Hello, I'm Kamal from Hyderabad, India. I have been on dialysis for the last 13 years, six of them on PD, the rest on hemo. I have been on daily nocturnal home hemodialysis for the last four and half years. I can do pretty much everything myself. I love to travel and do short weekend trips or longer trips to places which have dialysis centers. Goa in India is a personal favorite. It is a great holiday destination and has two very good dialysis centers.
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.
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.
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!
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 Doiis 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!
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.
I have always wondered about how Jain cosmology was so wrong. Everything else I have read in the Jain scriptures seemed to be in consonance with science. Why then was there so much difference between Jain cosmology and what modern science says about the universe?
I have been searching for explanations for this difference. I never found any. Then yesterday, I suddenly found this article by Amit Jain titled "A Reevaluation Of Space And Time Descriptions In Jain Annals". This article offers a series of very rational hypotheses on the Jina's teachings on cosmology and how these could correlate to what modern science says.
The trouble is in the misinterpretation of the Jina's teachings. Over-enthusiastic sadhus down the ages have corrupted these teachings and many other teachings of the Jinas so much that the current form of the religion is very, very different from what the Jinas preached.
Coming back to the article, the author provides a good summary in the following lines:
This paper is an attempt to introspect the annals and introduce an alternate model that is based on the Sutras of Jina, and is also in sync with modern science and its findings. This model tends to convey that the current interpretation of Jain Sutras on cosmology is wrong on below points:
- This paper tends to conclude that
When you think about it, this makes a lot of sense. For those who are well-versed with the Jain version of the universe and the scientific version, these hypotheses make a lot of sense. Of course, none of this can be proved. Who can prove such things though? But this did put my mind at ease.
- Jambudvipa is actually this entire multiverse of which our planet earth is a part off.
- There may exist two suns and moons, but the second set is not in our part of the universe.
- Mt Meru is the central axis of cosmos on which our multi-verse revolves around and thus is not on planet earth.
- This universe is revolving in nature that leads to self-repeating epochs.
Going back to this city is always enjoyable with all these memories!
We partnered with the renowned Dr. Umesh Khanna (well-known for his landmark paper "The Economics of Dialysis in India" among several other accomplishments - but I have always associated him with this paper only!) to run his massive dialysis centre at the Lancelot Compound in Borivali West.
I had a great interaction with all the guests (patients, for those uninitiated in NephroPlus jargon!) there. They all seemed genuinely happy. Dialysis, in some ways, can be a humbling normaliser. Whether your nett worth is a crore or a thousand, you use the same needles, the same machine and the same technique to get your body cleansed.
Annual Patient Picnic of the Mumbai Kidney Foundation
The next day was Sunday and the Annual Patient Picnic of the Mumbai Kidney Foundation (MKF). This was truly an amazing event. It was held at Borivali National Park. Dr. Umesh Khanna (who founded MKF) along with his wife, Dr. Molina Khanna, who happens to be a gastroenterologist were exemplary hosts, literally running from here to there to ensure that every patient and family member had a great time. Handling the mammoth crowd of more than 300 people was quite a task.
This reminded me of NephroPlus' very own Aashayein event. Patients need such outings and events to meet fellow-patients and have a day of complete fun!
Attitude of the patients
One thing I noticed was that most patients in Mumbai - and I met and saw quite a few during this trip - were generally happy despite the burden of a chronic disease. Few complained. They were all having a gala time. One patient sang the whole 'Ek Chatur Naar' song from the film Padosan while the others egged him on. It was a truly pleasurable sight!
The other patients also were very strong-willed and cheerful. They looked determined not to let the disease get the better of them.
I asked one of our techs at NephroPlus, Mumbai where we got great Vada Pav, the snack, Mumbai is world-famous for and he took my colleagues and me to a 'bandi' called Mangesh Vada Pav. The crowd there was insane. People were literally falling over one another to get their hands on a Vada Pav. I have no idea how the guys there managed the stall. It required some deft pushing and pulling by the tech and my other colleagues to get our hands on some Vada Pavs. They were really awesome!
My cousin, Deep
I got to know of Deep from another uncle of mine who stays in the US. I had no clue that my own cousin was on dialysis. Deep has a condition called Neurogenic Bladder which causes the kidneys to get damaged and lose function. He has been on dialysis for a couple of years now. He is only 23. I can completely relate to Deep because I was also diagnosed at 21. When I came back from Mumbai, I got Deep back with me and both of us spent some quality time together. Here are some pics from Deep's visit to Hyderabad.