Kamal Shah

Kamal Shah

Hello, I'm Kamal from Hyderabad, India. I have been on dialysis for the last 13 years, six of them on PD, the rest on hemo. I have been on daily nocturnal home hemodialysis for the last four and half years. I can do pretty much everything myself. I love to travel and do short weekend trips or longer trips to places which have dialysis centers. Goa in India is a personal favorite. It is a great holiday destination and has two very good dialysis centers.

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Wednesday, 03 November 2010 22:26

Miles to go before I sleep

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

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

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

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

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

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

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

... http://www.kamaldshah.com/2010/11/miles-to-go-before-i-sleep.html


Today is Diwali - the festival of lights!

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

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

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

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

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

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

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

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

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

Bhagwan Mahavir Jain Relief Foundation Trust

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

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

If you think all this is too much a hassle but  still want to contribute, This e-mail address is being protected from spambots. You need JavaScript enabled to view it  and I could arrange for this to happen too.

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

... http://www.kamaldshah.com/2010/11/tamaso-ma-jyotirgamaya-lead-me-from.html

Sunday, 07 November 2010 00:26

Soon, it will be time to take a decision

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

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

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

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

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

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

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

Monday, 15 November 2010 21:22

On giving negative feedback

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

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

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

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

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

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

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

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

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

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