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.