Sunday, March 20, 2016

Fifth year of dialysis

So, I'm now in my fifth year of dialysis, my third year on overnight dialysis.  What has changed in these years?

1. I finally got used to night dialysis. The main challenge was getting to sleep with the noise of the dialysis machine (the machine can be very loud, these are really very old machines, not the fancy Japanese ones I saw in Tokyo and Kyoto). The other major challenge was keeping my shunt arm immobile for eight hours. I solved the sleeping problem by exhausting myself with work on the day of dialysis---I get up early and work non-stop to the point that I can't go on any more after 6PM, so that falling asleep by 9:30PM really is no problem any more. This works on most days. The shunt arm problem I solved by placing my arm on a cushion; the contact with the cushion provides enough of a cue to my brain to keep it stationary even if I am asleep. The brain is an amazing machine that can be trained to do virtually anything.

2. I have become really good at inserting my own needles. Gone are the days of failed punctures and fountains of blood. I can always get the needles in with no or almost no blood. I still occasionally mess up, but this seems to be within the bounds of normal error. My last serious error was about a year ago, when I went right through the shunt, but I have learnt to change the angle of the needle when I'm going in.

3. The skin on the shunt is getting weak from repeated puncturing. There are parts of the shunt where I cannot puncture any more or else I will bleed all night. The skin can't take any more assaults of the needle. So I have to creatively enter the shunt from the side, a bit of a challenge that I sometimes leave to the nurse.

4. Perhaps because I'm getting older, it takes much more work to retain muscular mass and fitness levels. If I don't exercise for a week, it feels as if I lost the last six months' gains instantly. This is an area that needs significantly more effort from me. I spent maybe four or five sessions a weeks, 1-1.5 hours each, exercising; once or twice a week, these sessions involve weights. Each session has about 40 minutes of core exercises (I spend most of my energy on maintaining core strength because I had a hernia operation in 2010 and never, ever want a repeat of that experience). The positive outcome of all this effort is that at least I don't have the typical potato-with-matchsticks-for-legs-and-arms look of a German professor. But I am definitely nowhere near the fitness levels when I was at my peak in my transplant days.  I am currently working with the Sports medical center at the University of Potsdam to build up an exercise program that will help me build up stamina. My goal is to get to 1.5 hours six days a week. Another measurable yardstick I set for myself is being able to do 250 pushups in multiple sets but in one exercise session. Currently I am at 150.  I will need to be very fit if I decide to get a transplant, the operation is huge stressor for the heart, and I anyway need to be very fit in order to have a decent chance of surviving till retirement. So I'm very motivated to fix the fitness problem.  One thing I don't know is: how fit can a dialysis patient get? Is there an upper limiting bound? It would be cool if I could talk to a doctor about that, but unfortunately such a doctor would have to know both about exercise science and dialysis, and such people apparently do not exist in my immediate circle.

So, now I just need to hunker down and keep going like this for another five years till I get high up enough on the transplant list. I'll be 57 years old by then, and will have to decide then whether to get a transplant.  If I get a transplant at 57 and it survives another 10 years, I could even spend the last 10 years of my working life as a nearly normal person.

In closing, I must say that I am extremely lucky to be living in Germany, and in Berlin in particular. I've seen dialysis establishments all over western Europe, US, and Japan. Almost none of them provide night dialysis; it's a huge luxury and allows me to live an almost normal life. Germany is really the only country I know (maybe apart from Japan) that really found the right balance between patient needs, sustainable medical cost, and quality of care.  A fantastic achievement.

Monday, February 15, 2016

When breath becomes air by Paul Kalanithi

This book was a very difficult one for me to read, but I could not put it down once I started. Kalanithi was a neurosurgeon who died in his late 30s from lung cancer. This book is a record of his illness. This book is not for the faint of heart, and if you have a chronic illness yourself, you should be ready to face your own fears if you read this book.

Instead of talking about the book, I will just quote some of the passages from the book that gave me pause.

I began to realize that coming in such close contact with my own mortality had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn't know when. After the diagnosis, I knew that someday I would die, but I didn't know when. But now I knew it acutely. The problem wasn't really a scientific one. The fact of death is unsettling. Yet there is no other way to live.

"Leave some room for a statistically improbable but still plausible outcome---a survival just above the measured 95 percent confidence interval". Is that what hope was? ... It occurred to me that my relationship with statistics changed as soon as I became one.... Getting too deeply into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability. 

That morning, I made a decision: I would push myself to return to the OR. Why? Because I could. Because that's who I was. Because I would have to learn to live in a different way, seeing death as an imposing itinerant visitor but knowing that even if I'm dying, until I actually die, I am still living. 

The tricky part of illness is that, as you go through it, your values are constantly changing. You try to figure out what matters to you, and then you keep figuring it out. It felt like someone had taken away my credit card and I having to learn how to budget. 

The most obvious might be an impulse to frantic activity: to "live life to the fullest,"  to travel, to dine, to achieve a host of neglected ambitions. Part of the cruelty of cancer, though, is not only that it limits your time; it also limits your energy, vastly reducing the amount you can squeeze into a day. It is a tired hare who now races. And even if I had the energy, I prefer a more tortoiselike approach. I plod, I ponder. Some days, I simply persist.

His wife reports that Kalanithi made a huge effort to write this book as he slowly deteriorated.  This is the most important work I have read in many years. Everyone should read it. Healthy people who take their lives for granted, and sick people who are trying to find direction in their truncated lives.

Saturday, December 5, 2015

Last photograph with my parents

Here is the last photograph of my parents and me together, 2004. My father, who was a physicist at the National Physical Laboratory, died last year. He just turned over in bed, and then he was gone. And my mother died today. Her apartment, where she lived alone after Dad died, caught fire while she was sleeping and she died of smoke inhalation. Her body was found in the bathroom, with one hand on a bucket. She was 83, and part way through a book she was writing.

Here is a news announcement about Mom. There was also a notice about her cremation. And finally, prayers were held at the Arya Samaj temple in Delhi on 13 Dec 2015.

And here is the last photo of all the five sisters (Mom was the oldest) together. This was taken at a family reunion this year:

This poem by Larkin comes back to me.

Aubade (Philip Larkin)

I work all day, and get half-drunk at night. 
Waking at four to soundless dark, I stare. 
In time the curtain-edges will grow light. 
Till then I see what’s really always there: 
Unresting death, a whole day nearer now, 
Making all thought impossible but how 
And where and when I shall myself die. 
Arid interrogation: yet the dread 
Of dying, and being dead, 
Flashes afresh to hold and horrify. 

The mind blanks at the glare. Not in remorse 
—The good not done, the love not given, time 
Torn off unused—nor wretchedly because 
An only life can take so long to climb 
Clear of its wrong beginnings, and may never; 
But at the total emptiness for ever, 
The sure extinction that we travel to 
And shall be lost in always. Not to be here, 
Not to be anywhere, 
And soon; nothing more terrible, nothing more true. 

This is a special way of being afraid 
No trick dispels. Religion used to try, 
That vast moth-eaten musical brocade 
Created to pretend we never die, 
And specious stuff that says No rational being 
Can fear a thing it will not feel, not seeing 
That this is what we fear—no sight, no sound, 
No touch or taste or smell, nothing to think with, 
Nothing to love or link with, 
The anaesthetic from which none come round. 

And so it stays just on the edge of vision, 
A small unfocused blur, a standing chill 
That slows each impulse down to indecision. 
Most things may never happen: this one will, 
And realisation of it rages out 
In furnace-fear when we are caught without 
People or drink. Courage is no good: 
It means not scaring others. Being brave 
Lets no one off the grave. 
Death is no different whined at than withstood. 

Slowly light strengthens, and the room takes shape. 
It stands plain as a wardrobe, what we know, 
Have always known, know that we can’t escape, 
Yet can’t accept. One side will have to go. 
Meanwhile telephones crouch, getting ready to ring 
In locked-up offices, and all the uncaring 
Intricate rented world begins to rouse. 
The sky is white as clay, with no sun. 
Work has to be done. 
Postmen like doctors go from house to house

Friday, July 10, 2015

Review of Midnight's Furies by Nisid Hajari

Anyone growing up in India during the 1960s and 1970s has probably heard the horrifying stories of the events surrounding the 1947 India-Pakistan partition. The most scary ones I remember are about trains packed with dead bodies coming into Lahore (dead Muslims) and into India (dead Hindus). My own parents lived in Lahore, or in the part of Punjab that is now in Pakistan; they were lucky to avoid the massacre---they used to spend their summer in Shimla, and had moved en masse in June, so that when August 1947 came around, they escaped the killings. They left their Lahore home in June, for the summer holidays in Shimla, and never went back---the Pakistanis who took over the home kept their clothes and possessions in a trunk for them to retrieve decades later. My mother's father, Shyamlal Meini, an industrialist, made many dangerous car trips between Shimla and the to-be-formed Pakistan during the summer of 1947 to move his money out of there to India.

And then there were the wars with Pakistan. I remember when we were instructed to paste brown paper on all glass windows to block the lights out during nighttime, in case Pakistani bombers attacked Delhi. I think I was seven or so, and although it was fun to stick rectangles of brown paper on all the windows, it didn't really sink in what a bombing would do. My father (he died in September last year), was a physicist at the National Physical Laboratory in Delhi, and was also involved in R&D related to the war, although I don't know what exactly it was about.

The Khalistan movement and the terror the Sikhs unleashed in India is another salient memory from my time in India.  A turning point came when Indira Gandhi was assassinated by her Sikh bodyguard, and the population of Delhi started to systematically kill Sikhs and their families in retaliation; Sikhs were strung up to hang on a bridge right on the street outside our apartment. It seems like the only response we have in India, despite our supposed 5000 or whatever years of culture, to injustice and brutality is more brutality. That's how the partition played out, and that's how 1984 played out. And there have been more such killings since then. The hatred seems to be passed on from one generation to the next; I recently met a childhood friend who invoked the partition and what the Muslims did to his family to justify his feelings about the fate all Muslims should experience.

The partition seems to control our attitudes and beliefs even today. A lot of Punjabis moved into Delhi, replacing the refined and restrained Muslim culture with a new, brash, and VERY LOUD, aggressive Punjabi style of doing things. At least until I was in India in the early and mid 1990s, it was fashionable to make fun of Punjabis for their brashness and aggressiveness. I had Jain and Muslim friends who openly mocked Punjabis in front of me, and mocked me for being Punjabi (and yes, I am as brash and aggressive as they come---and believe me, I am holding back). Using words in Hindi that are derived from Punjabi is a sure way to elicit derision from one of these groups. Punjabis were and maybe still are considered fair game in Delhi, by non-Punjabis of course.  The Hindi language changed after the Punjabis arrived in Delhi; and purists from central India routinely make fun of the way Punjabis like me pronounce certain words like "read" (paRa, not the correct paRha), occasionally introduce tones and odd accenting patterns into Hindi, and use the ergative case marking incorrectly, almost certainly a borrowing from Punjabi. Sneering at groups other than one's own is an Indian speciality, and the arrival of the Punjabis in Delhi provided a lot of free mocking-value for the other groups who thought themselves superior to these barbarians. It didn't help that the Punjabis ended up dominating many aspects of the economy in Delhi. Of course, the Punjabis sneer at others too, for being Merchant caste money-grubbers and weak-minded ditherers, among other things. So nobody really is blameless in this culture of defining one's cultural "team".

This book, Midnight's Furies, by Nisid Hajari, is an astonishing chronicle of the events that led to the partition:

Fantastically fast paced and well written, I had a very hard time putting this book down to work during the day. The main thing I learnt, which I didn't know much about until now, was the sheer incompetence and short-sightedness of all parties involved in the partition: Nehru, Gandhi, Jinnah, the entire British imperial machinery, Churchill (Hindus: "a beastly people with a beastly religion"). Jinnah and Nehru are both blamed in this book for making the situation worse and for precipitating the partition. I can see how that might happen; even if they had been more accommodating with each other, and just mildly rational human beings, they had no experience in nation-building. I can imagine that anyone who has to deal with a situation like this is going to make mistakes.  What surprised me was how badly the British---who have some experience in nation-building from scratch, especially other people's nations---handled the hand-over of India to the Indians. I guess the British didn't even see the Indians as particularly human ("a beastly people with a beastly religion"), so it didn't really matter to them either way whether they lived or died.  The big lesson I learnt from this book was that leadership matters. If you are leading the way, whether it's something big or small, you have to be bigger than yourself. You have to put aside your sense of self-importance, and be willing to recognize that you are sometimes wrong, and then you have to correct course. A lot of what happened---except for the criminal British incompetence---was because of people not being willing to back down and conceding a point in the face of overwhelming evidence. Rather reminiscent of the way we do science in most fields.

The story that Hajari tells was carefully omitted from my history textbooks in school, or at least the details were whitewashed. Of course everyone knew about the partition; the machinations that led to it were kept pretty obscure in the textbooks I had to read. If instead of making us memorize the names, special characteristics, and dates of creation of various temples, had the school history books just told this story, my history lessons in school would have been much more useful. In many ways, this book reminded me of the classic Lies my Teacher Told me: Everything your American History Textbook Got Wrong:

The only thing that disappointed me about Nisid Hajari is his enthusiastic support for that plagiarist, Fareed Zakaria. South Asians love to plagiarize, and so Zakaria's plagiarism in itself is not surprising or remarkable. But I am very uncomfortable with Hajari's association with Zakaria.

Saturday, July 4, 2015

Dialysis: The attitude of nurses

I'm convinced that at least this one nurse in my dialysis center has only contempt for me. I used to encounter the attitude in India that anyone with an illness was considered to be to blame for having that illness---probably the result of some vaguely formulated karmic theory that Indians find so attractive. I sometimes (very rarely) get the same impression in Germany too. There is one nurse in my dialysis center who is assigned to the night shift quite rarely, but when she is there and is assigned to connecting me up, my night is sure to be hell.

First, she gets all the parameter settings wrong; when I correct her, she says I don't trust her. Damn right! You are getting all the numbers wrong. If the heparin stop time is not set correctly, I can be sitting there for one hour waiting for the bleeding to stop, after the needles are removed. It matters whether the parameters are exactly right. The biggest problem I have with this nurse is that she consistently leaves air bubbles in the heparin feed line, which leads to non-stop alarms all night. After this happened three times with her, I have become firm with her about removing those air bubbles. Every time she mutters about my not having any faith in her.

So I've managed to piss this lady off; I can understand that. After all, I am essentially questioning her competence by checking everything she does.  It doesn't matter that she *is* incompetent.

But the thing I don't understand is that she takes out her frustration with me by taking revenge: she slams the door shut loudly every time she comes in to check during the night whether everything is in order, waking me up each time. Why would she do that? I can understand that she's pissed off with me because I keep correcting her mistakes, but what's the logic of waking me up throughout the night and ruining my next day? I guess it must be satisfying for her to "get back" at me.  But it speaks to an attitude of contempt for the patient.

There was an interesting case recently in the US of a patient accidentally recording what their doctors said while he was getting a procedure under anaesthesia. You can read all about it here:

It's very hard for me to understand why medical  personnel ever think it's OK look down on their patients and to treat them like they are worth nothing.

Friday, April 10, 2015

The high drama of self-cannulation

I've been inserting my own dialysis needles into my shunt for more than two years now. One would think I'm an expert by now. But each time it's a challenge. You have to push the needle past the skin into the shunt, but not too far in, or else you will go right through the lower wall of the shunt and into the muscle below it. At a certain point after insertion, you have to change angle so you can move along the inside of the shunt, and not hit the wall at the other end. All this is one smooth movement. In and turn.

I have had a nearly 100% success rate so far over the last two years. The first six months were hell, bloodbath after bloodbath, but I got good at it and could get it in nearly pain-free (unless I hit a nerve, but I gradually learned to avoid the bad spots).

But on Monday this week I made a huge blunder. I pushed the needle in just a little too hard, and it ended up deeply embedded into the muscle underneath. It doesn't hurt, but you hear a distinctive pop, which is the sound of the needle exiting the shunt from the other side deep inside.

At this point I lost my nerve; do I pull out the needle, and if so, how will I know that I'm out? Could I end up pulling it out entirely if I pulled too hard, and have a bloodbath on my hands? The nurse was standing by luckily, and he took over. It turns out you hear a distinctive pop when the needle exits the muscle on retraction. So the nurse expertly pulled it out just enough to get the needle correctly positioned and all was well...till the next morning. Now that a hole had opened up in the shunt, blood leaked out slowly all night into the tissue underneath, with the result that I developed a huge swelling around the shunt, so much so that I could not even see my shunt any more (at least not the part where I had done my mis-insertion). The visual impression of my shunt half disappearing really freaked me out.  It's the one thing that's keeping me alive and seeing it "gone" amid the swelling somehow really shocked me.

So much so that I didn't really have the nerve to insert my needles again on Wednesday, I had the nurse insert it. There wasn't much space left on my shunt to insert the needles, so the nurse stuck it into a fresh spot that had never been needled before, high up on my shunt. Very very painful! The skin on the upper part of the shunt was fresh and never punctured, so it had no hardened skin.  To make matters worse, I think the nurse inadvertently hit a nerve and so I was in pain all night. Amazingly, I managed to go to sleep, but I dreamt of being tortured by someone or the other.

Today's Friday, my last dialysis for the week happens tonight. Am I going to go back to inserting my own needles? We will see how much nerve I can muster. I must say, I feel like a total failure---so much for being a third degree black belt in Iaido! A needle insertion is very much like classical Japanese sword technique: you go in straight, with the sharp end of the needle, and you have to make a quick change of angle to make a sharp clean cut with the edge of the needle to enter the shunt. If you do this just right, there is not a trace of blood. I should be really, really good at this, I've been practising this movement for decades! I guess the problem is that there is so little room for error, it's happening at millimeter precision.

Dialysis is usually OK for me, I can live with it and it doesn't intrude into my life much any more, now that I do it overnight. But these incidents really mess up my life.