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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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.

... http://www.kamaldshah.com/2011/06/who-will-protect-right-of-child-to-live.html

Friday, 17 June 2011 21:47

Apple, please don't discontinue iWeb

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! 

... http://www.kamaldshah.com/2011/06/apple-please-dont-discontinue-iweb.html

Thursday, 16 June 2011 08:58

Can people on dialysis eat fruits?

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!

image


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!

... http://www.kamaldshah.com/2011/06/can-people-on-dialysis-eat-fruits.html

Saturday, 11 June 2011 20:12

Internet based Nephrology Congress

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!

... http://www.kamaldshah.com/2011/06/internet-based-nephrology-congress.html

Thursday, 09 June 2011 20:24

Young with CKD

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!

... http://www.kamaldshah.com/2011/06/young-with-ckd.html

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