Friday, August 15, 2014

Very informative webinar on Atypical Hemolytic Uremic Syndrome with Dr. Tim Goodship


Many nephrologists in India very rarely come across a patient with Atypical HUS. For many patients,  diagnosis with this disease becomes an endless journey of uncertainties. So little information is available on this disease that doctors hardly have any resources to look towards to be able to manage their patients well.

Prof. Tim Goodship from the Institute of Genetic Disease in Newcastle University, UK has been one of the leading researchers on this disease. He has been working on this disease for the last twenty years! A lot of the authoritative papers that are referenced by doctors around the world are authored by him.

EURORDIS and NORD, organisations that have been doing fantastic work in the area of rare diseases have setup a website called rareconnect.org that aims to bring together patients, doctors and researchers of various rare diseases and improve interaction, funding, policy making and support for patients hit by rare diseases.

rareconnect.org recently organised a webinar on aHUS with Dr. Goodship that has some really great information on this disease and some latest protocols. Anyone with an interest in this disease must watch it.

Here is the link.

Wednesday, August 13, 2014

Donate to The Wearable Artificial Kidney Foundation - help change the lives of many



I am a huge believer in the WAK. I feel that this device has what it takes to really change the lives of the thousands of people on dialysis. There have been some doubts expressed about whether the device would actually be successful. I have some reasons to believe that these concerns would be addressed very soon.

The biggest reason for this belief is that the FDI in the US has chosen this project, among just three projects for its accelerated approval program. This totally shows that the FDI genuinely thinks that this device can be successful and would really make a huge difference to thousands of dialysis patients.

So, I have a lot of faith in Victor Gura and his team and am certain that they will take this project to fruition. I had the ultimate privilege of meeting the man himself when he visited Hyderabad to speak at the HDU conference earlier this year. I found him to be an extremely affable, down to earth and confident person.


Currently, they are raising funds to do clinical trials and complete the requirements for being approved by the FDA. Unfortunately, they are short of funds to do this. There have been some corporate supporters who suddenly withdrew their funds. I have written about their suspected intentions here. Well, whatever their intentions, now the WAK needs funds to be able to proceed. They have now created a WAK Fund to help complete their project. They have requested the public to donate and help them to do this.

Many people, who sit in their board rooms and discuss stuff between endless cups of coffee would scoff at Victor Gura and his team and laugh at this attempt. They would think that only people with huge bank balances would be able to help see through this project. To them, I quote Steve Jobs (of whom I am an unabashed fan):

"Here's to the crazy ones, the misfits, the rebels, the troublemakers, the round pegs in the square holes... the ones who see things differently -- they're not fond of rules... You can quote them, disagree with them, glorify or vilify them, but the only thing you can't do is ignore them because they change things... they push the human race forward, and while some may see them as the crazy ones, we see genius, because the ones who are crazy enough to think that they can change the world, are the ones who do."

I am going to donate from my meagre savings to Gura's WAK Fund. I would urge you to do as well. The donation amount can be as little as USD 5! So do your bit. Whatever you are comfortable. For as little as USD 125, you can get a T-shirt with the logo of the foundation embroidered! People with other currency credit cards can also donate. If you don't want to go through the hassle of donating online, please let me know and I will do it for you. But do donate! Thanks!

Click here to donate.

Tuesday, July 29, 2014

The quest for the perfect idli - found it!

I had, of course, gone there for idlis. I asked for a plate. The idlis were served with a chutney and karam podi on top. I took a bite. The first ting that put me off was that the idlis were not steaming hot. An idli tastes best only when it is hot. These were not stale, but not 'just off the flame'. Passable, I thought to myself. I asked for another plate and asked for hot idlis. A guy who seemed to be calling the shots and whose name seemed to be Ram from the way people addressed him as 'Ram bhai' - a lad of about 24-25 - pulled out a steel container from atop the bandi and handed me a plate. Seemed to be just the same. Insipid fare.

Disappointed, I headed back home. I had still to find the perfect idli in my city.

This Sunday, I decided to go back to Govind ki bandi. I had been there with my brother a couple of months back. I had loved the idlis there but due to the perceived distance, I did not go there again. I say perceived because it is right next to the famous Charminar which is considered to be far off from my house. I checked the distance on Google Maps and was surprised to find it was just about a kilometre more than Poorna.

I have this thing about me that feels a little hesitant to do things I like especially if they involve a little effort. My Libran indecisiveness makes things worse. So, this Sunday morning, as I was sipping my Darjeeling tea, I debated endlessly whether I should go there or not. I wondered if that day being the last Sunday of the holy month of Ramadan would result in huge traffic. Not at 7 a.m., the other side of me argued! Finally, I decided to go.

I reached in less than 20 minutes! The roads were empty if you disregarded the carts that had the wares that were on display for sale the previous night. The rain had also made the roads quite mucky. I parked my car as Govind's bandi came in sight. The owner, Govind and his staff were all now decked in red T-shirts that had "Govind's Dosa" painted on them.



I ordered a plate of idli. They served a plate of piping hot idlis with chutney poured over them. I took a bite. It was awesome. I enjoyed every bite. Ordered one more and then one more. I then saw the wadas. They looked tempting as well. I disregarded my diet that prohibited fried foods for a bit and finished off a plate. This was truly heavenly. I was very happy with this find.

I will now make this a regular Sunday affair. My quest for the perfect idli in my city had finally ended!

Monday, July 28, 2014

The quest for the perfect idli

For those who know me or have been following this blog for a while now know that I am an unabashed lover of idlis and go to extreme lengths to find good idlis. You might also know that I have been a great fan of Poorna Tiffin Centre in Yousufguda, Hyderabad. I would travel about 9 km every Sunday morning to get my weekly idli fix.




For the last few months, however the quality of the idlis in Poorna tiffin Centre has deteriorated. I did continue for some time for the lack of other options. The generous pouring of ghee on the idlis probably made up a bit. Things changed however, when my nephrologist remarked that I needed to lose weight. Ouch! That hurt. So, I decided to give up the ghee on my idlis among a lot of other changes to my diet. Apart from giving up on sweets and fried stuff, I also made this rather dramatic change to my dinner - a bowl of thick vegetable soup, curd and fruits. All this did help and I lost about 4 kgs in a couple of months.

However, I digress. Coming back to the topic, the idlis at Poorna without ghee were quite ordinary - a far cry from the fare I had many a times waxed eloquent about. Time to change, I thought.

I switched to the place opposite Pragati Mahavidyalaya near King Kothi. The idlis were good. The chutney however was extraordinary. Dr. Krishnan, a famous nephrologist in Secunderabad had once remarked, in response to my gushing over the beauty of idlis, and a rather interesting remark, I might add, that to him, an idli was a way to get the more interesting accompaniments like the chutney or the sambar into your mouth!

To me the idli is the ultimate food. The accompaniments are just that - mere accompaniments. Which is why, the Pragati idlis did not cut it quite fully. The idlis were good. Period. For me, good is not good enough. The quest was still on.

There's this group on Facebook called Foodies in Hyderabad. People there are as crazy about food as I am. I saw many posts about idlis. The names of Ram ki bandi and Govind ki bandi had been mentioned quite a few times. I decided to try them out. I went last Sunday to Ram ki Bandi. The crowd there was quite inspiring. Most people however were opting for the dosa. "Buttter dosa, butter cheese dosa, masala dosa", I could hear people saying.

To be continued tomorrow...

Monday, July 14, 2014

Seventeen years with kidney disease



Today, 14th of July, marks completion of seventeen years of life with kidney disease! 14th of July, 1997 was the day when I took those vaccines that triggered my Atypical Hemolytic Uremic Syndrome which, as I would find out later, was due to a genetic mutation in my body called the CFH/CFHR1 hybrid gene.

It's been by no means, a peaceful journey. The shock of the initial diagnosis (I had never heard the word 'dialysis' in my life before, a word that would come to define who I am, something I would need to live with for a long, long time), the transplant, PD, the tsunami, the struggle to be able to continue PD, home hemo, I really have 'been there, done that' where kidney disease is concerned.

I was only 21 when I was diagnosed. I K Gujral was the Prime Minister. The Sensex was around 4,200. The Rupee was around 35 to a dollar. That was a long time back indeed!

Now, as I enter my eighteenth year, I see some signs of fatigue in my body. The neuropathy is getting worse. The low grade bone pain won't go away despite my blood tests being fairly good.

I need to make sure that my mind remains as strong as ever.

Looking at the positive side of things, who would have thought I would be making a career out of this? Today, I am a Co-Founder and Director in India's largest dialysis provider company! That is not a small thing. When I go to doctors of other specialties, the question invariably veers to what I am doing. When I mention NephroPlus, they are all amazed. The conversation moves from my problem to the NephroPlus story and I almost have to pull them back to what I have gone there for!

I need to thank my co-founders, Vikram and Sandeep for this. Without their initiative, hard work and constant support, it would really have not been possible.

My parents and family have also been such tremendous support. Kidney disease is really too hard to deal with without the support of your family. I have been really lucky in this aspect.

Looking forward, I intend to carry on for many more years, dealing with my problems with fortitude and cheer. Many people praise me for my attitude. Honestly, for me, this is not something that I do consciously. It is not like I tell myself that I need to deal with this problem in such a way. I get unnecessary credit for this. It is just something that I do because I feel better that way. Its really that simple.

Saturday, July 12, 2014

Two recent disruptions to my 'normal' life



I don't really consider myself as a 'patient'. I lead a pretty normal life - I work full time, I swim every day and I travel quite a bit. Apart from the nightly dialysis I undergo six times a week, seven hours each night, I am what you could safely call - normal!

But from time to time, issues do come up. That's how kidney disease is. Mind you, I did not say, 'that's how dialysis is'. Kidney disease is the problem, not dialysis. Dialysis is a partial solution to kidney disease! More on this in another post.

Coming back to the original point, kidney disease has this nasty habit of affecting every other organ cell in the body. So, time and again, something pops up that will bother me and need me to get it checked and possibly, treated. At these times, I need to become a 'patient' again! There are no two ways about it - I absolutely abhor those times!

A few months back, I had an itch in the left ear. I took a earbud and rubbed the insides of the ear. My hand however lost balance and the earbud went and hit the ear drum. I had intense pain for a few minutes. But I could feel that something had gone wrong inside and asked my aunt (who is a doctor) who recommended I put an antibiotic ear drop. I did that and the symptoms subsided only to reappear after a few days. I repeated this a couple of more times changing the medicine. No permanent relief. For the last couple of months, I have a crackling sound in my left ear. It can be very disconcerting! Also, it becomes very bad after I have skipped a night of dialysis.

My nephrologist, Dr. Girish Narayen, suggested I go and see an ENT specialist. So, I visited the clinic of Dr. Mohan Reddy, underwent an Audiometry and then the doctor concluded that I needed a week of antibiotics - Amoxicillin Clavulanate. That wasn't so bad. That drug has now become like my staple food. I take it so freakin' often. The bad part was that he asked me not to swim for a week! Gawd! How could that be possible, I thought? I mean, would I be able to live through the trauma? :-)

Well, that was that. The ear problem, hopefully, would be taken care of.

Then coming to the more bothersome problem - sensory motor peripheral neuropathy. Basically neuropathy is a common problem on long term dialysis patients. I will complete 17 years in a few days. That is l-o-n-g! So, neuropathy is to be expected. I would have expected it to be mild given that I am on daily nocturnal. However, it started off in 2008 mildly. My feet had become slightly numb. But six years on, my feet have started paining. So much so, that I find it difficult to walk freely. I consulted my nephrologist and he asked me to see a neurologist.

I went to meet Dr. Srikanth Jawalkar, at Yashoda Hospital, Secunderabad whom I had consulted in 2008 and he asked me to get my Nerve Conduction Studies done - a test to determine the condition of the nerves. I had a really tough time getting this test done. First, an unpleasant lady managing the test area, then the waiting for two and half hours followed by some senseless test technicians who shook their head and hands like there was no hope on seeing the monitor that showed the nerve conduction! I expected some bad results so wasn't worried but these dopes could kill an unsuspecting patient with their mindless actions!

Next day, I collected the report and met the neurologist. He confirmed that the nerves had quite a bit of damage. Nothing could be done about this. He did give me some medication however which he hoped would reduce the pain. He will review after three weeks.

So, again, that's that!

More than the actual diagnosis and treatment, what bothers me is the waiting, the dealing with the staff, the chaos at the hospitals, basically the entire 'patient' experience. This really needs a lot of patience. Whoever chose the word 'patient' to describe a sick person probably foresaw the future!

Friday, July 4, 2014

Remove all limits from Section 80DDB, Finance Ministerji!



There is an exemption that people suffering from certain chronic diseases are given in their tax in India. It is under Section 80DDB. This is a very thoughtful gesture on part of the government. Anyone who spends money for the treatment of the diseases identified (the list includes Chronic Kidney Failure) for either self, spouse, sibling, offspring or parents is eligible for this deduction. The overall theme is the money you spend on treatment of such diseases should definitely not be taxed. The limit on this exemption is Rs. 40,000 per year. This is in addition to the Rs. 15,000 for medical expenses that the general public is offered.

I am not sure when this section was introduced to the Tax Code but what I can say for sure is that the limit is really ridiculous in this day and age. Rs. 40,000 a year for a chronic disease?! Heck, most people spend that much in a couple of months!

The Government of India hardly does anything to make the life of people with a chronic condition better. In comparison to countries that either completely bear the cost of healthcare like Australia, the UK and Canada, India hardly provides any help to her sick. Some states in the country are getting better with programs such as Aarogyasri but on paper, these programs provide help only to people who are extremely poor. Anyone who knows anyone with a chronic disease knows that even a year or two of living with the disease can wipe out an entire family's savings. This disease hits middle and upper income classes badly as well. There is no relief offered by the government to such people.

In this scenario, what can be worse than to tax the money spent to treat the chronic disease. Imagine someone who earns Rs. 50,000 a month and say, spends Rs. 20,000 on the treatment of the disease. That Rs. 20,000 is also being taxed! What can be more unreasonable than this?

It is really important for the Finance Minister to realise this gross injustice and do something immediately to correct this. Yes, in India, the possibility of misusing this could be there. That does not mean you deprive those who really need this benefit from getting it. Find ways and means to check misuse. I am sure this can be done. Insist on original bills, a doctor's prescription, whatever it takes. But correct this discrepancy.

I am fully appreciative that we have this section. Conceptually, it is really great. However, in practice, the limit renders it quite meaningless. Remove all limits. Let the tax exemption be on actuals. Whatever be the amount.

We absolutely need something like this from the new Government. Let people suffering from chronic conditions also see some 'acche din', please! Is this too much to ask?