Thursday, December 31, 2009

2009 - a roundup

2009 has been a mixed year for me. The year started on a painful note with hemorrhoids that I got towards the end of last year. I tried everything - from regular medicines to Ayurvedic medicines from Chennai. The hemorrhoids looked like they had settled down but within a few days, the pain had restarted. After going back and forth between the urologist (prostatitis?) and the general surgeon (abscess / fistula / something else?), I finally underwent surgery for a fistulectomy which got rid of the pain.

The next few months were bliss. Until October. I developed bone pain at that time. My PTH was also high since May. It was treated using Cinacalcet. It is now normal. My Vit D levels are however low. So, I am on Calcitriol for this. The bone pain is quite bad now. It is the most troubling problem for me at this time.

The transplant question popped up from time to time. So did the question of marriage. Both are so similar. So difficult to decide either way. I swayed from one side to the other again and again. Ruled them out at one point, was totally in favor at another point. I have been able to finally decide on only one of them until now. Hopefully, 2010 should see a decision on the other.

My work has been quite rewarding both intellectually and financially. I got into Mac OS X (Cocoa) and iPhone development. I built my first iPhone app from scratch and it is now on Apple's App Store! The app was quite a fun app to do. The fact that I did it entirely on my own has made me really happy. The job at Grene is very different from my job at Effigent. Here I am a full time programmer. In my previous job I hardly got to do any programming. Programming gives you a high that management simply does not offer. I guess I have written a lot about this. So, I will not repeat this here.

On the friends front, Chetan and Pavithra came down in the beginning of the year and were here for a while. I would have liked to spend some more time with them but I understand that the arrival of a son, Tejas does add some responsibilities to parents and there is no denying that their son is the highest priority in their life right now! Yogita also visited India with her daughter Niharika. Dinesh could not come. Many of my school friends are visiting India right now and I got a chance to meet many of them - some after about 17 years!

I always enjoy the company of my friends thoroughly. The few hours spent with them transport me to another world. In October, I did a trip to Vizag and Araku with my friends. I really had a blast!

All in all, like most other years, 2009 was a mixed bag. Here's wishing you a great 2010!

Wednesday, December 30, 2009

Update from the swimming pool

Its quite cold in Hyderabad these days. The minimum temperature touched 11 degrees centigrade a few days back. Generally, when I get up in the mornings, it is quite cold. It is another matter that I am waiting to get out of bed because I am unable, for some reason, to sleep beyond 5:30 and I try to make sure that my dialysis finishes at least by 6 so that it is only half an hour of waiting! It is funny how half an hour can become such a long wait.

Anyway, once I finish my morning routine of Darjeeling tea followed by checking emails, Facebook, Twitter, some dialysis related forums and the newspaper, I go to the swimming pool for a swim. On the way, I invariably see almost everyone on the road wearing a sweater, a muffler or one of those ear pieces every second Hyderabadi has these days. It sits tight on the back of your head and its two arms cover the ears securely. I wonder whether I am being foolhardy swimming in this weather when everyone else seems to be trying to escape the cold in some manner.

When I reach the club, I amble along from the parking to the pool, almost limping due to the bone pain in my feet. There usually are less than two people in the pool. Mostly there is no one. The water is crystal clear. I change, take a hot shower (this, I believe helps me bear the cold water in the pool) and then dive into the pool.

My diving has considerably improved over the past few months. After I learnt the knack of diving from the coach, Irfan, I have consistently improved. For a long while, I would always land on my stomach or below and get hurt in the process! I persisted however. Today, I can dive reasonably well, head first, at a good almost 90 degrees and within a couple of seconds almost touch the floor of the pool. I have also realized that focussing on the dive helps me take my mind off the cold water. It is really cold!

Quickly I swim a couple of lengths in the pool and this helps a lot in adjusting to the cold water. I used to put in about 14 lengths a couple of months back. But ever since this damn bone pain has started, my capacity has reduced. Today I just did six.

Swimming is important for me in may ways. One is it helps me stay in reasonable shape. My body is slowly beginning to resemble John Abraham's. Ok. Ok. That's not true. Let's just leave it to "stay in reasonable shape". Another thing is swimming is said to be good for the bones. So, I'm hoping it will help limit any damage to my bones that is due to the 'effects of long term kidney disease' (oh, how much I hate that term the docs use to describe everything that happens to my body these days!). And most important of all, I really enjoy it.

So, you see, it is good in all ways. I really hope I am able to continue swimming for a long, long time to come.

Monday, December 28, 2009

Rudy learns the ropes at Ferndale

Yesterday, we played Taboo again. Nisha and Rudy (Anirudh) had come down from Hong Kong and all of us got together to play the game. We had played last in April and I had described Rudy's reaction to our generally boisterous demeanor - 'What a family!', he had said.

Yesterday, things were a tad quieter thanks chiefly due to the absence of the younger siblings - Karan and Aditi. But Prasan, Nisha and I quickly made up for the lack of noise.

The interesting thing was Rudy, who last time was extremely accommodating and 'fair' actually started showing shades of the Fernes gene. Months of staying with Nisha has actually begun to bear fruit. His voice was louder than last time. He was more aggressive than last time. And some of us were quite shocked to see that he was actually fighting over a point! Unheard of until now!

So, Rudy is finally learning how to deal with the family. He has probably realized that being soft spoken doesn't get you anywhere. You have to be equally rough and shout as loud to have even a remote chance of getting heard in all the din. Welcome to Ferndale, Rudy!

Thursday, December 24, 2009

The T tangle - what's the way out?

We have the state on boil again. What is the way out? The government's flip-flops along with the flip-flops of the political parties are literally causing the state to burn. In my humble opinion, (which I realize does not count for too much!) this is a way out:

1. Start the process of forming a separate Telangana state immediately. It is not true that a resolution is required to be passed in the state assembly. Please correct me if I am wrong. The centre can do this independently. The cause is genuine. There is no doubt in my mind about this. Please read this (albeit patiently!) to understand the history behind this demand. The people of the region have a genuine grievance and it must be addressed. Hyderabad must be the capital of the Telangana state while Vijaywada or Visakhapatnam can be made the capital of Andhra Pradesh.

2. Put the state under president's rule for a while. This is important because the government under Rosaiah has failed miserably in performing its most important duty - that of maintaining law and order. It is also an open secret that K V P Ramchandra Rao is the one who wields the baton in the home ministry. There are a number of vested interests in the government who are acting against the interests of the people. To bring back the state to normalcy, it is important that there is a neutral government.

3. Bring in the army to ensure peace. The moment you announce that you forming the state, the Andhra region will erupt (stage managed, if you will). This must be quelled forcefully and decisively. No nonsense must be brooked. The government of India must send a stern message to all that the nation cannot be held to ransom by a bunch of hoodlums. What is the problem for the people of the Andhra region to concede a Telangana? What do they have to lose?

4. TRS must cease to exist. I don't say this. They themselves have promised (apparently) that they will merge with the Congress once the state is formed. It will be dangerous to have KCR and his ilk running the state of Telangana. They will loot and plunder its resources like never before and this will sour the dream of the people of the region.

5. Form the 2nd SRC. The moment you announce a Telangana, umpteen other demands will be raised. All those must be examined. The center must constitute the committee to look at these demands in a time-bound manner and the center must refrain from knee-jerk reactions like in the Telangana issue.

I understand that things are not as simple as this. But I feel this might offer a way out of the mess that we have got ourselves into. Mulling on this issue for many days, I have realized that there cannot be a united state for too long. The situation is worsening every day and some decisive action must be taken soon. Some of this might not be palatable to some. This cannot be helped. In a country like ours, you cannot please everyone all the time.

I write this as a neutral person - neither from Andhra nor from Telangana. I write this as a silent spectator who yearns for normalcy in the city he has lived in all his life.

Wednesday, December 23, 2009

Debilitating bone pain

My bone pain is getting worse. It is a big problem. I find it difficult to walk down a flight of steps. There is too much pain in my feet. I have to walk down like an old man - step by step - planting both my feet on each step. I feel crappy.

I did all the relevant blood tests. Its been a month since I started rocaltrol to treat the Vitamin D deficiency thought to be the cause of my bone pain. The PTH is normal now but the bone pain has become worse. The neph feels it could be due to the low phosphorus. It is only 1.1 post dialysis. The normal level is 2.5 to 4.5. I have started adding a phosphate additive to the dialysate to try and reduce the amount of phosphorus being removed from my blood during dialysis.

I was also asked to get some X rays to see the status of my bones. I am going today to get these done.

Tuesday, December 22, 2009

Life expectancy

I have been thinking really hard about this for the last couple of weeks. It started with me having to decide about a pension plan. My bank sent an executive to suggest some investments and I thought it might be a good idea to start investing in a pension plan. Every year I would need to put in some money and when I retire, I would have different options, one of which would be to get a monthly income to take care of my expenses. I asked for a plan that would allow me to retire at around 50. The numbers came.

At that point I started thinking about it, asked a few experts on the dialysis forums and also talked to my nephrologists about it. How much longer can I hope to live? That is a loaded question. No one wants to answer it straight. I understand that. But it is a very important question for me. From a very practical standpoint. If I were to live till 60 or more, investing in a pension plan makes a lot of sense. That is because when I am about 50, I may not be able to work and earn enough to meet my expenses - medical and general. Now, when I am able to work, I should save some money to take care of this.

If, on the other hand, I am not going to be around after just a few more years, what's the point in investing in this kind of a plan? I might as well spend the money. I don't have any dependents to take care of. So, without sounding depressed or worried about this, I needed an accurate answer. Now, I totally understand that no one can give me an accurate answer. I also know that each individual is different and that statistics are made up of extremes and you cannot really rely on statistics to arrive at this answer.

I understand too that people without any chronic conditions could get run over by a bus or die in an accident. No amount of planning can avoid these kinds of things. Nevertheless, I believe that I really need to keep this in mind while deciding about how to go about my life in the next few years.

Bill Peckham quoted some statistics related to the US population which said that the life expectancy of a person on dialysis at my age would be about 11 years. This could be the average of extremes. When I think about my condition, I have almost all the co-morbidities associated with dialysis and more. So, should I consider myself close to one of the extremes?

These things can be really depressing. No, please don't leave a comment about how not to worry about the length of life; live each day to the fullest and all that. I usually do that.

Thursday, December 17, 2009

Thankfully, its not osteoporosis

I took the day off from work today to try and get a handle on the bone pain. It has been bothering me a lot recently. It has been a month now since I started calcitriol for the Vit D deficiency and it has not helped at all. It has in fact, become worse. I have been advised on the dialysis mailing lists and forums to get a bone density scan. This is done to check if someone has osteoporosis.

So, today I got a bone density scan, also called a DEXA scan. It cost me a whopping 4000 rupees. I was made to lie down on a bed and there was a machine that scanned me. The report was normal. So, at least its not osteoporosis.

So, now the question is what is causing the bone pain? I was asked to repeat my Calcium, Phosphorus and PTH levels again around this time and go for a review. So, that's the plan at least for now.

The bone pain is really my biggest concern at this point. I find it difficult to do my daily activities. My feet hurt when I walk. My back and ribs hurt when I am lying down and want to turn. Any sudden movement hurts too. I really have no clue about what the reason could be.

Wednesday, December 16, 2009

Had I been given some more time to live my life fully

I was diagnosed with kidney disease at the age of 22. Yes, too young. Sometimes I wish I had some time before lightning struck and changed life as I knew it. I wish I would have known a few years before this was to happen. I would have at least done a few things I cannot now do. Well, its not as if I cannot do these things. But its a whole lot more complicated and difficult. Almost impossible.

The main thing I would have done was travel. I would have made a trip to Switzerland and seen the Alps. I would have stayed for a few days at one of those secluded houses which I heard about from my mother and brother who have been there; in the middle of nowhere, with no human being in sight for miles. Where it would be so cold that you didn't feel like getting out of your bed from under the rug in the morning except to the smell of chocolate.

I would have travelled to the US and done a cruise. I have always wanted to do this. Staying on a luxurious ship and just enjoying myself the whole day. If I was not in the swimming pool on the deck, I would be luxuriating in the jacuzzi or sampling the exotic food that was on offer. I would love to jump into the ocean or curl up in my bed looking at the ocean from inside amazed at the humungous volume of water that was all around me.

I would also have planned to spend a few weeks with some sages to try and learn the secrets of peace - something I would really need in the days to come. I would spend a lot more time on religion. I would try to understand the scriptures and learn the languages in which they were written. They would provide me the strength to face the tribulations ahead.

Oh, how I wish I had known in advance. It all happened too soon. My life was snatched from me in one fell swoop. I had no time to prepare. This wasn't fair at all.

Tuesday, December 15, 2009

New Indian website on Pediatric Nephrology

Dr. Sidharth Sethi, a pediatric nephrologist has started an excellent website on pediatric nephrology. It is really great to see doctors in India take to technology. The blog features the latest in the field of pediatric nephrology from around the world.

I have a special interest in this field because my primary disease Hemolytic Uremic Syndrome is usually a pediatric disease. Mostly children are affected by this disease. Adults are only rarely affected.

So, a lot of work in this area has been done by pediatric nephrologists. The genetic defects associated with this disease, I would assume, are similar in children as well as adults.

Do check out Dr. Sethi's blog! I have a little article there too!

(Update: Website URL updated on 28th November 2016)

Friday, December 11, 2009

Vijaya Diagnostics - too good!

I recently had to get my Vit D levels tested (I had got the 1,25 levels tested a few weeks back, this time it was the 25 levels - more about this in another post). I was asked to get it done in Vijaya Diagnostics. Now that's a name I had heard a lot in the past few years. I would always be told - get this test done either in Vijaya Diagnostics or something like Apollo or Yashoda. I would typically choose something like Apollo or Yashoda for no particular reason.

This time, I wasn't given a choice. I was asked to get it done in Vijaya Diagnostics. I knew their main branch was somewhere near the Skyline Cinema. But I had this feeling that they had a branch close to my office. I had probably chanced upon their board or something. I did a quick Google maps search and sure enough, found a branch about half a kilometer from my office. I called them and asked them if they did the test. They said they did.

I went over to the branch. It was a nice, new premises. Without much ado, I paid the bill and gave my blood sample. I then enquired about when the report would be ready. They said it would be ready after 8 p.m. that day. I asked if I could get it around 6 because I leave my office at that time. They said it would not be ready until 8 because the report had to come from their main branch. I then told them I would collect it the following morning in that case.

Then came the biggest surprise.

They said I could check it online. Online, I asked, half in disbelief?

They showed me the id and password on the bill they had given me some time back and said I could go to their website and check my report online in the evening.

I was so impressed!

That evening I checked my Vit D level online. The website was great. Easy to use. No fuss. Within a minute I had my value with me! (It turned out to be normal, by the way.)

Thursday, December 10, 2009

Is this the way such important decisions should be taken?

While I am not going to argue about whether the decision to form a separate state is right or wrong, I strongly feel that the sequence of events that led to the decision to form a separate state left a lot to be desired.

Forming a separate state is not a small decision. To take such a decision under pressure of the failing health of a man who is nothing but a selfish thug who has shown no signs of morality and dedication to anything is wrong. If anything, this decision should have been taken without any pressure from anyone.

I do not think the protestors from Osmania University and other places did anything wrong. They believed in a cause. They fought for it. It is for the government of the day to deal with the situation. It should not be forced into anything it does not believe is good for the people, the state and the country at large.

Some people might argue that the decision is right and eventually, it was the pressure that forced the government to act. Pressure is not the reason a government should act. If the reasons behind forming a state were genuine, this should have been done long back, not because of the pressure.

To what extent is the government going to go now? What about Hyderabad? Is it going to become a Union Territory? Joint capital of both states? What about demands for other states? Is a fast and agitations by university students the formula for getting a new state? Every demand for a new state has justifications. There are many regions in the country that have ben neglected. How is the government going to handle these demands?


Monday, December 7, 2009

Telangana - different perspectives

I was home alone. My parents had gone to Chennai on work. I was chatting online with some friends after a long time. Suddenly, I heard a lot of commotion outside my house. I caught only one phrase - 'Jai Telangana'. I rushed towards the front of my house. Through a window I saw about a hundred people with pink flags walking past my house sloganeering and shouting. Chants of 'Jai Telangana' rent the air.

I watched, not worried at all. They were not there for me, nor did I have anything to do with them. Suddenly, I heard a noise which sounded like a mild explosion. It was clearly just a few feet from the window I was at. I realized it was from inside my house. I was horrified. It was either a bulb which had broken or a stone that had hit a glass window. Immediately however, some people within the crowd shouted at one of the others. "Eh, Eh!" The crowd moved on.

I breathed a sigh of relief. Whatever it was, it had passed without much damage. For a moment however, I was petrified. I was dreading that more could come. Thankfully, it did not.

Mobs are not rational, right? Who could explain, indeed who would have an opportunity to explain to them that I had nothing to do with this. That I was not even from the state. The concept of Telangana and Andhra was completely alien to me.

***

On Saturday evening, I was returning from a hospital where I had gone to discuss something with a doctor. We had heard there that Section 144 was imposed in the city because there was some violence in Ameerpet and Punjagutta areas.

I passed by the Paradise bus stop. I saw about a couple of hundred people who had gathered at the bus stop. It was not an unruly crowd. It was an eclectic mix of the old and the young, men and women, children and adults. There was one thing common among them. Worry. They were all waiting for buses to take them home. Buses had been withdrawn because some unruly hoodlums had broken some buses during the violence that evening.

They had no means of getting back safely to their homes. Autos were either absent or were charging unaffordable amounts. They were all waiting anxiously hoping some bus would come and take them home.

I felt really bad for them. I have no idea how they went home. No buses plied that day.

***

Kartik is a software programmer. He has one major grouse. He says, "The only complaint I have had is that my Telangana dialect is not accepted by anyone around me, and as for the film industry they have come to brand it as a rogue dialect which saddens me." The Telangana dialect is spoken only by villains and comics. Never the lead actor.

It is this attitude which bugs the hell out of people from the region. Nobody likes to be made fun of. Too silly a reason for a separate state? Well, depends on which side of the divide you are on. There are other reasons too.

Two of South India's largest rivers flow through the region but the large parts still do not have access to proper drinking water. The basic reason for separate statehood is that the powerful Andhra people have systematically exploited the region and promoted their own kin. The rightful owners of the region's bounties have always got a raw deal. You can read more about the history of the demand for a separate state here.

Saturday, December 5, 2009

Healthy people - never take your body for granted

When you are diagnosed with a condition that is going to last your entire life, it can come quite as a shock. Most of us go about our lives smugly thinking that these kind of things will never happen to us. Then one day, boom, all of a sudden, our world comes crashing down. Ask anyone who has been through this and you will hear something similar. 'I never imagined that this could happen to me!'

That is why I want to say to all you healthy people out there - never take your body for granted. You have no idea what's in store for you. Live a healthy life. It is fairly simple to do. You don't have to go looking for 'nirvana' where your health is concerned. It is common sense.

The problem is many of us go about our lives without thinking about the 'big picture'. Cliched, I know. But, seriously true. We get so caught up in our daily routines that we don't really stop to think about our lives and where we are going. This is true about our health as it is about anything else in our lives.

If you take some time out and think about what it is about your life that is not healthy, you will easily be able to identify a few things which you must change. It is never too early. Don't think that I am too young to not do this or start worrying about my health. Remember that chronic conditions are hitting the young at an alarmingly increasing rate.

There are simple things you can do. Eat healthy food. Don't eat processed food. Don't smoke. Drink within limits. Exercise. Work normal hours. Get good sleep.

See, no rocket science there. Simple common sense.

By taking a conscious decision NOW about living a healthy life, you will really feel better and reduce your chances of getting hit by lightning when you least expect it. Once you are diagnosed with a chronic condition, there is little you can do about it except keep your chin up. The key is to prevent it. And its not that difficult. If you take it seriously.


Thursday, December 3, 2009

Used a new site, used a sharp, slept well after a long time!

Yesterday I had written about the severe pain I had during dialysis that night and that I had to close the session early. I was worried the whole day about cannulation. I decided to abandon the buttonhole sites I have been using for my arterial site and use sharps to cannulate on a fresh site. I dumped in a whole lot of lignocaine and used a sharp. Cannulation was fine. The real test would be after about 15 minutes when the effect of the lignocaine would wear off.

There was very mild pain for a while. Too mild to keep me from sleeping! I drifted into a really peaceful sleep.

Beep, beep, beep, beep....

I awoke only in the morning to the sound of the machine signaling the end of treatment! After a long time, I slept till the end of the treatment. For the last many days, I would invariably wake up an hour or so before the treatment was scheduled to end, my arterial site paining, sore from the needle, waiting in frustration for the minutes to pass by. Not so today.

I feel so good. Rested. Pain free. Cheerful!

Wednesday, December 2, 2009

Arterial pain back

For the last week or so, my arterial sites have been paining. I have been using a local anesthetic before cannulation. So, the cannulation is all right. However, a few hours into dialysis, the arterial sites have started paining. I am unable to sleep properly too.

Last night, around 3 a.m. the pain had become quite severe. I tried carrying on. I was unable to sleep. I woke Jayaram, the tech and told him about the pain. I actually asked him to close the dialysis session. The pain was that bad. But I had got only about three and half hours of dialysis. So, he suggested that we push in a little local anesthetic. He did that and there was immediate relief. But that would only last about 10-15 minutes. So, he gave me an IV painkiller - trammadol. This allowed me to pull along for another hour or so. Around 5:15 in the morning, the pain was quite bad again. I woke him up and asked him to close the session immediately.

My arterial sites have always been problematic. I had written about it here, here, here, here and here. The last week has been quite bad. I am planning to use a sharp needle and change the arterial site today. Let's see how it goes.