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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The first time I got my US visa was just after engineering college. I got a student visa (F1). Within a few days, I was diagnosed with kidney disease and couldn't go. After many years, I applied for a work visa (L1). The case went into Administrative Processing and I was granted the visa after about two months. I however did not end up going because the company needed me here.

Cut to last year. I decided to go on a cruise with my friends. I applied for my US visa again, this time a tourist visa. The interview went well. But drat! Again Administrative Processing. This time it took a full four months before I was granted the visa!

Next, the Canadian visa. The cruise starts from Vancouver, Canada. So, I needed a Canadian visa. Now for someone who has a US visa, a Canadian visa is usually a breeze. But no, my visa was refused. I applied again. Refused again!

By this time, I remembered a good friend, Srinivas Palepu's words, "Don't fight nature too hard!" Was the universe telling me not to go to the US/Canada?

I had almost decided but my friends convinced me to re-apply which I eventually did. Finally I got the Canadian visa. I am scheduled to leave for the trip on 12th of July.

So, what is the truth? Should you take heed of such 'signs' from nature or the Universe and take the hint? Or is this all baloney? I fought and got the visa in the end, you see?

I don't know, really!

... http://www.kamaldshah.com/2012/06/listen-to-whispers-of-universe-or-fight.html

I am going to let you into a little secret: my Canadian visa application was refused. Twice. My whole trip to the US and Canada was in jeopardy. I was thinking of calling the whole trip off. My parents thought I should go ahead with the rest of the trip. However, the main reason I had wanted to go on this trip was a cruise to Alaska which started from Vancouver in Canada. The best part: they had dialysis on the ship!

Another highlight of my trip was going to be the 'Maid of the Mist' ride in the Niagara Falls from the Canadian side of the falls.

Both these would not be possible. Why spend a bomb on something I was not very keen on in the first place? That is what I thought.

I let my friends from college, Chetan, Dinesh and Kamal Kumar (yes, he's my namesake) - they were coming with me on the cruise with their families, they were doing the cruise only for me, Chetan and Dinesh stay in the US, Kamal Kumar in Canada - know about this. They were all very disappointed. They touched base among themselves and decided to convince me to give the visa one more shot. This time they sent their cruise confirmations and we added a lot more documentation. My friend Kamal Kumar got in touch with - hold your breath - the Canadian Prime Minister's office!! He actually managed to find out the file notes on my visa file! We got to know the reasons for the refusal and point by point addressed the concerns. I also changed the travel agent through whom I submitted my application, choosing a much more professional agent this time.

Within a week of submitting the application, I got my visa!

So, the trip is on!

However, if it wasn't for my three friends from college who convinced me to apply again - adding for good measure that they would foot the visa application fee - I would never have applied again. I would have given up on the cruise. I would have probably gone ahead with trip, albeit a short one without the cruise and the Niagara Falls. It would be like a half-hearted trip. Now it will be my original itinerary.

As soon as I got the news about the visa being granted, I sent my three buddies an email with the subject (forgive the slang!):

GOT THE F**KING CANADIAN VISA!

The email had the following content:

THE CRUISE IS ON. F**K, YEAH!

... http://www.kamaldshah.com/2012/06/chetan-dinesh-and-kamal-kumar-love-you.html

Sunday, 10 June 2012 10:47

When did India lose her innocence?

This morning, a friend posted this video on Facebook:


Immediately. memories of childhood came back to me. Ha, those were innocent times! Such a sweet video. I often wonder where that innocence has gone? India has changed. Indians have changed. We have changed.

I remember the times when my whole family, my extended family comprising of my father's brothers, their families, their cousins and their families used to meet so often. Most of us stayed at the Chandralok Complex near Secunderabad's Paradise X roads. Every now and then we would all meet for lunch or dinner and have such a great time together.

Everyone was less busy. We did not have so many luxuries. We had the 'bare necessities'. Still we were all so content. We were all truly happy. We had one vehicle per family - some had a car, some had a scooter. Still, no one complained.

When I think about when all this changed, I feel it is when Manmohan Singh and Narasimha Rao brought about liberalization in the 90s that things changed. After this gradually, we all suddenly grew up as a population.

I am not for a moment suggesting that it was wrong or not good for liberalization to have happened. But it did have a flip side as well. India, as a country grew up then. And lost her innocence.

... http://www.kamaldshah.com/2012/06/when-did-india-lose-her-innocence.html

Monday, 04 June 2012 20:48

Patient support group

For the last two months,  a small group of dialysis patients has been meeting once a month to discuss mutual problems and share tips on coping with kidney disease. We meet at NephroPlus' East Marredpally center at 5 p.m. on the first Saturday every month.

The concept of a support group is really great. Only someone on dialysis can understand what fluid restriction means. Only another person on dialysis can understand why I never keep a bottle full of water near me. There are these very minute, specific things that people on dialysis share which nobody else can even begin to imagine and think about.

It is not a very structured discussion. It is more of an informal sharing of problems and solutions. And yes, invariably, 'mind issues' come up once in a way.

The way ahead, I feel, to make it more meaningful by having a topic and may be an expert speak and answer questions followed by a discussion.

Getting more patients to participate is important. The trouble is many dialysis patients are overwhelmed with their day to day problems. They have no time or inclination to get involved in things such as support groups. The concept is generally still alien to our society. People don't see the benefit. So, they probably don't like the idea of going on their non-dialysis time to discuss - of all things, dialysis!

There is still an element of denial among many patients. I have talked to some patients who don't want to feel like they're patients and they feel they're reminded about their 'patient' status. Going for these support group meetings makes them feel like there's something wrong with them!

What I would like to say to them is that there is nothing wrong in being a patient. It is not something you did wrong that you have to be ashamed of. It is a reality of life. The sooner you accept it the better it is for you. Talking to other patients helps me cope with my disease. I am sure it helps others as well. When I talk to others having similar problems as me, it reinforces the fact that I am not alone facing this. There are others like me as well. This can be a very powerful feeling.

If you are on dialysis and would like to join us, please walk in to the NephroPlus East Marredpally center on the first Saturday of every month at 5 p.m.


... http://www.kamaldshah.com/2012/06/patient-support-group.html

I read this blog post yesterday by Sharon Whipkey about going on a holiday to Italy to her daughter's house. Sharon  went with her NxStage System One, did not have to miss her regular dialysis, did what normal people would do and probably, did not have to watch her diet and fluids! Sharon says, "It is a small miracle to be a dialysis patient and travel any where without going in-center for therapy."

So true!

The fortunate people of this world who have access to the NxStage System One are living their lives fully without any restrictions on travel. Yes, I am happy for my access to nocturnal dialysis and the ability to lead a normal life in terms of work, exercise, diet and fluid. But, like all humans, I am greedy. I want more 'normal' too! I want the ability to travel unhindered.

My parents are back from a fantastic trip to Darjeeling and Gangtok. I had half a mind to go. The problem was the usual one. The closest dialysis center was a good three hour drive away from these places. Not only that, I would need to dialyze in-center and that too not daily. Which means I would have diet and fluid restrictions. Which means my holiday would suck!

To me a holiday is not a holiday if I need to watch my fluids and diet. A holiday is not a holiday if I need to spend 4 - 5 of my waking hours on the dialysis machine every other day!

The NxStage System One solves all these problems. You can get nocturnal dialysis on a holiday in the comfort of wherever you are - a hotel room, a friend's house or even down a river!

The thought that is going through my mind at this point is this: Give me the NxStage. I will not ask for Eculizumab.

Eculizumab is the only way I can get a successful transplant. Without Eculizumab, I cannot opt for a transplant because my primary disease atypical HUS will recur (90% chances). With Eculizumab, the chances of success are 90%! The drug is not available in India and even abroad, the cost runs into crores of rupees.

However, I promise, if you give me the NxStage machine, I will never ask for Eculizumab. I will not ask for a transplant. I will happily spend what's left of my life on this machine. I swear.

... http://www.kamaldshah.com/2012/05/give-me-nxstage-system-one-i-will-not.html

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