Friday, March 10, 2017

To move or not to move, that is the question

My parents and I have been staying in our current house for about twenty years now. We built it from scratch. It has served us well. There are a few things however that I don't like about it.

When we built the house, the area was very quiet. You could hardly hear a thing even during the day. The last two decades have seen so much activity in this area that now, even at around five in the morning, you hear vehicles passing by.

So, we've been exploring the idea of moving to that area to an apartment in a quiet part which has some basic amenities like a swimming pool and gym that we could use. Having a gym and a pool right in the apartment complex makes it much easier to go every day. My parents use the gym and I hit the pool almost daily and we need to travel around 10-15 minutes currently to get to these places.

When I get up in the morning, I like to sip on a hot cup of tea by my backyard followed by a ten minute meditation routine. These days, the noise even at that time, bothers me quite a bit. If we took an apartment on a higher floor, this problem would be eliminated.

The commute to my office also takes me about 45 minutes each way on most days. Moving to that part of town would reduce this by half at the very least.

We've seen some apartments. Nothing has quite worked out yet.

We often wonder if we would be able to adjust to an apartment after living for so long in a house. I am also a little worried about the availability of good quality water for my dialysis. Our requirement would be more than the average household.

We've still not made up our minds. The cycle of see-a-good-place, almost-decide, back-off has been repeating much too often for our own good.

We must either bite the bullet and move or stay put here for a few more years. We must decide!

Thursday, March 9, 2017

My current set of health problems

I have often said I can deal with having to do dialysis but it's the comorbidities that bother me. Here are the two main things that currently bother me:

Left knee pain:

I've been diagnosed with Grade II Osteoarthritis which is causing pain in my left knee. The pain started off behind the knee, on the back of the leg and was diagnosed by an MRI as a Baker's Cyst. I was advised to take an anti-inflammatory drug. This helped with the pain. But then I went on a trip to Goa last week which messed the knee up completely.

Ever since I've returned, I have been unable to sleep well on dialysis. Whenever I remove fluid at a rate greater than 400 ml per hour or go even slightly below my dry weight, the pain becomes unbearable. I have now been advised an injection of hyaluronic acid. This is supposed to give temporary relief for a few months to a couple of years. I might take it next week.

Numbness of left hand

This started maybe about a year back. I usually don't dialyze on Tuesdays. This is my 'weekly off' from dialysis - the night when I could sleep at a 100% efficiency. While dialysing, I generally sleep at 80% efficiency. It also gives me some 'me-time' at night! I used to look forward to these days. 

But for the last few months, I have developed some numbness in my left arm and especially my left hand which just does not allow me to sleep beyond an hour at a time. My hand becomes completely numb. I need to get up, shake my hand, sit up and massage the hand a little to relieve the numbness and then try to go back to sleep. Strangely, I do not have this problem when I am on dialysis. So, on non-dialysis nights, I am up by around 4 a.m. which is when I give up trying to go back to sleep!

I have consulted a neurologist who put me on some medication for nerve pain. It was also thought to be a vascular issue (Steal Syndrome) which was ruled out by a test that measured blood flow to the hand. Currently, it looks like the doctors don't know what's causing the numbness and therefore don't know how to treat it. So, I guess I will just have to grin and bear it!

Wednesday, March 8, 2017

Wrong place at the wrong time

India, in the early 2000s is a wrong place to be in, in the wrong time for someone on dialysis.

I felt this really strongly last evening when I was watching television and while switching channels came across a program that was showing the Darjeeling mountain train that was used some decades back to transport tea from the gardens up the hills to the towns below for distribution. These days, however, the teas are moved by road transport, a much less romantic method and the trains are used by passengers.

I wished to experience the mountain train, the mist in the hills of Darjeeling, the champagne of all teas sitting by a tea garden and the beautiful weather this hill station offers. But alas, dialysis restrains me!

I have a pretty comfortable life on dialysis. But the greed of my mind knows no bounds. It yearns for what I do not possess. However, I do not ask for anything too fancy. I do not ask for a cure for my kidney disease. I do not ask for a complement inhibitor with which I can have a successful transplant. All I ask for is a machine that has been available in the US for ten years now. Is that really too much to ask?

The NxStage System One is a portable dialysis machine allows people on dialysis to travel freely. It is not the perfect machine. But it has freed up hundreds of dialysis patients in the US giving them the ability to travel. All I ask for is the access to this machine with the consumables.

There are several new technologies being developed which, in the next five to ten years will change dialysis completely. Those are the claims at least. I so wish these technologies were available a little earlier. I want them NOW.

Wednesday, February 8, 2017

Mindfulness - that elusive state of mind

The next time you're sipping on your favourite beverage - tea, coffee, wine, whatever, take this simple test. Try to focus completely on the experience of drinking the beverage. Feel the liquid go into your mouth, feel the taste, the temperature, the consistency. Feel it go down your gullet. See how long you can keep doing this until your mind gets distracted by other thoughts.

I used to think that meditation was something very difficult and boring. Earlier guidance I had received advised focus on the breath without allowing the mind to get distracted. This was a horribly wrong approach to meditation.

I realised later (and I'll get to how in a bit) that meditation is nothing but mindfulness, being present in whatever you are doing. While eating, be present in the exercise of eating. While you're in a meeting, be 100% present in the meeting discussion. Do not think about other things. That way, theoretically you can meditate all the time without making it sound like a chore.

However, if you're like me, you will soon realise how awfully distracted our minds are. When we are drinking tea or coffee, we are thinking about something else. When we eat, our minds jump to one thing after another. When we are having a meeting with someone about something, our mind keeps racing to something else. When we go out to have lunch with family or colleagues, we keep checking our phones.

I started reading about this a few months back when I read an article online. I was introduced to an app called Headspace. There are obviously many other apps as well. I was honestly very surprised when I realised how the mind works. I have been following the ten-minute meditation routine every morning for the last many months and I honestly have had many life-changing experiences due to this.

I am still very, very far from being mindful in daily life. However, I can confidently say that I now at least realise the extent of the problem. A simple thing like drinking some water from a glass can be completely different when we do it being 100% present. For someone like me who is on dialysis, even something so simple can make a huge difference. If I am focussing on the water, I feel much more satiated than if I let my mind wander away to something else (which is the default behaviour for most of us).

I was prompted to write this post when I read this article yesterday. The article gives some tips on how to be more mindful:

  • Practice 10 minutes of mindfulness training each day
  • Avoid reading email first thing in the morning
  • Turn off all notifications
  • Stop multitasking
  • Put it on your calendar
I would strongly recommend that you read this article. I have truly experienced some very blissful moments due to being mindful from time to time. You should, too.

Tuesday, February 7, 2017

Book Review: Dialysis - An Unanticipated Journey

I was recommended this book by Dr. P. C. Gupta, who is the vascular surgeon who created my fistula. I hold him in very high regard. He is considered one of the finest vascular surgeons in the country, someone who can literally create a fistula out of nothing! He's known me for quite some time now and told me about this book the last time I went to meet him about some numbness on my fistula arm.

The book is not available in India and I had my brother in the US order it from Amazon. It came to me after a few weeks.

The book is written by David L. Axtmann who was on dialysis for more than thirty years when he wrote the book. He was diagnosed with kidney disease in 1968 when therapies like dialysis and kidney transplants were still in their early stages. Axtmann died in 2004, after about 36 years on dialysis. In the book, he describes his journey with kidney disease and dialysis. These were days when you got dialysis only if you were between 15 and 55 years of age because of the lack of widespread availability of the treatment. In those days, patients were taught to assemble their own dialyzers. There was no blood pump and patients dialyzed for about twelve hours each time. A lot of the patients got dialysis at home.

Axtmann takes us through the turbulent times he faced describing with great detail the various medical and other problems he had while getting treated. What is striking is his desire to continue studying, at first and then working even as he struggled to cope with all the problems dialysis brought with it. Axtmann was lucky to be supported by his wife Marlene throughout the journey. They also had some very good neighbours who stood by them in every hour of crisis.

Apart from being a very inspiring story, the book also gives some very good insights into how healthcare facilities, specifically dialysis were in the 1960s and after in the US. I often wonder why the US has been the birthplace of so much medical innovation. The book gives you some nice details on how dialysis patients were treated, how the quality of life was so important, how doctors valued the patient's will and how they were so completely committed to bettering what was available.

I would recommend this book to anyone who is on dialysis r is caring for dialysis patients. It teaches us a few important lessons. Dialysis definitely need not be the end of life. Despite being on dialysis, we can live fulfilling, productive lives, lives that we were meant to lead had kidney disease not happened.

Saturday, January 28, 2017

My take on the first half of PM Modi's first term

We are about half-way into Prime Minister Narendra Modi's first term in Government. With what was the biggest mandate anyone has been elected with in recent times, he was sworn in as India's Prime Minister in 2014. We are about half way into his first term. I say 'first term', not because I am certain this will not be his only term, but because it well may not be. Given his performance and the terribly bad performance of the opposition, notably the Congress, it would be surprising if he does not get re-elected.

Overall, I think the performance of the government has been good. There have been some very good initiatives in various areas - the economy, foreign relations, fighting corruption etc. Some would argue that a lot of it is more style than substance. However, there have been many genuine achievements. Yes, some have probably not been seen through. Many of the initiatives will take much longer to complete and be judged. Some will be continuous and will not have a defined end date.

I am, what people call 'right-of-centre' in my thinking. This probably makes me slightly biased in favour of Modi than against him. However, I think I am very balanced in my assessment of the man. I have written a number of blog posts on what he did wrong and many blog posts on what he did right.

I am too naive to see behind the scenes (if there was anything like that) the actual reason for demonetisation. I remember listening to the speech on November 8th and feeling that it was a master stroke against corruption and black money. A lot has been written about the poor implementation and even hidden agendas. I really don't have an opinion on this.

What rankles me still is that the man was responsible for the 2002 riots. I was reminded yet again about the horrors of Gujarat at that time when I happened to see a part of 'Schindler's List' playing a few days back on television on the occasion of Holocaust Remembrance Day. The terror in the eyes of the Jews being massacred by the Nazis was gut-wrenching to say the least. Well, yes, the comparison is too far-fetched. 6 million Jews were killed whereas about a thousand Muslims and Hindus together were killed in 2002. To me, what is similar is the feeling of being victimised by the state for being born in a particular religion.

Modi will never be forgiven by the families of those that were slaughtered in those horrible riots. To those who say that the Congress did the same with the Sikhs, I agree with them entirely. We cannot justify one wrong by citing another wrong. Both the actions were completely wrong. Both the leaders at the time must be blamed.

So, while Modi can be praised for the good he does, he must also be blamed for his wrongs. We cannot justify one by the other.

Most people of India apart from the Muslims, I believe, have moved on. For the others, he will always remind them of 2002. Fair enough. At the end of the day, if an election is held today, he will win hands down. That's the way democracy works. We must accept it and also move on.

Thursday, January 19, 2017

My address to the United Nations opening of the NGO Committee for Rare Diseases

I spoke (via video) at the United Nations opening of the NGO Committee of Rare Diseases recently. The committee aims to address issues pertaining to rare disease patients across the globe.

I spoke about the issues of access to drugs in developing countries. I also said that the work of the committee can help patients from countries like India. Here, patients did not have access to drugs that can cure them even though the drugs were available elsewhere in the world.

This is a picture from the event.