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