Thursday, December 31, 2015

When my kidneys went on strike - Henry P Snicklesnorter

Back when I was fifty eight, my kidneys called a strike
The body soon objected, but was told to take a hike.
“We're sick of doing all the work,” the kidney spokesman said
“And if we're not here to do the work, you other parts are dead.”
Well the body wasn't happy, and so that very day,
A summit meeting was proposed, to find a different way,
To keep old Henry going, for at least a few more years,
And all the different body parts, spoke up with their ideas.
“We'll just carry on regardless,” said the brain, with great bravado,
But the other parts said, “break it down, fair dinkum, what would you know?”
“Your thinkings getting fuzzy, removed from us down here,”
“We need a real solution, and bloody quick, that's clear.”
“That pair of lazy mongrels, have got us by the throat,”
“We've got to pull together lads, to keep us all afloat”
The haemoglobin had it's say and said, “I'm fading fast,”
“Unless we work out something quick, I don't think I can last.”
The bones said “we're degrading,” the skin said with a twitch,
”I'm breaking out in little sores, and a really nasty itch,”
The feet reported swelling, the eyes began to dim,
The way things were progressing, it was looking rather grim
The heart said “I'm in trouble,” the lungs said “we are too”
The liver and the pancreas, said “what else can we do?”
Just then a quiet voice was heard, from somewhere down below,
“I am the peritoneum - and I'll give it a go”
“I can do a year or three,” it said, “at least we'll all survive,”
“While Henry works out long-term plans, to keep us all alive.”
And so it was, though not without some trauma on the way,
Then Henry moved to Home HD, to fight another day.
Long hours on slow nocturnal, near good as transplant some will say,
And the body wakes up feeling great, looks forward to each day,
And what about those kidneys, who thought they controlled the play?
They're just a pair of bludgers, - who needs them anyway?

Friday, December 25, 2015

Now, subsidised dialysis for Hepatitis B positive patients in Hyderabad

"...the Bhagwan Mahavir Jain Relief Foundation Trust, the NGO that is doing phenomenal work in the area of dialysis in Hyderabad today inaugurated an eight bed dialysis centre at Mahavir Hospital in Hyderabad. The dialysis sessions are all going to be single use and are going to be offered at the same rate as negative sessions despite the additional costs incurred by the trust due to single use dialysis sessions. The trust provides dialysis at Rs. 400 per session which is a huge discount from the price charged by regular dialysis centres."

Click here for more details.

Saturday, December 19, 2015

Kerala Diary

Despite being a self-confessed travel lover, I hadn't ever been to Kerala, if you don't count the trip I did when I was only a couple of years old. So, when my brother Karan (who was coming for a month-long holiday to India from the US) suggested that we go to Kerala for a few days, I was excited. Finally I would get to visit God's own country!

Vembanad Lake

We landed in Kochi airport and after lunch at a hotel close to the airport, we headed towards Alappuzha or Alleppey as it is commonly called. We checked into the Lemon Tree Hotel by Vembanad Lake. We got rooms right next to an infinity pool that overlooked the lake. The view was truly heavenly. The next three early mornings were spent sipping tea sitting on the banks of the lake and enjoying nature at its best - birds fluttering, chirping and the gentle morning breeze causing the leaves on the countless trees around to wake up.

Experiencing the backwaters in a Houseboat

We decided to take a houseboat on our last day in Alleppey and hired one from the Lemon Tree Hotel itself. The 5 hour trip on the houseboat through the backwaters was one of the high points of our trip. The houseboat is well-equipped with two bedrooms, a dining area and an open-to-air jacuzzi. Meals are cooked on the boat to your liking.

The houseboat makes its way through the lake into the backwaters and then takes you around in the network of waterways that make up the backwaters. The narrow waterways flanked on both sides by palm trees make for a beautiful sight.

We spent a couple of hours in the open top jacuzzi while the boat was going through the backwaters. As we were about to get out, it started raining. This was really an awesome experience.

Athirapally Waterfalls

On the penultimate day of our trip, we headed out to Athirapally Waterfalls. This was the same waterfall where movies like Raavan and Bahubali have been shot. The waterfalls are in their full glory during June and July. At this time of the year, the flow of the water was about 25% of what it is then. We were staying at the Rainforest Resort which offers a spectacular view of the falls. All the rooms are facing the waterfall and you can see the waterfall while you are showering as well!

The next morning, we hiked down to the base of the fall with the help of a guide. I was wary of doing this given my recent heart condition but then I threw caution to the winds and decided to go for it as the thought of getting wet under the gushing water was too tempting to resist. The guide was an expert who knew exactly what he was doing and led us to the base. No one is allowed to go right up to the base of the falls as the water can sweep you away. But he led us to one of the streams of the river that has many mini-waterfalls where you can sit and enjoy the force of water on your head and back. This was easily the best part of my trip. From afar, you feel that the water would hardly have any pressure but when you actually sit under it, you cannot sit for more than a minute at a time.

After returning to our hotel, we got into the infinity pool here and relaxed for an hour.

Dialysis at NephroPlus Alleppey

I needed two dialysis sessions during the trip, both of which I took at the NephroPlus centre in Alleppey. I could sleep through most of both the sessions and everything went very well. Gijo and Reneesh there took very good care of me. I generally judge the quality of dialysis by how I feel after the session. At the end of both the sessions, I felt totally fine and rearing to go!

Elephant Shower

On the way from Alleppey to Athirapally, we stopped at an elephant camp where we are allowed to sit atop an elephant and the elephant takes water in its trunk and gives you a shower! For some reason, the elephant was not in the mood when I was sitting on top of it but began the shower when I was patting it after getting down!

Hot Dishes

Our best culinary experience during our trip was at a very simple, homestay place called Hot Dishes. The food there is prepared only after you arrive. We had a simple 'Kerala Sadhya' or a meal which consists of rice, avvial, sambar, rasam, pickle, curd and papads. They added dosas on special request and the meal was very good. It is prepared and served by the owners themselves. The place is open generally only for breakfast and dinner but I called them around lunch time and requested them to serve lunch and they agreed! Traditional Kerala hospitality, for you!

Tuesday, December 1, 2015

Thinkers and doers

I find that in any group of people that comes together to take up some activity - a company, a project team, a non-profit organisation etc., there are broadly two groups of people - the thinkers and the doers. The thinkers are the ones with the ideas and the doers are those that implement them. Both are essential and equally important to the success of the group.

The thinkers come up with what should be done. They often will have some ideas on how they should be done. They will come up with a lot of really great stuff. A lot of it would be out-of-the-box. A lot of it could be described as visionary. They can think big. Almost revolutionary. But ask them to actually do any of those things and they would feel lost. They wouldn't know where to start. They would have absolutely no interest in doing anything.

The doers, on the other hand, are content well, doing stuff. They can't come up with the big ideas. They are great executioners. They know how to get things done. They are also ready to pull their socks up and get down to doing things themselves. They know their team (if they have one) and who's good at what. They often have a lot of respect for the thinkers and wonder why they can't come up with such great ideas!

The thinkers get frustrated when their ideas don't get implemented like they envisioned or don't get implemented soon enough. They find the doers incompetent at times and wonder why their great ideas are not being crystallised.

The doers get frustrated when the work they're doing is not appreciated. They believe that the thinkers, who come up with all these ideas can't do anything themselves and all they can do is instruct.

The truth is that both the types of people are extremely critical for the success of any team. One without the other is a sure recipe for failure. It is important for both to realise this and appreciate the other.

Tuesday, November 17, 2015

Oh Enalapril!

It all began with an Echocardiogram,
Until then I knew my heart like the back of my palm.
Back came a scary diagnosis,
‘Basal Inferior LV Akinesis’.

There were murmurs of a Myocardial Infarction,
Just when we were gaining transplant traction.
I met my cardiologist and my nephrologist,
Who both explained to me the report’s gist.

Thankfully, they said, there's this magic pill,
That goes by the name of Enalapril.
It is said to reverse the condition of my heart,
Of course I must also play my part.

Now I already have a low Blood pressure,
Which is worsened by this ACE inhibitor.
So I started off on 1.25 mg once a week,
Which you would agree is awfully meek.

Imagine, however, a daily dose!
And what that would do to my BP woes?
Some experts opine I need a Beta Blocker as well,
That would make my life surely and truly hell.

A transplant will have to wait,
Like I am not already late!
But for now I'm hoping the side effects of Enalapril,
Will not prevent me from flying at will!

Thursday, October 29, 2015

Life on Dialysis - one challenge after another

Until a couple of years back, I used to take about 6 pills a day which was considered to be a small number for someone on dialysis. Most of these were simple things like Vitamin supplements. Today I take about 20 pills a day.

The last year or so especially has been rough. It's been one thing after another. Like healthy people, I had become quite complacent about my health thinking I was doing fairly well and that this would go one forever. However, the last few problems have been like a rude awakening. My body is not infallible after all.

Ask someone who has been for a while on dialysis what bothers them? It is likely that they would have got used to dialysis but it is the co-morbidities that come along with kidney failure that are most bothersome. If it was only dialysis that we had to deal with, we might deal with it pretty well. Add the host of issues with almost every organ in the body that confront you on a regular basis - and suddenly things become very difficult.

I have been lucky to be able to get access to daily nocturnal home hemo. At times I wonder, with this modality itself, I am struggling to cope with the accompanying issues, what would have happened if I would have been on thrice weekly? There's not one doubt in my mind that I would not have survived this long.

And yet, there are many people, many of whom I personally know, who despite being on thrice weekly and some even twice weekly have been on dialysis for longer than I have! People compliment me for my courage and determination. My secret is the long hours of dialysis I get daily. Not my will-power, not my mental strength.

I feel I have done nothing compared to these people and I get more than my fair share of credit. It is fairly easy to lead a normal life by being on daily nocturnal.

Now, after so many years, I have started feeling vulnerable. The issues that have come up lately have made me think of a lot of things. I become depressed and irritated more easily. A simple email, a Whatsapp message, a sentence said by someone around me are all enough to piss me off completely - sometimes for days on end. I have ended up offending many people who truly care for me and I feel really bad about this.

Sunday, October 11, 2015

Online pharmacy stores: Miles to go before they reap

With everyone buying everything online these days and with me currently taking 17 pills every day, I thought it might be worth checking out online pharmacy stores. I asked around for and was recommended MedPlus Mart. I also happened to see a Zigy ad somewhere and thought I would try that as well.

First MedPlus Mart. The account creation was fairly straightforward. One thing that bothered me however was that I had to enter my login and password every time. There was no option that remembered me which has become a fairly standard feature on websites.

The interface to order medicines was fairly good. You start typing the name of the medicine and it matches the name with a list of actual medicines and then you select the medicine you want. You then type in the quantity. If one of their stores close enough to you has it you can add it to your cart or you are told that the medicine is not available or that quantity is not available. You are then given an option to enter your mobile number and email address with a promise that you would be contacted should the med become available later.

On multiple occasions, one of the meds I take regularly had only 1 strip available. I entered both my mobile number and email address but never got contacted. Strangely enough, after a few days, if I went to the site and looked it up again, it would again be available but only one strip. A few days back, when I tried they had 4 strips.

The delivery is fairly prompt, even if not within the promised 6 hours or less. On one occasion, it took more than 24 hours.

You have options to scan and upload your prescription or show your prescription when you collect the meds yourself. I obviously chose to scan and upload and have them delivered to me. Duh.

They give a 15% discount for orders above Rs. 1000 and 10% for orders worth less than that.

Next up, Zigy. Well, I never got down to getting anything from them. Their process to check the prescription was so freakin' complicated. I uploaded the same prescription that I used for MedPlus Mart. They said they would verify it and revert. Then I got a call after a few hours saying that the number of days for which I had to take the meds was not stated in the prescription. I explained to him that I was on these meds for a long time and had to take them on a continuous basis. Everyone with a chronic condition had to take meds like forever. Doctors don't write that on the prescription.

They wanted me to go back to the doctor and have him state this specifically on my prescription. I refused. The saga ended there.

I explained to the guy who called that they needed to change their rules and make them more flexible in India. The guy apologised. Call centre folks do that a lot. Thanks and Sorry.

I am continuing with MedPlus Mart for now. Despite the rough edges, at least I can get stuff from them.

Friday, October 9, 2015

Justice Arnab

I saw the movie Talvar a few days back. The movie is based on the 2008 Noida double murder case. The case was covered extensively in the national media at that time. The Talwars, Aarushi's parents have been sentenced to life imprisonment in 2013. The film does not overtly take any sides but hints that the parents were innocent. The film highlights the way the investigation was botched up by the Noida police. It also suggests that the CBI team that finally fought the case in court that led to the conviction of the parents had a hidden agenda.

All this aside, at the time of the investigation, the media pronounced the parents guilty. The way the media trial was conducted, throwing all journalistic norms to the wind was appalling. Many news channels sensationalised the entire murder revealing sensitive details about the girls and her parents to a nation that had actually had nothing to do with it. It was not a case of national importance, after all.

The media in this country has become prosecution, judge and executioner, all rolled into one. Objective news coverage can rarely be found with news anchors routinely taking sides quite unabashedly.

The way that most ghoulish of news anchors, Arnab Goswami of Times Now conducts his debates is only to be seen to be believed. He asks a question to one of the participants and answers it as well. Many participants wonder why they have been called if they are not even given an opportunity to answer!

Some people accuse television channels of being anti-BJP. I don't really this is an accurate assessment. Television channels do whatever increases their TRPs which is directly linked to advertising revenue. Some of my friends would say this makes perfect business sense. Television channels are after all commercial entities and have to give the best returns to their investors. Why then should they not do whatever it takes to drive revenues and profits up?

The answer to this is - professional ethics. Journalists take up this profession for the pleasure in bringing the truth to the people; at least that is what the original intent might have been. To then go about your job without adhering to its most basic tenets is highly objectionable.

Unfortunately we live in times where anything can be justified as ethical. Many doctors justify prescribing unnecessary procedures and investigations to the high fees paid to get their degrees. Many ministers justify corruption by citing the high cost of getting elected. Why fault news channels for distorting news to push up their advertising revenues?

The whole thing is that - ke bhaiyya sab se bada rupaiyya!

Saturday, October 3, 2015

Birthday Pics

Just completed 40 years. Here are some pictures from the celebrations that went on for 4 days! Unfortunately, no pics are available from the dinner with my school friends.

With NephroPlus directors at SodaBottleOpenerWala

Striking a pose before the NephroPlus party

Cutting the cake

Since Sandeep couldn't make it for the party, he brought in a special surprise the day after

Friday, October 2, 2015

Punjab Diary

It all started with an email from our North Ops Head saying that the launch date for our Ludhiana centre has been fixed and since I had not attended any North centre launches until now, could I attend? I was really touched and decided to visit Ludhiana for our centre launch and Press Meet there. I also decided to visit three of our other centres there.

India-Pakistan Border

I reached Amritsar in the afternoon of the 21st via Delhi. That evening I decided to visit the Atari Wagah border and watch the beating retreat ceremony that is held every evening at sunset.

A shiver ran down my spine on seeing that Lahore was so close by!

It was a visual spectacle. Michael Palin described the ceremony as a display of "carefully choreographed contempt!" The place has two big arches on either side, one with a picture of Mahatma Gandhi and the other with a picture of Mohd. Ali Jinnah and two sets of Indian and Pakistani flags. A huge crowd had gathered on the Indian side. Comparatively, the Pakistani side had a much smaller number.

At the border (with the Pakistani flag and a pic of the Qaid-e-Azam in the background)

Patriotic songs from Hindi films were played on the Indian side and we could a hear a similar din from the other side as well. There is an emcee who urges the crowd to shout slogans. Amitabh Bachchan's voice explains the ceremony and its history. At around the sunset, the ceremony starts. The soldiers march very aggressively with their feet coming as high as their shoulders. The gates open for a brief period where soldiers from both sides shake each other's hands in a very curt manner and the flags are lowered.

"Carefully Choreographed Contempt"

Lowering of the flags

During this period you can see the Pakistanis. Many from both sides waved at each other and showed heart signs with their hands which added a touch of warmth amongst all the aggression.

Indians and Pakistanis wave at each other from across the border

I wondered at the end of it all why the ceremony was required in the first place? Why couldn't the flags be kept there all the time?

Ludhiana centre launch

The launch of the centre went very well. I later learnt that the patients (whom we call guests) at the centre thought that there was no such person like Kamal and that the NephroPlus management had cooked up the whole story about a dialysis patient being one of the founders of the company. They were now happy that there was such a person and they actually met him. I found this really hilarious!

It was really nice to meet the teams at the different centres we have - Amritsar, two at Ludhiana, Khanna and Mohali. When I talk to our teams, I feel really humbled because I sit in my office every day sending emails and doing calls but these are the people who are actually making a difference on the ground. These are the people who actually translate our mission from paper into actual patient care. I really cannot thank them enough. I usually do a small talk to the team when I visit a centre. I always focus on only one thing - make the guest smile!

A card given by our centre team at Khanna

Dialysis Sessions

I was out of town for a total of three days. I did two dialysis sessions of two hours each - one at Amritsar and one at our Mohali centre. This was inadequate when I look back because at the end of the trip I was fluid overloaded and have not been able to come back to my dry weight. More on this later.

Dialysis at Amritsar

Dialysis at Mohali

Dal Roti kaar di, Lassi Amritsar di

I had heard a lot about the food at Punjab. I got to sample two really awesome things. When I was in Amritsar, I visited Gian Chand Lassi Wale and had a glass of the famous lassi there. It was very good. They added dollops of butter to it which made it very filling!

Gian Chand Lassi

When in Chandigarh, I visited Pal Dhaba where I had possibly the best Paneer Butter Masala and Dal Makhani with Lachcha Paratha. The Dhaba is a very simple place with no fancy interiors. The food however was divine.

Paneer Buter Masala, Dal Makhani, Lachcha Paratha at Pal Dhaba

Back home

All in all, it was a very satisfying trip. I got to do everything I like - visit our centres, meet our guests, do some touristy things, eat good food. I loved the time I spent with my team in the North. I got to understand them better. It was my first trip after London and the heart issues subsequently. It went fairly well on the health front as well. Looking forward to more such trips now!

Thursday, September 24, 2015

Today is aHUS Awareness Day!

Today is aHUS Awareness Day. What does it mean for us in India? Statistics estimate that 1-2 in a million have atypical HUS. In India, that comes to about 1000-2000 people. Possibly, less than 10% (about 100-200) of those actually have been diagnosed. Less than 1% are probably receiving any treatment. This means that about 10-20 people are possibly receiving any treatment for this. How successful the treatment is unknown.

In a country like India where the Government is bogged down with many issues, something that affects about a thousand people would be very low on the priority list; even if all those thousand people eventually died. Many times that number die of other causes every day. Many of those causes are things that the Government can do something about quite easily.

What then should those thousand aHUS patients do? 

It is very frustrating that we live in a country where there is no access to the drug eculizumab (that is available elsewhere) that would give us an excellent chance at living a normal life without the sword of kidney failure hanging over our heads. If you are a newly diagnosed aHUS patient, you can avoid any damage to your kidneys and the rest of your body by using eculizumab. If you’ve been diagnosed long back and are on dialysis currently, you can undergo a successful kidney transplant by using this drug. Without this drug, there could be rapid progression to ESRD for newly diagnosed patients and recurrence of HUS and loss of the transplanted kidney if you underwent a kidney transplant.

The question that is probably popping in your mind right now is why don’t we have the drug in India and why can’t we get it to India from where it is available? The answer to both these questions is the cost of the drug. Eculizumab has been declared by Fortune magazine as the costliest drug in the world today. In Indian rupees the cost of one year of treatment currently could be a couple of crores. And you need to take the drug lifelong as per current protocols. The Indian government does not currently have a Universal Healthcare Coverage policy. Insurance companies have a yearly cap that would never touch that figure and maybe only a minuscule number of patients can afford that themselves.  

The good thing is that there are more options coming. As of today, there are five new complement inhibitors (the class of drugs to which eculizumab belongs and which can potentially have the same effect as eculizumab). More options is always a good thing. This would bring down costs and improve availability as well. How soon these drugs would be available? How much would the alternatives cost? How would they be made available in India? Well, the answers to these questions are not known. Your guess is as good as mine!

Future generations of aHUS patients would definitely have better options. For the current generation, the options could be limited for some time to come. 

It is extremely important for us to create awareness about this horrible disease. Without more awareness, people who matter will not even have this on their radar. We need to make some noise so that people at least start talking about this. The ice-bucket challenge did a lot for ALS. Making a noise does help. If the Government gets to know about this problem and has it on their minds while drafting any healthcare policy, there could be a small chance that we get some kind of help in terms of laws or policies that might help us. If not us, at least future generations of aHUS patients will have treatment options. We owe them that much.

To all those who are affected by this disease, here is a quote (modified slightly) from the film "Independence Day":

"We will not go quietly into the night! 
We will not perish without a fight! 
We're going to live on! 
We're going to survive! 
Today we celebrate our aHUS Day!"

Friday, September 4, 2015

A rough couple of months

Things have been a little rough on my health front for the last couple of months. It all started when I got back from London. I had some breathlessness a few days after I got back. I underwent a Coronary Angiogram (done by my classmate and now famous cardiologist, Dr. Anuj Kapadiya) which showed Ectatic Coronaries with Slow Flow. Thankfully there were no blocks. I was put on some blood thinning medication.

However even a month and half after the medication, the breathlessness would return for a few hours or sometimes even a day. I went back to my nephrologist and cardiologist. They did another 2D Echocardiogram. That showed something called "Regional Wall Motion Abnormalities in the Right Coronary Artery Region" along with "Akinesia in the Basal Inferior Left Ventricle". Well, that meant some small problem in the heart. I have had Grade 1 Diastolic Dysfunction for some time now and they wanted to do a Stress Echo to check if that was worsening when I exercised. The test came out ok.

I also consulted the amazing Dr. John Agar of Australia at the Home Dialysis Central Forums. Dr. Agar believed it could be fluid hidden in my body. He suggested that I remove an extra 250 ml every other day and see how I felt.

I have started doing this. I am down about 1.3 kgs from my earlier dry weight without any symptoms. So, it could be the answer. But in kidney disease, you never know until you actually know! So, I am hoping this settles soon.

This has hampered my QoL a lot. I have not been able to swim or travel, both of which I enjoy greatly.

Life with kidney disease is never smooth sailing for too long. You keep having issues on and off. It is therefore always important to try to be in control and do what's advised so that you can at least try and prevent the things that are preventable.

Thursday, August 20, 2015

Don't blame us for being 'non-compliant' - it is you who have failed us

In a brilliant blog post on Home Dialysis Central, Dori Schatell of the Medical Education Institute says:

"At the NKF Spring Clinicals meeting in March, a comment I was told that someone made at the microphone during a session still bothers me months later. The gist of it was: “Why does all of the responsibility for improving outcomes fall on clinicians—where is the patient in all of this?” [Good point, but it goes on…] “I lose money if my patients don’t reach the quality targets. Why can’t we fine the patients if they don’t do their part?—and audience members applauded!"

This attitude among some nephrologists (not all are like this, of course) is extremely bothersome. No one chooses to be on dialysis. It is something thrust upon them. How can anyone have such a callous attitude towards them? 

The entire healthcare system has failed us dialysis patients. Look at the amount of innovation that has happened in cardiology and compare that with the innovation that has happened in dialysis. Only one word can describe this: pathetic.

The situation in India in terms of problems that patients have is far worse. Add all the problems that patients in developed countries have and add the fact that you need to pay out-of-pocket for everything and the cocktail becomes that much more heady. When there are better options available in the world today, we are still expected to make do with something that is hardly optimal.

And yet, we are called non-compliant!

I am not finding fault with nephrologists. The problem is the system. Healthcare in India is a different beast. The humungous population, the lack of resources, non-protocolised delivery and the very low patient to nephrologist ratio all contribute in some measure to the problem.

All I am saying is that healthcare providers need to be a little more sympathetic to these problems. Treat us with a little more dignity, a little more compassion. That should be doable, right?

Monday, August 17, 2015

A possible solution to end Parliament disruptions

The recent Parliament session was a complete wash-out. Disruptions by the opposition, led by the Congress prevented important bills from being passed. Apart from the huge loss of money incurred by running the houses of Parliament without any business being transacted, there has been an incalculable loss in terms of opportunity by not passing important bills.

Who is really to blame?

The supporters of the BJP lay the blame squarely on the shoulders of the Gandhis who have such a pathological hate for Prime Minister Narendra Modi that they are loath to see him become successful in anything. The Congress, on the other hand says that they are not doing anything the BJP did not do when it was in the opposition. This is not entirely devoid of truth. Yes, of course, if they did something wrong, it does not mean you do it as well!

This cycle of disrupting Parliament needs a permanent solution.

Consider what Parliamentarians earn. Apart from a monthly salary and allowances of Rs. 1.3 lakh per month, they get a daily allowance of Rs. 2,000 to attend Parliament. All this is tax-free. Apart from this, "MPs can travel anywhere in the country by rail, first class, and get 34 free air tickets for themselves or a companion a year. Spouses of MPs can  travel free by air from their residence to New Delhi eight times a year when Parliament  is in session and unlimited number of times by rail."

What needs to be implemented strictly is a pro-rata system. Pay only for the work done. For example, if the official number of hours Parliament was supposed to function was x, of which due to various disruptions, it worked only for y, pay only y/x of all the above mentioned amounts. The important thing is that all the allowances, air tickets, household expenses etc. should all be paid pro-rata. Just doing this for the salary would hardly achieve anything.

As it is, most MPs are wealthy enough for this to make much of a difference. So, we need to be very stringent about these conditions.

There has been some talk about such a proposal, to which there already has been some opposition.

We need to implement this quickly. The country has already lost a lot of money due to our inconsiderate and egoistic leaders.

Wednesday, August 5, 2015

Announcing India's first Atypical HUS Registry!

Atypical Hemolytic Uremic Syndrome is an ultra-rare disease affecting a small number of patients world-wide. This devastating disease affects children and adults and without proper management and treatment by experts can lead to kidney failure and in some cases, even death.

Very little data exists about this disease in India. No published data about the incidence and prevalence of this disease is available. It is very important for some database to be available because without this, it is difficult to make a case for pharmaceutical companies, healthcare providers and importantly, the government to take any decisions regarding this disease.

This is my primary disease, the disease that caused my kidneys to fail. I founded The Atypical HUS India Foundation a few months back which is now a registered Trust. Through this foundation, I have started a registry for Atypical HUS Indian patients.

I am requesting patients and family members to please spare a few minutes and fill out the registry form so that we can make a small beginning in collecting some data about this disease in India.

The link to the registry form is here.

Please share this with anyone you know who is afflicted with this disease or has a family member or friend who has this disease and request them to fill out the form. No personal data would be shared with anyone. The data will only be used for analysis. Thanks!

Monday, July 27, 2015

I will always regret not taking up medicine after my 10th

I was at one our dialysis centres this Saturday afternoon. This centre is inside a hospital. I did my usual round of the centre, talking to a few guests, inspecting the facility and then settled down at the Duty Doctor's desk. A few minutes later, a patient was wheeled into the unit on a stretcher. There was commotion all around. The patient was critical and needed to be put on a ventilator and dialysed. The patient was shifted onto the bed and a ventilator was brought in. A doctor in blue scrubs followed. Over the next half an hour or so, the patient was put on the ventilator by the doctor, presumably an anesthetist.

For the first time, I had seen someone being put on a ventilator. The way the anesthetist went about the whole process really blew me away. He remained calm and composed throughout the process. At times, there was panic among the other staff from the ICU who had accompanied him. But he remained at ease, skillfully going about his job. He realised that a mistake could cause the life he was literally holding in his hands to slip away.

A few minutes later, dialysis was begun.

When I was nearing completion of my 10th, I was very clear in my head. I wanted to take up engineering. It was primarily driven by my hate for biology. I would do anything to not study biology any further. Looking back, I feel that not enough counselling is available in India to help you decide. Also, at that age, I am not really sure how many people are mature enough to make up their minds on such an important aspect.

However, it was not until a few years after I was diagnosed with kidney disease myself in 1997 did it dawn on me that I would have really loved being a doctor. Maybe, if I was not diagnosed with kidney disease, I might not have felt that way!

When you are on dialysis, you see a variety of doctors. Your life practically revolves around doctors. I genuinely believe there is no feeling greater in this world than that felt by a doctor when a patient thanks you profusely for relieving him of a major problem. It is not the financial reward, it is not ego, it is not power. It is a simple connect between two human beings. This connect is impossible in high paying software jobs, in closing huge business deals, in financial services and - you're not going to believe I said this - in making great food!

Some people argue that by being in a healthcare company, the impact that can be made is much greater since you are bringing quality healthcare to a lot more people than that possible by being a doctor. I beg to differ. For me, it is all about the personal connect. That 30 seconds of the warm, fuzzy feeling in your heart when you look into your patient's eye and see the genuine gratitude. No other job in the world can rival that.

Thursday, July 16, 2015

Updates from the aHUS UK and aHUS alliance meetings in London

I attended the aHUS UK patient meeting and the aHUS Alliance meeting in London during the last week of June. I learnt a lot of new things about aHUS. I am going to summarise the learnings here.

The biggest takeaway for me was that there are four new drugs in the pipeline to treat Atypical HUS. Dr. Wynne Weston-Davies of Volution Immuno Pharmaceuticals presented this information:

- ALN-CC5 from Alnylam
- Compstatin from Apellis
- OMS721 from Omeros
- Coversin from Volution

This should ideally result in a reduction of the price of Soliris from Alexion which would mean a better chance of access to it as well. Competition is always a good thing!

For more details on this, please click here

Each of these drugs acts in different ways but the end result would be similar - treatment of aHUS, at initial occurrence, subsequent occurrences, for kidney transplants etc. Another advantage of some of these drugs is that they could be administered by sub-cutaneous injection or even orally rather than the IV infusions that Soliris needs. There was also some talk about Alexion working on a sub-cutaneous version of Soliris.

All these drugs are still in early stages of development and clinical trials and may be years before they will be usable by patients in India. However, at least something is happening!

I also learnt of a new mutation that is implicated in aHUS - DGKE. This mutation unfortunately is not treatable by Soliris since it is not associated with complement activity.

Another important discussion that was had was the availability of complement inhibitors (currently only Soliris) in different countries. Here is a summary of the information:

Ideally, any patient should have access to a complement inhibitor (currently only Soliris)  without having to pay out of pocket:

- At initial diagnosis
- Subsequent episodes
- During a Transplant and after to maintain the transplanted kidney

The following table summarises the situation in different countries with respect to this:
Country Status
France Full access
Italy Full access
UK Full access
Germany Full access
USA Full access
Russia Full access
Belgium Available for those with current aHUS activity, not available for transplants
Spain Available with some restrictions
Canada Available in some provinces and to others on a case by case basis
Netherlands Full access, future uncertain
Australia Available only for flairs and for a maximum of 12 months
India No access
*Full Access means access for all the above three situations

We had a good discussion on how to improve situations in countries where access is not complete.

Another discussion was had on the possibility of withdrawing Soliris and monitoring closely. This would reduce the cost per patient enabling more patients to get access to the drug. Patients were wary of this due to the risks involved.

Prof. Tim Goodship presented the history of aHUS treatment in the UK and said that currently a National Service has been created temporarily being managed by his team at Newcastle upon Tyne. The National Service is responsible to decide which patients should be given Soliris.

Overall, it was a great opportunity to meet so many others from different countries, each fighting the same battle. Here's a picture of the entire team:

Tuesday, July 14, 2015

Being Mortal: Medicine and What Matters in the End - Atul Gawande

I recently finished reading this book. I had read Atul Gawande's earlier two books - Better and The Checklist Manifesto and had been impressed by both. This book also has the familiar Gawande style - incidents from his practice interspersed with various insights into the issue.

Many years back, when I had healthy kidneys, I had briefly studied a Jain text called 'Vairagya Shatak'. I vividly remember a line from that text - '.... tinni jana anulagga, rogo-a, jara-a, macchu-a' which roughly translated to '(Once an individual is born), three people run after him - disease, aging and death'. During those days, I was too young to understand the importance of that line. I was invincible. None of these could catch up with me! Or so, I thought.

Gawande's book talks about people in their last few years and the challenges healthcare faces today in looking after them. He emphasises that what is a priority for medicine may not necessarily be the priority of the people being treated.

He highlights the need to give people a purpose in life. He narrates the happenings at Chase Memorial Nursing Home where eighty severely disabled people were being nursed. The nursing home was a depressing place to be, with strict routines, fixed times for everything from waking up to eating to sleeping. Until Dr. Bill Thomas entered the scene. Dr. Thomas tried an experiment. He enlivened the place by putting in green plants in every room, creating a vegetable and flower garden and bringing in animals. The authorities and the staff balked at first but decided to give it a shot. The results were amazing. Outcomes improved dramatically. The number of anti-depressants people were taking reduced.

The above experiment is a lesson to a lot of healthcare experts. Even on dialysis, I strongly believe, people should work. A purpose in life is often what differentiates people who do well from those who don't.

Another important thing that Gawande explains in his book is independence. Even the elderly like to be independent. He explains how people preferred to stay in centres where they had individual apartments with a door that closed to common living areas where people did not have any privacy. Even though, at first thought, it might seem that having such apartments might be risky for the elderly (should there be a fall or something), the amount of control that is lost by not doing so can play a huge part in keeping the person depressed.

Healthcare professionals have been conditioned to save lives. They are not, however, taught about the importance of the quality of life after it is saved. What purpose is saving a life if it is sustained by means of a feeding tube or on the ventilator? He advocates that people who are particularly vulnerable be asked, well in advance, what is important to them? "...what trade-offs he was willing to make and not willing to make to try to stop what was happening to him?"

For some people, complete physical paralysis, for example, may just not be acceptable. For some, just being around to see their grandchildren play, even if from a wheel chair might be good enough. The important thing is each of us is different. This is what medical professionals must realise.

This applies to anyone with a chronic condition as well. It is important for us to think through what we would be willing to compromise on should things come to that. And then give an advanced directive to our kin. The directive could be simple answers to the following questions: (from Gawande's book)

1. Do you want to be resuscitated if your heart stops? 
2. Do you want aggressive treatments such as intubation and mechanical ventilation? 
3. Do you want antibiotics?
4. Do you want tube or intravenous feeding if you can’t eat on your own?

You could also have answers like - try this for x days only.

If we don't do such a thing, these decisions are left to people who would not know the answer and we would be putting them in a very difficult situation.

I would recommend this book to every person in healthcare even if he or she is not caring for the elderly. 

Saturday, July 11, 2015

Appreciate the value of good health

I had just got back from London a few days back. I suddenly developed some breathlessness. My fluid weight gain was under control. Everything else seemed normal. I visited the nephrologist who referred me to a cardiologist. We did some tests. They mostly came out ok. Nothing serious. I was put on some medication which should settle the issue.

Around the same time however, I had to change my buttonhole sites and was using sharp needles instead of the usual blunt ones. Due to this, I had some sleepless nights. The sharp needles hurt.

Again, at the same time, I had changed one particular medication which was supposed to reduce the itching I was experiencing. The itching did not reduce. Instead I began having symptoms of restless legs.

Dealing with all these things at the same time became quite onerous. I became frustrated and depressed. I usually am fairly good at dealing with issues. But when they come all at once, I find it difficult to handle.

Kidney disease is something that takes over your body completely. Not one part of it is spared. Even a transplant is not a 100% solution. There are issues from time to time. There is always the stress of your creatinine value going slightly up and worrying about losing the transplant.

I met a friend with CKD a few weeks back. We were chatting about our lives in general. We were at a restaurant and were looking around us. My friend remarked, "Look at all these people. They are all laughing and joking. They are probably talking about what they're going to be doing this weekend. And look at us. We are talking about how many more years we might be able to live!"

It was so true. People with and without a chronic condition have such different perspectives about life. The things that are important to each group are so very different!

One sad part however is that healthy people never realize the importance of good health. They live in a world where they think that nothing would happen to them. Many people continuously abuse their bodies. They take good health for granted.

This is really sad. I feel like pleading with them not to do this. I want to tell them that they have no idea what it is like to have a chronic disease. I want to tell them that they are not as safe as they think they are. All it takes is one moment in time when things could completely change. The've changed for me. The've changed for many others.

Please don't take your body for granted. Be grateful for good health. Preserve it with all your might.

Monday, July 6, 2015

London Diary

Work and pleasure

I am a part of the aHUS Alliance which is an umbrella organisation for all aHUS Patient Organisations from all around the globe. I represent India through the Atypical HUS India Foundation, which is India's official aHUS patient organisation. I had attended the last aHUS alliance meeting held in Paris by video conference. So, this time, when I got to know that the alliance was having its meeting in London, I thought it would be great if I could attend in person.

I had never been to London. So, I could go a few days early and then look around the place and attend the meeting on the 28th of June and come back. The UK aHUS patient organisation was having its meeting on the preceding day and we were all invited for that as well.

Burough Market - foodie's paradise

The day after I landed, I had scheduled a dialysis session. The London Clinic at Devonshire Place needed me to come that day at 8 a.m. for my virology tests before they would take me for my dialysis at 2 p.m. I took a combination of an overground train and the famous London Underground Tube to arrive at Devonshire Place. Once my blood was collected, I had a few hours to kill. My family had suggested that I visit Madame Tussaud's, the famous wax museum. I decided to skip that and visit Burough Market, which is a wonderful market with myriad food shops selling everything from fresh produce to sandwiches to an array of desserts.

I first gorged on fresh berries. I enjoyed them thoroughly. The problem with my home city of Hyderabad is that you rarely get berries. I took a small tub of assorted berries which had a mix of blackberries, strawberries, raspberries and blueberries. I then had a Vegetable Panini Sandwich. The bread used in this sandwich was this awesome, fresh, ciabatta and was made very well. I topped this up with a cup of strawberries and a cup of black currant yoghurt. I also tried a small piece of baklava.

I honestly believe that to enjoy a place you need to do some of the stuff locals do like this market. I would pick such stuff any day over wax statues!

London sights

The next day, I got on to a Hop On Hop Off bus. These buses take you around the famous sights of London and allow you 'Hop Off' the bus at any place you want to explore more. Buses arrive roughly every ten to fifteen minutes and you can 'Hop On' to any of them once you're done with a site. I first got off at Shakespeare's Globe Theatre. I had studied two Shakespeare books as part of school and it was a good experience seeing the theatre, which is a replica of the original theatre which was destroyed in a fire. I actually watched part of a play being staged, 'Measure for Measure'.

I then hopped off at Westminster Abbey. This is a church where most royal weddings are held. This is also a burial for famous British people. As you walk along the corridors of the abbey, you notice the graves of people like Charles Darwin and Albert Einstein. Though we've all known of the existence of these people and studied their contributions to science, it is not until you actually see their graves, do you actually realise that they existed in flesh and blood, if you know what I mean!

London Eye

On Saturday evening, with the other participants of the aHUS Alliance, I went on a ride of the London Eye, which is a giant Ferris wheel on the South Bank of the River Thames. You complete an entire circle in about half an hour and it offers some spectacular views of the city. I leave you with some pictures I took.