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

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

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

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

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

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

... http://www.kamaldshah.com/2010/11/guzaarish-india-first-film-that-shows.html

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Saturday, 20 November 2010 06:32

How many times do you have to get it done?

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

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

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

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

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

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

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

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

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

... http://www.kamaldshah.com/2010/11/how-many-times-do-you-have-to-get-it.html

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Wednesday, 17 November 2010 21:14

No point in setting Airtel caller tunes

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

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

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

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

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

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

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

... http://www.kamaldshah.com/2010/11/no-point-in-setting-airtel-caller-tunes.html

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Tuesday, 16 November 2010 20:50

The McKinsey chapati

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

"Vegetables with chapatis", I answered.

"Wow!", he exclaimed.

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

There was more to come, however.

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

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

"Awesome!", he responded!!

... http://www.kamaldshah.com/2010/11/mckinsey-chapati.html

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Monday, 15 November 2010 21:22

On giving negative feedback

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

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

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

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

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

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

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

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

... http://www.kamaldshah.com/2010/11/on-giving-negative-feedback.html

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I’ve always enjoyed Science Fiction.  For two reasons:  One, it’s hugely escapist, taking me from a rainy afternoon on the couch to an alien settlement on the frontier of our federation or to a future where mental man simply thinks of something to make it happen.  Two, it expands my thinking with new ideas of the possible (or desirable). Who wouldn’t like to download their brain into permanent memory, or live for centuries free of the constraints of the body?

Another powerful Sci Fi benefit is that way-out ideas often become reality within a few years. Asimov invented the term “Robotics”, now they are manufacturing cars; Princess Leia asked Obi Wan for help via a projected 3D hologram, and one is due within a few months; scientists have actually started teleporting things (very little things) from one place to another, just like Captain Kirk; genetic manipulation is a reality.

It’s in this spirit that I have decided to create a few visions of future BigD.  There seems to be very little new in the dialysis department, and it’s time we had a few ideas to hang our dreams on.

So, I’m thinking short term – the next 10 years and medium term – the next 15 years.  And long term?  Things are changing so quickly, we may be a different species by then.

Short Term

We are making great strides in biomedical science, but I think we will still be cleaning the toxins directly from our blood in 10 years.  The two big downers of dialysis currently are the time it takes and the needles (in that order).  These are related problems: the time it takes to clean the blood depends on how much we can clean at one time.  With needles, and a fairly slow pump speed, the answer is not much.  Here are a few ideas that get rid of the needles and/or cut down the time it takes:

My Blood Bank. Early in 2013 we will trial complete replacement:  soon after, each of us BigD club members build up and store an additional 5.6 litres of blood (or borrow it from a blood bank) and in each BigD session we simply run out the old blood and run in the new blood.  The old blood is cleaned later, while we are living our life and we repeat the exchange at the next session.  Estimated time: 30-60 minutes.

Mum’s the Cord. In 2014, we get bigger access.  Before we were born, we exchanged our blood continuously with our mother via the umbilical cord.  What happened to that connection?  We re-create it and tap directly into the aorta for a high-speed clean.  Estimated time: 60 minutes.

Socket to Me. Permanent access sockets have been tried before and were rejected due to infection problems.  However in a successful variation, the current approach to getting started with buttonholing is to insert a plug into each needle hole for a couple of weeks, so that button hole and tunnel formation are accelerated.  Once it is formed, the plugs are removed and buttonholing can begin.  Around 2015 we will expand on this technique by growing some special sockets with cartilage “connectors” from our own tissue on a biodegradable scaffold (remember the mouse the human ear on its back)?  Maybe we will also grow the needle connectors…  Estimated BigD time: still too long, but, look, no needles.

Swallow this Pill. Around 2015, biochemists will have joined the party, by creating a chemical cocktail that identifies and binds to blood toxins to create large, easily filtered molecules.  Dialysis uses a dializer impregnated with a chemical to attract the molecules in a single pass.  Estimated time: 60 minutes.

Medium Term

By the early 2020s we will have worked out a few less intrusive ways to clean our blood.  No needles, no time sitting at a BigD machine.  Treatment will be continuous, just like our kidneys used to do it.

One small prick for mankind… In an old Star Trek Original Series Movie, Dr McCoy travelled back to the Twentieth Century and met a woman in a wheel chair.  When he finds that she is headed for dialysis, he says “How barbaric!” and gives her an injections that fixes the problem for good.

What was in that injection?  Intelligent nanofilters. Millions of the molecule-sized nanotech filters are injected (or more likely infused through the skin and make their way) into the bloodstream where they identify and bind to toxins in the blood.  They then travel to the gastrointestinal tract, reacting with the mucous lining to form large inert molecules that are eventually excreted from the body.  The nanofilters then return to the bloodstream and repeat the process.  Nanofilters can be programmed and controlled remotely and can be replaced when required.

Cell Me My new Kidney. About 2022 the first successful stem cell kidney will be grown in a lab and transplanted into a happy recipient.  By 2025 stem cell kidneys, from our own stem cells will be the standard treatment for End Stage Kidney Failure.  Stem cells will initially be embedded by surgery, but eventually they will be transported to the replacement site via nano technology carriers.

So, the New, Better BigD vision begins.  These ideas have been floating around in my head for a while.  Some may be possible, others maybe not.  But let’s start putting ideas down: everyone, everywhere.  And hopefully in the Short Term, a practical advance will come and turn our dream into reality!

It doesn’t matter how off-the-wall is sounds, write it down here, now.  Who knows where it will lead?

... http://bigdandme.wordpress.com/2010/11/13/future-dialysis-no-needles-no-machine-no-dialysis/

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Tuesday, 09 November 2010 20:56

Theories that sound nice but have no factual basis

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

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

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

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

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

... http://www.kamaldshah.com/2010/11/theories-that-sound-nice-but-have-no.html

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Sunday, 07 November 2010 00:26

Soon, it will be time to take a decision

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

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

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

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

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

... http://www.kamaldshah.com/2010/11/soon-it-will-be-time-to-take-decision.html

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Friday, 05 November 2010 03:56

Dialysis, travel and getting a job

Written by Greg Collette
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Krishna emailed me last week with a work/life/travel query that I thought may be of interest to other BigD members.

My name is Krishna, I’m 24 years old and have been on dialysis after a failed transplant from my mother for the past 2 years.  I live, study and dialyse in Chennai, India. I accidentally chanced upon your blog “BigD and me” and it is such an interesting outlook on dialysis! I am studying to become a lawyer, and found your blog when I was looking for dialysis options in Hong Kong, where I hope to be travelling to in April 2011 for a law school moot court competition. I can easily relate to all that you say on your blog and frankly, it inspires me to be a better and a positive person in general.

I have a few questions about dialysis in Hong Kong, which I thought I could ask you via email:

  1. How much did it cost you per session at HK?
  2. How much in advance did you contact your centre?
  3. What were the centre timings?

Also, on a related note, I notice you travel quite a bit on dialysis. How do you go about arranging for dialysis sessions in foreign countries? How do you know the good centres from the butchers :) ? I expect to be travelling to Vienna, Austria (as part of the same competition) and to London for an internship with a law firm, but I am quite flummoxed about setting up dialysis sessions in foreign places. Do you have any tips?

Finally, how receptive are employers to adjusting work schedules to patients who are on dialysis? I am hoping to start my career as a lawyer in about 2 years’ time, and I would like to know if there are legal provisions in the UK, US and other countries which aid in securing adjustable work schedules for patients on dialysis. Are you aware of any?

Please keep writing Greg! You’ve gotten yourself another faithful blog follower :) .

Warm regards, Krishna

Krishna it was great to hear from you and I am very pleased that you enjoy the blog.

To answer your questions re Hong Kong:

1.      How much did it cost you per session at HK?
The renal unit was at the Sanatorium & Hospitalat Happy Valley. It cost about HK$3,000 per session, this includes the cost of a consultant visit.

2.      How much in advance did you contact your centre?
I made arrangements about three weeks before my trip.  They speak English and respond quickly.

3.      What were the centre timings?
The centre is open from 0700 to 2000.  I started each session around 0830.  They seem pretty flexible.

Regarding travel and choosing a reliable service, Western Europe is fine.  Holiday dialysis is a well-worn path.  One drawback is that the services are usually quite expensive, sometimes up to US$1,000 per session.  Ask before you commit.  For contact details, check out http://www.globaldialysis.com/.  They have a great network.

Travel on dialysis is no great burden.  You are already used to the time commitment, and it can be quite fun seeing all the different approaches and techniques as you travel (not to mention the people!).  The cost is a pain, but I think the best thing to do is think of it as part of the travel cost for BigD members:  an unavoidable expense.

Regarding work and the BigD, I don’t know of any legal provisions for employers to smooth the job hunt but I do know many people who work on dialysis.  While employers reactions vary, most are pretty flexible.  The ideal approach is to share the load.  If you dialyse three times a week, maybe set up one session after work hours, one that maybe starts an hour before you would normally leave work, and one early in the day (say 7am or earlier) that allows you to start work by lunchtime.  Or select other quiet times if those hours are busy.

Let your employer know that you dialyse, tell them that you will try  to minimise the impact, and that maybe instead of working 40 hrs per week, you can work 30 or 35 hrs.  Also, you can always read work stuff, take calls and answer emails while you are on the machine.  One of the guys in our unit was an operations manager.  He was always communicating, answering queries, organising people.  He picked up the phone as soon as he was connected and didn’t put it down again until he was coming off.  He was amazing.  You will find you own level.

There are other options, including night dialysis.  This has real benefits, and once you are used to it, it frees you for work (and play) through the day.  I will write more about the latest in nocturnal BigD in my next post.

The key is not to hold back.  If you want to travel, give it a go now!  It you are worried about employment, contact prospective firms now and ask.  I am sure you will be surprised how far and fast things will move for you.

Good luck with the competitions and keep in touch. I hope we meet in some distant renal unit sooner rather than later!

Regards, Greg

... http://bigdandme.wordpress.com/2010/11/05/dialysis-travel-and-getting-a-job/

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