eat much less meat than Americans. Indians, probably, also consume much less dairy produce (milk, cheese, butter etc.) than Americans. These two are huge sources of Phosphorus. Another source of Phosphorus is colas and other aerated drinks. Preserved food also has much higher Phosphorus than fresh food because many of the preservatives have Phosphorus. Americans, again, consume more of preserved food and aerated drinks than Indians.

A senior nephrologist in Hyderabad once said that the problem with the diet in the average Indian dialysis patient is one of too little, not one of too much! Some dialysis patients I see are actually malnourished. They barely eat anything. In most of these people, Phosphorus is usually on the lower side of normal. At one point the nephrologist just tells their families not to restrict anything!

Potassium is a more of a problem even in the healthier patients. Could it be due to the propensity of Indian patients to eat more of vegetables and fruits? Most likely. There not being any Potassium binders (not here, not in the US) adds to this problem and the perception of it being a problem.

When I was on thrice a week dialysis too, Potassium was my big problem. I didn't even think about Phosphorus! These days, of course, I am on Phosphorus supplements because my Phosphorus is too low!

Great resource for dialysis patients - Sodium and Potassium values in Indian foods!

2011-07-11T12:00:00.000+05:30

Potassium is a huge problem for dialysis patients! Almost anything that tastes good has Potassium! Mangoes, bananas, coconut, chikoos!

And all dialysis patients know that they have to avoid anything containing high Potassium. "You may die if your potassium goes too high!" "Your heart will stop working if your Potassium goes high!" "Avoid high Potassium foods like the plague!"

So, that begs the questions, "Can I not have any fruit at all?", "Mangoes, ok, I will not touch them. What are the other things I need to be careful about?" "Can I not have one banana just before dialysis?"

There are sites on the internet that have a lot of information on the content of Potassium in many foods. However, most are based on the US foods. Many of those foods are not even available in India. Nectarines for example! And then there are many Indian foods which are not listed in those sites. Also, many foods are grown differently in the US than in India and the potassium content is different in both the versions! Oranges for example.

All these issues have now been resolved!

Just visit this link on the Dialysis in India website (Disclaimer: that site is also maintained by me!). It has the Potassium, Sodium (and many other minerals) content of a huge list of Indian foods!

So, now you can refer to this list before restricting your food! Enjoy!

Plasmapheresis versus Eculizumab versus Status Quo

2011-07-09T22:44:00.000+05:30

So, I have this rare disease called Atypical Hemolytic Uremic Syndrome (aHUS). There are probably a handful of adults in the world that have it. In this disease there is uncontrolled activation of the alternate complement pathway (alternate mechanism of protecting the body against foreign invasions, so to speak).

It has been proved that I have a genetic defect in me where two exons of the CFH gene are replaced by two exons from another gene called the CFHR1. This is called the CFH/CFHR1 hybrid gene. This genetic defect makes me vulnerable to Hemolytic Uremic Syndrome (HUS). The vaccinations that I took in July 1997 triggered this disease.

Until recently, Plasmapheresis was the first line of therapy for HUS. What Plasmapheresis basically does in HUS is it removes the 'bad' Factor H and replaces it with 'good' Factor H. This may not be effective always. This was done when I presented initially with this disease. However, more of Plasma Infusion was performed and little Plasmapheresis was done.

When I got a transplant in November 1998 and HUS recurred, Plasmapheresis was NOT done. This, I feel, in hindsight, was a grave mistake. Not that I blame anyone for this but this would have given us a shot at saving the transplant. I had no clue at that time about these things.

Now, after 14 years with this disease, the co-morbidities of long term kidney disease are catching up with me. My gut feeling is I will need a transplant sooner rather than later. I have a few options at this stage:

- Transplant with Eculizumab
- Transplant with Plasmapheresis
- Status Quo

A transplant with Eculizumab has the best likelihood of success. Most people who have taken Eculizumab (about a dozen have probably had transplants around the world with Eculizumab) have not had any recurrence of aHUS. The problem? Not yet available in India. Costs prohibitively high to even consider importing. (Just to give you an idea, it would cost about $300,000) Realistically speaking, it might take upwards of 4-5 years for the drug to become available in India and reasonably enough proceed for me to be able to use it. Some people talk about clinical trials. Clinical trials for transplants? Hmmmm...

The third option is a status quo. Continue like I am doing now. On dialysis. Quality of life is not bad at all. However, things are happening. For sure. My skin looks alarmingly bad. My nephrologist has warned that my quality of life might be affected. He feels I should get a transplant as soon as possible. He in fact, wants me to meet the Transplant Surgeon and begin the process right away.

Which brings me to option #2. Transplant with Plasmapheresis. Plasmapheresis is not a sure shot solution for recurrence. It may work. It may not work. No one can say for sure. It will be expensive though it can be done in Hyderabad itself. Donor will need to be figured out. But this is within reach. Yes, it will dry up a lot of my family's and my financial resources. But certainly within our reach. Unlike eculizumab.

So that is what I am thinking hard about these days.

And then all of a sudden...

2011-07-06T21:56:00.000+05:30

Maqdoom Ali was about 40 something. I probably haven't seen a more cheerful patient. His attitude was amazing. He worked full time. Dialyzed thrice a week. He drove around town in a scooter. Yes, nothing surprising about that except that only someone on dialysis can tell you why that is nothing short of an achievement. After the four hour roller-coaster, going back home on a scooter is certainly not for the faint hearted.

Maqdoom Ali's zest for life was evident whenever I talked to him. He told me he realized that dialysis is what makes him live. Many patients try to cut down on the number of sessions thinking that they can manage without the extra dialysis. Not Maqdoom Ali. He knew that he needed as much dialysis as he could get. He often told me he knew his body pretty well and had learnt how much fluid it can tolerate and what the warning signs were. He had figured out what foods his body could withstand and admitted that whenever he crossed the line, he suffered. He would counsel other patients about not skipping sessions.

Maqdoom Ali wasn't from a very affluent family and being diagnosed with this disease without having enough money to pay for it can be very difficult.

He got his dialysis session on Monday and was scheduled to come for a session today. And then all of a sudden, this morning, he collapsed in the bathroom. His family immediately called 108, the emergency service. The paramedics came and declared him dead.

Maqdoom Ali's passing is shocking. How could this have happened? He was totally all right! I really haven't seen a patient who was doing as well as him. But then there were probably changes at the underlying levels which were not very evident. Changes which even Maqdoom Ali did not realize were taking place. Who knows? Who ever will?

With my involvement in NephroPlus, I realize that my attitude towards death of dialysis patients is also changing. While I burst into tears on reading Pavan Joshi's obituary in the newspaper many months back, I reacted quite stoically to the news about Maqdoom Ali. Not a graduation I would have liked.

Good guys finish last

2011-07-04T06:40:00.000+05:30

I was chatting with two patients at NephroPlus. Both of them were around my age, relatively recently diagnosed, on dialysis for a few months, still coming to terms with this dirty disease.

One of them remarked, "I often think - I never touched alcohol, never smoked, never had any bad habits. Despite this how did I end up with this problem? I had many friends who had every bad habit conceivable. They are all perfectly healthy." The other laughed and said, "Those people will never have any health problems! It is only fools like us who lead good lives that end up with this!" I totally agreed.

I have also experienced this. I was the 'good' guy in my family and at school. I was very well-behaved, conscientious, studious. I was also very religious. My grandmother once famously remarked that I was the 'essence of correctness', a phrase that has come back to haunt me from time to time.

Yet I was the guy who got diagnosed with this life-changing illness.

Even among people on dialysis, I get the best possible dialysis. Very few people get the amount of dialysis I do. I am also very proactive about my health. I research about my condition, try to read up about my condition and participate in the forums on the internet. In spite of all this, I have all the co-morbidities of long term kidney disease. I am now battling a skin condition.

On the other hand, I know of people who get dialysed barely twice a week, do not control their diet, don't even visit their doctor regularly, are least bothered about their condition and the new research that is coming out. Yet, they are totally normal apart from the dialysis bit.

All three of us agreed that we shouldn't have been so good and should have 'enjoyed life' so to speak. Its too late now though and our medical conditions forbid us from doing anything even remotely intemperate. Well, there we go again!

A +1 for Google +

2011-07-03T07:26:00.000+05:30

I have been using Google + for just a couple of days. I really like it. Thanks Jayadeep Reddy Thum for the invite! It has what I love about Facebook. It does not have what I hate about Facebook. So, there!

One problem I have had a lot with Facebook is my home page would be flooded with useless updates - updates I have no interest in. This guy became friends with seven other people or this girl was tagged in that guy's picture. This dude and four others changed their profile picture. Who cares? And don't even get me started on yes, you guessed it - Farmville and the gazillion other nonsensical games that people play on Facebook.

At any given time, about 75% of my home page on Facebook is absolute junk. There probably might even be a way to turn off all that junk on my feed. But who has the will to find out? That should be the default.

So far, Google + has managed to keep out the junk. But I must wait and watch for a few days before I decide that it truly is well done.

Another problem I have with Facebook is that often I would like to post something only to a selected group of my friends. No way you can do that. So, my posts actually add junk to other people's home pages! Google + has solved that beautifully with Circles. So, now I can create multiple circles of my friends and post stuff only to selected circles! Brilliant!

The Hangout feature where you can video conference with multiple people at once also has been talked about a lot and many people have loved it. I haven't yet got a chance to use that but it sounds exciting.

So far, the ride with Google + has been excellent. If this continues, I am going to bid adieu to Facebook very soon. I am hoping all my friends on Facebook also move to Google +. The only catch - you still need invitations to be able to sign up!

In search of the perfect bhindi fry

2011-07-02T07:12:00.000+05:30

I used to hate bhindi (ladies finger, okra). When I was a kid, I used to absolutely detest meals at home that included bhindi. The thickness of the outer part with all those gross seeds inside never appealed to my imagination.

I found many people like me. However, there were also some people who would swear by the bhindi. My dad's elder brother, for example, loved it and in an amazing manifestation of the genetic theory, his son did too. I never understood that part of them though.

As I realized over the years, there were no fence sitters when it came to the bhindi. You either loved the vegetable or you hated it.

In Effigent, we had a lot of young developers who were of, as they call it, 'marriageable age'! In their mid-twenties. As it happened, one by one, they would get married. A lot of them were Telugus. So, we would go for their weddings and receptions. Madhavi was one of the earlier ones among this lot.

Now, you might be wondering what Madhavi's wedding has to do with the bhindi? Bear with me for a bit, dear reader!

So, at Madhavi's wedding there was quite a huge spread. There were hot dosas being made at one side. There was the Dahi Wada, the regular puri, some nice sweets and - you guessed it - the bhindi. At first, instinctively, I passed. When my colleagues and I gathered in one area of the dining hall, plates in hand, making our way through the food, one of them remarked how great the bhindi fry was.

"Yeah, right!" I remarked. How can anything remotely got to do with the bhindi be great? He said I should try it. At first I was very hesitant. All the years of hating the vegetable made it difficult to give in. At this point another colleague joined in. "Even I hate bhindi but the bhindi fry is something else!"

That was it. I had to try it. So I went over to the buffet table and took some rice, some sambar and a little bhindi fry. The vegetable had been cut to small circular bits and deep fried and then some masalas added. They were garnished with curry leaves, fried cashews and peanuts.

I put a little vegetable with rice in my mouth. It was really excellent! It was almost as if the entire evil inside the bhindi was exorcised by deep frying it! I went back for more.

Ever since, I have been an ardent bhindi fry fan. I still haven't made my peace with the plain vegetable. The bhindi fry, however, is 'something else'!

So, what really are the facts about the clearance of middle molecules?

2011-06-29T08:01:00.000+05:30

In the context of dialysis and clearance of toxins, molecules such as Creatinine, Urea and Potassium are easy to clear because they are fairly small and pass easily through the membrane of the dialyzer or the artificial kidney. However, there are some bigger molecules such as Beta 2 Microglobulin. These molecules are very difficult to remove since they do not pass through the dialyzer membrane. It is important that these molecules be removed since they are also, after all, toxins and are harmful for the body.

There has been some discussion about how longer duration, more frequent dialysis removes the middle molecules more efficiently than the conventional modalities. I fail to understand how though.

Let's say you drill a hole in a wall about the size of a marble. Now, take a football and hit it against the hole. Will it go through? Obviously not! Now try again and again for a few hours. Will it make any difference? Obviously not!

This is very similar to the middle molecule scenario. The middle molecules simply cannot pass through the membranes of the regular dialyzers because the pore size is not big enough. The duration of dialysis cannot influence the result. Neither can the frequency. So, for a change, you have longer, more frequent dialysis as ineffective at achieving clearance of middle molecules as conventional dialysis.

How can we then clear middle molecules effectively?

High flux dialyzers. These dialyzers have bigger pore sizes and are the only way middle molecules can be cleared. Again, you will need more frequent, longer duration dialysis to be able to do this effectively. But high flux dialyzers really are the key.

This was also demonstrated in a study conducted in Australia outlined in this paper.

Porphyria Cutanae Tarda?

2011-06-23T20:10:00.000+05:30

Huh?

Well, that's what they suspect my recent skin condition to be!

My skin has become increasingly brittle. It cuts very easily. Barely do I scrape against a wall and my skin gets cut. I also get small blisters on my hands and feet from time to time. Yuck!

So, I showed them to my nephrologist and he asked me to see a dermatologist. The dermatologist carefully examined my hands and suspected that this could be Porphyria Cutanae Tarda, a condition commonly found among people with long term kidney disease.

I have been asked to get tested for the presence of Uroporphyrins which will confirm this diagnosis. The problem is this test is done in very few places in India. I am trying to see if I can get it done at AIIMS, New Delhi.

If the diagnosis is confirmed, then I might be put on Chloroquin, the drug used in Malaria. Wikipedia says with Chloroquin the condition usually settles in 6-12 months.

Well, whatever it is, at least I have a condition that has a fancy sounding name! Kinda cool, you know - Porphyria Cutanae Tarda! Heck, there is even a song by that name - see the second song in this album!

Who will protect the right of a child to live?

2011-06-20T08:13:00.000+05:30

I met Dr. Sidharth Sethi, Pediatric Nephrologist from Delhi over dinner a couple of days back. We discussed a lot of things including HUS. HUS being a predominantly pediatric disease, Pediatric Nephrologists have a lot of experience in its management.

As we walked out of the restaurant, we were chatting about different things. In some context Dr. Sethi said, "Many parents feel it is better to get another child than get a transplant for their child with renal failure."

To be very honest, I did not understand the statement for a whole minute. Dr. Sethi went on to something else. I wasn't focussing. I was trying to make sense of that statement. What had getting another child got to do with the first one? Only after a while did I understand what that meant!

I felt really horrible. How could that be?

I thought hard about this later. Parents would think about the effort and the money that would be required for a transplant. They would factor in the chances of success of a transplant. If (or when?) the transplant failed, the effort and the money for possibly a life on dialysis. They would then figure that it is easier to get another child. This child would then be left to die.

Can you blame the parents for this? Yes and no. Yes, because you feel how can anyone be so cruel to let their own child die when they can make it live? No, because in a country like ours, when most people pay all medical expenses out of pocket, most people would find it difficult to spend money on kidney disease which has no cure. It is a lifelong drain of a family's resources. Add to that the effort of looking after such a child. Some people also say that why let the child suffer? What kind of a life will the child have?

Then for a moment, think about what the child would choose given a choice and assuming an ability to think and communicate. Wouldn't the primordial desire to live overpower every other rational argument in death's favor?

And then for a moment, put an adult in its place. The parents in the child's place maybe. Would the other spouse think that way? Let him or her die. I can always get another spouse! Would that happen?

There are no clear answers to these issues. One thing comes across however. India needs a better medical system. And no, this time, the population is not an excuse. Andhra Pradesh has shown the way. Thousands of lives have been saved. Aarogyasri must be replicated nation wide. There is simply no choice in the matter.

Apple, please don't discontinue iWeb

2011-06-18T08:17:00.000+05:30

I have read some rumors on the internet that Apple might discontinue iWeb, the tool that enables Mac users to design beautiful web sites. Of course, there is no confirmation from Apple on this. One reason people think this might happen is the discontinuation of Mobile Me, Apple's older cloud service to which many iWeb users published their web sites to.

However, not all users used Mobile Me to publish web sites. You could also use any FTP server and publish your web site to it. I use that mechanism and have a couple of web sites running that way. Now, even if Apple did discontinue the product, I could still continue using my copy and could still maintain those web sites. However, I would love Apple to continue innovating on iWeb to make it better.

Many people mistakenly feel that iWeb is only for very simple web sites and does not offer a whole lot of flexibility. I have used iWeb to create some really good looking web sites and they more than serve the purpose.

That's the whole beauty of being in the Mac ecosystem. You get tools such as iWeb with which you can do stunning stuff very simply. Anyone who has used iMovie will agree with me as well. I recently created a really cool video piece with special effects, background music, titles and all that jazz in twenty minutes flat from video that was already shot.

Apple knows what most people want and provides it by default with the base software. That saves you a lot of time. Add the legendary ease of use that you expect from Apple and suddenly, you have a whole lot of power in your hands.

And despite all this, some people blame me for being an Apple fan!

Can people on dialysis eat fruits?

2011-06-16T19:28:00.000+05:30

Most patients on dialysis are asked not to eat any fruit. All fruits, they say have high potassium. A high potassium is bad for the heart. "You can even die", they are told.

This is not entirely true!

Here is a table of the potassium content of some foods:

Food Item	Potassium content*
Whole Wheat Flour	315
Green Gram	843
Buffalo's Milk	90
Cow's Milk	140
Apple	75
Guava	91
Papaya	69
Pear	96
Pineapple	37

*mg of Potassium per 100 g of edible item
(Source: Nutritive Value of Indian Foods - National Institute of Nutrition, Hyderabad)

If you look at the table above, you can clearly see that some fruits have much less potassium than other foods that we commonly eat!

Then why is it that we are asked not to eat fruits? I am not so sure!

I believe people on dialysis can have a little low potassium fruit everyday. And on the day of dialysis, some additional fruit just before dialysis or during the first half an hour of dialysis should not harm either.

I find that the craving for some food is probably worse than the effect of the food itself. When people are deprived of something, they start craving for that.

I remember hearing a dialysis patient saying he hasn't tasted a mango for the last four years! The technician told him he can have half a little mango in the first half an hour of dialysis. He was so excited! He is still alive and kicking.

Doctors and dietitians probably don't realize that craving something can lead to depression. So why deny someone the joy of a fruit when he or she can actually have it safely?

On dialysis, especially when you are getting good, regular dialysis (at least thrice weekly, four hours each time), then you can eat most things, provided they are in moderation.

So, feel free to talk to your doctor or dietitian about this and check whether you can enjoy a little fruit as well!

Internet based Nephrology Congress

2011-06-12T06:42:00.000+05:30

The 6th Congress of Nephrology on the Internet is being organized this year from November 15th to 30th. This novel Congress is held entirely on the internet. The way it works is presenters prepare their presentation in the form of slides, video or audio and upload it to the site. On the designated dates, the forums are opened where participants can go to the forum and view the material and then ask questions which the presenter answers.

It is a really novel idea where people from all over the world can interact with experts in different areas of nephrology. It is especially useful where people do not have the resources (or big pharmaceutical companies footing the bills!) to travel to other parts of the world where such conferences are held.

My article in the American Journal of Kidney Disease brought me an unexpected invitation to present a session at this conference. At first I thought it was a mistake and wrote back to the organizers saying that I am just a patient, only a patient and after all, a patient! They wrote back saying that they knew that but would like me to present my home hemodialysis experience from the Indian perspective. I was very happy! I accepted.

This is a link to the sessions that will be held. This is a link to the section (Hemodialysis and Apheresis) that has my session. I find myself in august company where Nephrology is concerned. There is Dr. Andreas Pierratos from Canada who is presenting an update on Nocturnal Hemodialysis. Our very own Dr. Sidharth Sethi from AIIMS, New Delhi is going to be presenting about HUS.

The best part about this conference is you can attend and contribute to it at your own leisure. This gives everyone a lot of flexibility along with the opportunity to learn.

So mark your calendars. Date: November 15th to 30th, 2011. Time: Whenever. Location: Your computer!

Young with CKD

2011-06-10T06:54:00.000+05:30

I met a 30 year old guy yesterday at one of the NephroPlus centers. He has been on dialysis for a few months now. Very well informed and proactive, he knew his options and was making educated decisions. A refreshing change from many other patients I see.

The issues to deal with for the younger lot diagnosed with CKD are very different, the most important among them being the longer life with the disease you have to deal with. Many people who are diagnosed with CKD in their later years have mostly 'lived their life' and don't have too many regrets getting the disease. They resign to the fact and accept the disease and try to pass off the rest of their days peacefully. Of course, that is not to say they are having a great time. But, compared to the young, they are probably lucky!

The young, on the other hand, are just embarking on life's journey when God/fate/karma/whatever has struck a huge blow. Suddenly, their plans all go awry. They have to contend with a life-threatening, chronic condition for the rest of their lives. Every step of their life will now be dictated by this disease. What they eat, what they drink, where they travel, whatever they do, everything, will now be governed chiefly by this disease. It is not easy.

The side effects of long term kidney disease can affect your quality of life in many ways and they tend to become worse with time.

Therefore, I strongly feel that if you are young and have CKD, you should take a shot at a transplant. Yes, it is not always successful. It may have its drawbacks in terms of having to bear the cost and side effects of immunosuppression medication and steroids. But, in my opinion, it is the only shot at a normal life that people with CKD have. Unless you have some condition that prevents you from getting one (your primary disease, some other inherent condition, finances etc.) you should give a transplant a shot. Make sure your nephrologist has done plenty of transplants. This is very important from the point of view of handling post-transplant complications where medicine doses might need to be altered or the medicines itself might need to be changed. So, talk to your nephrologist about the possibility of a transplant immediately. You will not regret it!

Linux - not for the faint hearted

2011-06-05T17:49:00.000+05:30

I am currently deploying a WebObjects application on an Ubuntu server. Yes, yes, I am very brave. But I have help, so it has not been that difficult.

What has been problematic is something that we take for granted - fonts.

Yes, Ubuntu and many flavors of Linux have no fonts installed. Yes, you read that right. No fonts. Period.

But little Kamal did not realize that and he set upon a mission. Of generating reports on a WebObjects application on Ubuntu using ReportMill.

App was deployed. First there was some issue with the WebServerResources. None of them were being read. I figured out that WO WebServerResources are stored in some other folder - not the regular document root of Apache on Ubuntu. Then I got the app working with the WebServerResources.

Then I tested the app and got an exception when I tried to generate the report. The exception was something about a font class not being found:

Could not initialize class com.reportmill.text.RMFont:java.lang.NoClassDefFoundError: Could not initialize class com.reportmill.text.RMFont

At first I thought that the ReportMill jar is not being found. Trust java to come up with some weird exceptions! Class not being found it said. Wait till you hear about what the reason for the exception was!

I contacted Shravan Kumar Mahankali, the best WO guy in India. The genius that he is, he immediately pointed out that the problem was not with the jar since the Font class was being recognized (otherwise we would have got a much higher level class not being found).

A little googling told us that in Ubuntu no fonts were installed by default. And we would have to install the basic fonts too. Some more googling and a lot of trials and errors later, I found that the command:

sudo apt-get install msttcorefonts

solved the problem!

I really wonder why even the basic fonts are not installed in this platform! Heck, I used good old Arial! Event that wasn't present. Despite all the changes, Linux continues to be a geek's OS. Not for the rest of us.

Pulling a fast one

2011-06-01T08:26:00.000+05:30

Baba Ramdev, the yoga guru embarks on a indefinite fast demanding that black money that is stashed away in various banks abroad be brought home immediately. Nothing wrong in black money being brought home. But this kind of threatening and demanding different things by undertaking a fast is becoming a little too frequent for comfort.

A few weeks back we had Anna Hazare fasting for the Lokpal Bill. The government conceded and formed a committee to look into this. Today, the committee is at loggerheads on practically all the important points of the bill. The members of the committee from civil society have threatened to walk out.

A few months back, we had the prince of all thugs, king of all scoundrels, corruption personified, prisoner of the gutters go on a fast for a separate state of Telangana. After a few days, the government conceded. A quick trip to Delhi, a meeting with Madam and there was a rollback. Someone's bank balance had definitely gone up. Don't ask me which bank though!

So, the point I am trying to make is fasts don't work. And they shouldn't. We are not in the Gandhian age and neither do have a Gandhi among us. Blackmailing the government on any issue is wrong. Decisions like these should be taken after more careful consideration and consultation. Only then can we have a meaningful, implementable resolution of any issue. Only if the government of the day is serious about something will it see the light of the day. Otherwise, you will have insincere attempts, half-hearted discussions and meaningless actions.

However, if something as important and serious as corruption is not tackled seriously, where would we head as a nation? I totally agree that these issues need to be addressed. But fasts are not the way out. These will not show us any results. We will only end up having more confusion.

Abhi tak hum zinda hain!

2011-05-28T22:07:00.000+05:30

Yes, I am still alive. And kicking! No posting from a few days, yes. But that's because I've been a little busy.

I have been mostly busy with the automation project of the Jain Dialysis Trust. The coupon distribution that happens every last Sunday of the month was becoming very chaotic and difficult to manage. So, Shri Inderchand Jain asked me if it could be automated. I said, "Sure!" And got started with this project. I couldn't contribute financially to this extremely noble cause. This was the least I could do. So, with the help of my dear friends, A Srinivas, Ankurpreet Singh and PVK Ramesh, I embarked on an enterprise of honorable, dangerous consequence. Honorable because the cause was so good and dangerous because failure would be disastrous!

After much of going back and forth on the technology, we got the application complete. We have the hosting figured out too. Now only the testing and deployment remains! Wait a minute! Did I say 'only'? No way. Testing and Deployment can be major, major headaches. Let's hope the project gets done soon and well.

On the medical side, my hemoglobin went down to 9.9! Well, it was 13+ at one point. In an extraordinary act of courage, my neph decided to reduce my Erythropoietin to 2,000 units a week. Within weeks, the hemoglobin plummeted to 9.9. My neph blamed me for not checking my Hemoglobin often enough! I have been accused of many things in life. But not this. Never have I been accused of not doing blood tests often enough. I check it once a month at least! Not enough, he said. Once in fifteen days it is, now! So 9.9 leaves you with not too much energy at the end of the day. I am now on 4,000 thrice a week. It has bounced back to 11.4! If the blood tests are right, that is!

All this low hemoglobin has not reduced my swimming though. I am gradually increasing the amount of swimming I am doing. I changed the pool I swim in recently. And I am doing more than my last pool. The motivation for increasing the swimming was mainly the increased weight which was probably due to the relaxed diet (sweets and fried stuff) I was indulging in. So, I now have given up sweets and fried food (chocolates exempted from the ban).

I am still unable to give up the ghee on idlis though. Right in the midst of this austerity drive, I went to Poorna Tiffins one Sunday morning, firm in my mind, that I would have the idlis without ghee. I successfully managed that too. But it wasn't the same. My day felt incomplete. Dry. Something was missing. I had to go back on the Wednesday following that Sunday and have my usual idlis laced with ghee. I think the weight loss will have to come from more swimming!

Unexplained problems of dialysis patients

2011-05-23T06:33:00.000+05:30

I often have problems that bother me for a few days and ask my doctor about on my next visit. Sometimes he knows what to do. Sometimes he just ignores it or gives me some vague answer and asks me not to do anything about it. I get irritated.

At NephroPlus, I meet all patients that come for dialysis whenever I am at a center and chat with them about how they're doing. I tell them how I am doing. We share our problems and solutions. Often they talk about some problem that I have never had. I have no clue on what they could try. I tell them as much. I tell them to talk to their doctor. They most likely have already done that and have not received any advice.

Well, that is the nature of the human body. Medicine has so much yet to be discovered. What has been unravelled is but a tiny part of this very complex system. Just think about the way the parathyroid glands control the level of Calcium in the body (see this link) and you will begin to appreciate this almost magical system called the human body. At lower levels, when I read about the way the complement system works (especially interesting to me because of my primary disease) and the mind-boggling number of chemicals involved released and absorbed by various tissues, I see why medicine has not been able to solve so many problems related to disease. Still, the progress made is stupendous by any standards.

Given such a complex system, it is impossible, at least at this stage, for doctors to be able to figure out every small problem patients have. Patients must understand this. At the same time, it is important not to ignore certain things. Things that could be signs of a serious condition. So, we, as patients, must watch out for every symptom that is out of the ordinary.

We must talk about every problem with our doctors. If they don't know about it or ignore it, we must not get irritated. We must understand the limitations of medical science. Especially if the symptom is something transient, lasts only a few days. On the other hand, if there is something that is persistent, something that is recurrent or something that is paining or bothering you, then do not ignore it. Talk to your doctor. If he is not able to help, talk to another doctor. Or look up the symptom on the internet. There are plenty of support groups online. Ask there. The I Hate Dialysis suport group has hundreds of members and will very likely give you some answers.

Bread maker on the way

2011-05-21T06:32:00.000+05:30

I love good bread. Freshly baked, warm bread is the ultimate morning experience if you don't count Darjeeling tea. Geetha Aunty of Boston is famous for her bread. My mother stayed with her a few years back on her trip to the US. At that time she had baked some bread flavored with orange rinds. My mother couldn't stop talking about how she left the bread to bake in the night and in the morning the entire house was filled with the aroma of fresh bread!

This kind of imagery usually has me hooked. Ever since then I have dreamed of waking like that at my house too. Now, finally, that wish will come true. My parents who were in Boston a couple of days back bought a bread maker recommended by Geetha Aunty. I am more excited about the bread maker coming home than them!

Bread though is a very individual thing. There are many people who cannot stand it while there are others who swear by it. My uncle, for example, has this hatred for bread that is difficult to describe. He feels bread is for the poor and not for people who can afford better food! This is probably a relic of the times when bread was always made with refined flour (maida) rather than whole wheat. It came really cheap.

These days, however, you get bread made with a variety of flours and can cost quite a fortune. Walk into a Bread Talk (one is inside Q Mart at Banjara Hills) and you can see the different kinds of bread at prices that will put the Alphonso mango to shame. Gone are the days of bread only being a cheap, poor man's food!

I am not a regular cook. But I like to dabble once in a way. One of the things I have tried my hand is bread. It has never come right. I sure hope that changes in the coming days!

WebObjects: Clean your project if you have modified any resources

2011-05-18T22:28:00.000+05:30

I was working on a WebObjects project that needed some reports for which I was using ReportMill. Now the ReportMill templates are to be kept in the Resources folder of the WOLips project (I use Eclipse/WOLips/Project Wonder - is there any WO developer out there that does not use this combo? Please send me an email!!!).

First cut at the reports - obviously it wouldn't work. I thought I had figured out the problem (the object that you actually pass to the report wasn't bound correctly to the table in the template) and fixed it. Tried it again. No luck. Made some more changes. Nope. Started the template from scratch. Nothing.

Then I don't know what struck me. I cleaned the project. Voila! It worked. I had forgotten an important WOLips (Eclipse?) rule. Clean your project when you modify your resources. The build system figures out whenever you have changed your java files and auto-compiles and uses the latest. Not so for the resources. It does not by default check if the resources are modified and includes them afresh. You need to clean the project and then the new files will be picked up.

I am sure there must be a simpler way to get the latest resources to be picked up every time! Anybody?

My Nano caught fire

2011-05-17T18:24:00.000+05:30

I had heard a few instances of Nanos catching fire. But this happened to me.

First of all, for the past few months, the Nano has been giving us a lot of problems. It stopped right in the middle fot he road on two occasions and just wouldn't start. My dad was driving it both times. He had it pushed to the side of he road and then we called the workshop and they had to tow the vehicle to their place. Both times they said some part had to be changed which they did and brought it back.

About a week back, I was in the Nano and my driver was driving it. Suddenly, in the middle of thick traffic, there was fire below the hand brake and smoke around. We were shocked. My driver immediately switched off the car and steered to the side of the road. We both got out of the car and then had it pushed to my brother's house which was close by.

We called the workshop again and they towed it away again.

I talked to the manager and asked them to take the car back and give me a refund. They say they will check the problem and let me know.

Is it wrong for kids to enjoy?

2011-05-16T20:35:00.000+05:30

On Saturday, we had dinner at my uncle's house. It was a big family dinner. The occasion was his son's wedding anniversary and their daughter-in-law was in town though they stay in the US.

I, as usual, reached early. Well, their house is in between my office and home. So, instead of going home and coming back half way, I thought might as well go there straightaway. To kill time till the rest of the family strutted in, I took my iPad with me. I was checking my email on it when my cousin sisters' kids came there. Two cousin sisters. Four kids. All from out of town. In the age group of probably 6 to 10.

They asked me in the cutest possible tone, "Aa shoo chhe?" (What is this?) I told them it is called "iPad". I then did a quick demo of the Photos app. They were all floored. They all sat in a line next to me and one by one took the iPad in their hand and played with the Photos app. Zoom in, zoom out, pan, rotate. I also showed them some pics of some of them from a few years back. Squeals of laughter and delight!

By then their mothers had sensed that they were playing with a fancy device. They quickly warned them and me to be careful.

Next were a few simple games I have on my iPad. One by one they would take shots at the games and play for a few minutes each. "Next its my turn". "Then mine". "Then mine". They were clearly having a ball!

I then showed them the Piano and played a couple of popular tunes and then opened Penultimate. This was a huge hit. This is an app that allows you to write or draw with your finger. There are some fancy features like an eraser, adjusting the color and size of the pen etc. They were on a roll. One by one, they took the iPad and let their drawing skills loose. Mountains, the sun, birds, the ocean, fish.

After a while, the adults went berserk. They asked the kids to stop it at once. They asked me to put the iPad in. I didn't quite understand what the fuss was about. It was not as if they were fighting over it. They were drawing one by one in an extremely orderly manner, clearly fascinated by this new little gadget.

But the adults didn't care. It had to stop. They would 'spoil' something. This was an expensive device. Not to be fooled around with by a bunch of unruly kids!

The kids gave up. I put the iPad in.

After all, I couldn't stand up against the collective might of the maternal oligarchy of the Parekh kutumb!

What a dearth of choices

2011-05-15T20:44:00.000+05:30

There has been so much that has been said about the 2G scam and the corruption in India that I don't think I can add anything of value on the subject.

However, I was just thinking about the recently concluded Assembly elections in Tamil Nadu. People are very gung-ho about the way the DMK government has been booted out and the very low number of seats they have won this time. Yes. Totally agree. Good that they were booted out. They deserve this. Probably more.

But think for a moment. Who has come in the DMK's place? Jayalalitha, the mother of corruption. And she has the gall to actually say that the mandate was not only against the DMK but decisively for the AIADMK. Apparently she is going to foist more corruption cases on the Karunanidhi family.

The people of Tamil Nadu always give a decisive mandate in favor of one party. So, turn by turn these two people come to power, loot the state and its people and then lose power, smug in the belief that they will get their chance after five years.

Talk about being having to chose between the devil and the deep sea!

Differences in spoken language between migrants and the natives

2011-05-12T21:22:00.000+05:30

I caught up with a few cousins this Sunday for breakfast at an aunt's house. (Yes, I missed my weekend rendezvous with Poorna Tiffins. I made up for it by going mid-week in the evening though!) We discussed a host of stuff. One of them was how the same language, Gujarati, is spoken so differently by us, who have been out of Gujarat forever and people who have been in Gujarat all their lives.

The Gujaratis who stay in Gujarat use very pure Gujarati, unpolluted by English or Hindi words. An example my sister gave - "Jo ben tamari seeti boli" evoked laughter among all of us. We were more used to "Jo seeti vaagi"! Another example she gave was - "Aatlu motu vahan nathi dekhaatu?" "Vahan"? We forgot that word long back!

I remember Dinesh growling, many years back, at the chaste Tamil being used by a group of students from Chennai who were going back to Chennai from Hyderabad on the same train as us. One of the students asked him in Tamil if the TT had come and gone. Dinesh spoilt his face after the guy went! Dinesh wasn't used to such pure Tamil!

Another thing that I noticed was people who are away from the state generally have a purer dialect than people in the state. The people in the state acquire the dialect of the region. People away from the state generally speak the 'official dialect', if there is such a thing! Again this is true mostly for people who haven't stayed for long in their native states.

The language of the people of a state who stay in other parts of the country slowly gets mixed with other languages. More importantly, they also get more attached to the culture and traditions of the place than their native states. For example, Sankranthi appeals to me more for the Pongal than the kites!

Well, you can't give up dialysis just yet!

2011-05-11T19:47:00.000+05:30

There's a lot of exciting stuff happening on human organs and newer, more compact dialysis delivery mechanisms. In the first issue of the HKF newsletter, we had given some details about the Wearable Artificial Kidney. We also mentioned that this was at least a few years away. However, the excitement of getting dialysis where you want and when you want got some people carried away and we started getting calls from hopeful dialysis patients asking for one!

Well, sorry to spoil your party but it will be at least another ten years till people like you and me can have access to this machine.

There is a lot of research and promising stuff on the horizon. Take a look at this link sent by Karthik that talks about growing kidneys among other organs in the lab. They talk about using organs from brain dead people and then washing off or dissolving all the tissues to get the 'scaffold' and then putting cells from our own body on the scaffold to form an organ that will not be rejected by the human body. The program itself says this is decades away.

You know what - sometimes I honestly feel that I should have been born about 25 years later. That way I would have had access to the NxStage System One in India and may be even got a shot at some of these fancy new devices.

All these new devices may just be a little too late for me.

Feedback from patients - a double edged sword

2011-05-11T07:47:00.000+05:30

At NephroPlus, one of my responsibilities is to get feedback from all patients once in two months. It is an interesting exercise. You get to talk to patients in a non-dialysis unit setting. At times, when I am introducing myself to them, I feel like I am a call center executive calling to sell a credit card or an insurance plan. The same lines over and over again to an irritated listener. Mostly though, they are all very good and complimenting!

They have never had this experience though. Someone from a dialysis unit calling and enquiring about whether the service has been good and if there are any complaints is very unusual. Some of them are so not used to it that as soon as I call they say I am coming tomorrow at 8 for my session without waiting for me to even ask my questions!

The patients in a dialysis unit are a small replica of the world. You have the Ph. D.s and you have the uneducated. You have the extremely rich and the not so rich. You have cheerful folks and you have grumpy people. Each of them reacts to the questions in a different way.

There is one patient that I particularly dread calling. The patient is mostly grumpy. She talks only to one nurse in the dialysis unit. She doesn't even come on the phone. Its mostly her family. And they are equally grumpy. I usually save her call for the last. I try to avoid it too. But in the end, the empty cell next to her name in my Feedback Excel forces me to dial the number!

Most calls are usually very easy to do. "Excellent service", "No problems at all", "Staff is very good", "Nice of you to call"!