Sunday, May 31, 2009
Saturday, May 30, 2009
In my previous job, I started out with people I already knew directly or indirectly. So they all knew. And since they knew, the new people who joined also got to know. So, in my old company, pretty much everyone knew about my kidney disease.
In my new company, after I was told I was hired, I sent an honest email to my prospective employers about my kidney disease, what it entailed and also about how I was confident that it would not interfere with my normal work. I am not sure, six months down the line, if that turned out to be entirely true. My health has affected my normal work. But not my kidney disease per se. Totally unrelated health issues. Which anyone could have had.
The rest of my co-workers however were not aware. So, they would often wonder what the ugly bulge in my left upper arm was! I would catch their eye moving to it during a conversation and then quickly move back to my eyes as I caught them doing it! I totally understand their curiosity. My fistula is quite big!
Eventually, the question did come however.
"Did you have some accident? What happened to your arm?"
I usually decide to tell the truth. My kidney disease is not something I am ashamed of. However, I won't tell unless I am asked. If I am asked, I will tell the truth.
Thursday, May 28, 2009
Wednesday, May 27, 2009
Tuesday, May 26, 2009
One major problem with kidney disease is its effect on the rest of the body. Dialysis is bad enough to deal with. When your other organs start getting effected, things can become really difficult. You start getting effected by things which are big enough to handle on their own.
Even with daily nocturnal dialysis, these side effects of kidney disease can be quite overwhelming. Its almost as if God (or whatever) says, "Ok, now you've had enough of peace for a while. Take this, and this and this. Now, let's see how you handle this!"
I often wish kidney disease was the only thing I had to manage. Its not fair really. To saddle folks with kidney disease with all these other things. Is it not enough?
Saturday, May 23, 2009
I recently learnt that someone I knew as a fellow dialyzor at the unit I went to for a few months got married to someone he was seeing for a few years. I was really happy to hear this. He was a few years younger than me, was on dialysis for a while and had a successful living related donor transplant at the same hospital. He is also working in the software industry.
This is a very tricky issue for most people. There are just too many factors at play here. The life of someone with kidney disease is already quite complicated. If you are on dialysis, you are leading a life where you have to compromise on many things. Yes, nocturnal daily dialysis does reduce the compromises that you have to make but its not as if you can lead an absolutely normal life. For people on in-center, twice or thrice a week dialysis, it is all the more difficult to balance the adjustments one has to make due to marriage with the rigors of being on dialysis.
Dialysis is often accompanied by a host of co-morbidities, conditions triggered by the lack of functioning kidneys. Almost every organ in the body can be affected. Health related issues become the central aspect of the life of a person on dialysis. Well, there are exceptions. Samiir Halady, for example. But I don't know how many people are like him.
After a transplant, things improve somewhat. But it is not all roses, either. The medication that needs to be taken after a transplant has a host of side effects. There is also the constant fear of something going wrong. The entire process takes a heavy mental toll. Also, after a few years you have to go back to being on dialysis. An understanding spouse can make a huge difference. But someone with a little less patience or understanding can ruin the life of both.
In this case, the guy and the girl were seeing each other probably before the diagnosis of CKD was made. It is really commendable that the girl stood by the guy through all the upheavals in his life and they finally got married. I don't think there are too many girls who would do that.
Tuesday, May 19, 2009
Monday, May 18, 2009
Saturday, May 16, 2009
My uncle loved to go on long drives. I was a natural traveler myself. Every Sunday, we would all head out to some place and spend a few hours before returning in the evening. These breaks offered me a chance to get away from the boredom of the daily routine of doing nothing much I had become accustomed to in Mumbai.
On one Sunday, all of us went to a new temple about a couple of hours away. The sun was scorching that day. In spite of it being January, it was quite hot! A perfect excuse to binge on water! I drank quite a lot of water that day. By the time we returned, I was quite tired. By night, I started feeling uncomfortable. I had difficulty breathing.
My uncle and aunt got me into a car. I stuck my face out of the window trying to get some air. I was literally struggling to live.
We rushed to Jaslok Hospital where I was put on emergency dialysis. They pulled off a large amount of water in the first hour. My life slowly came back to me. I gradually slid into deep sleep. When the session was over, I got up, relieved that I was still alive.
Friday, May 15, 2009
I looked on with the utmost respect and faith as the rotund doctor poured out a glass of water, brought it close to his mouth, chanted something inaudibly into it and handed it to me. I drank the glass of water.
We were given a photocopied diet restrictions chart and a recommended meal plan. Pulses were to be avoided like the plague. Most of the rest was similar to the regular kidney disease diet.
We left the place, full of hope. Hope that the four month journey that I had set out on would be the end of all my problems.
Next, we met Dr. B. V. Gandhi, a nephrologist at Jaslok Hospital. Dialysis had to be continued until the water showed its effect. We were quite upfront about why we were there. The doctor knew about Dr, Gupta and his water therapy. He did not proffer a comment on its efficacy neither did we ask him about it. He put me on twice a week dialysis, five hours each time.
The routine was set. Every morning, after getting ready, I would be driven to Dr. Gupta's office. The doctor would pour out a glass of water, chant his mantra over it quietly and I would gulp the water down. On Sundays, we would go to his house.
Dialysis would be twice a week. Each time, five hours of pure, unadulterated torture. I could hardly wait for the miracle-inducing water to start acting!
Thursday, May 14, 2009
The Left will support the Congress 'to keep the BJP out'. What kind of a reason is that? Every party has only one agenda - to keep the BJP out. If that was the sole intention of going into the elections, why did these parties not fight the elections as a single alliance? The Congress clearly stated that they are going it alone in the polls. Now they have started talking to all parties (even at the possible expense of their current allies!). If this is not political opportunism, what is?
The BJP, in contrast, has fought the elections along with its allies under the banner of the NDA. Every constituent accepted L. K. Advani as its candidate for the post of Prime Minister.
The demands that are now being made for supporting a Congress-led government have reached ridiculous levels. The Samajwadi Party is the most unabashed of them all. Amar Singh, their pimp-in-chief can justify anything. The guy really has some gall. He can sleep with the Congress and the BJP without letting either of them know. He and his party are one of the most morally bankrupt group in the country today. They have no ideology, no morals, no ethics.
Coming back to the main point of today's post, I find the way political leasers abuse the word secularism really despicable. What is secularism? In our country, it has come to mean only one thing - anti-BJPism. Every party mouths the word to refer to keeping the BJP out.
They do it like they are doing some divine duty. As if God had entrusted the task of keeping the BJP out of power to them. Parties who were fighting like animals until a few days back are now apologizing to each other and willing to talk 'to keep the BJP out'. How can two parties who have fought each other so bitterly come together to form a government?
There can be only one solution to this mess. Only pre-poll alliances should be considered while inviting a party to form the government.
Words have this habit of taking on new meanings ever so often! Water, in this dingy Mumbai building, offered hope to the many people for whom the torturous lifeline called dialysis had become a part of life.
I wondered about the diet restrictions that would be put on me. I have tried a lot of alternate therapies in my long innings on kidney disease. The amazing thing is that each therapy has its own unique set of diet restrictions. How can the diet recommended by different systems vary so much while treating the same disease? The last therapy I tried had a really shocking diet to be followed. They made it really simple. Basically just rice and buttermilk. Three times a day. The same food. Rice and buttermilk. Over and over again. I gave up in three days flat!
We talked to the folks outside waiting for their turn to drink the water. Each one knew someone who had benefited. Many of them claimed they themselves had benefited too. Some said their frequency of dialysis had reduced from thrice a week to twice a week. We were impressed.
We waited patiently outside the doctor's office for our turn. The queue was not too long. Each person did not take a whole lot of time either. I guess there was nothing much to do inside. How much time does it take to drink a glass of water?!
I remember seeing a whole lot of Reader's Digest related stuff. Though we called him doctor, Dr. Gupta wasn't a medical doctor. I am not sure if he is a Ph. D. though.
Wednesday, May 13, 2009
One afternoon, an anonymous cover arrived by mail. These were the days when email had not yet invaded our lives. This was plain and simple mail. The one that you can touch and feel. The one that arrives once a day and a postman delivers.
It had a newspaper cutting in it. An article was circled with a pen. It had the picture of a man holding a glass of water. We read through the article. It talked about a person, Dr. Gupta who stayed in Mumbai, who had apparently cured many people of kidney disease by giving them a glass of charmed water. He had received a mantra from a sage in a forest which when chanted over a glass of water had the power to cure kidney disease.
Could this be it? I was very frustrated by then with the events that had turned my life completely upside down. Dr. Girish Narayen's promise that my kidneys would jump back to life in a few days was long forgotten. I had even stopped asking him about this.
The next few days saw a flurry of activity and animated discussions at home. My extended family were called in. Everyone thought there was no harm in trying it out. It was water after all. My aunt and her family stayed in Mumbai. I could stay there. I could dialyze in Jaslok Hospital which was close to her house. Dialyze, only till I needed it, that is. The magic water would anyway get the kidneys to start working soon, right?!
We talked to my nephrologist about this.
"Defies science", I remember Dr. Dakshinamurthy reacting after he read the article. "We have no problem if you try it", he added. Obviously he did not believe it would work.
The plan was for my dad to come with me, get started on the "treatment" and then my parents and my other aunts and uncles would all take turns to stay with me in my aunt's house for the four month duration I would need to undergo this therapy.
Sunday, May 10, 2009
I find that my ability to weather the normal, not related to kidney disease, ups and downs of life has reduced significantly. A small incident here, a minor problem there and I find myself getting all worked up and disturbed. Its like a small pebble thrown in a lake causing huge waves. Totally out of proportion.
Its not as if I get frustrated about my condition. I have (for the most part) made peace with my kidney disease. I have accepted it as part of my life. But along with this, to bear other mundane problems of regular life becomes too much for me to handle. I get totally flustered and scared.
I really don't know how to handle these problems. They are not within my control. They are caused by external circumstances and people. I only have to react to them. That's where I fail. At work, at home, everyday, these small little things happen, beyond my control, but spoil my peaceful existence. Disturb the balance in my mind.
I can handle my kidney disease well. I cannot handle things beyond that.
Friday, May 8, 2009
Kartik had suggested looking into htaccess that basically allowed you to do this in Apache. However, there are some tweaks that are needed on Mac OS X before this can work.
Here are the steps that can be followed to do this:
1. Edit your Apache config file which, on Mac OS X Leopard is /private/etc/apache2/httpd.conf. Look for the line:
Note that there could be multiple such lines. Look for one that is below comments similar to the following:
# AllowOverride controls what directives may be placed in .htaccess files.
# It can be "All", "None", or any combination of the keywords:
# Options FileInfo AuthConfig Limit
Change the above line to:
2. Next, create a file called .htaccess with the following contents:
AuthName "Server Access"
Save this file and copy to the folders you require to be password protected.
3. That's it! You can now use your OS username and passwords to access the restricted folders.
To figure this out took me hours of pain and a whole lot of trials and errors. Finally, got it to work!
Google yielded umpteen links. Many of them suggested a .htpasswd file that had the username and an encrypted password. You then need to give the path of this file in your .htaccess file. This should also work. For some reason it did not work for me.
He asked me about a second transplant. I told him about my decision to not go for another transplant for now. He thought I should give it a shot especially since I am young. He felt the quality of life would be much better after a transplant.
I have been thinking about this for the last couple of days.
The main problem in my case is that my primary disease, Hemolytic Uremic Syndrome (HUS) is such that chances of recurrence are high in the transplanted kidney. The first time round, they sort-of concluded that the cause of the transplant failure was HUS recurrence. But I don't think they were sure enough. I had the slides seen by Neeraja, a relative and friend who is a nephro-pathologist. She thought it could be either HUS recurrence or cycolsporin toxicity.
The truth is at the time of my first transplant, I did not push hard enough for conclusive evidence of the cause of the transplant not working out. There were some other complications and these were not logged well enough. I wish I had started blogging (even though the term wasn't even coined back then!). I would have had a clear record of the sequence of events.
This is so important. Today, I am not really sure. The exact details of the first transplant would have been invaluable to decide on a second transplant.
The primary factor dissuading me from going in for a second transplant is that the doctors here are not aggressive enough in dealing with complications. When I talk to different doctors about a transplant, I get the feeling that they are trying to avoid a transplant for me. Probably because they are not sure about what to do.
The record for transplants has also not been very encouraging here. KIMS, the hospital where I had registered saw a flurry of transplants for a couple of years. Things have slowed down following the death of four successive transplant recipients. They have barely had a couple of transplants in the past six months.
I don't think the medical infrastructure here is capable of handling my transplant. It is not practical for me to undergo a transplant elsewhere. So, I guess, my decision of not going in for a transplant stands 'for now'.
Tuesday, May 5, 2009
There was this trend of having something like a scrapbook that had pages for all your friends to fill in. Some were simple with just a few lines to scrawl a quick message. Some were more elaborate that had things like "Your dream for life" and "Idea of a great vacation". I had the second kind.
So, I went around meeting everyone and having them fill up my scrapbook and filling theirs in return.
There was a cute girl in my class. A lot of people were very much in awe of her. I took no particular fancy to her. But her group of friends and my group of friends were well, friends. Not too close but we got along well.
I took my book to her to fill. She filled it and returned it to me. I noted she had filled Mohd. Rafi for favorite singer. That happened to be my favorite singer too! Then there was a question, "Your idea of a best friend". In that she wrote, "Must be your types".
For a moment I was shocked! My types? What was this girl saying? It took a few minutes for me to realize that she meant "must be of the same wavelength as the individual"!!!
Some phrases take some getting used to!
Sunday, May 3, 2009
What happened after this is crazy.
Every time anyone commented on the photo, every single person (there were probably 20-25 people) got an email saying "XYZ commented on a photo of you". Gosh, there was a surfeit of emails for about a week on the subject.
In this process, I got to know a whole lot (not that I cared!) about all my cousin's friends including the fact that a certain Sohini preferred being called Payal!
This is something that they really need to fix.
People should be able to view comments only of people they are friends with. For example, let's say Aditya, my friend updates his status. Yes, definitely, I should be able to see that. But if Tom, who happens to be Aditya's friend and not mine, comments on the status, why should I be able to see that? Only Aditya and others who happen to be both Aditya's and Tom's friends should be able to see the comment. Right?
No, no, don't tell me there is a setting to do this. The default should be this way. Only if a person is on your friend's list should you be able to see anything posted by that person. And anyway, have you tried going to the settings page on Facebook? It is a warning not to mess with anything. There is this huge list. I could not figure out what exact options I needed to modify to be able to change anything.
The current default behavior psyches me out sometimes. When I comment on a friend's status/pic/whatever, there are potentially many unknown people who can read that.
Really, this must change.
Saturday, May 2, 2009
I am glad to report that I was recently able to get all the songs I was looking for online! Goes to show how much music piracy is growing!
All these songs have a base in Islam and related teachings.
I am basically an atheist - in the sense that I do not believe in the concept of a single all-powerful, just and kind God. All these songs are however, based on this concept. They praise this God and ask him for divine blessings.
So, yes, there is a contradiction at some level.
But I really am lured to the concept of bhakti to an almighty. Though I do not believe that there exists an almighty that can give you anything or solve any of your problems, I like the concept of singing sings that ask for this, knowing fully well that none of this is going to really happen! It gives rise to a really good feeling within me and I do this just for that experience.
Vinayaditya, a friend of mine gave me the link to a site that provides just this service. He gave me this link a year or so back. I finally got down to buying a couple of songs to try them out. They are really good.
They have two kinds of services. One is an mp3 with the background score of the song you need. The other is actually a video that has the background score and a display of the lyrics as you should sing them. Really amazing.
I had actually tried just the mp3 version when Vinay gave me the link but that needs quite a bit of practice since you have to time yourself perfectly to not sound horribly out of pace! I just bought a couple of video versions just now and they are truly a treat!
So, all you budding singers - have a ball!