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!"