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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Today, I went for the monthly distribution of coupons that subsidize dialysis for people who cannot afford it by the Jain Dialysis Trust. These visits are truly humbling. When I see the work the trust is doing, my head simply bows down before them. It is not easy to save a human life. Yet, these people have saved at least a couple of hundred.

I happened to meet a young guy, on dialysis for a couple of months now. I introduced myself to him and chatted about his background and history with renal disease. I then asked him about a transplant. He said he was not told by his doctor about that option but had heard about it and was exploring it.

I wonder why he wasn't told about that option? Was any education given to him at all about his options? Was PD mentioned? Or was he simply condemned to a life of hemodialysis??

Who will educate patients if it is not for the doctors? Every patient does not have access to the internet. Even those who do may not be proactive enough or feel the necessity to look this up.

A simple talk about the different options doesn't take too long. Is that too much to ask? Tell me, someone please!

... http://www.kamaldshah.com/2011/04/criminal-act-of-not-educating-patients.html

Saturday, 23 April 2011 05:12

Grim truths that nobody wants to talk about


I met someone today. I'll call him Vishnu. He has been on dialysis for the last seven years. Like most other people, he has spent a fortune on his disease (a few lakhs). His parents died a few years back. He has a brother and a sister. Both don't feel the need to look after him.

Vishnu gets dialysis under the government's Aarogyasri scheme. He was all praise for the quality of dialysis offered at the Aarogyasri unit run by BBraun at Secunderabad's Gandhi Hospital. He said he used to get a lot of chills at other hospitals where he paid and got dialysis but after shifting to Gandhi Hospital, he has not had that problem. All patients get very good quality dialysis, the full four hours.

Vishnu now stays at a private Old Age home even though he is only 40 years old. There he is able to get the salt restricted diet he needs. He pays around Rs. 3,000 per month including food. He is now running out of money as he is unable to work. His Hemoglobin is 6 (a dialysis patient's should be between 11 and 12.5). He used to get Erythropoietin from the Aarogyasri unit. However, it has stopped for the past few weeks. He does not get iron injections, something necessary to get his blood counts up. He used to work as an accountant at an office but had to discontinue due to his health.

Vishnu wonders why he has to pay the full fee for the bus pass when he travels to the dialysis unit when patients having other ailments get a huge discount. Ditto for blood from the Red Cross. Thalassemia patients apparently get blood at highly subsidized rates from the Red Cross. Why can't the Red Cross provide blood at the same rates to hemodialysis patients? Medicines are another pain point. Aarogyasri does not cover the medicines a dialysis patient has to take. They have to buy these medicines from pharmacies and these can be very expensive.

There is absolutely no doubt that the govenrment's Aarogyasri scheme is a revolutionary scheme and that such a scheme exists in today's India mired in corruption scandals of increasing shamelessness is a miracle. Yes, the poor can now get dialysis. But, how will they get to the center? Yes, the government is doing an excellent job in providing dialysis and preventing thousands from dying. Please also do something about their other basic needs. This will not be a huge burden for sure. But it will help people lead lives that bear some semblance to normalcy.

... http://www.kamaldshah.com/2011/04/grim-truths-that-nobody-wants-to-talk.html

The Hyderabad Kidney Foundation, supported by NephroPlus has launched a quarterly newsletter for all patients of kidney disease. Here is the first issue of the newsletter:

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... http://www.kamaldshah.com/2011/04/hyderabad-kidney-foundation-launches.html

Monday, 18 April 2011 08:44

Disposing off leftover food

Our family usually has dinner together. All of us work. So, dinner is one meal we usually have together. Many times, there is food that is leftover. When there is a lot, it is fairly simple. Put it in the fridge and if someone wants to have it the next day, heat it and eat it. Otherwise, give it to the servants.

The problem is when there is just a little left. Say, a couple of mouthfuls. What do you do about this?

I found my mother would usually convince us to finish it off or if all of us refused, she would eat it herself. She felt that the hassle of transferring that small quantity to the fridge in a vessel and then storing it there for a whole night simply outweighed the benefits! Many a time she would finish the remaining food even though she was quite full!

I used to criticize my mother asking her why she did not throw that portion? I asked her whether she preferred dumping the food in her stomach rather than the trash?! When she was full, it was always better to throw it rather than eat it, I argued.

Cut to the present.

I am home alone these days. I run into similar situations quite often. The food being cooked is for one person. Very often there is a little bit of food left. I have a few choices - put the remaining food in the fridge, throw it or eat it. Putting it in the fridge seems too much of a hassle. Throwing it - well, honestly, I cannot bring myself to throw the food. I don't know what it is. I just cannot do it. So, most of the time, I end up - well, eating it!

... http://www.kamaldshah.com/2011/04/disposing-off-leftover-food.html

Sunday, 17 April 2011 11:43

The state of diagnostics in India

I had to get a blood culture done to check for the possibility of infection due to some symptoms I was having. I went to a very reputed hospital in the city and gave my sample. Along with the sample for the culture, I also gave a sample for C-Reactive Protein (CRP), which is a marker for infection/inflammation.

A couple of days later, the reports arrived. The CRP was normal but they could isolate Eschirichia Coli bacteria in the blood culture. This was strange. Usually if there is infection, the CRP should be high. They suspected that the blood sample drawn for culture might have been contaminated. A repeat sample was drawn for the culture.

Another patient I know was asked to get her blood tested for ANA infection. She gave her sample to one of the best hospitals in the city. The report came out to be positive. For some reason, the doctor wanted to confirm the diagnosis. He had the sample sent to another very good hospital. Negative! 

In my initial years with kidney disease, blood was drawn at the same time and three samples were made and sent to three different labs in the city to check the level of Blood Urea. The reports from the three labs were different and how? One showed 85 mg/dl, another 170 mg/dl and the third 240 mg/dl.

Laboratory investigations form a critical part of medical diagnosis and treatment. How can we be treated based on such flawed systems? Many decisions are taken based on the results of these tests. How can we be confident that we are getting the right treatment? And these incidents were all pertaining to top hospitals in the city. Imagine the state of the smaller diagnostic labs.

Many years back, labs would all be operated manually. There would be rigorous training to become a lab technician. There were hardly one or two labs in a city the size of Hyderabad. Dr. Nandan Singh's labs were very famous in Hyderabad. You probably had a couple more. You went to one of these. 

These days everybody and his uncle is opening a lab. Why? Labs are no longer manual. You have fancy equipment that does most of the tests. All you need to do is to mix some chemicals with the blood and put in a tube that is connected to the equipment and the machine tells you the result. In a matter of seconds. This has made the whole process so easy that anyone by reading the instructions can do this. And that's where the problem lies. Unqualified people have begun doing these investigations. They do not realize the importance of what they are doing. So they take it easy.

The test for Serum Potassium, for example, is a very sensitive test. This test requires you to add a particular reagent to the sample, drop by drop. Adding the reagent suddenly, at one shot, can ruin the sample and you lose the sample forever. Who checks whether this has been done? No supervisor would ever know if it has not been done.The Potassium value reported can be very different in this case. The consequences of this wrong report can potentially be disastrous.

It is very important, therefore for proper regulation of these labs. Stringent quality control, good technicians and strict monitoring are extremely essential. It would be criminal on the part of these hospitals and laboratories to not put these in place.

... http://www.kamaldshah.com/2011/04/state-of-diagnostics-in-india.html

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