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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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Tuesday, 03 May 2011 09:52

Cheese slice cravings

I sometimes crave really badly for simple things. When I was on dialysis at Kamineni Hospital, one day I started craving for watermelons. From the next dialysis onwards, I would have a big bowl of watermelon during the first hour of dialysis. The nurses would remove that much extra fluid off!

A couple of days before my transplant in 1998, again in Kamineni Hospital, while I was actually on the dialysis machine, I had an unbearable craving for Apple Milk Shake. My parents were at home and no one was with me. I called my dad and said I simply had to have Apple Milk Shake. Promptly, Apple Milk Shake was made at home and sent with my uncle! I had such a loving family. They would do anything for me. And it was just a couple of days before my transplant!

At one point, when I was on PD, I read an article about the Darjeeling Toy Train by Mark Tully in which he mentioned that he had a cup of Darjeeling Tea every morning. That was it. I suddenly started craving uncontrollably for Darjeeling Tea. A tea-hater became a tea-addict!

This afternoon, I suddenly started craving cheese slices. I could think only about cheese slices. So, when I wound up work, I rushed to the super market and picked up a packet of whole wheat bread and cheese slices. I went home, toasted the bread, cut a few slices of tomatoes. I took one slice of cheese and put it on the hot toasted bread. I then put the slices of tomatoes on the cheese, showered a little basil and oregano and took a bite. Yummmmmy! This was so good!


As I believe, some of the best things in life are the simplest!

... http://www.kamaldshah.com/2011/05/cheese-slice-cravings.html

The Hyderabad Kidney Foundation organized a patient support group meeting this evening at NephroPlus' East Marredpally branch. All of two people showed up. One of them was a transplant recipient. The only dialysis patient who came, came at 6 p.m., a full hour behind schedule and I suspect he came to get a missed Erythropoietin shot.

I honestly did not expect to get a huge a crowd. I expected around 10 - 15 people to come. So, I was way off. I probably misjudged the patients.

Here is how a hemodialysis patient probably thinks: "The three times that I need to go to a (expletive) hospital are the three worst times of my (expletive) week. And you want me to come on my day off to a (expletive) hospital!"

So, the patients are probably going to do everything they can to stay away from anything remotely resembling a hospital - let alone a standalone dialysis center! Hemodialysis also drains many of them out so completely that they barely have the energy to do anything. If they actually have energy left, why would they make an effort to go for a boring support group meeting?

We had informed a few PD folks too to come. The sole reason PD folks do PD are that they don't want anything to do with HD. Most PD patients are leading totally normal lives anyway. So they don't really need any support. So, why would they come for the meeting?

Where does that leave the support group initiative? Search me!

... http://www.kamaldshah.com/2011/04/those-on-hd-dont-have-strength-to-come.html

Friday, 29 April 2011 10:12

Root vegetables and me

(Note: This post is best avoided by non-Jains. You just may not get it.)

I was born a Jain. Jainism is a great religion. Like all religions, Jainism has also been interpreted differently by different people through time. That is why you have sects and sub-sects. A common thread that runs through all sects apart from the basic principles is not eating root vegetables - potatoes, onions, ginger, garlic etc.

I have been an on-and-off eater of root vegetables. When I was diagnosed with kidney disease in 1997, I was off roots. I stayed like that through the first few years. I was fairly strict about it. I understood the significance of it and was a stauch follower of most aspects of my religion. Hence root vegetables were a strict no-no.

Over the years with kidney disease, I tried a lot of alternate therapies that claimed to cure kidney disease. Each came with its own diet restrictions. Fluid restrictions were of course always there. At times I was in a situation where the alternate medicine therapist would have one set of diet restrictions and the regular doctors (allopathic) would impose another set of restrictions. The only way out was to eat only what was allowed by the intersection of both diets! At one time, I was allowed only buttermilk and rice with a hint of moong dal for breakfast, lunch and dinner!

When you are subjected to such diet restrictions (especially with me being such a foodie), you take it up to a point. After that, something inside you snaps. You can take it no further. And then you rebel. You say "Fuck You" to every diet restriction and go berserk. This is one of the things that happened to me. One day I decided to start eating roots.

I still eat roots. Some people in my family ridicule me for this. I honestly cannot help it. They have not been through what I've been through. As I keep saying kidney disease is more of a mental disease than a physical disease.

Coming back to Jainism, I read once on a forum for Jains, that unfortunately Jains of today have made Jainism a religion of "You can't do this. You can't do that.". Full of restrictions. Focussing too much on what you eat and drink. We have reduced it to a diet. There are so many other beautiful aspects of Jainism like Aparigraha and Anekantvad but we tend to only focus on the food part of it. Today a Jain is identified by "No Onion No Garlic" which is ridiculous.

I am not for a moment saying that eating root vegetables is right. What I am doing is wrong. No doubt about it. However, for a moment, look at the history. Then judge.

... http://www.kamaldshah.com/2011/04/root-vegetables-and-me.html

The Hyderabad Kidney Foundation is organizing patient support group meetings on the last Saturday of every month at 5 p.m. at one of the centers of NephroPlus dialysis centers. This month is the first such meeting. Its on Saturday at 5 p.m. at NephroPlus' East Marredpally center. You can get directions to the location here.

What will happen at these meetings?

Well, first there will be introductions which could be as simple as "Hi, I am Kamal" or as detailed as "Hi, I am Kamal, 25 years old, on hemodialysis for x years, followed by PD for y years, transplant for z years. I am currently working for ABC company and my hobbies are e, f and g". Totally up to you!

Then I was thinking one featured patient will share his/her story and we could have a brief Q&A. Then we could share common problems and solutions. In the end we are trying to rope in a nephrologist/dietician/expert to talk a little about one important topic followed again by a Q&A. We'll round it off with tea and biscuits. All in all, an hour and a half max.

Of course, we're open to suggestions on the format and we'll go with the flow and keep tweaking it to suit everybody's taste.

So, if you're on Hemodialysis or Peritoneal Dialysis, have received a transplant, have donated a kidney or have any other type of kidney disease and are around Hyderabad / Secunderabad on that day, we would be happy to meet you!

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

Monday, 25 April 2011 20:10

Blood leak again

It happened again last night. Thankfully it wasn't anywhere close to last time. I awoke feeling something wet on my arms. It was around 3 in the morning. To my horror I realized it was blood. I switched on the light and assessed the situation. As usual it was the arterial needle from around which blood was oozing out. The sleeve of my T Shirt was also wet with blood. It wasn't as bad as last time but there was enough blood for me to be concerned and wake Jayaram.

Jayaram removed the plasters around the arterial needle and used a piece of gauze to clean the blood around it. He then pushed the needle a little more inward and taped it again. We watched for a while. It seemed all right. We went back to sleep.

It is incidents such as these that have me worried. There are times when I dialyze alone. What if such a thing happens then? I am not sure if I will be able to manage alone. With only one hand to do things (the other hand is the one the needles are in - you can't do much with it) and blood oozing out, it can be quite a situation.

My parents made me promise that I would bever dialyze alone when they were on their US trip. Good thinking. Empty bravado in matters such as these can be disastrous. Well, to be fair to me, it is not to display courage that I dialyze alone. It is only for convenience. Jayaram comes very late sometimes. And he has to leave at 5 in the morning. That sometimes leaves me very little time for dialysis - and sleep. If I start on my own, I can get both - good dialysis and 7 - 8 hours of sleep. Also he does not come on Sundays and I have been wanting to dialyze on Sundays as well. This results in me dialyzing all by myself the entire night.

But with things like these happening, I am not sure I should take such liberties at all.

... http://www.kamaldshah.com/2011/04/blood-leak-again.html

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