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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Saturday, 12 February 2011 18:20

Back under the scalpel

I will be back on the operating table soon. I will be undergoing a minor surgery on Monday at 10 a.m. at Medwin Hospitals. This is unrelated to my kidney disease.

I trust Dr. M. G. Rama Rao, the surgeon who is going to perform the surgery. I have been seeing him for this problem for the last three years. He is a down-to-earth, gentle and kind doctor. Dr. Girish Narayen, my nephrologist recommended him.

The surgery in itself is not major. The thing that bothers me about these surgeries (and I have had more than my fair share) is the part where you have to fast the entire morning until well after the surgery. The other bothering thing is the part when you wake up from the general anesthesia. For a while, you wonder why the surgery has not yet started and then when you start feeling sore at the point of surgery, you realize that the surgery is over. Then you have to wait until they let you go. This wait is horrible. You are feeling sore, there is pain, you start feeling thirsty. But you have to wait for a few hours before they let you go.

At the point of the surgery itself, there will be this stabbing pain that lasts for a few days. They will put me on pain killers and antibiotics. Slowly the pain will start wearing off and hopefully, the original problem I have been operated for will be a thing of the past.

I am going to Poorna tiffins this morning as usual. I will have a few extra idlis, however so that I can bear the hunger the following morning with fortitude!

... http://www.kamaldshah.com/2011/02/back-under-scalpel.html

Friday, 11 February 2011 22:20

Aashayein - in pictures

Here is a link to some pictures from the Aashayein event. The pictures really bring out beautifully the entire event. I especially liked the pictures that showed the smiles on the faces of the patients - true, genuine, full blown smiles!


... http://www.kamaldshah.com/2011/02/aashayein-in-pictures.html

Thursday, 10 February 2011 18:58

Aashayein - from the sidelines

Here are a few incidents/comments/whatever from the sidelines of Aashayein:


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I was chatting with a fellow dialysis patient, probably in his late thirties, during the lunch break. We discussed the lunch and that it was great. I asked him how many salt packets he used? (The lunch was entirely salt free and patients could take a salt sachet and sprinkle it over whatever they chose.) He told me he took two sachets since he could not eat food without salt. He asked me how many I took. I told him I also took two. Both of us burst out laughing! "Namak ke bina khaana aur woh sab - doosre patients ke liye hai, hamare liye thodi hai!", he said. (All the salt free food advice is for other patients, not for you and me!)

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One of the doctors spoke in English. Vikram translated the key points of his speech to Telugu. One of the patients called me and complained about why the speech wasn't translated to Hindi. I said that we were trying to have a mix of all three languages so that everyone would benefit. He wasn't satisfied and felt we were being partial to the Telugu speaking audience.

A little later, the next speaker started speaking in Telugu. I requested her to switch to Hindi so that those patients would also benefit. Sure enough, within a few minutes, a lady called me and complained that they could not understand anything and that we should be more mindful of the Telugu participants!

I guess you cannot satisfy everyone together!


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After the dietician, Dr. Haritha Sham concluded her talk, this was a question asked by one of the patients: "Is kidney disease a life long thing?" Huh? Now what has that got to do with the diet??

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After one of the nephrologists concluded his talk, one patient got up to ask a question: It went something like this: What is Peritoneal Dialysis? What is Hemodialysis? What is the difference? What diet can a person on dialysis take? What exercise can a dialysis patient do? Can someone on dialysis eat horse gram? Can you please reduce the rate of Cresp?

All very valid questions. And I appreciate the patient's quest for knowledge. However, sir, you must understand that this is a forum where we have extremely limited time. These questions could take up almost half a semester of an MBBS nephrology course! We can't have a speaker answer these questions at the end of a 4 minute talk! To the nephrologist's credit, he gave a quick summary in about 3-4 lines!


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I ended up getting a lot of undue credit. It all started with Vikram mentioning that I came up with the idea of this event. Actually, to be very honest with you, it was his (or Sandeep's?) idea. I was definitely very excited when I heard about it. But the idea was not mine. Vikram and Sandeep have this habit of giving me credit for things I have not done!

Then Dr. Gopal Kishen took the bait and thanked me for doing this. The patients that were attending followed suit. By the end of the day, almost everyone in the hall believed that I was responsible for all this. That was ok, to some extent. The problem started, when in all the commotion, even I started believing that!! 

When you hear something again and again (even if it is not true and especially when you like what's being said!), you tend to start believing that it is true. But since you are reading my blog, I thought you should know the inside story. 

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In the end, of course, patients had a great day. We continue to receive compliments for the successful event. Of course, we intend to make Hyderabad Kidney Foundation what people expect it to be. May be I did not actually come up with this idea. I will, however, take it to fruition.

... http://www.kamaldshah.com/2011/02/aashayein-from-sidelines.html

Wednesday, 09 February 2011 20:51

Aashayein - a resounding success!

Aashayein, the first-ever exclusive event for dialysis patients was a huge success! At one point, a few weeks before the event, Vikram, Sandeep and I were worried about how we can make sure that there are at least a hundred people in all that turn up for the event. In the end there were more than 600! And half of them were patients! By any standards, the event was a hit.

For the first time, 300 patient with a similar set of problems gathered together under one roof and talked to each other, heard people talking about their problems and most importantly - had fun.

The event kicked off with Vikram's welcome address where he described how we came up with this idea. I, as MC of the event, introduced the Hyderabad Kidney Foundation (HKF), its objectives and the plans and then invited the father of Nephrology in Andhra Pradesh, Dr. Gopal Kishen and Joseph Rajshekhar, on dialysis for the last 18 years to formally launch HKF by lighting the lamp.

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Then we had a few talks by Dr. Gopal Kishen, Joseph Rajshekhar, Dr. Sree Bhushan Raju, Senior Nephrologist at NIMS, Dr. Krishnan, Senior Nephrologist at Apollo Hospitals and Dr. Haritha Shyam, Chief Dietician, Apollo Hospitals.

We also had Madhur Deep, a transplant recipient who shared his experience on getting a transplant. Srinivas Perisetty, husband of Monadipa who is on dialysis gave his perspective on how the family of someone afflicted with kidney disease should cope with this. There was also a Yoga demonstration on some simple but beneficial breathing techniques.

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Every talk was interspersed with some entertainment for the patients. There was a mimicry show by Mimicry Hari Kishen, himself a dialysis patient who had the patients in splits with his jokes relevant to people on dialysis, a definite first in India! There was a skit performed by dialysis patients called 'The 7 o' clock shift' which poked fun at the various little incidents that happen in a typical shift in a dialysis unit.

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The 7 o' clock shift

We also organized some 'antakshari' type questions for the audience with a prize for each question.


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Patient being given a prize for answering an Antakshari question

The lunch was an elaborate renal friendly affair. Patient could eat everything on the menu for a change without worrying about how much salt it had or whether the vegetables were leached. There was a role reversal of sorts. Caretakers had a very simple menu - biryani and raitha whereas patients had a very elaborate menu! After all it was their our day!

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A sumptuous lunch for patients


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A simple lunch for caretakers!

After lunch we announced the winner of the best fistula contest and had some patients come and present their talent. Some did songs, some did jokes. In the end we had two rounds of Tombola. Every patient was given out a bunch of goodies which included injections, a bag customized for dialysis sessions and other stuff mostly relevant to dialysis patients.

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Winner of The Best Fistula contest

After the event, many patients came up to us and thanked us immensely for organizing this. For the first time, someone thought about them and this touched them deeply.

Dr. Reddy's sponsored this event along with NephroPlus and full credit to both the sponsors for making this happen.

... http://www.kamaldshah.com/2011/02/aashayein-resounding-success.html

Wednesday, 02 February 2011 21:40

Aashayein - three days to go!

Its three days to go for Aashayein - the first ever event for dialysis patients. Am I excited or what? The tension is palpable. I can almost hear my heart beat. I can barely think about anything else. I am sure Vikram and Sandeep are in a similar state of mind! It is a huge event. The first time we are doing something on this scale.

The response has been overwhelming. We are already overbooked. People registering now are being put on a wait list. In case there are any last minute cancellations, they will be invited. The resources we have are limited. The space that we have is limited. So, there is no other option but to restrict the number of participants.

I took a few calls for registration. I could feel the excitement in the patients' voices about this event. It was the first time someone was thinking about them. There have been numerous events for doctors. None for patients.

The support by the nephrologists also has been excellent. All of them were very encouraging. I am hoping many of them will also come for the event, even if for some time.

Like any other event, there have been last minute surprises as well. Some changes in the speakers were also necessitated.

Yesterday, Sandeep and I went for a trial of the lunch. This was the first time the hotel was preparing food with leached vegetables and without salt. Today we are having a full rehearsal of the skit in the morning at the Banjara Hills center of NephroPlus.

Let's hope everything goes well!

And by the way - if you are a dialysis patient in Hyderabad, please come for the event!

... http://www.kamaldshah.com/2011/02/aashayein-three-days-to-go.html

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