Thursday, November 29, 2012

Have you registered for Aashayein Bangalore?

As you know Aashayein is being organized in Bangalore this Sunday. If you are on dialysis and stay in and around Bangalore, please attend this one day free fun and educational event at Hotel Fern Citadel near Anand Rao Circle.

There are going to be talks by nephrologists, transplant surgeons, dieticians and fistula surgeons apart from a lot of entertainment. There is also going to be an elaborate lunch as per the dialysis patient diet and many gifts for patients.

I am going to be hosting the event. I would love to meet you in case you're coming!

You can register for the event here.

Fistula infected

My fistula is infected now like never before. I have been put on very strong oral antibiotics. I have also been given an intravenous dose of a vancomycin, a very potent antibiotic. I was advised to avoid dialysis yesterday to give the fistula rest for a day. In fact the nephrologist was also suggesting that I might need to skip dialysis for one more day!

I will be having it checked again today and then we will decide about dialysis today.

I am quite worried about this. A fistula is like a lifeline for people on dialysis. It is the only way we can get dialysis.  With my fifteen years on dialysis, I am running out of options for fistulae. I cannot afford to lose this fistula.

That is why we cannot take any chances and have to treat this infection aggressively.

I am scheduled to go to Bangalore this Sunday for Aashayein. I am hoping this infection comes under control by then.

Sunday, November 25, 2012

Fistula troubling yet again

For the last few weeks, I have been having problems with my fistula. My venous site got slightly infected and I had to abandon it and develop a new site. (I use the buttonhole technique for my cannulation which means developing a tunnel by cannulating at the same site at the same angle for 5-6 times and then using blunt needles thereafter.) The first time I used a blunt needle for my new venous site, the next morning there was quite bad pain at the site and around it.

I skipped dialysis yet again - third time this week! This morning the pain is slightly better. But I guess I will have to abandon this site as well and develop yet another site.

Needling is bad enough with a fistula - buttonholes or with sharps. These kinds of problems I really could do without! This leads me to think about the convenience of using permcaths. No needles, no pain. The only trouble is it really is not permanent (despite the name). Permcaths, I am told last about a year. What is good cannot last long, right?

Last evening, I was really depressed, almost in tears. I went into the cycle of negativity. I saw people on the road on my way back and thought - these people are so lucky, they don't have to bother about these things! They have problems for sure - but all 'normal problems'. And here I am - saddled with this curse of a disease that dictates every breath of my life, that I have to live with every moment of my day, where all normalcy has been tossed out of my existence. I badly wanted to talk to someone, rest my head on a shoulder and cry.

As I said earlier, dialysis is something I can live with. But these additional problems are something I am getting fed up of.

Saturday, November 24, 2012

We are a corrupt nation

When I say we are a corrupt nation, I am not only referring to the corruption we see in government. I am referring to the corruption we see daily in life. The kind that you and me see everyday while going about our lives. The kind that you and me indulge in everyday.

Let us take an example. When I go to my doctor for a consultation, while paying the consultation fee to his secretary, I always tip him generously to ensure that when I need an appointment I get one quickly! 

Or when I need to get anything done for my house, let us say, I need to buy some electrical switches to replace some broken ones. There are two alternatives. Either I go myself and buy them or I give the electrician the money and send him to buy them.

Now I really don't have the kind of time or the energy to go and buy everything myself! So, I have no choice but to let the electrician do the job. I can say with a fair amount of certainty that the electrician over-charges me for the goods. The shop he buys from is, in all likelihood, in connivance with the electrician to ensure that the electrician always buys from him rather than go to any other shop.

If you look around you, you will find many such examples of small levels of corruption. We have become so used to this that we don't really care about it any more. We don't even feel guilty about doing this any more.

When you think about it, it shouldn't surprise us that the more powerful a person is, the larger the extent of the corruption. It shouldn't surprise us that the Union Government can actually argue that a scam of Rs. 1,658 crores is acceptable while a scam of Rs. 1.76 lakh crore is not!

Friday, November 23, 2012

Unscheduled skipping of dialysis session

I usually don't dialyze on Tuesdays. I used to skip Sundays but since Sundays are holidays and since we usually go out on Sundays, I would end up with more fluid than usual and Mondays would be slightly uncomfortable. So, I decided to go for a Tuesday-off routine since I am working that day and don't put on too much fluid.

This week however, we had gone out of town on Sunday and I was dead tired after returning. My fluid weight gain wasn't too much either. I just didn't feel like dialyzing. So I decided not to dialyze on Sunday.

I dialyzed on Monday, Tuesday and Wednesday. Monday night I did not sleep well. So, on Tuesday I decided to take a mild sedative. I slept well. On Wednesday night I decided to take the sedative again. Despite that I did not sleep well. So yesterday I was feeling quite tired and sleepy. When I got back home, I checked my fluid weight gain. It was about 1.3 kgs. Not much at all. So I thought I would not dialyze and get a good night's sleep.

When I am on dialysis, for the most part I have slept well. However it is not what you would call a 'perfect sleep'. It is about 80% perfect, if you know what I mean. When I don't dialyze, it is a perfectly sound, 100% sleep! So, yesterday, it was one of those ays where I felt like sleeping really well. So, I decided not to dialyze yesterday.

The best part about home dialysis and dialyzing daily is not only do you get better dialysis but you also get the flexibility and the freedom to dialyze according to your wish. You don't feel like dialyzing - don't dialyze! You need extra time, go ahead and do that!

Monday, November 19, 2012

Two girls arrested for FB posts: just where are we headed?

I was shocked and disgusted to read the news about two Mumbai girls being arrested by the police for making posts on Facebook that said that Mumbai should not close for Bal Thackeray's death. One girl made the post and the other 'liked' it.

Forget about whether they were right or wrong. What earthly reason did the police have, indeed, what possessed them to arrest the girl?

Further, what took over the court to actually - hold your breath - sentence the girls to 14 days imprisonment?!!! Just where are we headed?

I do not blame the Shiv Sainiks for what they did. What else do you expect from them?

What shocks me is the actions of the police and the court. I read some comments on the post that said that the girls were Muslims. So what? Please let me know what was illegal or inflammatory about a post that simply says the city should not be shut. People commented that many people did not know what Bal Thackeray did for Mumbai. Does that mean that someone saying that he did not do anything for Mumbai should be arrested?

Let us not accept this kind of blatant intolerance in our country. Hinduism is often praised for its tolerant philosophy. I am reminded of Evelyn Beatrice Hall's quote (often misattributed to Voltaire):

“I disapprove of what you say, but I will defend to the death your right to say it.”

Friday, November 16, 2012

The Parekh kutumb gene

When Saroj Bhagwanji Vora married Mohanlal Lavji Parekh many decades back, what hit her hard was that the Parekhs often ate idlis for dinner - "Aa loko to jamva ma idli le!" Brought up in a traditional Kutchi Gurjar household, she was used to a more 'sarkhu jaman' - sev tamata nu shaak and parathas, khichdi kadhi, bajra na rotla and ringna nu shaak and so forth. So this came as quite a shock to the teenaged girl. For her idli was something you only did for breakfast.

Little did she know that the clan of Gujarati businessmen who migrated from Gujarat to Bangalore took to idlis like a fish takes to water. They relished them so much that they wouldn't mind - in fact would love - idlis even for dinner! Saroj quickly adapted and became adept at making great idlis and even acquired the taste for idlis. As they say in Gujarati, "Ghar joine gotrej aave!" (I really cannot translate that but it loosely means that someone who marries into a house is usually like the members of the house!)

Cut to 2012. Scene: Poorna Tiffins. Naman, my nephew accompanied my brother Prasan and me one Sunday morning. He loved the idlis so much that he polished off 12! Now that is no mean feat for a skinny boy of 8 years. I couldn't help remarking, "That's the true hallmark of a Parekh kutumbi. It's strange how the Parekh kutumb gene manifests itself!"

We have surprised many people with this quirk. A few days back, Prasan revived the tradition of the dinner after the Diwali poojan. We had the entire kutumb that resided in Hyderabad gathering at Prasan's new company, Stone Plus. Guess what was on the menu? Of course, idlis! Some people were wondering why we had idlis. I tried explaining the gene to them. They did not understand.

Wednesday, November 14, 2012

Ban the bulk SMS from mobile phones

No, I am not talking about the 'pesky SMSes' sent by marketing companies. I am referring to the following flow:

1. Compose SMS
2. Choose from Contacts...
3. Select all
4. Type some cloyingly sweet message on the occasion of Diwali, Dussehra, whatever
5. Send!

So impersonal. So artificial. You don't even know who you've sent the message to! Whether that person is dead or alive. Whether you're still friends with him. Whether he celebrates the festival or not.

I find these messages very irritating. I get them from people I might have interacted once in my life and I forgot of their existence only to receive this SMS from them on a festival. Mind you, they've forgotten of my existence too. And what's worse, while I am reminded of their existence by the SMS they've callously sent, they are still clueless of my existence! Not fair!

That is why, getting the personalized message from Aditya is so heart warming! "Dear Kamal", it begins, "Wishing you and your family a very Happy Diwali! -Aditya." Very effective. You know the person has spent a few moments remembering you and has at the very least typed your name. The copy-paste feature of phones these days enables you to avoid typing the whole message again and again. But you're sure that at least your name was typed! So much better!

Monday, November 12, 2012

Diwali snacks!

My memories of Diwali are all of us going over to the "Jagat Pictures" office in the evening and having the traditional Chopda Poojan which was a simple pooja of the account books along with the Goddess Saraswati and Goddess Lakshmi. The pooja would be followed by snacks and a lot of socializing and then a visit to the temple.

Diwali would be preceded by a thorough cleaning of the entire house, preparing snacks and sweets for Diwali and buying new clothes. Those were innocent days!

When the "Jagat Pictures" office was officially closed down, the poojan was not performed for a few years. When however, my father took over the clothes shop "Adam n eve", he revived the tradition of the poojan and ever since then we have been having it! The ritual cleaning of the house is still done every year and my mother, who is a stickler for cleanliness insists on spending a few weekends before Diwali with the help of the maids to do a complete wash of the house.

Coming to the point of this post, the Diwali snacks. I just realized that every Diwali snack we make is deep fried. The Khari poori, the mori poori, the sev, the ganthiya, the ghooghras, the mathiyas, the cholafali, the chudwa and that mother of all deep fried delicacies - the pakwaan!

Snacks made at my house for this Diwali

To add to all this, you have a plethora of sweets that you get on the occasion.

The hours spent at the swimming pool and doing the strenuous yoga stretches must all be getting nullified in a matter of a few days! Well, it is Diwali, so I am not complaining!

Saturday, November 10, 2012

The Wearable Artificial Kidney - closer than you can ever imagine

When I first heard about the Wearable Artificial Kidney (WAK) by Dr. Victor Gura of Cedars Sinai-UCLA, I was a little skeptical. I thought it was good but it would be out in the market long after I was gone! These kinds of revolutionary treatments or devices usually take decades, if not more, to reach the common man, especially in countries like India.

For those who are not aware of what the WAK actually is, let me give you a small introduction. Dialysis machines currently are bigger than a typical washing machine. My machine is about 5 feet in height and about a foot and a half square. For my treatments, I need about 300 liters of pure water - water that has been treated by a Reverse Osmosis process. The water purification machine is also fairly large and I need a special storage tank to store the treated water. You can imagine how big the whole setup is. Not portable by any means.

A few years back, a machine called the NxStage System One was released. This was a true game changer. It reduced the size of the dialysis machine to about the size of a multi-function printer. It was also designed to be very easy to use so that patients could actually use it at home. This machine gave a lot of freedom to patients. They could now dialyze at home, they could travel with ease.

Bill Peckham with the NxStage System One

The WAK takes miniaturization to a whole new level. It can actually be worn around your waist like a belt. It is completely portable and does not require a water treatment plant. The power requirements have also been reduced to such an extent that the machine can run on batteries! 

The WAK received a huge boost when the FDA (authority in the US that must approve any new treatment or medication) included it in the Accelerated Development Pathway program which meant that the device would not need decades before it came to market!

I recently interacted with the man himself! Dr. Victor Gura and his company Blood Purification Technologies are now on Facebook! I sent him a message asking him about the time he estimates this device to reach active production and about his plans for countries such as India. He responded saying it should take 2-3 years and that they would try their best to ensure that the device becomes available in as many places as possible!

The trick will be to avoid being gobbled up by the companies for whom this device will not make sense. The money power of large corporations for whom profits are more important that saving lives is a real danger in the development of this device. More than the technological ability to develop this device, Dr. Gura will need some extraordinary management and strategy skills to help him ensure that the device reaches the intended beneficiary - the patient.

Friday, November 9, 2012

Aashayein to be held in Bangalore!

Aashayein, the day long fun and educational, free event for dialysis patients is going to be held in Bangalore! Its on Sunday, December 2nd at Hotel Fern Citadel near Anand Rao Circle from 9 a.m.

Aashayein is a great event for us dialysis patients. There have been two events organized in Hyderabad so far and patients have loved it. There are educational talks by nephrologists, transplant surgeons, vascular surgeons, dieticians and patients. There's usually some great entertainment as well.

One of the highlights of the event is the elaborate lunch prepared as per the dialysis patient diet. Usually, we patients have very limited eating options when we go for any such event. Most of the food is too dangerous for us to eat. This can be very frustrating. You see all the fancy food and people gorging away and you can only look! At Aashayein, the tables are turned. Patients get the fancy food while people with normal kidneys are served a modest meal!

Patients are also given a whole bunch of goodies.

Registration is mandatory and will close when the capacity is filled. So, I would register early! (I have already registered for the event and am really looking forward to it!)

For more details about the event and to register, please visit the Aashayein website.

Monday, November 5, 2012

Samiir, avid trekker, marketing head and on dialysis!

"It has been 11 years since both of (Samiir) Halady’s kidneys failed, when he was only 28. Since then, he has needed dialysis to survive. But still, Halady says proudly, he has managed to live life with few compromises.

An MBA from Narsee Monjee Institute of Management Studies in Mumbai, Halady now heads the marketing team of a digital agency, which manages advertisements on the internet. It was sheer courage, once his body started failing him, that kept him going. Halady’s condition means that he cannot ever cheat on his special diet, and has to undergo dialysis twice every week."

I am proud to say that Samiir Halady is a great friend. We've met each other only once! We share a lot. Both of us were hit by kidney disease at a very young age. There's one very important difference though. Samiir treks! Yes, that's right! He goes on arduous weekend treks around Mumbai with a group he founded called V-Hikerz.

Trekking is a very strenuous activity. Even many people with functioning kidneys would find it difficult. Yet, week after week, Samiir heads out on his weekend trips taking in the beauty of the mountains, the music of the waterfalls and the mystique of the forests, living his dreams.

On his blog, Samiir says, "Life with Renal Failure and hemodialysis is not so bad. There are ways to live a full life." Samiir shows us all how to do this!

Samiir's amazing story was featured in the latest issue of Open, a magazine from which the above extract is taken.

Sunday, November 4, 2012

Poorna Tiffins, this is your last chance

I don't remember since when I have been going to Poorna Tiffins. Its been a few years at least. Every Sunday morning, I religiously visit this joint about 12 kilometers from my house and relish piping hot idlis topped with ghee along with the coconut chutney. I have introduced many friends to this place and they have, without exception, absolutely loved the place. My friends and I have even had two idli-eating competitions here!

I have never had problems with the taste of the idlis here until now. They would always be very soft - they would almost melt in your mouth. However, for the last couple of times, the idlis weren't as good as usual. It was very disappointing. Now, they were better than many other places. But definitely not Poorna standard! The trouble is they have set such high standards that we have really been spoilt! Anything less and there's bound to be a lot of consternation!

I told the owner last week. He said they're having attrition! They're having to hire new people who are not as good as the original team! They're having to hire temporary people who don't understand quality! And we all thought that software companies are the only ones facing people problems! Imagine a critical function like making idlis being dependent on people rather than processes! Vikram Vuppala would not be happy at all!

Unfortunately I can't be bothered with Poorna Tiffins' internal problems. I want my idlis and I want them soft! Making the 24 kilometer (12 km, two ways) trip every week needs to yield good dividends. Otherwise, its just not worth it. Of what use is a pilgrimage if you can't get a darshan of the presiding deity?

I decided last week on my way back that I would give them one last chance. If they don't fix things and get the softness back into their idlis, it is going to be "Farewell, Poorna Tiffins". It would be a sad day in history. But I don't see any other way out.


UPDATE: The idlis were great! 

Friday, November 2, 2012

The unethical antipathy to PD

In the past few weeks I came across two patients - one who is actually related to me and stays in Mumbai and the other - a reader of my blog. Both had very thin veins because of which repeated attempts at making a fistula in their arms had failed. This should have been clear in the first attempt itself. Despite this, the patients were made to undergo the torture of a failed surgery again and again. Both had residual renal function. Both did not have an issue of not being able to afford the cost of treatment. Despite this, Peritoneal Dialysis (PD) wasn't even mentioned to them as an option!


Why this antipathy to PD?

I find it extremely frustrating that patients are not even told about it. Its like it is a bad word! I know I keep talking about this again and again but when I hear about these kinds of cases, my guts revolt. I feel helpless and angry at the powers-that-be in the dialysis industry who spare no thought for the plight of patients and can think only of their own selfish, commercial interests.

While chatting with my fellow dialysis patients while undergoing dialysis in hospitals, we used to often say that this is such a horrible disease that we would not wish it upon our worst enemies. But when I get to know about such cases where there is scant regard for basic human values, I find myself hoping that these people who take such decisions should get this disease. Only then will they realize what it means to suffer like this. Only then will they realize what it means to be denied a chance to decide for yourself. Only then will they realize what it means to be condemned to a life of hemodialysis when there is a better alternative. Really, they should experience this first hand.

We really need to move to a system of healthcare where the treatment is decided devoid of any commercial consideration whatsoever. Doctors must strictly be on a salary. In fact, I would go to the extent of saying that a part of their salary must be based on the outcomes of the patient they treat. If a doctor's patients live longer and have a better quality of life, he or she must be rewarded. Currently, our healthcare system is so horribly flawed that it is commercial gain more than anything else that dictates many decisions.

The Medical Council of India (MCI) had a while ago banned the giving and receiving of gifts and trips by corporates to doctors. This remains mostly on paper. This corrupt practice is far more dangerous than the multi-crore rupee scams carried out by politicians. They are actually playing with human life. This is the most base, the most sickening form of corruption.