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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Friday, 30 September 2011 11:13

The 48 hour birthday

I celebrated my 26th birthday on the 28th. Yes, I finally started growing. I was stuck at 25 for quite a while. After a point, you have no choice but to accept your age. Gracefully. So let it be with Kamal.

So, I went to sleep the previous night. Last year, the NephroPlus team had come home in the middle of the nightand surprised me like hell. There was no way they were going to do it again. I mean, who does these kinds of things every year?! I was on dialysis. I fell asleep after a while.

Suddenly the light came on. And there they were. The NephroPlus team trooping in one by one. Even Sara and Tabassum, former NephroPlus team mates had come! They brought a cake that I cut while on dialysis. They brought a beautiful clock and some cards. The best part was the videos that they recorded of the patients that dialyze at NephroPlus wishing me. Those were very sweet. There were also videos of the NephroPlus team that couldn't make it at night. I was really touched by Dr. S. Krishnan's video. He is a senior nephrologist of the city. This entire effort was co-ordinated by Sandeep Gudibanda, fellow director at NephroPlus. I will never forget what he did for me that night.

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I couldn't sleep for almost two hours after they left.

The next morning, I went to - where else - Poorna Tiffins, had my fill of Idlis with ghee. After this I went to the Banjara Hills center where the team had decorated a part of the center with balloons and confetti and we had the cake cutting.

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After this, A Srinivas suddenly called me and suggested that we have lunch together. Sure, I said. When I reached the restaurant, I was surprised to see some other really good friends there. We had a great lunch! That evening I had dinner at my favorite restaurant with my family.

At the dinner, I was shown a video by my brother done by Dinesh, Kamal Kumar and their families. These are my friends from engineering college. That video was also so beautiful! Thanks all of you!

I thought I was done. Nope. Not so soon. The East Marredpally center team complained that they did not get a chance to do the cake cutting with me. So, next morning, I went to the East Marredpally center and we had another round of cake cutting and general hungama.


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And now a word about Facebook. Last year, I had this crazy notion that I shouldn't display my birthday on Facebook. Those who remembered my birthday would wish me, I thought. I was so wrong! I am no great celebrity! This year I realized that and changed the settings to show my birthdate. I was overwhelmed by the wishes. Almost 70 people wished me. Yes, it takes very little effort but the feeling that so many people wished me was really touching. People who I have talked to last close to twenty years back. They were wishing me! This is possible only on something like Facebook.

This birthday was probably my best ever. So much love and affection. I was moved beyond imagination. Thanks everyone who did this!

... http://www.kamaldshah.com/2011/09/48-hour-birthday.html

Tuesday, 27 September 2011 09:58

There is a solution for Restless Legs Syndrome

Many dialysis patients have something called "Restless Legs Syndrome". There is an irresistible urge to shake or move the legs and the inability to sit or lie still. This was my biggest problem many years back.

Many patients do not know how to describe this feeling. Many doctors don't know about it either. But it is a common problem. So, what happens is, let's say you're sitting (maybe at home or in a car). After a few minutes, you just have to get up and walk briskly. You just cannot sit. Or at night, when you are sleeping, suddenly you just have to shake your legs vigorously. You cannot sleep. All these are symptoms of Restless Legs Syndrome.

Remember, you are not alone. this is a common side effect of kidneys not working properly.

Luckily for us, there is a solution. If you are facing these symptoms, you should talk to your nephrologist about Gabapentin. Describe the symptoms and ask if you can use Gabapentin. It is available in doses of 100 mg and 300 mg as Neurontin in the US and Gabantin in India. Definitely do not take it without consulting your nephrologist who will assess the severity of your symptoms and decide the dosage and frequency.

This drug actually saved me from a lot of problems. It rid me of the symptoms in days.


... http://www.kamaldshah.com/2011/09/there-is-solution-for-restless-legs.html

The atypical HUS Foundation has just released a very informative brochure about the disease. The brochure can be downloaded from here.

The brochure explains the disease in simple terms and also talks about the types and the treatment options. It also has some stories of people affected by this disease. (Hint: See Page 5 of the brochure!)

It has been put together by the Foundation for Children with Atypical HUS, a group of people whose children have been affected by this disease. It also has some adults (like me) who have aHUS.

This is a very rare disease and some 300 children and a handful of adults in the US are expected to have it. It requires a very dedicated team to do any kind of research on diseases such as this because there is hardly any bang for the buck, so to speak. So, only the very academically inclined who really have a deep interest in this class of diseases or the underlying phenomena get into this.

For diseases that are more 'mainstream', any work by researchers yields a lot of benefits simply because of the volume of patients that would benefit from the work.

It is through this foundation that patients such as me can come to know about all that's happening in this small world of aHUS.

... http://www.kamaldshah.com/2011/09/informative-brochure-released-by-ahus.html

Sunday, 25 September 2011 08:28

How RSS feeds dry up our lives

I use Google Reader to track all the news I am interested in on different subjects for example, aHUS, dialysis, Apple etc. And I use the Reader app on my iPad to check the feeds and go through the stories. I also use the same mechanism to read the blogs I follow. This method however, strips out the 'soul' of the blogs - the backgrounds, sometimes the images and videos and the comments.

This is all right for news articles but not for blogs. Blogs must be read on the original site, not using a feed reader. Is there a solution for this? I had written something similar a while back here and I haven't found a solution for this yet.

Basically all I want is an app that checks the blogs I follow if there are any new posts and then show only those blogs in their original interface - exactly like they would appear if I visited the blog website.

Any suggestions?

... http://www.kamaldshah.com/2011/09/how-rss-feeds-dry-up-our-lives.html

In a significant development the FDA in the USA approved Soliris (Eculizumab) for use in atypical Hemolytic Uremic Syndrome.

To those saying, "Huh?": Read on!

Atypical Hemolytic Uremic Syndrome (aHUS) is a rare disease that afflicts mainly children and a few adults. It causes kidney failure in a lot of cases. I have that disease and it is the cause of my kidney failure.

For years, there was no treatment for aHUS. Plasmapheresis was the only thing that could be tried and that too with varying success.

Eculizumab, manufactured by Alexion Pharmaceuticals as Soliris is an extremely promising drug that has been found to be useful in the treatment of this disease. For those just diagnosed with it, treatment with this drug can prevent them for going into kidney failure to begin with.

For those like me whose kidneys have been affected by this disease, this drug offers hope of a successful transplant. Without this drug, the chances of a successful transplant for me are a pathetic 20%. With this drug, the chances of success zoom into the heady 90s!

This drug has been FDA approved for treatment in another disease called Paroxysmal Nocturnal Hemoglobinurea for a long time. Only yesterday did the FDA approve it for use in aHUS.

This is a significant moment for the aHUS community as this means the drug will be more widely available.

For me to able to use it, if course, it will need to be available in India, which is another story!

... http://www.kamaldshah.com/2011/09/fda-approves-soliris-eculizumab-for.html

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