Friday, July 29, 2011

The team's contribution to a company's identity

I have been a part of two startups. Effigent and NephroPlus. I have seen both these companies from scratch. There is one thing that I have seen in both. The identity of the company is often shaped by the first few employees in the company.

I find this to be universally true because the management can do only so much in shaping the attitude and behavior of the team. Though the overall guidelines can be given, values and missions stated, unless the first set of hires really believes in them and adopts them genuinely, it is very difficult for the rest of the hires to do so.

That is why the first set of hires is so important!

At Effigent, we were really lucky to get someone called Neelapalla Srinivas as one of the first few employees. He was an amazing guy. Technically solid. Amazing attitude. He would help the juniors come up to speed, spend time with them, coach them. Not only did this help the juniors in grasping programming concepts the right way but it also encouraged them to help others at work. This attitude in everyone was one of the most liked by the Effigent team. The folks that joined later carried on this legacy much after Srinivas left.

At NephroPlus, Sara the nurse that was hired in the early stages set the standards in nursing care at NephroPlus. The NephroPlus standard of care was informally institutionalized by her. She walks out all the patients after dialysis holding their bags and seeing them off. This is one of the many things that patients love at NephroPlus - personalized, homely care. Today, as Sara moves on to bigger challenges, her impact will not be lost. Nurses after her must adhere to the same standards that have been set.

Fortunately the managements of both these companies strongly believed in the values that the first few employees were torch bearers of! And the companies were fortunate enough to get these people to actually help realize their dreams.

Monday, July 25, 2011

Zindagi na milegi dobara - must watch

I watched Zindagi na milegi dobara the day after Delhi Belly. What a change! Maybe I liked it so much because I watched it immediately after such a bakwaas movie like Delhi Belly.

I won't go into the story and performances. You can find that anywhere. I will tell you what I liked about the movie.

Basically, there are two messages for me from this movie. One is Hrithik's story. He is fully engrossed in his work. His life is pretty much calls, meetings, customers, money, money and more money. Many of us get into this mode of making work our entire life. We don't realize that work is only a part of life and not life itself. Hrithik's character understands this as the movie progresses and eventually breaks free.

The other part is where the characters face their deepest fears head on. It does seem too simplistic and unrealistic at times. But then this is a movie, not a news show. Let's not forget that. The key is to face our fears. It is easier said than done. But once we do this, it does not seem that difficult at all. This is something worth hanging on to.

The music is really good. The Senorita song is excellent. But then, I did not want to do a review!

If you haven't watched this movie yet, go watch it! You will love it!

Sunday, July 24, 2011

Started off on Chloroquine

I have been put on Chloroquine to treat my suspected Porphyria Cutanea Tarda.

This is purely an empirical treatment which means treating based on symptoms and not any confirmation of the diagnosis. So, they can confirm the diagnosis using a test of the urine where they test for the presence of Uroporphyrins in the urine but since I am anuric that is ruled out. The blood can be tested for this but no one does it in India apparently.

The other option is a biopsy of the skin where they take a small bit of skin and then analyse it for signs of this disease. However skin biopsies can only be useful if done on a blister that has actually formed and for some reason, my dermatologist says it can be done only on blisters that form on the back of my hand or feet and all the blisters that I get are on the fingers and toes! Also, he says, biopsies are often inconclusive.

Since the symptoms are all in tune with Porphyria Cutanea Tarda, we are going ahead, empirically if you will, and treating it.

Chloroquine, most famously used for treating malaria is supposed to be effective for this disease as well if given over long periods. So, I've been asked to take it for a month and watch out for any rashes or change in vision.

Ha! That's the beauty of medicines these days. They will cure you of one condition but can give you another!

Thursday, July 21, 2011

Dr. Ashwin Aiyangar, Nephrologist is in Blogosphere!

A nephrologist I hold in really high esteem, Dr. Ashwin K. Aiyangar now has a blog. Its called Kidney Pulse.

From the blog: "This blog is an attempt to try to help those millions who may be patients suffering from the disease, their relatives, friends and well wishers, or just someone who wishes to know about the kidney and wants to contribute .... perhaps aiming to make this so-called dreadful disease not-so-dreadful anymore."

An excellent start I must say!

Welcome Dr. Ashwin!

Saturday, July 16, 2011

Yes, crucify me, but I hated Delhi Belly!

First things first. In a twist to a famous quote, "You may not agree with what I say but you must fight for my right to say it!"

So, you may have liked the movie but I didn't. Simple. And I will not deny that I thought the movie was disgusting. However much you thought it was hilarious.

I don't like movies that show dirty, shabby houses, toilets, flushes falling on people and such other gross things.

For most of the movie, one of the main characters is struck by diarrhea. Hasn't he heard of antibiotics and other astringents? Worse, hasn't his doctor? Even if they haven't, why take the camera behind him whenever he has to relieve himself.

The worst part of the movie was a scene where they actually show someone pouring out liquid human poop (purportedly, a sample given for a test to a lab). I almost threw up right there. I closed my eyes after one single frame to prevent this.

This, in the name of entertainment? And you have hordes of people loving the movie!

Well, I don't hold any grudges against those who liked the movie. To each, his own! But I found it horrible. Utterly disgusting. A pathetic attempt at humor.

Friday, July 15, 2011

My 14th dialyversary!

Was yesterday, 14th of July 2011.

What the hell is a dialyversary? Well, my anniversary of getting onto dialysis!

Exactly fourteen years back, I was hit with kidney disease. 14th of July, 1997. What a ride it has been! And no, I am not depressed at all. Would I have liked it some other way? You bet! But am I going to sit and cry that my life has been snatched away from me? No way!

It is true that kidney disease changed the course of my life in unimaginable ways. When I was diagnosed, I had no clue about what kidneys did or what happened when they failed. I had never heard of the word 'dialysis' that was going to rule a large part of the rest of my life.

A lot of people commend me on how brave I am. I honestly don't understand that at all. What makes me brave? They conjure up these fancy images of me fighting this disease and all that. For me, giving up is never an option. Yes, once in a way, the thought of ending it all does cross my mind - much rarer these days though - but the thought never lasts too long.

One very important factor in my positive attitude has been work. I have, for the most part, been doing some very interesting work. Even though I never put in long hours at work, it kept me busy enough not to have time to think about the disease itself. Dealing with the disease was one of many things I had to do. A typical to-do list during my Effigent days would read something like this:

- Call meeting of VCA developers about Sync issue
- Talk to Testing team about last build
- Follow up with Religare about PTH report and then meet Dr. Girish Narayen about it
- Discuss with HR about status of new hiring

You get the picture! It is that simple.

The secret to dealing with this disease is work. Keep yourself busy. Yes, that is my mantra!

Earlier it was Effigent. Then Grene. Now NephroPlus. I work full time and that is all there is to my bravery/positive attitude/whatever.

Thursday, July 14, 2011

NephroPlus brings dialysis to Mahabubnagar

This morning, the third NephroPlus center was officially inaugurated. This is a very significant milestone in many ways.

For one, there was no dialysis facility in Mahabubnagar. Dialysis patients currently travel about 100 kilometers each way to Hyderabad to get dialysis two to three times a week. It takes a good two hours to travel one way. So four hours for traveling and at least five hours for the four hour dialysis session itself and about half an hour before and after. The whole day gone. For the patient and an attender. Twice or thrice a week. People we talked to said that they were spending more on travel than on the dialysis session itself.

No more of that!

People can literally hop, skip and jump into the swanky dialysis center that has been built inside Mahabubnagar's S. V. S. Medical College and Hospital. And you're not going to believe the last part - they can get dialysis for free since the unit is going to be shortly empaneled under the Andhra Pradesh Government's revolutionary Aarogyasri scheme!

This inauguration is significant in some other ways as well. This is NephroPlus' first dialysis center outside Hyderabad and its first inside a hospital. The earlier two units were inside Hyderabad city and were standalone centers. This will bring on a lot more challenges. We are, of course, all looking forward to this new experience!

Wednesday, July 13, 2011

Why Potassium and not Phosphorus is the bogey for Indian dialyzors

When I first started going over posts in forums meant for people on dialysis (most people were from the US), I would find so many mentions of Phosphorus. People would crib about having to take binders. They would worry about the Phosphorus content of the different foods they would take.

Surprisingly, I never heard as much a fuss being made about Phosphorus among Indian doctors, dietitians and patients. Here Potassium was the popular word! Be careful about your Potassium. Don't eat fruits. Phosphorus was mentioned only in passing.

I often wondered about the difference in attitude in these two populations.

Could it be chiefly due to the difference in diet?

Indians, probably, on an average eat much less meat than Americans. Indians, probably, also consume much less dairy produce (milk, cheese, butter etc.) than Americans. These two are huge sources of Phosphorus. Another source of Phosphorus is colas and other aerated drinks. Preserved food also has much higher Phosphorus than fresh food because many of the preservatives have Phosphorus. Americans, again, consume more of preserved food and aerated drinks than Indians.

A senior nephrologist in Hyderabad once said that the problem with the diet in the average Indian dialysis patient is one of too little, not one of too much! Some dialysis patients I see are actually malnourished. They barely eat anything. In most of these people, Phosphorus is usually on the lower side of normal. At one point the nephrologist just tells their families not to restrict anything!

Potassium is a more of a problem even in the healthier patients. Could it be due to the propensity of Indian patients to eat more of vegetables and fruits? Most likely. There not being any Potassium binders (not here, not in the US) adds to this problem and the perception of it being a problem.

When I was on thrice a week dialysis too, Potassium was my big problem. I didn't even think about Phosphorus! These days, of course, I am on Phosphorus supplements because my Phosphorus is too low!

Monday, July 11, 2011

Great resource for dialysis patients - Sodium and Potassium values in Indian foods!

Potassium is a huge problem for dialysis patients! Almost anything that tastes good has Potassium! Mangoes, bananas, coconut, chikoos!

And all dialysis patients know that they have to avoid anything containing high Potassium. "You may die if your potassium goes too high!" "Your heart will stop working if your Potassium goes high!" "Avoid high Potassium foods like the plague!"

So, that begs the questions, "Can I not have any fruit at all?", "Mangoes, ok, I will not touch them. What are the other things I need to be careful about?" "Can I not have one banana just before dialysis?"

There are sites on the internet that have a lot of information on the content of Potassium in many foods. However, most are based on the US foods. Many of those foods are not even available in India. Nectarines for example! And then there are many Indian foods which are not listed in those sites. Also, many foods are grown differently in the US than in India and the potassium content is different in both the versions! Oranges for example.

All these issues have now been resolved!

Just visit this link on the Dialysis in India website (Disclaimer: that site is also maintained by me!). It has the Potassium, Sodium (and many other minerals) content of a huge list of Indian foods!

So, now you can refer to this list before restricting your food! Enjoy!

Saturday, July 9, 2011

Plasmapheresis versus Eculizumab versus Status Quo

So, I have this rare disease called Atypical Hemolytic Uremic Syndrome (aHUS). There are probably a handful of adults in the world that have it. In this disease there is uncontrolled activation of the alternate complement pathway (alternate mechanism of protecting the body against foreign invasions, so to speak).

It has been proved that I have a genetic defect in me where two exons of the CFH gene are replaced by two exons from another gene called the CFHR1. This is called the CFH/CFHR1 hybrid gene. This genetic defect makes me vulnerable to Hemolytic Uremic Syndrome (HUS). The vaccinations that I took in July 1997 triggered this disease.

Until recently, Plasmapheresis was the first line of therapy for HUS. What Plasmapheresis basically does in HUS is it removes the 'bad' Factor H and replaces it with 'good' Factor H. This may not be effective always. This was done when I presented initially with this disease. However, more of Plasma Infusion was performed and little Plasmapheresis was done.

When I got a transplant in November 1998 and HUS recurred, Plasmapheresis was NOT done. This, I feel, in hindsight, was a grave mistake. Not that I blame anyone for this but this would have given us a shot at saving the transplant. I had no clue at that time about these things.

Now, after 14 years with this disease, the co-morbidities of long term kidney disease are catching up with me. My gut feeling is I will need a transplant sooner rather than later. I have a few options at this stage:

- Transplant with Eculizumab
- Transplant with Plasmapheresis
- Status Quo

A transplant with Eculizumab has the best likelihood of success. Most people who have taken Eculizumab (about a dozen have probably had transplants around the world with Eculizumab) have not had any recurrence of aHUS. The problem? Not yet available in India. Costs prohibitively high to even consider importing. (Just to give you an idea, it would cost about $300,000) Realistically speaking, it might take upwards of 4-5 years for the drug to become available in India and reasonably enough proceed for me to be able to use it. Some people talk about clinical trials. Clinical trials for transplants? Hmmmm...

The third option is a status quo. Continue like I am doing now. On dialysis. Quality of life is not bad at all. However, things are happening. For sure. My skin looks alarmingly bad. My nephrologist has warned that my quality of life might be affected. He feels I should get a transplant as soon as possible. He in fact, wants me to meet the Transplant Surgeon and begin the process right away.

Which brings me to option #2. Transplant with Plasmapheresis. Plasmapheresis is not a sure shot solution for recurrence. It may work. It may not work. No one can say for sure. It will be expensive though it can be done in Hyderabad itself. Donor will need to be figured out. But this is within reach. Yes, it will dry up a lot of my family's and my financial resources. But certainly within our reach. Unlike eculizumab.

So that is what I am thinking hard about these days.

Wednesday, July 6, 2011

And then all of a sudden...

Maqdoom Ali was about 40 something. I probably haven't seen a more cheerful patient. His attitude was amazing. He worked full time. Dialyzed thrice a week. He drove around town in a scooter. Yes, nothing surprising about that except that only someone on dialysis can tell you why that is nothing short of an achievement. After the four hour roller-coaster, going back home on a scooter is certainly not for the faint hearted.

Maqdoom Ali's zest for life was evident whenever I talked to him. He told me he realized that dialysis is what makes him live. Many patients try to cut down on the number of sessions thinking that they can manage without the extra dialysis. Not Maqdoom Ali. He knew that he needed as much dialysis as he could get. He often told me he knew his body pretty well and had learnt how much fluid it can tolerate and what the warning signs were. He had figured out what foods his body could withstand and admitted that whenever he crossed the line, he suffered. He would counsel other patients about not skipping sessions.

Maqdoom Ali wasn't from a very affluent family and being diagnosed with this disease without having enough money to pay for it can be very difficult.

He got his dialysis session on Monday and was scheduled to come for a session today. And then all of a sudden, this morning, he collapsed in the bathroom. His family immediately called 108, the emergency service. The paramedics came and declared him dead.

Maqdoom Ali's passing is shocking. How could this have happened? He was totally all right! I really haven't seen a patient who was doing as well as him. But then there were probably changes at the underlying levels which were not very evident. Changes which even Maqdoom Ali did not realize were taking place. Who knows? Who ever will?

With my involvement in NephroPlus, I realize that my attitude towards death of dialysis patients is also changing. While I burst into tears on reading Pavan Joshi's obituary in the newspaper many months back, I reacted quite stoically to the news about Maqdoom Ali. Not a graduation I would have liked.

Monday, July 4, 2011

Good guys finish last

I was chatting with two patients at NephroPlus. Both of them were around my age, relatively recently diagnosed, on dialysis for a few months, still coming to terms with this dirty disease.

One of them remarked, "I often think - I never touched alcohol, never smoked, never had any bad habits. Despite this how did I end up with this problem? I had many friends who had every bad habit conceivable. They are all perfectly healthy." The other laughed and said, "Those people will never have any health problems! It is only fools like us who lead good lives that end up with this!" I totally agreed.

I have also experienced this. I was the 'good' guy in my family and at school. I was very well-behaved, conscientious, studious. I was also very religious. My grandmother once famously remarked that I was the 'essence of correctness', a phrase that has come back to haunt me from time to time.

Yet I was the guy who got diagnosed with this life-changing illness.

Even among people on dialysis, I get the best possible dialysis. Very few people get the amount of dialysis I do. I am also very proactive about my health. I research about my condition, try to read up about my condition and participate in the forums on the internet. In spite of all this, I have all the co-morbidities of long term kidney disease. I am now battling a skin condition.

On the other hand, I know of people who get dialysed barely twice a week, do not control their diet, don't even visit their doctor regularly, are least bothered about their condition and the new research that is coming out. Yet, they are totally normal apart from the dialysis bit.

All three of us agreed that we shouldn't have been so good and should have 'enjoyed life' so to speak. Its too late now though and our medical conditions forbid us from doing anything even remotely intemperate. Well, there we go again!

Sunday, July 3, 2011

A +1 for Google +

I have been using Google + for just a couple of days. I really like it. Thanks Jayadeep Reddy Thum for the invite! It has what I love about Facebook. It does not have what I hate about Facebook. So, there!

One problem I have had a lot with Facebook is my home page would be flooded with useless updates - updates I have no interest in. This guy became friends with seven other people or this girl was tagged in that guy's picture. This dude and four others changed their profile picture. Who cares? And don't even get me started on yes, you guessed it - Farmville and the gazillion other nonsensical games that people play on Facebook.

At any given time, about 75% of my home page on Facebook is absolute junk. There probably might even be a way to turn off all that junk on my feed. But who has the will to find out? That should be the default.

So far, Google + has managed to keep out the junk. But I must wait and watch for a few days before I decide that it truly is well done.

Another problem I have with Facebook is that often I would like to post something only to a selected group of my friends. No way you can do that. So, my posts actually add junk to other people's home pages! Google + has solved that beautifully with Circles. So, now I can create multiple circles of my friends and post stuff only to selected circles! Brilliant!

The Hangout feature where you can video conference with multiple people at once also has been talked about a lot and many people have loved it. I haven't yet got a chance to use that but it sounds exciting.

So far, the ride with Google + has been excellent. If this continues, I am going to bid adieu to Facebook very soon. I am hoping all my friends on Facebook also move to Google +. The only catch - you still need invitations to be able to sign up!

Saturday, July 2, 2011

In search of the perfect bhindi fry

I used to hate bhindi (ladies finger, okra). When I was a kid, I used to absolutely detest meals at home that included bhindi. The thickness of the outer part with all those gross seeds inside never appealed to my imagination.

I found many people like me. However, there were also some people who would swear by the bhindi. My dad's elder brother, for example, loved it and in an amazing manifestation of the genetic theory, his son did too. I never understood that part of them though.

As I realized over the years, there were no fence sitters when it came to the bhindi. You either loved the vegetable or you hated it.

In Effigent, we had a lot of young developers who were of, as they call it, 'marriageable age'! In their mid-twenties. As it happened, one by one, they would get married. A lot of them were Telugus. So, we would go for their weddings and receptions. Madhavi was one of the earlier ones among this lot.

Now, you might be wondering what Madhavi's wedding has to do with the bhindi? Bear with me for a bit, dear reader!

So, at Madhavi's wedding there was quite a huge spread. There were hot dosas being made at one side. There was the Dahi Wada, the regular puri, some nice sweets and - you guessed it - the bhindi. At first, instinctively, I passed. When my colleagues and I gathered in one area of the dining hall, plates in hand, making our way through the food, one of them remarked how great the bhindi fry was.

"Yeah, right!" I remarked. How can anything remotely got to do with the bhindi be great? He said I should try it. At first I was very hesitant. All the years of hating the vegetable made it difficult to give in. At this point another colleague joined in. "Even I hate bhindi but the bhindi fry is something else!"

That was it. I had to try it. So I went over to the buffet table and took some rice, some sambar and a little bhindi fry. The vegetable had been cut to small circular bits and deep fried and then some masalas added. They were garnished with curry leaves, fried cashews and peanuts.

I put a little vegetable with rice in my mouth. It was really excellent! It was almost as if the entire evil inside the bhindi was exorcised by deep frying it! I went back for more.

Ever since, I have been an ardent bhindi fry fan. I still haven't made my peace with the plain vegetable. The bhindi fry, however, is 'something else'!