Wednesday, May 25, 2016

Ganga behti ho kyun?

I've been haunted by this song by Bhupen Hazarika recently. Addressed to the River Ganga, it moans the general decline of human values and the suffering of humanity, questioning the river on why she does not do anything about it?

Here is a YouTube video of the song:

Here are the awesome lyrics of the song (taken from Hindi Tracks) by Pandit Narendra Sharma:

बिस्तिर्नो पारोरे, अशंख्य जोनोरे  
हाहाकार खुनिऊ निशोब्दे निरोबे 
बुढ़ा लुइत तुमि, बुढ़ा लुइत बुआ कियो ?

विस्तार है आपार, प्रजा दोनों पार
करे हाहाकार निःशब्द सदा 
ओ गंगा तुम, गंगा बहती हो क्यूँ ?

नैतिकता नष्ट हुई, मानवता भ्रष्ट हुई
निर्लज्ज भाव से बहती हो क्यूँ ?
इतिहास की पुकार, करे हुंकार
ओ गंगा की धार, निर्बल जन को
सबल-संग्रामी, समग्रोगामी
बनाती नहीं हो क्यूँ ?

विस्तार है अपार, प्रजा दोनों पार
करे हाहाकार निःशब्द सदा 
ओ गंगा तुम, गंगा बहती हो क्यूँ ? 

अनपढ़ जन, अक्षरहिन
अनगीन जन, खाद्यविहीन
नेत्रविहीन दिक्षमौन हो क्यूँ ? 

इतिहास की पुकार, करे हुंकार
ओ गंगा की धार, निर्बल जन को
सबल-संग्रामी, समग्रोगामी
बनाती नहीं हो क्यूँ ?

विस्तार है अपार, प्रजा दोनों पार
करे हाहाकार निःशब्द सदा 
ओ गंगा तुम, गंगा बहती हो क्यूँ ?

व्यक्ति रहे व्यक्ति केंद्रित
सकल समाज व्यक्तित्व रहित
निष्प्राण समाज को छोड़ती न क्यूँ ? 

इतिहास की पुकार, करे हुंकार
ओ गंगा की धार, निर्बल जन को
सबल-संग्रामी, समग्रोगामी
बनाती नहीं हो क्यूँ ?

विस्तार है अपार, प्रजा दोनों पार
करे हाहाकार निःशब्द सदा 
ओ गंगा तुम, गंगा बहती हो क्यूँ ?

रुदस्विनी क्यूँ न रहीं ?
तुम निश्चय चितन नहीं
प्राणों में प्रेरणा देती न क्यूँ ? 
उनमद अवमी कुरुक्षेत्रग्रमी
गंगे जननी, नव भारत में
भीष्मरूपी सुतसमरजयी जनती नहीं हो क्यूँ ? 

विस्तार है अपार, प्रजा दोनों पार
करे हाहाकार, निःशब्द सदा 
ओ गंगा तुम, गंगा बहती हो क्यूँ ?
ओ गंगा तुम, ओ गंगा तुम 
गंगा तुम, ओ गंगा तुम 
गंगा... बहती हो क्यूँ ? 

Wednesday, May 18, 2016

Completed ten years of home hemodialysis!

A few days back, I completed ten years of home hemodialysis. When I look back at that time, I think I was quite brave to take this modality up. There were barely a handful of people in India doing home hemo and no one that I had come across was doing daily nocturnal home hemo - the modality I was planning to adopt. If the circumstances of that time faced me today, I doubt if I would ever take that up.

Today, after ten years of taking the plunge, I can safely say that I am alive today only because of this modality. Yes, there are many on regular, thrice a week hospital-based dialysis who have been on dialysis for longer than I have been. However, one major difference between them and me is the level of 'compliance'. Now, that's not my favourite word in the dictionary but it is true - I am an extremely non-compliant patient when it comes to diet and fluid.

My weight gain between sessions (with daily dialysis) is at the very least 2.5 litres and at times goes to 4 litres. Even with daily dialysis, I have developed heart issues. I am pretty certain my heart would not have tolerated those large weight gains on regular thrice-weekly dialysis. Or I would have had to restrict myself so much that I would not have found life worth living any more.

I absolutely need to thank some people for enabling me to opt for this modality.

First and foremost, my nephrologist at the time, Dr. Girish Narayen. He was the one who told me about this modality. Only after he mentioned this, did I get onto the internet looking for more information and start the whole process. If he would not have told me about it and sowed the seed, I would never have even begun.

What can I say about Jayaram Reddy? I knew Jayaram from KIMS Hospital where I was undergoing hemodialysis at that time. Jayaram, to me was nothing short of superman! He was an expert cannulator. He could handle emergencies that happened in the dialysis centre expertly. He also was tremendously confident in his own abilities. I remember asking him if he would come home and do my dialysis. He readily agreed. Again, if it wasn't for Jayaram, I would never have dared to actually get started.

My parents played a huge role in supporting me. Without their encouragement and continuous help, this would not have happened. Right from coming with me to Mumbai and visiting people who were doing hemodialysis at home to arranging the funds to buy the machine and RO plant at home to actually supervising the entire setup, they have been there at every stage of this decade.

A lot of what I have done in my life today is thanks to daily nocturnal home hemodialysis. And I intend to go on for much longer!

Wednesday, May 11, 2016

Spare a thought, shed a tear

In health care, seeing misery, suffering and even death becomes quite commonplace. Doctors, nurses, and dialysis technicians especially see this on a daily basis. People coming in breathless into the dialysis centre, people getting cramps during dialysis, going into hypotension, the needles paining endlessly are all things seen quite commonly in a dialysis centre.

In the beginning, staff working in a dialysis centre and nephrologists probably gets quite upset and tries to do a lot to bring some relief. The first death nearly always shakes them up. Over time however, they would see so much of it that they would become immune to these sights.

Obviously I don't blame them. I myself have become sort of stone-hearted over the years. I remember myself going into a room and crying bitterly when I got to know of a fellow-patient's death. These days, I react much less emotionally.

For the patient and the family, however, the suffering is intense. It can bring about a deluge of emotions apart from the obvious physical stress. They don't see it from a distance. They experience it first hand and there is no such thing as 'getting used to suffering'.

Health care, however mired it may get in spreadsheets, is basically a noble profession. It is therefore important for people in this sector to continue to have an element of compassion in their work. Without this, it all counts for naught. However successful you might be as a doctor, however well you may have done as a nurse, without compassion, you have failed in your basic duty - of caring for another human being.

There are always two ways of looking at something. When you picture yourself in the patient's shoes, compassion will come naturally. Remember, you are not isolated from disease. Just because you are in health care does not mean you won't fall sick. A hospital owner may be diagnosed with a chronic illness. A technician may himself one day need dialysis. So, be kind to the suffering patient. Think of his problems. Realise what she is going through. Don't belittle it. Every individual has a different ability to bear pain and discomfort.

"Therefore, send not to know. 
For whom the bell tolls, It tolls for thee."

Friday, May 6, 2016

Dialysis Patients: Complete a short survey and you could win Amazon Gift Vouchers!

A friend is doing some market research on Indian dialysis patients. He would like you to take a short, completely anonymous survey and two lucky winners would be given Amazon Gift Vouchers.

Please click here to take the survey!

Sunday, May 1, 2016

Living a life more 'aware'

I was reading an article (I forget which one unfortunately though) recently on good habits and the author had suggested meditation every morning. He recommended an app called Headspace that helped you get started on meditation. He said it really helped him.

I'd heard a lot about meditation and its benefits. I had even tried it a few times but found it incredibly boring and difficult to do. To me it was only about focussing on the breath for long periods of time and I just couldn't do it.

I decided to give Headspace a try though. The trial was free! So I got the app and started doing it after my morning Darjeeling tea ritual.

The good thing is you can do it for ten minutes only. You don't have to sit on the floor or pose like the guy in the picture above. You can sit comfortably in a chair. There is a guy who guides you through the routine. It has different things to do and it is not only about focussing on the breath so it is not boring. It worked for me like a charm!

To summarize the routine, meditation according to Headspace is about being 'aware'. My mind is like a monkey. It keeps jumping from one thing to another. When I'm swimming, I'm thinking about work. When I'm having breakfast, I'm thinking about lunch. When I'm in a meeting, I want to finish it quickly because I want to get to something else. I'm never living in the current moment. My mind is always wandering to the next thing. My mind is always wandering to something else.

Meditation teaches you to live in the present moment. To experience every single moment completely. There is one small exercise that Andy (the guy who hosts the app) asked to do - simply be aware of when you are sitting down or standing up and count the number of times I did that. You might wonder what that means! A simple thing like sitting or standing happens without us realising or consciously doing that. Andy said if you can count five times in the day you did that, it was great. I could count only two times!

I have started focussing on swimming while swimming for a start. That's when the exercise is fresh in my mind. I experience the water more fully. I look at the water when I am underwater. I see the small waves, the ripples and enjoy the beauty of it all. Even when I am having my tea I focus on the taste more completely.

I have completed the 'Foundation Pack' - thirty days of ten minutes each and I really look forward to the exercises each morning these days. After the foundation pack, you can pick things specific to your needs.

Hopefully, I will learn to live a life more aware, live in each moment completely. I am sure life will be more enriching and fulfilling this way.

You should try it too!

Saturday, April 30, 2016

Eculizumab makes a guest appearance in India!

Recently, doctors at Medanta Hospital, Gurgaon, including Medical Advisor to The Atypical HUS India Foundation, Dr. Sidharth Sethi were faced with a 12 year old boy that had the classic signs of Atypical HUS - hemolytic anemia, thrombocytopenia and uremia. Other conditions were ruled out and aggressive Plasmapheresis initiated. The boy stabilised and was discharged. A complement factor assay was normal.

The boy fortunately was an American citizen. Eculizumab was procured from Alexion Germany with co-ordination by the American Embassy. The cost of the drug was presumably covered by the boy's insurance company in the US. A complete genetic analysis was done in France which also did not identify any known genes implicated in aHUS. Subsequently, Eculizumab was withdrawn and the boy continues to do well. The entire sequence of events was recently published in the Indian Journal of Nephrology and an initial version can be found here.

 The article states some important things:
  • "... the high cost of the drug and the uncertainties surrounding the natural history of aHUS in patients for whom eculizumab prevented the progression to end‑stage renal disease, raise the question of whether life‑long treatment is warranted for all patients with aHUS. Given that the natural history of aHUS differs depending on the underlying genetic abnormalities, treatments could be tailored on the basis of an individual’s complement genetics. Life-long treatment may be appropriate in patients with aHUS who have mutations associated with poor outcomes (e.g. CFH or C3/CFB gain‑of‑function mutations). We also carefully planned to stop eculizumab in our patient, since he had no major genetic mutations, with a normal complement panel."
  • "The nonavailability of the drug in India raises ethical concerns. HUS being a common cause of acute kidney injury in children in India should get timely and appropriate management with lifesaving eculizumab or PEs. To improve the availability of the drug in Indian market, and subsequently decrease the cost of drug, collaboration among medical experts and health authorities must occur in order to implement a feasible plan of action."

Sunday, April 17, 2016

National Dialysis Program: There is a tide in the affairs of men...

Dr. Vivek Jha, one of India's most respected nephrologist has written a blog in BMJ that talks about the newly announced National Dialysis Program. He makes some very important points:

  • "A countrywide programme to identify and treat earlier stages of kidney disease so that advanced disease can be prevented must be developed"
  • "A well designed national service should be a hybrid programme, with a pragmatic mix of HD and PD"
  • "Parallel support should be provided for transplant surgery and post-transplant immunosuppression."
  • "The ideal payment model should be based on a combination of process and outcome measures."
Some states in India already provide free dialysis to patients who are below the poverty line. However, these program lack a process by which quality can be measured and good quality rewarded. This gives no incentive for the dialysis service providers to give good quality which obviously, comes with a cost. Many providers skimp on basic things and this results in very poor outcomes with patients surviving for abysmally short period of time on dialysis.

If outcomes are measured, the mortality and morbidity of patients on dialysis utilising such schemes would reveal some shocking details. This is why it is very important to get this new program right. The Government must involve people like Dr. Jha and others to ensure that they get this right the first time. If the broad contours of the program are designed badly, it would be very difficult to course-correct later.

India is at a very important juncture when it comes to healthcare policy. There is a unique opportunity that may not present again. If the Government handles this well, we could have a scheme that could genuinely help the vast ESRD population. If the opportunity is squandered, we will have only ourselves to blame.

"There is a tide in the affairs of men, 
Which taken at the flood, leads on to fortune. 
Omitted, all the voyage of their life is bound in shallows and in miseries. 
On such a full sea are we now afloat. 
And we must take the current when it serves, or lose our ventures."

- William Shakespeare