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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So, finally the UP election results are out. Mayawati has been ousted. The systematized loot of the state's coffers for shameless self-aggrandizement will finally come to an end. Putting up a living person's statues and that too by the person herself was surely a first even in an India used to sycophancy.

The biggest scare was when there was a remote chance of her becoming PM. It was a few years back when the Third Front had a realistic chance of forming a government at the center and her name was doing the rounds for the top post. My heart really had that sinking feeling when I read that. Mayawati as PM? Then fall India!

But then that dance called democracy that plays out every five years in our country came to the rescue and stopped the plunder. What is going to happen to the statues in the park? Of Mayawati, Kanshi Ram and those humungous elephants? I am sure they're not going to be untouched.

Which brings me to the alternative. The Samajwadi Party and Mulayam Singh Yadav. The person who has plundered the state, albeit in a less shameless fashion, five years back. God, what is going to happen to Uttar Pradesh? When is it going to get deliverance from these two sets of thugs?

... http://www.kamaldshah.com/2012/03/finally-got-rid-of-behenji-only-to-get.html

A very dear friend's father passed away last week. The reason: Coronary Artery Disease (CAD). Indians have a genetic predisposition to CAD. Thousands of years back, there was severe famine in this area. This resulted in the body adapting to the situation as it always does and over the years started storing fat within the body rather than allowing it to burn. This tendency has caused many people in this region to have CAD.

The recent trends of leading sedentary lifestyles, sitting all day in front of a computer, not having time to cook healthy, nutritious food and as a result relying on processed, junk food multiplies the risk manyfold. 

The time to act is now. Everyone is at risk. Some more than others. The best part - we can do something about it! And we must start NOW! Tomorrow is too late.

You really need not look anywhere for magic solutions. It is all very simple. Something we have heard hundreds of times. Exercise and eat healthy. Stay away from alcohol and smoking. Tension nahin lene ka. Get enough sleep. Etc. Etc. Nothing new at all. The trick, however, is to find innovative ways to do this. All of us procrastinate on these things. Exercise? "I will start from the 1st." Giving up fried food? "After my cousin's wedding."

On exercise and fried food, a great motivator is to stand nude in front of a mirror. Most of us will need no greater motivation! On stress at work, remember one thing - most of us are working to earn money so that we can lead comfortable lives or to achieve something. By getting stressed about the work, we are putting our health so much at risk that we may not be around to enjoy what we have worked for! Isn't this the supreme irony of our lives?!

The frightening part of this is that these days age is not a factor. People in their twenties are also at risk. So, stop thinking that you don't have to worry. 

As I said earlier, we must start NOW. Tomorrow is too late!

... http://www.kamaldshah.com/2012/03/coronary-artery-disease-silent-killer.html

Wednesday, 29 February 2012 20:08

Thank you Jayaram!

Yesterday was Jayaram's last day with me. Almost six years back, when I was desperate for a renal replacement therapy better than conventional in-center hemodialysis, Dr. Girish Narayen, my nephrologist had suggested daily nocturnal home hemodialysis. The whole magnitude of doing something no one in the country was doing was quite disconcerting.

At that point I was dialyzing in the KIMS dialysis unit where Jayaram was the Lead Technician. I had become very used to him cannulating me. Whenever he would be away on some other work, I would be totally scared about the cannulation. I would rarely let any other tech cannulate me. The confidence with which he went about his work was striking.

I immediately checked with him if he would come home and dialyze me. Thankfully, he agreed!

It was new for him as well. But he was not overwhelmed. Confidence was always his biggest asset. I depended on him heavily for the initial setup as well. And then we started home treatments. At first we did only short daily dialysis. Within a few weeks, we moved to nocturnal. There were issues at times. He handled all of them with ease. Blood leaks, machine problems, cannulation problems. Apart from his experience and skill, it was his self-belief that aided him.

Slowly, he became a great friend. We shared a lot. He soon taught me everything about dialysis - priming, cannulation, starting a session and eventually closing a session. Many times when he would get delayed in his day job at KIMS, I would start off on my own. At one point I started dialyzing on Sundays as well, doing everything from start to finish on my own. This was thanks wholly to Jayaram's teaching.

I in turn passed on to him my love for all things Apple. Today, he owns an iPhone 4 (which he bought before me) and a MacBook.

Jayaram is leaving because his duties at KIMS are now taking up a lot of his time and he is unable to come in time and he feels I am being put to inconvenience. He feels I should get someone else to help. Fair enough. I now have a couple of technicians from NephroPlus who will be assisting me with my dialysis. I doubt if I will ever have as close a relationship with any technician as I did with Jayaram.

Thanks for everything Jayaram!

... http://www.kamaldshah.com/2012/03/thank-you-jayaram.html

Tuesday, 28 February 2012 21:28

Today is Rare Disease Day

I have atypical Hemolytic Uremic Syndrome (aHUS). In the US, there are only about 300 people who have this disease. Most of them are children. Adult aHUS is even more rare. I am not aware of any statistics in India. Fifteen years after I was first diagnosed, I am still waiting for a cure. Eculizumab, a very promising drug has shown very good results with this disease. I will need to get access to this drug (currently not available in India) and then undergo a kidney transplant to be able to have a good chance of a life without dialysis.

Atypical HUS is what is officially called a 'rare disease'. Today, February 29th is Rare Disease Day, a day that comes rarely! Worldwide, people affected by one of the many rare diseases are commemorating the day and doing various things to improve awareness among the general population about rare diseases. There is a lot of work happening in the US and Europe in terms of lobbying with governments to improve support to find cures for rare diseases. The incentive for pharmaceutical companies is not generally high to work on cures for rare diseases because the potential customers are well, rare! So, it is important that the governments do something proactively to improve the chances for cures to be found and then be taken to the people suffering from these diseases.

I have created this small video and uploaded it to the Rare Diseases Day website and the Atypical HUS You Tube channel along with may others around the world to commemorate this day.

This is the Official Rare Disease Day video:

... http://www.kamaldshah.com/2012/02/today-is-rare-disease-day.html

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