Saturday, December 27, 2014

The difference a good doctor can make - and its not just medicine



I have been bogged down with bad bone pain for the last few months. Various trials and errors have yielded some benefit but nothing permanent or long lasting. I started getting severe localised bone pain at various places from time to time. Recently, I have been bothered with pain in my left rib. I was referred to an orthopedician, Dr. Veda Prakash of Care Hospitals, Banjara Hills for this. This doctor prescribed some tests. I had also mentioned to him about the Cam Impingement. He passed on my case to Dr. Praveen Mereddy, his colleague also in the same hospital who specialised in the hip area.

I met Dr. Praveen Mereddy yesterday. He did a great analysis of my X Rays, my MRIs and other history and concluded that the pain was more likely related to the mineral imbalance in my body and suggested that I saw an endocrinologist. The good part about Dr. Mereddy was that he took pains to explain his analysis to me. He showed me why he thought the pain was more related to the mineral imbalance rather than the cam impingement. He seemed apologetic about referring me to another specialist for this but I was convinced with his explanation.

Next stop was Dr. Srinagesh, the endocrinologist, also at Care. Another great doctor! Dr. Srinagesh analysed my history and zeroed in on the probable cause soon enough. He also explained to me in detail what the problem was and how it was acting. It all seemed very convincing. He also gave me his card and told me to call him or email him if I had any problem. After I went home, later in the night, I received a text message from him advising one more test which would help!

I was feeling really depressed yesterday and these two doctors really made my day. I actually felt cheerful after walking out of the hospital! And I hadn't even started the treatment!

Doctors can make such a difference. Even without beginning the treatment, they have the power to make you feel better! Just by treating you with respect, acknowledging that it is YOU who are suffering, it is YOU who need help and that is why it is my duty to educate YOU about the problem can make so much difference.

Little gestures, all it takes are little gestures. We patients have low expectations. History has made us like that. So, treat us with respect. Don't think all of us are dumb fucks. Well, truth be told, some of us are. But not all! Explain to us what you're thinking. Involve us in your decision. It is our body after all. Is this too much to ask?

Thanks Dr. Mereddy and Dr. Srinagesh for making my day. I want your treatment to work. For me, for you.

Sunday, December 21, 2014

Kolkata Diary

I haven't been traveling lately because of my bone pain. So, I was really feeling bad that I would not be able to go to Kolkata. The Annual Conference of the Indian Society of Nephrology, called ISNCON at Kolkata was where NephroPlus was presenting two oro-posters, as they call it. For the first time, we had analysed a large amount of data and came up with two significant abstracts based on possibly, the largest ever Indian patient base! I was involved in this project right from conceptualisation to actualization. I thought about it long and hard and decided to bite the bullet and go to Kolkata.

First impressions

It was more than 20 years since I had been to Kolkata. The last time was even before kidney disease had struck. It was on a holiday to Darjeeling with my family. Now, of course, West Bengal has broken off from the shackles of the Left Front and was being governed by someone who promised to bring in poriborton or change. I was there for too little time to reach any conclusion on whether there was any change or not. From TV debates, it does not seem that much has changed on the ground. But then, TV debates are hardly any indication of what the truth is! From the brief journeys by cab between the airport and hotels, one thing struck me. There were vast swaths of wasteland interspersed with posh looking buildings which were quite a contrast.

Breaking new ground

The main purpose for which we went to Kolkata - the presentation of our abstracts - was on the morning of Friday at the Hyatt Regency near Salt Lake Stadium. As soon as we got there, we got to work. We set up the posters and then got ready to take questions. There was quite a bit of intrigue for our work. The judge came after about an hour and a half of setting up the posters. She was very interested in the paper on 'Evolving Dialysis Practice Patterns in India'. Indeed, we had, for the first time in the country documented dialysis care patterns in India in such a large number of patients!

Being the largest dialysis provider in the country, NephroPlus has a huge advantage because of its presence in different parts of the country which makes the population being studied all the more representative rather than most other studies which are typically from one hospital or at best one small part of the country.


"Evolving Dialysis Practice Patterns in India"



"Anemia Management in Patients on Chronic Dialysis in India"



From L to R: Dr. Dilip Bhalla, me, Dr. Georgy Nainan, Vikram.


Nephrologists, nephrologists, nephrologists...

Almost everywhere you looked inside the Hyatt, you would see a nephrologist! The ISNCON is the single most important event in the Indian Nephrology calendar. Most nephrologists make it a point to attend this conference. While talking to the delegates, I learnt that the participation has been improving steadily. A few years back, while they would receive about 50-60 abstracts, the number has been continuously rising and this year, they received about 300 abstracts! The attendance at the lecture halls has also been very encouraging of late with this year seeing barely an empty seat for most talks!

I got an opportunity to meet with some of the stalwarts of the Indian Nephrology community, most of whom were very happy to meet someone who has been on dialysis for almost eighteen years!


With Padmashri, Dr. D. S. Rana, Gangaram's Hospital, Delhi.


Jhal muri, Mishti doi

The two days at ISNCON were so packed that I did not get a chance to sample any traditional Bengali fare. So, at Kolkata airport, I was keen to correct this. Luckily, I found a food court where I got a chance to try the Jhal Muri and the Mishti Doi.

The Jhal Muri looks similar to the Bhel Puri that most of us are familiar with. There are two very important differences which make the taste very different from Bhel puri. There are no chutneys added. The base mixture is completely dry. The second difference, which gives the Muri a completely unique taste is the mustard oil that is added. The result is a real treat to the taste buds!



The Mishti Doi is a very simple sweet dish which literally means sweet curd. It is prepared with curd and caramelised sugar. The best things in life, they say, are the simplest. The Mishti Doi is a perfect example of this statement!

Friday, December 12, 2014

PM Modi must rein in the loony fringe in the Parivar



Its been about six months since the Government took over. When the Government was sworn-in, I had written about how very rarely, in this day and age, does a Government get such an overwhelming majority in the Indian Parliament and why this opportunity must not be squandered.

Though the Government has done a decent job on a lot of fronts, the danger of not succeeding lies within. We see, with amazing alacrity, every now and then, some Hindutva-obsessed lunatic making a remark or doing something so crazy that the Government has to spend an inordinate amount of time defending this.

Let there be no mistake. This Government was not elected on the Hindutva platform. There was nary of mention of religion in Modi's speeches. Yes, there was the odd ridiculous speech here and ludicrous interview there. But, by and large, it would be safe to say that this election was won on the platform of development.

There is so much to be done by the Government. Some very good initiatives have been rolled out, some are on the drawing board. India can ill-afford to have the Government's focus shift away from these critical issues. Let us not forget that we may not see a Government with a majority in the near future.

Another important aspect is that there was a lot of distrust of Modi among the minorities. That did reduce recently. A large number of Muslims and Christians voted for Modi assuming that he would solve their basic problems. When the demented dudes and dudettes of the Parivar are given a free rein, and some actually encouraged, these minorities would feel let down. They will never vote for Modi again. The task at hand for the Prime Minister is not one that will be accomplished in one term. We need a strong Government for at least two terms to give any positive direction to the country. Without the support of the minorities, I am afraid, such a majority in Parliament would not be possible.

Modi is seen as a strong leader. Few doubt his intentions. If he does not act soon enough to control these loose canons and makes sure he takes the entire country with him in the march to development, he would have lost a huge opportunity to make a real difference. He would have only himself to blame for this.

Thursday, December 4, 2014

When talking about the dialysis diet was called 'vulgar'



I was talking to a group of dialysis patients a few months back. I first did a general talk about how to have a good quality of life despite being on dialysis. I then had a Q&A. Typically, questions in this kind of a session invariably turn towards the diet. Diet, for most dialysis patients, is the worst problem if you don't count fluid restrictions.

I was answering some of the general questions on diet when a gentleman, probably about 60 years old started shouting. His contention was that any talk about things like diet was totally unnecessary and he even called it vulgar. I was quite taken aback. He said his wife was on dialysis and their entire life's savings have been spent on her treatment. The anger in his voice was palpable. For him, any talk that purportedly gives support to dialysis patients should only be about how patients should work together to get the government to subsidise dialysis or even make it free.

I explained to him that while I understood the financial problem of dialysis patients and their families, for the patients, diet is a big problem. Addressing the financial issues was going to take time in a country like India because a huge, concerted effort from patients, families, providers, doctors etc. would be needed and the process would be very slow. In the meantime, what was wrong in patients getting some queries answered on their diet and other simple things that could make their life better?He softened up after this.

I could totally understand his problem though. While in developed countries, patients don't need to think about how much their treatment costs, in India, treatment options are primarily dictated by ability to pay. When patients are often wondering how long they would be able to continue dialysis, talk about diet, exercise, quality of life etc. may appear vulgar!

When I talk about more frequent dialysis, I realise that a large number of patients would do it if they could afford it. When the constraints are not in your control, what really can you do?

Honestly, I was quite shaken up by the gentleman's outburst. Their life probably turned upside down after the diagnosis. All their plans probably went haywire. He needed some place to vent. He obviously couldn't vent in front of his wife. I am at least hoping that he didn't do that! A guilt trip is the last thing a dialysis patient needs!

This is why I am fully supportive of any attempt at Government sponsored healthcare. We need to eventually get into a mode where an individual gets the treatment he or she needs without having to worry about where the money for this is going to come from.

Sunday, November 30, 2014

Modi government planning Universal Healthcare rollout in India



India currently spends about 1% of GDP on healthcare. China spends about 3% and the US about 8.3%. That is about to change. If things go as per plan, Prime Minister Narendra Modi's government is planning to rollout Universal Healthcare for India beginning April 2015. The project will be taken up in phases and would eventually cover the entire country by March 2019.

I have always been a proponent of Universal Healthcare. The erstwhile united Andhra Pradesh state had shown the way by implementing the dramatically successful Aarogyasri scheme where people who were below the poverty line (BPL) were given access to healthcare they could only have dreamed of in the past. Currently, of course, the number of beneficiaries of the scheme far exceed the number of people who were BPL as per the records. The scheme is being misused by people who are not the intended beneficiaries. Despite this, I would say the scheme is really good because the lives of thousands of poor people are being saved every year thanks to this scheme. The loopholes must be plugged and the scheme continued.

Modi's task would, of course, be far more challenging. For starters, however, they wouldn't have to worry about unintended beneficiaries getting the benefits of the scheme. There would be no unintended beneficiaries as the scheme is not restricted to BPL people. It is for all. Some might argue that this is not wise as there was no need to subsidise healthcare for people who could afford it. While this argument holds merit in the case of the super rich, ask any middle class family with someone on a chronic condition like dialysis and you would see how medical treatment can wipe out any average family's life's savings in just a few months.

The scheme is going to cost the government about $11.4 billion annually. To put this number in perspective, India spent $47.4 billion on defence in 2013. So a fourth of that for Universal Healthcare is a good bargain, if you ask me!

The plan is being thought through well. Primary healthcare will continue to be offered by the Government especially in rural areas where infrastructure is going to be improved. Tertiary healthcare is going to be offered through the insurance model. The scheme includes some basic drugs and diagnostic tests free.

While reaching the entire country in an effective way will obviously take decades (which is not surprising since it involves a sixth of the world's population!), we must not shy away from this basic necessity of the people due to this. A beginning has to be made somewhere.

I have always maintained that access to healthcare should be a fundamental right. No citizen of the country should be allowed to suffer if a treatment is available just because he or she cannot afford it.

Dr. Martin Luther King, Jr had once said, "Of all the forms of inequality, injustice in health care is the most shocking and inhuman." Let us not allow this injustice in health care to continue for much longer in our country.

Sunday, November 9, 2014

Only something that will prevent HUS recurrence can help me in the long run

I have often felt that I don't really want to get a transplant. I am leading a fairly normal life - working full time, exercising, traveling. Why would I want to do anything different? The only problem was the dialysis sessions I needed at night which I was managing fairly well. Well, travel was restricted but it was not a major problem and in a couple of years, we should see some portable machines come to India and that should be taken care of as well.

However, I am not sure if that is entirely accurate. Dialysis, however much you get, can never replace all the functions of the kidney. There are some functions that it does not even attempt to replace. That is left to the medicines to manage. We unfortunately know so little about the human body that it is always an uphill task to manage such intricate mechanisms within the body with a bunch of tablets.

Only a transplanted kidney can give you close to normal body functioning. Things like Mineral and Bone Disorders (MBD) are very difficult to get a handle of. I have experienced this first hand. I am struggling with severe, debilitating bone pain from the past month or so, something which has been getting worse and we were not able to do anything to arrest it. Even seasoned nephrologists agree that MBD is something that they are just not on control of yet.

The trouble with me is my primary disease - Atypical Hemolytic Uremic Syndrome (aHUS). With this disease, the chances of recurrence after a kidney transplant are more than 90%! Which pretty much rules me out from getting one unless I get access to a drug that will prevent recurrence of the HUS.

There is a drug Eculizumab that is available in many countries that has been shown to prevent recurrence of HUS in transplanted kidneys. There is one more drug (Omeros 721) in clinical trials stage. Both these drugs are not available in India yet.

I just hope they become available before my MBD gets out of hand.

Friday, November 7, 2014

A duodenum biopsy



I have been having recurrent diarrhea for the past month or so. I am on my third antibiotic course. Everything seems to be ok for a few days and then it starts again. The day before yesterday, the gastroenterologist suggested that we do an endoscopy and a biopsy of the duodenum.

This sounded scary. Biopsy of the duodenum? Whatever did that entail?!

I have become an endoscopy veteran by now and have had more than I care to count. In fact, I stumbled upon this post where I actually compare how endoscopies have changed over the years! Just imagine! So, I wasn't in the least worried about the endoscopy. It was the other beast I was worried about. How can something called 'biopsy of the duodenum' be anything pleasant?!

Anyway, these days I have stopped thinking about all this, stopped applying my mind to my treatment and surrendered completely to the doctors. Its become a pointless exercise. So much of it is just trial and error!

So, I went ahead and got the endoscopy and the duodenum biopsy done. I was advised to do a heparin-free dialysis that night. A biopsy involved cutting off a tiny little piece of the tissue in the duodenum and examining it under the microscope. So, there was a small chance of bleeding. Heparin is the drug that is used for almost all dialysis patients to prevent the blood from clotting when it is outside the body getting purified in the artificial kidney. So, if you used heparin after a biopsy (and even a surgery), chances are that the site of injury will start bleeding.

It is normally fairly straightforward to do a heparin-free dialysis in-centre during the day. All that is needed is to flush the lines with saline every 30 minutes. At night, it can be quite a bother. Giving a saline flush every 30 minutes means someone needs to stay up the whole night. Guru, the tech who dialyzes me was, as usual, very co-operative. He stayed up the whole night and religiously flushed my bloodlines with saline every 30 minutes.

All in all, everything went off well. The biopsy report is expected in 4-5 days. Let us hope we get some clue on what the issue is.

Wednesday, November 5, 2014

India's patent laws - two sides of the debate



When I contacted Alexion Pharmaceuticals, the sole company in the world that manufactures Eculizumab, the only drug with which I can have a successful transplant, they said they had no plans to bring the drug to India. Their chief concern was India's weak IP protection laws.

In effect, they were worried that a local company could easily reverse engineer the drug and sell it at a fraction of the price. I was quite surprised that Indian laws would allow that. For a while, I assumed that they were referring to the illegal drug market where the drug would be copied in highly questionable conditions and sold illegally.

I was wrong. Indian patent laws allow reputed Indian manufacturers to reverse engineer drugs and sell them at a fraction of the price at which the original drug is sold by the company that actually invented the drug.

I read up a little on this recently. This issue was in the news after two significant rulings - on Novartis' Gleevec and Bayer's Nexavar, both cancer drugs. The rulings rejected the requests of these companies to prevent Indian companies from selling reverse engineered versions of the drugs at a fraction of the cost at which the originals were being sold.

There are a few things we must know. India used to provide only for process patents and not product patents. So, you could get a patent only for the way you produce a certain drug, not the drug itself. This changed in 2005, when due to India signing the WTO treaty required it to become TRIPS compliant which provided for product patents. However, some safeguards were provided which prevented MNCs from monopolising their products often to the detriment of the general public. It is often the interpretation of the safeguards that come up for litigation.

For example, there is a provision called Compulsory License where the country can allow a company to manufacture a generic version of a patented drug without the consent of the patent holder and sell it in the country by paying a certain royalty to the patent holder. Under what circumstances this can be done and what is the royalty that would be paid are all not specified clearly.

Look at all this from a big pharma company's point of view. They would believe that since they have the patent to the drug, no one must be allowed to sell it. In fact, the price at which Indian companies sell the drug is often a miniscule fraction of the manufacturer's price. Further, the cheaper version could also be exported to other countries and this could be disastrous for the patent holder! The pharma companies spend a lot of money on research and actually bringing the drug to the market. They believe that it is unfair to them to allow generic versions to be sold by someone else, at such low prices!

Fair point.

Now, look at this from a patient's point of view. There is a drug that is available in the market. The drug could save his life. But is priced so high that he cannot afford it. Or it is priced so high, his insurance / government will not pay for it. He would say this is completely unfair! He would argue that in the case of life saving drugs, commercial exploitation must not be allowed. When someone else is able to produce the drug and sell it much lower prices, this should definitely be allowed!

Again, fair point!

What is the way out?

Monday, November 3, 2014

A voice for Atypical HUS patients from India

My primary disease, Atypical Hemolytic Uremic Syndrome (aHUS) is classified as an ultra-rare disease. It affects about 1 or 2 in a million people. 

Look at this from a doctor's perspective. A regular nephrologist would hardly see a handful of cases in his or her entire career! What is point in spending time in learning about this disease when there would be such little impact? The chances of anything new being learned to be actually put into practice would be almost zero! Why, then, must he or she not spend time on something that yields more 'bang for the buck'?

What about the pharmaceutical companies? When the total target population is a few hundred across the world, what incentive would be there for them to spend huge sums of money on research for drugs that could treat this disease? Its not like all the other possible work is exhausted and this is the only disease left, right?!

Where does this leave the Atypical HUS patient?

With little information forthcoming from doctors, not much advancement from pharmaceutical companies, we are left languishing, struggling to get back to 'normal'.

The situation is much worse in countries like India. While patients in some countries have access to Eculizumab, the one drug that could change their lives, India is not even on the radar for Alexion Pharmaceuticals to launch this drug in.

Why can't the drug be brought to India by patients who need them? It costs about Rs. 3.5 crore for a year's treatment and it could potentially be needed life-long. If there was a God, I would say, he has a sick sense of humour.

In all this gloom, it is important to find support. To reach out to people who are going through this hell just like you. That is why I started the Atypical HUS India Foundation. We have a website, a Facebook group and a Twitter account as well.

Chances are that you have nothing to do with aHUS. Chances are that the only place you've heard about this dirty disease is from me. But I would be really happy if you would take a minute, visit the website, like the FB page and follow the Twitter account (you can disable notifications if you like). The number of posts will anyway be very few. What worries me is when someone new is diagnosed with the disease, they would not find all this and that would rob them of a chance to get some support in dealing with this.

I plan to slowly add a forum and a latest news section in the website. I want to let Atypical HUS patients in India and their families know: You are not alone!

Thanks!

Thursday, October 23, 2014

Worst bone pain ever

For the last few weeks, my bone pain has become really, really bad. A couple of days back, on my night off from dialysis, I woke up around 3:30 a.m. writhing in pain. I took a Dolo 650 mg and still couldn't go back to sleep. Currently, the pain is much worse than that during much of 2010.

As a senior nephrologist once commented, Mineral and Bone Disorders are the one thing in dialysis patients that doctors haven't really been able to get a firm grip over.

I have still not been able to arrive at the 'steady state' with respect to the balance between Calcium, Phosphorus, PTH and Vitamin D. We have played with the dose of Calcitriol, Cinacalcet, Phosphate solution addition to the dialysate and the dialysate Calcium level that would result in my levels being in the good range - and more importantly, staying there.

I haven't helped my cause by neglecting this in the current episode. I should have been much more proactive. I feel like an idiot now. Of what consequence is anything else in the world if I don't take care of my health?

I, the self-acclaimed 'savvy, proactive patient'!

I have reached a stage where I walk with a limp and almost every turn or twist of my body causes pain. Just what was I thinking?

Yesterday, finally, we have started Trial 1 - stopping of Calcitriol. I say Trial 1 because the frustrating part about this is that no one is really sure of anything. We will try this for a month and if it does not work begin Trial 2. And if that does not work either, begin Trial 3. Its so fucking ridiculous. In the meantime, if we do not get on the right track, continue to bloody suffer.

I'm sorry for the rant but it just feels so frustrating. Let's hope Trial 1 works.

Wednesday, October 8, 2014

Stopping the 'Brownian motion' in our minds



When I think about what I think, I find that whenever I am doing anything other than work, my mind wanders around like crazy. I am thinking about one thing after another all the time, continuously. For example, when I am swimming, I am thinking about a hundred other things, each for a few seconds. Instead of enjoying the swim, I am ruining it by not focussing on it. When I am driving as well, thoughts flood my mind; when I am drinking tea as well!

When I am feeling a little weak once in a way and am lying down, I reach out for my phone and check arbitrary things, things that are not at all important. I have noise in my brain all the time. Much like Brownian motion!

Many times, I feel I need to control my mind. I need to focus on what I am doing and live and relish every moment of it. I have heard that meditation helps to make the mind more peaceful, to enjoy the moment, so to speak. However, I find it very difficult to meditate even for a minute. The whole concept of sitting and doing nothing else and just emptying my mind and focussing on one thing like breathing for example, seems totally beyond me. I have tried many times.

So, when this article came up in my Pocket recommendations, I read it and found it to have some practical solutions to this problem. It talks about some easy ways to achieve the same results as meditation without the boredom associated with it. The results are similar to those achieved by meditation - at least the ones I am interested in - to reduce the noise in my brain.

I have started practising some of the techniques mentioned there and I think it might be working.

Friday, October 3, 2014

Making progress on different aspects of life

Krishna, a very dear friend once told me that he tries to make progress on different fronts of his life regularly. I found that idea to be a very good one. I have been trying to do this of late. I don't remember exactly the specific areas he had talked about but I guess for me the important areas would be - career, finances, spirituality, health and hobbies.


On the career front, things have been going pretty well. I got started on a very exciting new project for NephroPlus a few months back. This project could really change the way decisions regarding dialysis patients are made in the country. It will not only impact NephroPlus patients but also patients from all over the country whether they are dialysing at NephroPlus or not! Things have become fairly hectic over the past few months with multiple streams of work picking up momentum and a large number of centres being opened this year - we are 30 centre strong now! So, on the work front, things have been pretty good!

On the finances front, things are just about stable. I am able to take care of my dialysis expenses and able to save just enough to buy the latest devices Tim Cook and his team come out with from time to time! However, a few days back, my Bank Relationship Manager visited me. He brought along a colleague who advises on mutual funds and they advised me to invest regularly in some mutual funds. They said I should be investing in a mix of Mid-cap and Balanced funds and keep a small part of my earnings in Fixed Deposits (FD). I hate FDs because the interest rate is so pathetically low that the returns are practically nothing! I have taken their advice and have set up a small portion of my salary into some mutual funds. I guess the Apple Watch might have to wait for some time!

On spirituality, I have taken one big step. I now go every Sunday morning from 9:30 to 11:30 to teach kids about the basic concepts of Jain Dharm. I believe unflinchingly in the basic concepts of Jain Dharm (not the various add-ons that have been introduced over the past many decades!) and I really enjoy teaching these concepts to the young, inquisitive minds (12 years and over), mostly in English. This needs me to read up on the stuff as well, something I have been meaning to do from a long time but haven't!

On the health front, there is one nagging issue - the bone pain in my right upper thigh and the neuropathy/bone pain in my feet. The left foot especially has been bothering me. There is a sharp pain in the upper, middle part and the numbness is crazy. I have no clue what this is and what the heck we can do to fix it! And then of course, there's the dialysis bit which I can't really do too much about. But things are stable here. Swimming is on as well.

I have taken on a new hobby these days. Reading! I am currently reading three books simultaneously! Two of them have been gifted by a dear friend from Bengaluru. The three books are of three disparate genres. One is an English translation of 'Parva' by Bhyrappa which is a de-mythified version of the Mahabharata. It presents the Mahabharata in a completely historical manner where there's no supernatural stuff happening. Very interesting take on the Mahabharata. It gives me a lot of clues into the truth behind the supernatural stuff that has been introduced into my religion as well. I also took to playing the keyboard (musical) after many, many years!

So that's an update on the major fronts in my life!

I really believe that it is very important for each of us to make small advances in each sphere that is important to us. Often, we get so engrossed in our day-to day lives that we ignore everything else. Again, these aspects could be different for every one of us. But it is essential to make a conscious choice of what's important and what is not and then work on each of these. They could change as well from time to time. We must make sure that it is happening consciously and not merely by default.

Wednesday, October 1, 2014

Baa retire thaay chhe...

My mother retired yesterday after a 37 year long stint at Andhra Bank. Along with my family, I went for the retirement function. It was really great to hear all the senior management of the bank pay glowing tributes to my mother's commitment, sincerity and capability.

She, by no means, plans to take it easy. She is now looking for opportunities and, if I know her well enough, will not be a stay-at-home person even after retirement. She had me prepare her resume a few weeks back. I have been pushing her to do something less exacting. I would not want her to do nothing for sure but I do not want her to take up a regular job!

Here are some pics from her retirement event at the bank:







Birthday 2014

Just had a fantastic birthday. The celebrations started from the 27th night itself with a party with my HPS friends (school friends). It was midnight by the time I reached home and found the NephroPlus gang waiting there with cakes! 28th evening I had my team-mates from NephroPlus Hyderabad and close by places come home for a big party. This was great fun as well!

Here are some pictures:














Wednesday, September 24, 2014

Callousness towards the cold chain



I was considering a product for use recently. This was not the traditional Erythropoietin injection for which generally the cold chain is recommended. Cold chain means maintaining the product at a temperature of between 2 to 8 degrees centigrade to ensure that it remains effective when it is used. This is because the product contains certain ingredients that are effective only if maintained at that temperature. The moment you keep them outside the required temperature, the product loses its effectiveness and even after that period, if you bring it back to the temperature, it is no longer effective.

On the product I was reviewing, it was clearly written that it must be maintained between 2 to 8 degrees centigrade. The samples that I had got did not come with an ice pack (which is the most common way to maintain the product at the desired temperature for short periods when they are delivered to the end user). I was surprised. I thought that the person who delivered the product might have messed up.

I irately called up the vendor and told him that the product was delivered to me without an ice pack. I was shocked by his response. He said this product did not require to be maintained at cold temperatures! I told him it clearly stated on the pack. He said that they write that but it really does not require the cold chain.

I gave up.

The horrifying thing about this is that this product is in use at many hospitals from ages. I can almost guarantee that many people are using this without realising that the product is not effective. Many patients have been put at untold danger by using this product. When the vendor himself is so callous about such an important aspect, where does that leave the poor patients?

I remember reading some peer reviewed papers in medical journals that tested this product and found it to be as effective as another product that did not need a cold chain but had certain other disadvantages. Somehow Indian doctors were a little apprehensive about the results. I now know why!

I sometimes feel very helpless. Before any product reaches me, the end user, a patient, how many people does it go through? Even if we assume that the manufacturer did a good job (it is in his interest that the proper conditions are maintained because the effectiveness of his product is extremely important for him), what about the numerous other people who would not be as careful? Even if one person is not careful enough, the product could be rendered ineffective!

With so many challenges faced by us patients, here is yet another.

Saturday, September 20, 2014

What is wrong with medical journalism in India?



This morning, in my inbox, I saw an article from the Hindustan Times about a PD solution infecting a set of patients. Investigations revealed that a particular batch of fluid from an unspecified manufacturer contained 'extraneous matter'. The company is supposed to have called the patients who had been delivered the batch and asked them not to use that fluid and said it would be replaced.

No mention of the brand, no mention of the batch numbers, no mention of what the 'extraneous matter' was.

A few months back, in the US, there was a huge hue and cry over Fresenius' dialysis solution and it was all over the press. This is how it should be! Patients need to be told about which company manufactured the fluid. The manufacturer should issue a proper advisory to all its patients with the correct batch and ask them not to use it. What if the patients affected have not received a call? Is someone senior enough doing the calls to make sure no one is left out?

One of the patients affected had to undergo removal of his PD catheter. This, by no means, is a small thing.

Another major error I found in the article is this:

"...needs to undergo three sessions of dialysis a day, owing to her advanced kidney disease."

This line gives the impression that the patient referred to was in a very advanced stage of kidney disease! Anyone undergoing PD would need to undergo three 'exchanges' per day (and not three sessions of dialysis!). There is no connection between the stage of kidney disease and the number of exchanges. Anyone who is put on dialysis has crossed Stage 5 of kidney disease.

Newspaper journalists need to research their articles more carefully. Such statements can create a lot of misinformation among the general public. Without understanding the basics, journalists must not be allowed to cover such topics.

Medical journalists in India must take a leaf out of the newspapers of their counterparts elsewhere!

Thursday, September 11, 2014

Advised a major surgery

Yesterday I had written about the diagnosis for my bone pain in the hip area. I went to the orthopaedic doctor and he has given me three options:
  • Grin and bear the pain until I can
  • Undergo a major surgery involving four days of hospitalisation, four weeks of rest and six months for complete recovery
  • 'Try' an injection that may or may not work, has to be injected in the Operation Theatre, and if it works, can give me relief for a couple of years
Nice!

Mysteriously, the pain has reduced almost instantaneously! :-)

On a serious note, I am planning to see my nephrologist this evening to get his thoughts on this. I really don't want to go through a major surgery at this point. For dialysis during the four days of vacation in the hospital, I would need to be taken on a stretcher in an ambulance to a dialysis centre!

My initial thoughts: bear the pain until I have absolutely no other option. Then go for the big surgery so that it is a 100% solution.

I might change my mind of course. After all, I am about as indecisive a Libran as you will ever find.

Wednesday, September 10, 2014

Bilateral Cam Impingement

My nephrologist asked me to consult an orthopaedic doctor for the bone pain I've been having in my hip area. So, I went to one and he examined me and got an X-Ray done. After seeing that X ray, he asked me to get another X-Ray in a particular angle. This one was tough. The tech there made me lie in a very weird position! He tried thrice but could not get the desired results!

The orthopaedic doctor then said that there was some extra bone growth in my hip joint, something called a Cam impingement and this was causing the pain. He said we would need an MRI and referred me to a diagnostic centre where they did a good job with this particular type of MRI. He also showed my X-Ray to a colleague as if it was something very fascinating!

So, off I went to this diagnostic centre and got my MRI done. When I met the radiologist (who is one of the few in the city who do this type of MRIs well), he asked me to return in a couple of days and to bring any past X-Rays I might have. He then saw the X-Rays and stared at them, like forever! He kept rummaging through the different X-Ray scans I brought and stared at them with a deadpan look on his face. I was getting worried. What the hell was happening???

He then said he would like to do another MRI. I said ok and another MRI was done. He then said the second MRI did not give any additional information - apparently he was looking for something and he did not find it. He then repeated the staring endlessly at the X-Rays. I asked him if there was anything to worry? He said that there wasn't anything to worry but it was just interesting. He asked if he could keep one of the X-Rays! I said ok. He said the orthopaedic doctor would tell me what needed to be done.

Apparently, a similar X-Ray was done in 2009 and the changes were apparent even in that X-Ray. When I looked back in my prescriptions file (I file every prescription in a file), I did find a prescription from another orthopaedic doctor with notes of a similar pain at that time! The only thing prescribed was Dolo 650 mg (paracetamol).

I am going back to the orthopaedic doctor today. I wonder what's in store for me. I don't mind another few Dolos! I just hope it is nothing more than that.


'A' is a normal joint. 'B' is a Cam impingement

Wednesday, September 3, 2014

And now, an infiltration

I use the buttonhole method to do my own cannulation every night to begin dialysis. I use a pair of sites and alternate them each night. From the last few times, the venous site has been paining while inserting the needle and for a while after. However, a couple of nights back, the pain did not subside but continued and I had a restless night due to that. I decided to change the site.

So, last night, I took a sharp needle and chose a different site, trying to avoid the huge aneurysm in my left upper arm. Many doctors have been quite alarmed on seeing that aneurysm and have advised me to get it checked immediately. I have been seeing Dr. P. C. Gupta, a very famous vascular surgeon regularly having it checked and getting his assurance that there was no chance that it would rupture.

So, I chose a site just a little away from the aneurysm and carefully cannulated with a sharp needle. The needle went in fairly well. Once Guru, the dialysis nurse who comes to help with my dialysis, connected the lines however and switched on the pump, I could feel a vigorous throbbing at the end of the needle. The machine also alarmed almost immediately. I told Guru that something was wrong with that site. He said that the needle was probably touching the lower wall of the vessel inside. He immediately stopped the pump and removed the tapes of the needle and withdrew it partially. While withdrawing, he felt a sensation that told him that the needle was coming out from the lower wall of the vessel. This meant that the needle had gone through the lower wall as well!

Guru changed the angle and made sure that the flow was unobstructed and we then began dialysis.

A small swelling had also formed near the area. Guru took some ice and massaged the area for a long time until the swelling subsided.

We both felt I was lucky that we detected this immediately and could take action. Sometimes infiltrations can be quite bad.

It is incidents like these that make me frustrated. Seventeen years on dialysis can take its toll. These days, again, I am tempted to go for a transplant. The hassles of dialysis are really getting to me. The two needles every day, such incidents once in a way, and more than anything else, the side effects of long term kidney disease - neuropathy, bone disorders and whatever else are all becoming too much to take.

Unfortunately for me, a transplant is not that straightforward. The chances of recurrence are high. If it does not work, it would be back to square one and a lot of money and effort down the drain.

However, let me at least write to Dr. Tim Goodship of Newcastle and see what he says about the whole idea. He was the person who discovered the genetic mutation that I have (CFH/CFHR1 Hybrid gene) that is believed to be the cause of my Atypical Hemolytic Uremic Syndrome.

In the meantime, only a breathtaking new device from Apple or another Cruise can cheer me up!




Sunday, August 31, 2014

Bad Bone Pain - unable to get a handle

I am suffering with really bad bone pain. It is mainly in the feet and the back side of the leg just below where the leg joins the hip. Any kind of movement that strains these two area results in pain. When I walk, when I climb up or down stairs etc.

I went to my nephrologist, he looked at the blood tests - Calcium, Phosphorus, PTH, Vitamin D - all seemed within range for dialysis patients. He then thought it could be related to micro-circulation issues to the lower limbs and put me on some medication for improving this. I somehow doubt if it is this. Its also been more than a month that I have been taking this medication with no relief;the pain has only worsened.

To make things worse, I thought somehow that the pain in my feet as related tot he nerves and went to a neurologist who, after some tests which showed the nerves were in really bad shape, put me on something for the nerves.

So, while 8 tablets have been added to my pill box per day, I am most sure any of the additions are doing any good.

I am really worried about this pain as we are not even on the right track!

A learned nephrologist at a recent meeting had said that in dialysis patients they are generally able to control everything but mineral and bone disorders are something they just don't seem to be able to get a handle on. Very ominous!

I am planning to go back to my nephrologist this week to discuss this. I am really hoping he has some good ideas!

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?

Wednesday, July 2, 2014

In the news: Corruption in Indian Medicine

The British Medical Journal recently published an article, “Corruption ruins the doctor-patient relationship in India” by David Berger, a district medical officer in Australia who spent some time volunteering in a small charitable hospital in the Himalayas. Dr. Samiran Nundy, renowned gastroenterologist wrote a very good article for the Indian Express referring to this article.

The Times of India had a very good piece referring to both these articles here.

Incidentally, I had also talked about this in my post a few days back.

Wednesday, June 25, 2014

Welcome Vivia - a new Home HD machine from Baxter

Baxter recently announced a new Home Hemodialysis machine called Vivia. The machine is primarily intended for use at the patient's home for more frequent, longer duration dialysis. Unfortunately, as always, the machine is not going to be available in India until much later, if at all. The machine is currently available only in Europe.



The machine has been designed keeping the patient in mind, the website says. It has an easy touch-screen based interface with animated videos to assist with operation. One significant point I noticed was that the dialyzer and blood lines are termed as 'extended use' which means they would be reused. We, in India are used to reuse but many in Europe might frown.

The scenario for Home HD is changing rapidly. More and more machines are being announced. Fresenius has a machine for Home HD that was announced recently. Then there is this from Baxter. The NxStage System One is being improved continuously. There is Victor Gura's WAK. There's also Medtronics that is developing a portable dialysis machine which can be used at home. There could be many more devices that are being developed but not yet announced.

All this is great news for us dialysis patients. It is now an indisputable fact that dialysing more frequently and for longer durations is beneficial to the body. It is not only associated with a better quality of life but also with a longer life. Many like me have experienced this benefit first hand and do not need any randomised controlled trials to tell us about these benefits!

More frequent, longer duration dialysis is practical only at home. Who wants to go and sit in a dialysis centre or a hospital every day for long hours? At home, the convenience is unmatched. You can dialyse at your convenience. That is why, it is important for such innovation to happen. It is important for more such devices to come out into the market. It is important for us patients to have the choice. Let the best machine win!

Tuesday, June 10, 2014

A possible prescription for a better healthcare system



As the new government settles down, it is busy outlining the priority areas and has made some initial announcements on what it is planning to do. India's healthcare system needs an urgent overhaul. While most people do not have access to even basic healthcare, there are many things that ail the system even otherwise.

For starters, my biggest frustration with Indian healthcare is that many people cannot get treated because they cannot afford it. Imagine the frustration of someone suffering from something life-threatening and knowing that there is a way his life can be saved but not being able to access that treatment just because he does not have the means to do that! That is possibly the worst punishment of not being wealthy that anyone can ever get.

We have to go in for a healthcare system where any treatment that is available in the country is not denied due to the lack of the individual's capacity to pay for it. Healthcare is as basic as food and water. Nobody should die because of the lack of money to pay for this.

This can be done even in India and its huge population. States like Andhra Pradesh have shown the way. The Aarogyasri scheme for all its deficiencies has saved thousands of lives. This scheme can be replicated for the entire country in a phased manner. It would be one of the most ambitious project taken up by the government ever but the benefits will be immense.

Another major initiative that needs to be taken up is the way doctors are compensated. We need to move to a system where doctors get fixed salaries based on their experience and capability. We need to figure out a way by which the only yardstick used to evaluate their performance should be the outcomes of the patients they treat. Hospitals need to move away from a per-service or per-referral fee to a compensation structure which purely depends on how the patient has done. The compensation should be high enough for doctors to stop worrying about their income and focus on improving the quality of life for their patients.

Let us face it. The reality today is that doctors spend a lot of time and money to become doctors. It is natural that they would look at recovering the money spent and make the time spent on this worthwhile. The system needs to change so that the incentives of the doctors and their patients is aligned. This would need a huge change in the way corporate hospitals function and this is going to be the biggest roadblock in implementing this change.

The government has to step in and figure out ways in which this can be done. A major boost to achieving the second objective outlined above would be obtained by implementing the first initiative outlined above. If the government has control over payments, it can dictate how much is paid to whom.

I obviously have no readymade solutions. Neither do such solutions exist. It is up to the government, its advisors and the bureaucrats to make any change happen. Rome wasn't built in a day. Such a cleanup would be take even greater effort. More than the effort, however, is something far more important - the intent. Does the new government have such an intent is the million rupee question.

Thursday, June 5, 2014

Nainital Diary

It had been long since my parents and I had gone to a hill station together. The trouble with hill stations is that there are usually no dialysis units. Since the local population is very less and most people are tourists who visit only during the summer, potential dialysis units would not be utilised enough. So, most popular hill stations do not have dialysis units. My parents had been pushing me from a long time to accompany them to a hill station but I avoided it because of the sheer time and effort it would take to get my dialysis sessions.

However, this time, I gave in and thought let me do it once and see how it turns out. So, before I knew it, I was with my parents in a cab from Delhi to Nainital. We had just had a sumptuous South Indian thali at the Saravana Bhavan at Connaught Place and made our way through the dusty roads of Delhi and then part of Noida and were speeding away towards Nainital eagerly awaiting the cool climes of the popular Uttaranchal hill station.

Tolls, tolls and more tolls

It took us a good seven and half hours to reach Nainital. On the way, we stopped at like a zillion toll plazas for toll payments. Some were rather shady. The cab driver would stop at the road side and then walk towards a dilapidated building and emerge after about 10-15 minutes and flash a receipt and ask us to pay the amount indicated. How would someone who was driving himself, I wondered aloud, even know that these tolls were to be paid? The huge structures right in the middle of the road through which your car absolutely needed to pass if it had to cross were all right. But these?

Morning tea by the lake

I think the best part of our trip was the time we spent early in the morning sipping tea (Darjeeling black for me, green for my mom and masala for my dad) in the balcony of our hotel room that had a great view of the lake with the Kumaon hills as the backdrop. The weather was just awesome. A slight chill, the breeze blowing gently making the leaves of the gigantic trees in front of us shiver gently and no noise absolutely was an experience we will cherish for a long time to come.

The mist on Naini Lake
Sight seeing

My take on hill station sight seeing is - you've seen one, you've seen them all! A sunrise point, a sunset point, a lover's point, this view and that hill. I have always believed that rather than aiming to see every single place that is listed on the guides, go to one or two unique places and then enjoy your time by doing simple things like a walk by the lake or just sitting and taking in the beauty. Never pack too much into such trips.



We spent about half a day visiting the other lakes in the nearby hills. Another half day was spent taking the cable car (rope way) to the top of a hill from the where you are supposed to be able to see something called "Snow Point". The snow, I guess is visible only in the winter! It was fun, nevertheless.


The cable car and the view from within


Dialysis at Haldwani

I got two sessions at the Central Hospital, Haldwani. It took me about an hour and a half to get there. The hospital was very well done. Looked like it was recently built. The dialysis unit has about 10 machines. It was well staffed. The weighing machine however was not working very well. I was actually asked to put my weight to the right and move my right foot to the front otherwise it showed about 10 kgs less! Barring that the experience was very pleasant.



Punjabi by nature

That was how the food was - mainly Punjabi. We tried quite a few places and found ourselves liking Giannis and Chandni Chowk the most. The first time we went to Giannis, my parents ordered two thalis for themselves. The waiter helpfully offered that one would be enough between both of them! Rare to see such ethics in a world that has been so hopelessly corrupted by money. I tried the Makki ki roti and the sarson ka saag which was really very well done.

Chandni Chowk at Nainital

My pick however was Chandni Chowk after the famous Delhi area. This place serves some very tasty  chat apart from the usual Punjabi fare. The highlight of this place however is the jalebi and the Masala Milk they serve in earthen ware glasses (khullars). This place also has some really cool life-sized dolls that actually move and look like they're making the food!

The Khullar Milk being made



The life sized dolls making the food!


Will do, won't do again?

All in all, I really had a great time. Though the total trip was six days, two full days were spent travelling. Almost three-quarters of two other days, at least for me were gone for dialysis. I got about two and half days all told apart from the blissful mornings. I am not sure if I would do such a trip again. I am not sure if I won't either! More than half the time spent is 'unproductive' if you can call it that! However, the mornings really made up for everything. The four mornings spent there sipping tea by the lake enjoying the weather really was what I will not forget for a long, long time.

Just before heading back, with my parents