Saturday, January 31, 2009

Ethnicity, religion and nationality

In the wake of the swift, firm and decisive action by the Sri Lankan government in almost wiping out the LTTE, one of the most potent terrorist organizations in these parts of the world, we see Tamil people all over the world protesting against the deaths of Tamil civilians in the process. Nothing wrong with that.

Sometimes, however, we see ethnicity and religion overpowering nationality while reacting to situations.

The world today, is divided into nations which are almost always political in nature, not based on ethnicity or religion. So, you have people of different races and religions existing in the same nation. Though you will most often have one group, ethnic or religious dominating the demographics, there will always be other groups in smaller numbers.

For example, when Sri Lanka is cleaning up its backyard, the last thing it needs is the Indian Foreign Minister air-dashing to Colombo to discuss the safety of Tamil civilians. The Tamil civilians are Sri Lankan citizens. Not Indian Tamils on a holiday there. What is the locus standi of the Indian government to bring up this issue? In any such operation, there are bound to be civilian casualties. It is the bounden duty of the government of Sri Lanka to make sure that they are minimized. But, it is not India's business to enforce this.

India has been a victim of this too many times in the past.

Take the example of the attacks on Christians in Orissa. This was entirely an internal issue for the Government of India to tackle. No other government, including that at the Vatican, had any right to lecture India on the safety of its citizens. These were Indian citizens. And India is capable of protecting its citizens. One swallow does not a summer make, remember?

That's where the concept of ethnicity, religion and nationality comes in. People are emotional at different levels about these three identities. But keeping in mind the political order in the world today where people are divided not by ethnicity and religion but nations, this kind of belligerent posturing by sundry groups should not be tolerated by anyone.

Thursday, January 29, 2009

Dialysis in Goa

During my recent trip to Goa, I was planning on being there for three nights. I would need to do one dialysis session there. I was leaving on Friday afternoon which meant I would have dialysed Thursday night. I was returning on Monday evening which meant I would get dialysis on Monday night. That meant I would be away from my machine for three nights - Friday, Saturday and Sunday. So, it made the most sense to dialyse in Goa on Saturday.

Last time, we were staying in North Goa so it made sense to dialyze in the Vrundavan Hospital which is in that part of the city. This time around, however, we were planning to stay in South Goa. Apollo Victor Hospital in Margao would be the most ideal.

I got the telephone number of the hospital from the internet and called them up about 10 days in advance. I spoke to one of the senior technicians there. I requested an appointment for the 24th of January, Saturday evening. He checked his charts and told me that a slot was available for 8 p.m. that day. I confirmed that he should book it for me.

8 p.m. made sense since I could enjoy myself the whole day and then get to dialysis late in the evening and get back late in the night. I called the Monday of that week too to confirm. Everything was fine.

Once I got to Goa too, I called to confirm my appointment.

Dialysis facilities are quite different in India from the US and other countries (from what I read on the internet). Most facilities, here, are part of a full fledged hospital. Male technicians trained in the various aspects of dialysis mostly do the entire treatment. There are female nurses too but it is the male techs who are responsible. In the US, a majority of dialysis centers are independent units and it is mostly female nurses who do everything.

The Apollo Victor Hospital was a typical Indian hospital with a dialysis unit and male techs doing the job.

I went and met the tech there. He asked me to go and pay the dialysis charges at the cash counter on another floor and also buy the dialyser and the tubing set from the pharmacy. I did this and then came back to the unit.

I had got my buttonhole needles with me. I then talked to the tech and requested him to allow me to cannulate myself. He was hesitant at first. He had never come across anyone who could cannulate himself. I explained that I dialyzed every night at home and did the entire procedure myself. I explained about the buttonhole method and about the tunnels that form. He reluctantly agreed.

I then asked him how many hours did they usually dialyse people for. "Four hours", he said. I asked if I could do it for five. He said no. He then asked me how much fluid I needed to pull off. "Three liters", I told him. He then checked my blood pressure. It was 90/60 which was my normal pressure. He was worried. He thought that was quite low and he decided to check with the nephrologist attached to the hospital. He called him and gave him a little background. The neph asked him to remove 3 liters over a dialysis session of 6 hours. I was glad.

The rest of the session was quite uneventful. I had taken a sedative and so, slept through the treatment which was quite a relief because staying up six hours can be both butt-numbing and nerve-racking at the same time!

The weight loss however was only 2.2 kgs. This is one piece I can never reconcile with. Some machines are so unreliable in removing fluid. Imagine going through a six hour session and getting only 2.2 off! What a royal waste of dialysis hours! My Fresenius at home is perfect. 3 liters is 3 liters no matter what.

My dear brother Karan had dropped me off around 8:30. He returned at about 3 in the morning to pick me up. But it felt good to get a good session of dialysis. This would pep me up for the rest of the trip.

When I got back home on Monday, I checked my weight. I was about 5 kgs above my normal dry weight. Add the 2.2 that I lost during dialysis and I deduced that my net fluid consumption during the trip was about 7.2 liters. Over 4 days and 3 nights. Which is not bad at all!

Wednesday, January 28, 2009

My Goa trip

This year, the second in a row, our family decided to go to Goa for a holiday. We pretty much go somewhere every year. It had become a little less regular after I was diagnosed with kidney disease but when I switched to PD and now when I am on home hemo, we have sort-of managed to go out of town for a few days atleast.

After a lot of debating between different places like Vishakhapatnam, we zeroed in on Goa. Though we had been there less than a year back, the allure of this laid back west-Indian state was too much to be ignored. It is an ideal vacation destination. A place where you can completely relax. Far from the perils of a life where every moment brings additional stress, where every action is hurried to meet some deadline, some commitment.

The best part about holidaying in Goa is that you don't have to go sight-seeing. You've been to one beach, you've been to them all. So, there is no urgency to cover all the places. So, you do what you're supposed to do on a holiday - nothing!


The rest of my family had left Hyderabad on the 21st while I joined them on the 23rd.

I managed to make quite a fool of myself on arriving at the hotel. There was this economic summit where some business leaders where supposed to be confabulating on .... whatever. So, when I reached, I was surprised to see a line of ladies dressed in sarees with garlands made of shells. As I got out of the taxi and walked out, one of them came and garlanded me! "I have not come for the economic summit", I protested. They did not relent. I walked away to my room. I got to know later that they garland all their guests on arrival, not just the ones for the summit!

As soon as I reached, I quickly got into my trunks and hit the pool. The pool was heavenly and had a bar in the middle that you could swim up to and have a drink. It was a very soothing deep blue and had me totally mesmerized. We also went to the beach after a while, played in the water, got back into the pool and swam till we had enough.


The next couple of days were not very much different. Basically swimming in the pool, playing on the beach, eating the sumptuous spread the hotel had and sleeping.

One day, however, we went down to the Leela Hotel's beach where they had all the water sports - Jet skiing (water scooters), parasailing (you go on a parachute-like contraption tied to a water scooter high up in the sky - really thrilling), Ring-O (they take you really fast in a tube like structure in the water - my neck almost ruptured in the process!) and the Banana ride (up to 5 people sit on a banana shaped tube and are taken in the water, dragged fast by a motor boat and suddenly they overturn the banana and you go right into the water!). We had great fun there.


The last evening, however, I went for the horrific massage and the next morning we headed back home.

Goa is the ideal place to holiday in. It gives your mind the much needed break from the grind that our lives have become. Three days of complete fun in an idyll surrounding. An extremely effective way to recharge those batteries.

Tuesday, January 27, 2009

The horrific massage

I am back from Goa. More about the rest of the trip in a day or two. But I have to tell you about the massage.

The spa at the hotel I stayed in looked very good. We had gone on the first day of my arrival to take a look at what it had to offer. It was done up in ornate furniture, had soft music playing and had candles lighting up the place. It seemed really good. I checked out what they had to offer. One of the services was a 'Deep Tissue Massage'. I immediately started imagining a firm massage of my aching back (from the long travel I had had that day) and my entire body being relaxed by the procedure.

So, on the last evening of our stay there, I called the spa and booked an appointment for the 'Deep Tissue Massage'. I went at the appointed hour. To my shock, I was introduced to a young lady in her early twenties, possibly from China, Nepal or the North Eastern states of India. I had never had a massage done by a lady before. I concealed all emotion and walked with the lady to a massage room.

The room was dimly lit, had a soothing fragrance and had soft music playing, similar to a river flowing and a soft instrument playing alongside. I was asked to remove my T-shirt and lay on my stomach on a table. I did as I was told.

The lady then started the ritual of applying a fragrant oil on my back and started massaging my back. The strokes were very gentle at first. I started feeling quite relaxed. She asked if the pressure was all right. I nodded. Slowly she started increasing the pressure. It wasn't too bad.

At one point however, she took a finger from each of her hands and dragged them with great pressure from the middle of my back right up to the neck. Somewhere in the middle I could feel a crack as if the finger had slipped down a bone. At first, I thought I would protest and tell her that it was too hard. But then I remembered talking to my brother (who is some sort of an expert at getting massaged by petite young women) about 'hard massages'. He had said, "Though it may be slightly unpleasant during the massage, it can be immensely relaxing afterwards."

So, I decided to let her continue.

She continued that very stroke about 20 times.

The stroke then turned gentle again and at the end of it, she announced that the treatment was completed. I made some polite conversation and exited.

Till about two hours - nothing. I was thinking to myself, I must get this done more often. I was actually feeling quite nice. My back was feeling relaxed. I headed to the beach and played around in the water for a while, had a shower and then took a dip in the swimming pool before heading back to my room.

Then, it slowly began. Pain in my upper back. Radiated towards the shoulders, my lower spine and my thighs and calves as well. Within about half an hour I was rolling in pain! I was wondering what could have caused it. For some time, I wasn't ready to believe that the massage was the cause. What could a massage have to do with this, I reasoned.

Was this a conspiracy? The masseuse trying to finish me off, perhaps?

I got some muscle relaxant applied all over. This temporarily eased the pain. I had a quick dinner, took some paracetamol and a sedative and went to sleep. The next morning, the pain was back. Again some ointment and a paracetamol. This was the day we were heading back home. The pain was on and off pretty much the whole day and the next. Gradually, it wore off.

I feel much better now. But I will never forget the horrific massage which did the exact opposite of what it was supposed to do.

Also, one little piece of advise - never ever have a hard massage. Always go for the soft one. And shout out loud if you feel even the slightest discomfort.

Friday, January 23, 2009

Hotmail sucks

I've had to undergo the pain of accessing my brother's hotmail account a few times in the last couple of days. He was expecting an important email and he wanted me to check.

The first screen has some indecipherable text on the left. Take a look:

It reads thus: "##li4##Powerful Microsoft technology helps fight spam and improve security.##li19##Get more done thanks to greater ease and speed.##li16##Lots of storage (5 GB) - more cool stuff on the way.##BR## ##BR## ##A##Learn more##/A##"

What do you want me to say about this? How incredibly funny! Is QA totally dead at Microsoft?

Another funny thing is - this site is www.hotmail.com. Yet, when I type my brother's email id without the '@hotmail.com', it complains! It asks me to type the entire email id. Well, I know you can use other domains (passport, they call it - funny eh?). But can't you take the default as hotmail? Like google does?

Anyway, I'm off to Goa in a few hours. So, there will be silence on the blog for a few days. I return on Monday, the 26th. Peace on earth!

Wednesday, January 21, 2009

My ravenous appetite

I have a huge appetite these days. I have a small bowl of cereal before I go for a swim lest I feel weak in the pool. Once I get back, before I go to work, I have a full breakfast. Lunch is at 1 unless I feel hungry at 12:30. By 4:30, I am hungry again and I have 'dhokla' made of oats. Dinner is at 7:30p.m. - again a full meal.

What's wrong with me, you might ask? Nothing really. I checked with my neph.

"Are you putting on weight?"

"No."

"Any other symptoms?"

"No."

"Don't worry then. Eat!"

Well, that was it. Makes sense too. If I am not putting on weight, why worry. And I eat (mostly) healthy food. Very rarely do I indulge in sweets or fried stuff.

But people around me are quite surprised at the amount of food I eat. Especially when I am at Poorna Tiffins, people sitting next to me have been horrified at the number of idlis I finish off - soaked in ghee, mind you! My brother often asks me how many dozens I ate!

Recently, Timothy, a friend put it quite politely at the end of a meal. "You ate quite well!" All he had had was a soup while I polished off a large pizza! I got the message, Tim!

A few days back I was chatting with Ambuj and he told me what he ate at different times during the day. I dared not respond with what I ate because I realized that I consumed in one meal what he consumed in a day!

I remembered my appetite this morning when our cook was making Paneer Parathas for breakfast. I really love Paneer Parathas. The cook keeps making the parathas until I tell her that I will eat only one more. This morning, after quite a few parathas, she was wondering what had happened. The signal wasn't forthcoming. With every paratha, she would look askance. I finally obliged.

She was visibly relieved!

Sunday, January 18, 2009

Kamal on dialysis - my dialysis video

I had my brother take a video of me starting dialysis myself one night. A lot of editing - removing the inconsequential parts (and a couple of bloomers which I did not want anyone to see!) and I have three parts of the video. I finally shortened about 39 minutes of footage to less than 19 minutes.

The first part covers the preparation of bicarbonate solution by mixing 2 packets each of Sodium Carbonate and Sodium Chloride with about 18 liters of water purified by Reverse Osmosis. It also covers the priming process when I remove the formalin that is in the tubes and dialyser after the previous night's session. I reuse the dialyser and tubes 6 times a week and then on Monday use fresh ones.



The second part is where I cannulate myself. As I warn in the video too, this part may be difficult for some to see because my fistula looks quite monstrous and ugly, however beautifully it works! For people not on dialysis, seeing a fistula without wrenching in the gut is quite difficult. So, if you hate seeing ugly body parts and are uncomfortable watching needles go in, stay off!



The last part covers the connection of the dialysis tubes to the needles and blood going through the system and finally returning to my body. Let the games begin!



It also has a pitch for home hemo in the end. People can have normal lives on dialysis. People can have fun-filled lives on dialysis. Do not think that dialysis is the end of life as you know it. Talk to your doctor about the different modalities including the possibility of short daily dialysis at home and nocturnal daily dialysis at home.

Saturday, January 17, 2009

Headphones that play silence?

As a solution to my problem with Mr. Crow at work, both Kartik and Bill Peckham suggested using headphones to cut out the noise. I have a problem using headphones. I cannot focus on my work when music is playing.

My mind needs silence to concentrate. I know many people listen to music when they work. That doesn't work for me at all. My mind keeps oscillating between the work I am doing and the music that is playing. Kartik suggests having 10-15 songs which you've heard many times. I doubt if that will work for me.

Another thing which people often use is to play music without lyrics - just instrumental music. This didn't work for me either.

I know what will work though. Headphones that play silence! Is that possible? Can silence actually be created?

How nice it would be if that were true? You could get your peace whenever and wherever you wanted!

Thursday, January 15, 2009

Goa calling

After a great time a little less than a year back at Goa, my family is going back there. The trip is finalized. We will be there from the 23rd to the 26th. I am really excited!

The choice this time was between Vishakhapatnam (Vizag) and Goa. We considered Vizag because we had heard a lot of good things about it and none of us had had a holiday there. In the end, however, Goa won because we were sure we would have a great time there, never mind if we were there only last year.

I will be there for three nights. So, I have fixed up a session of dialysis on Saturday, the 24th of January at the Apollo Hospital in South Goa since we will be staying in South Goa this time. Last time we were staying in North Goa, at the Baga beach and I had dialyzed in a hospital in Mapusa in North Goa.

I will be missing dialysis on Friday and Sunday only. Monday night I will be back in time for dialysis. So, its not going to be a problem at all. I remember last year, while we were planning the trip, I was really nervous about the dialysis but Bill Peckham reassured me and I went ahead with the trip. How can I thank him enough?

I enjoy travelling so much. That is why I liked PD. You could pretty much travel unfettered. With hemo, there are some restrictions. You can only travel to places that have a dialysis facility close by. There are places like Ooty and Kodaikanal which are great to holiday in, but to dialyze I would need to drive about 3 hours one way which makes it a little bit of a pain.

Luckily there is Goa which has excellent dialysis units in the city itself which is very convenient.

I really wish, however that India soon gets portable hemo machines. That way, I can travel to any place without any problem. NxStage, please listen!

Wednesday, January 14, 2009

Is home dialysis risky?

I have been trying to get my acid solution from other vendors because my regular vendor ran out of low Calcium solution and due to the truckers strike (called off now, thankfully) could not get additional supplies from elsewhere.

During these inquiries, one of the vendors got to know that I was on home hemo, a rarity in these parts of the world. He was genuinely worried about it and thought I was on it because of an 'overenthusiastic technician'. I assured him that it was my doctor who advised me to do this. He said it was risky and asked what I would do if there was an emergency.

I explained to him that the dialysis I was doing was less risky than that in hospitals because of the gentle nature of the treatment with slow pump speeds and low rates of fluid removal. I also told him that I had learnt how to start my session and was doing it myself these days. He was quite well-informed about the modality since he said that most people in the US on home dialysis also do it themselves.

On the face of it, home dialysis does sound risky. In the hospital setting, there is, theoritically, better preparedness for any emergency or complication that can result during dialysis. At home, in comparison, there is hardly any such infrastructure.

The primary difference is the nature of dialysis. Dialysis at home, especially at night for long hours is much more gentle and the chances of complications and emergencies are much lower.

Well, the risk is not zero. But its not high either. And I can vouch for that with the 30 months of experience that I now have.

Whatever the risk, I am willing to take it. I am confident I would not have been able to take the life that comes with regular in center dialysis. It would not have been worth it. I would not have been able to work, to do anything that I truly wanted to do. I probably would not even want to do anything. Its that bad. I know there are people who do live complete lives on regular dialysis. But I am not that strong.

Nocturnal home hemo has given me my life back.

If in the future, I do happen to die due to a complication during my home hemo session (very unlikely), I do not want anyone to say that this happened because of home hemo. There is a greater chance of dying in a road accident or by a meteor falling on your head. Whatever I have lived, I would have lived more fully, more enrichingly because of this modality. And that counts for more than anything else.

Tuesday, January 13, 2009

My colleague, Mr. Crow

(Names have been changed to protect identity)

Some people love to sing. Only, you wish that they didn't love it so much. Especially when they are not alone.

The office I work in is in a very quiet area. There are only four people working in it. All of us sit in one room. Any conversation is inevitably heard by all. Very much against Joel Spolsky's advice of having offices with closed doors for each person in a software setting. So, if the two people who are involved in Project A need to discuss something, they discuss it right there and it disturbs the other two people in the room who have nothing whatsoever to do with that project.

Now, one of my colleagues, Mr. Crow loves to sing. And its not when he is alone that he sings. He sings all through the day. While walking into office, while starting up his computer, while having lunch, while walking out of office, during an important meeting. Ok, I made that last one up.

His singing isn't all that bad either. Its just the timing. And he sings the first couple of lines from one song and then without any reason (or warning) moves onto another song of a completely different genre. It can be quite disconcerting.

When you are writing code, as in software code, you need silence. You need to focus. You need to get into the 'flow'. It is very difficult to get into the 'flow' and very easy to get out of it. That's when your mind is so immersed in what you are doing that you stop realizing the passage of time. Most software programmers write their best code when they are in this zone. Of complete concentration.

I am back to coding these days and am enjoying it thoroughly. There was one such period when I was debugging my project to see why WebObjects was not generating primary keys for one particular entity, as it so effortlessly does for the most part. I had done quite a bit of analysis and was quite deep into the algorithm, holding different pieces of information and felt I was close to figuring it out. Just then...

"Premani, premani, premani, premani...", Mr. Crow decided to break my reverie. It was almost as if someone had broken glass. "Aaaarrrggghhhh", I shouted out in my mind. I lost the chain of thought. "Tere bina zindagi se koi shikava...", Mr. Crow effortlessly meandered.

Primary keys would have to wait till the crooner had had his fill.

Monday, January 12, 2009

Reunion time

This December-January has seen a flurry of reunions. School reunion, college reunion, colleagues reunion. Different groups among these having their own reunion.

Most of my classmates from school and college have moved to the US. This is the time of the year when many of them have come down to India for a vacation. So, it is a good opportunity to catch up on the last so many years of our lives.

My school has an official reunion every year around this time and I attended it for the first time this year and got a chance to meet with so many people for the first time after about 15 years!

The rest of the reunions were more informal. Motley groups of people meeting for the first time after college. Or a group of colleagues working for Effigent meeting after a long time since some of them had moved to the US some time back.

The advent of social networking sites such as Orkut and Facebook have facilitated a lot of these reunions. I am fairly certain I would have gone through life without even knowing what many of my friends from school or college did had it not been for these sites. It is really nice to know how life has been for these folks. Some of their stories are so intriguing and fascinating; I would never have known about them.

Some people have done extremely well in life, some not so well, some have failed. You realize how different the world is when you get out of college and start working. Many innate talents and unrecognized abilities bloom. Your real capability is tested. Examinations and marks, so important during the academic career often turn out to be erroneous indicators of a person's true worth. I have come across many examples of poor or average students doing so well in life.

I have had a great time these past few weeks, meeting a myriad mix of people. I was meeting a different bunch almost every other day!

With all this reunion hungama going on, a group of former colleagues from Effigent suddenly got josh and have decided to have their own reunion. All of us are in Hyderabad and have been meeting regularly but we have not met as a group. So, what the hell? We will also have our own reunion!

Saturday, January 10, 2009

Get the truckers on the road again; use ESMA

The truckers strike is causing unbelievable chaos in the country. The price rise in commodities is one thing. I am affected as a dialyzor.

I use many consumables that are transported from different parts of the country. One of these is Low Calcium Acid solution. The regular acid solution will not work for me because it has too much calcium and the excess calcium is absorbed by my blood and eventually can cause the walls of my veins and arteries to thicken which is not a good thing.

This low calcium solution needs to be brought from Chennai because the factory that was manufacturing it in Hyderabad is shut for some reason. This solution cannot be got because of the transport strike.

I am sure many others face similar problems leading to great frustration, loss of income and most importantly, causing an increased health risk.

The government must act immediately and sternly. Invoke the Essential Services Maintenance Act. Bring the striking truckers to book. However just their demands might be, this is no way to get them fulfilled. They cannot play with the lives of people.

Friday, January 9, 2009

In search of the perfect Rotla

What better way to start a winter morning than 'Rotla-dahi-marcha'?!

Rotla - Gujarati for 'Bajre ki roti' is made from 'bajra ata' or pearl millet flour. The flour is made into a dough by adding water and kneading. From here there are two ways to proceed. One is the traditional 'Kutchi' way where a ball of dough is taken in the hands and the palms are spread out and the dough is pressed to slowly flatten it out. Only the palms of the hands are used to turn it into the final size and shape. Slowly, firmly and steadily. The other way is to use the good old 'belan' or the rolling pin to flatten it out and get it to the desired dimensions. Needless to say, the former method results in the best 'rotlas'. After this, the 'rotla' is cooked either on a 'tava' or in an earthen pot with a fire beneath.



The 'rotla' is an ideal winter dish. It can be had in a variety of ways. It is often eaten with curd and green chillies with 'tadka' - or 'vagharela marcha'. Another popular combination is 'rotla-godh-chaas' where the 'rotla' is eaten with jaggery and buttermilk. One of my favorite combinations is eating the 'rotla' with brinjal curry. The two go very well together.

Unfortunately the 'rotla' is made in a very few places using the traditional method (with the hands without using a rolling pin). I really enjoy these 'rotlas'. The process of making them is very time-consuming however. Traditional Kutchi households still make them. Whenever any of my family friends or relatives visit Kutch, I make sure they bring back a bunch of 'rotlas' for me!

People who have not been initiated to the 'rotla' can find its look quite ordinary. I have often heard phrases like 'poor man's food' being associated with it! Make no mistake however. Once you are hooked to it, it is indeed difficult to stay away from it for too long!

Rarely will you find a Kutchi who does not love his 'rotla' in the harsh winters of Kutch. The 'bajra' that goes into it helps keep the body warm. The best 'bajra' is also available in the winter months. Nature's way of teaching us what to eat when, I guess!

Thursday, January 8, 2009

When your work and passion converge

People who make a living out of their passion are the lucky ones. For them, work is no longer 'work'. They enjoy every moment of their day and lead very fulfilling lives.

I have written about my music teacher from school, Dennis Powell who was doing this.

Another person who is lucky enough to be doing this is Timothy Marthand. Tim was my classmate at school for a year. He eventually got into playing the piano and has never looked back. He now performs at concerts all over the world.


The piano is the center of his world. Everything revolves around it. He does yoga to strengthen his body so that his fingers get the support they require to be able to practice for hours to give him the perfection this art requires.

When your work is your passion, you don't really feel that you are working. We spend most of our waking life at work. So, if this time is spent on doing something you really enjoy, nothing could be better.

I am reading the book "The monk who sold his Ferrari" and there is one very important concept in the book which can be summarized in this line from the book:

"Find out what you truly love to do and then direct all your energy towards doing it."

Many of us don't know what we truly love to do. Some of us who do know this find it difficult to actually make a career out of it. The book advises us to make some effort in finding out what it is that really excites us.

My work currently is also quite good. I enjoy it. But I'm not sure if it is 'my calling'. I'm not sure if this is 'it'.

Wednesday, January 7, 2009

Juggling the opinions of multiple doctors

I see a multitude of doctors. The main doctor is my nephrologist because my primary problem is with the kidneys and all the others are offshoots of this. Then, I need to consult with a cardiologist for my LVH, a gastroenterologist for liver related issues, a neurophysician for my neuropathy and a General Practitioner for everything in between.

The problem with medical science is that there are no definitive standards. And it cannot be any other way. Everybody is different. There cannot be a single line of diagnosis and treatment in different people. This leads to a lot of subjectivity in a particular doctor's approach to treatment.

For example, for my neuropathy, the neurophysician prescribed certain drugs. They don't seem to be helping. The GP wonders why those particular drugs were prescribed. He said there were other better drugs available. Now, the neurophysician is supposed to be the expert on this. What do I make of this?

There is again a marked difference in the way younger doctors treat their patients compared to those from a slightly older generation. Younger doctors tend to be a little more aggressive and are usually up-to-date in their knowledge because of the ease with which they use the internet. Older doctors tend to adopt more 'safe' methods.

In all this confusion, it can be quite unnerving for the patient. He is left wondering whose advice to follow. After all, it is his life that is at stake.

One thing that I have learned over the years is to trust your common sense. You know your body the best. Even if you do not have a medical degree, you are a little bit of an expert when it comes to your body. Talk to your docs and understand the rationale. Be well read. And then take your own decision.

It may be quite daunting to do this but believe me, it is the only way out.

Saturday, January 3, 2009

Dialysis in India - where do we go from here?

Advocacy - that's the most important thing for dialysis patients today. More importantly, patients need to advocate for themselves. When diagnosed with kidney failure and the need to go on dialysis, people should not treat this like its the end of the road.

With the number of options available today, they can lead very good lives compared to what was possible several years back. And things are only getting better. We have already started hearing about wearable dialysis devices with which we can literally get dialysis 24 X 7. This is almost equivalent to having healthy kidneys.

Even today, we have many options. A transplant for me is the second best option. Behind nocturnal home hemo. And this is being supported by many researchers using scientific methods and data.

We need to do a few things to make sure Indians on dialysis have access to these amazing therapies. Lack of knowledge and awareness should never cause us to accept the 'default' that is thrown at us.

Here is what I would advice patients:

- If you have been diagnosed with kidney disease but do not need dialysis, read up as much as you can on your specific disease. Today, many drugs and treatments can delay the onset of kidney failure and subsequent need for dialysis by many years. Don't assume that your doctor knows everything. Get onto the internet and join mailing lists. There are plenty of resources on the internet. Discuss what you have found out with your nephrologist. Doctors these days are very receptive to such patients.

- If you need dialysis, DO NOT accept in-center hemodialysis without a fight. Find out about Peritoneal Dialysis and Home Hemodialysis. Ask the nephrologist to explain why he or she thinks you are suitable for any therapy he recommends and not others. Do not be diffident. This is your body and your life. There are many people doing both these therapies in India. Even on dialysis, keep reading up on the internet. Be a part of mailing lists relevant to your modality. These are excellent sources of help, inspiration and advice. Only fellow dialyzors can understand what you are going through. Not your doc, not your family, not your friends.

- Try to work. Even if for a few hours every day. Maybe from home if you are too tired to go to an office (though the ideal thing is to go to an office - gets you out of home - gives you a change). Work can be the most amazing palliative. You get a chance to think about things other than your health and associated problems.

- Do some exercise. Start slowly. Do a little every day. Do what you enjoy. For example, a game you enjoy might be easier to do than just walking. But try to do some exercise every day. This really goes a long way in keeping you physically and mentally fit.

Talk to your nephrologist of course, before doing any of the above.

Nephrologists have the most important role to play apart from the patient in the patient's overall well-being. They should really start thinking out of the box. They need to really understand what a person on dialysis goes through. One very important thing nephs do not understand is the fluid restriction. Understand that the whole concept of fluid restriction has nothing, absolutely nothing to do with thirst. Strange as it may sound, give a person on dialysis all the water that flows in the world today. At the end of it he will still want more. Only fellow dialyzors will understand this.

To summarize, what I strongly believe we need is:
  • Better education of patients
  • Providing all the choices of modality and let the patient make the final choice
  • Expand emergency medical management
  • Expand Arogyasree to cover atleast PD
  • Form a National Dialysis Registry
These would really be the first steps in improving the quality of life that Dialysis patients in India are entitled to.

Friday, January 2, 2009

Dialysis in India - the need for a registry

I am not aware of any dialysis registry that exists in India. If I am wrong, please correct me.

Why is this important?

In a country like India, you cannot escape the size of the population. By implication, you are always dealing with huge problems. Problems that affect a large number of people, problems that require a large quantum of resources to be fixed and problems, which if resolved, will benefit a large section of society.

Due to this, you need large institutions like the government or big corporations to be involved to even hope of making any difference. To be able to involve them in anything, you need data. By simply showing them someone who died due to the lack of dialysis will not change anything.

We need data to be collected about everything related to dialysis across the country. We need a list of all the centers offering dialysis, the number of treatments offered every day, the demographics of the patients, the dialysis modality, so many other things.

If we do not have these numbers, it is impossible to estimate the size of the problem. And without this, any measures that are taken will not yield the desired results.

And it is not that difficult. We have the whole country divided into states each of which has a capital. And there are not a whole lot of centers offering dialysis today. If someone dedicated from each capital can be involved in this exercise, the registry can be built in a matter of months.

This will help so many people.

The government can use this data to identify which areas need more dialysis centers. Corporates can use it to fund special programs targeting dialysis patients. Medical companies can decide which areas need special attention. Patients will benefit greatly because they will know where to go in case they have a problem.

Travel will become that much simpler. Dialysis centers can facilitate 'dialysis-on-vacation' much more easily.

This kind of data can really be invaluable to all concerned. But we need some organization (akin to the many organizations that exist in the US) that can drive this effort and take it to the next level. Without someone constantly endeavoring to do this, things will only remain where they currently are.

Thursday, January 1, 2009

Dialysis in India - costs, the biggest problem

Most people pay for their own medical treatment in India, kidney related or otherwise. Only people working for the government or large corporations have their medical expenses covered. While this is all right for minor problems that are transient, it can be a lifelong nightmare for chronic conditions.

The cost of one session of hemodialysis is about Rs. 1,200 when the dialyzer and tubings are reused. When a new set is used, it can be about Rs 2,000. This is probably the average cost across India. It could be higher in places like Mumbai and lower in the smaller cities. For someone who does three sessions per week which is the bare minimum, the cost comes to about Rs. 15,000 per month. Add to this, the cost of Erythropoetin, lab tests, doctor consultations and other medicines. The total cost of treatment, then, is atleast, about Rs. 25,000 per month. Friends in the US, please do not convert to dollars and say that is quite cheap. Indians earn in Rupees, remember?

The average Indian cannot afford this expense. I personally know many people who had to undergo the agony of knowing that a treatment is available but they did not have the money to pay for it. Or people who had enough money only for one or two treatments per week. They would come in for dialysis in a terrible shape, totally breathless because of the fluid build-up. Inevitably, you would stop seeing them after a few months.

My gut wrenches when I think of these people. That's when I think - why do we need to send a rocket to the moon when we have thousands of people dying because of the lack of money to be able to afford a life-saving treatment. And we are talking about in-center hemodialysis which is only 'adequate', far from 'optimal'. Will we ever reach a stage when we start talking about optimal dialysis for everyone when we are far, far away from even adequate dialysis?

The problems in India are very different from those in countries like the US. The large population means an even greater number of people needing dialysis. The government does provide free dialysis in hospitals run by the state. But these units leave a lot to be desired. The number of sessions available are also much less than what is required. Government programs like Arogyasree are definitely a step in the right direction. The more I think about it, the more I wonder about how on earth this came about. Whoever conceptualized this really needs to be commended.

In the US, as I mentioned in the first of these posts, there is a lot of discussion going on about optimal dialysis and the measure of good dialysis. They say Kt/V is not a good measure. I have been on dialysis for more than 11 years and I have not had my Kt/V measured even once on hemo. A discussion on whether that measure is good enough or not is moot. Truly, things are very different here.

Here the priority is providing minimal dialysis to everyone that requires it - to save lives. The priority is really not optimal dialysis.