Saturday, December 30, 2017

A dream comes true: NephroPlus arrives in Goa

When we started NephroPlus, I always dreamt that we would have a dialysis centre one day in Goa. I had gone to Goa a few times after getting on to Home hemo and got dialysis in different centres there. I was not at all happy with most of them. I had also read about a dialysis centre in Australia that overlooked the Great Barrier Reef and had glass walls from ceiling to floor where the dialysis stations faced the ocean. I could not let go of that image and thought Goa would be an ideal place to set up such a centre in India. 

Eight years after starting NephroPlus, that dream is one step closer to reality. We still do not have a centre overlooking the ocean but have setup our first centre in Goa. The centre is inside Victor Hospital in Margao. I had undergone dialysis in this centre on one of my trips to Goa much before NephroPlus was born. I visited the new centre during my recent Goa trip. What a beautiful centre this has turned out to be!

Here is a video of me speaking during my visit to the centre:

I have always believed in the magic of taking a holiday for those on dialysis. A break from the routine can be welcome for anyone; more so if you’re on dialysis. That is why we were all excited about the Holiday Dialysis program in the company. Till date, several patients from all over the country and indeed the world over have utilised this program to enjoy a relaxing vacation while not having to worry about the quality of dialysis they would get while away from their base location. 

With comfortable weather, a host of fun things to do and excellent beaches, Goa is the ideal getaway destination for dialysis patients. Merely driving through sleepy Goan towns with lush greenery all around can be such a pleasure.

So, I would encourage all dialysis patients looking for a holiday to consider Goa the next time they want a break.

You can email or call +91-40-6000-7200 to find out more.

Friday, December 29, 2017

Please change the spelling of the word ‘opportunity’, someone

In India, the word ‘opportunity’ is probably the most mispronounced English word. Every second person I hear says it like it is spelt. The second syllable is pronounced by them to rhyme with the first. ‘Or’ is such a common word that when these two letters appear in the word ‘opportunity’, they pronounce it like they would pronounce ‘or’. How can you blame them?

English pronunciation has been the topic of many essays. The lack of consistency in pronouncing similarly spelt words has flummoxed many. This is also the topic of a legendary dialogue of the great Indian actor Amitabh Bachchan in the film ‘Namak Halal’.

Wouldn’t English be much simpler if it were pronounced the way it was written or written the way it was pronounced? It would save so many people their blushes. I don’t claim to have perfect pronunciation myself. I have been caught on the wrong foot many times with some words. Yet, my mistakes are most often with less common words.

English would be much simpler, agreed. But would it be as beautiful? I doubt it. The beauty of the language lies in its idiosyncrasies. It deserves a little effort to learn. It takes some practice as well.

For the time being however, those who pronounce opportunity as ‘opp - or - tunity’ would do well to use ‘opp - ur - tunity’. But is that good enough? What’s to prevent someone from pronouncing the ‘ur’ as ‘oor’ or worse?

I guess some things are best left untouched. Robert Benchley would agree, “Drawing on my fine command of the English language, I said nothing.”

Friday, December 15, 2017

Off to Goa

I’m off to Goa today. I will be there until Sunday. I am meeting my college friends there. The last time we met, we had gone to stay at Oceanside in California, US. The previous time was the Alaskan Cruise  I really enjoy the time I spend with them. These are friendships that have stood the test of time. We love to become the kids we were during our college days and do stuff that we enjoyed back then.

Goa is a great place for a holiday for those on dialysis. It is of course, a great place to relax and also has some very good dialysis centres (NephroPlus recently started a centre there).

I have been to Goa so many times now that my brother calls it my second home. Quite ironic considering the fact that half my blood is Goan.

As it turns out though, given a choice I would rather go off to a place like Rishikesh or Coonoor  I honestly am not much of a beach guy. I also absolutely abhor the salty sea water and would much prefer rafting in the Ganga. But Goa is only a flight away and is considered the ultimate party destination in the country so I keep ending up there most of the time.

Looking forward to the trip!

keep ending up there most of the time.

Wednesday, December 13, 2017

How stopping a Proton Pump Inhibitor changed my life

As I wrote here recently, I was asked to stop a drug, Cintodac (a Proton Pump Inhibitor  because it did not allow another drug I was prescribed, to act. As I mentioned, stopping the drug and being put on a milder alternative that came under the class of H2 receptor blockers reduced my appetite and the fluid weight gain between dialysis sessions.

I have lost almost 7 kg of dry weight since I have stopped Cintodac. What’s more important for me is that my fluid weight gains between sessions are now within human limits. Earlier they used to be in the elephantine range.

Having low fluid weight gains provides a lot of benefits. I am not referring to the obvious clinical benefits such as less stress on the heart but of other simpler things. For example, I can now afford to miss dialysis twice a week with ease. I keep changing my number of dialysis sessions per week like nobody’s business. Just recently I had switched to missing two night in a week and blogged about it  But yes, I was back to missing once a week in a few days because the fluid restrictions I had to put myself on were quite onerous. 

Many people could not understand how on earth I could drink so much fluid? Well, neither could I. But now, it all falls in place. It was due to Cintodac. I remember reading on a dialysis blog that if you ate less, you could drink more. The Cintodac increased my appetite so much that I put on a lot of fluid weight due to eating too much. So, not only did I put on dry weight, I also put on a lot of fluid weight.

I was so embarrassed by my fluid weight gain that whenever I was asked what my average fluid weight gain between sessions was, I would always say 2 kgs or some such ridiculously low figure. And imagine my horror when people would be surprised that I even put on that much. I would squirm in my seat thinking about how they would have reacted had I told them my actual average.

But thankfully, that’s more or less settled. Blame it on Cintodac and not on non-compliance. My course of medication completes in about a month. At this point, I do not plan to resume Cintodac.

Saturday, December 9, 2017

Why home hemodialysis?

Many people ask me why I choose to do home hemodialysis. To me the answer is quite simple. The main reason I do home hemodialysis is that it makes it easy for me to do daily nocturnal dialysis. This begs the question, why daily nocturnal?

I’m going to let you into a secret here. 

Many people do daily nocturnal hemodialysis because they say the outcomes rival those of a deceased donor transplant (cadaver transplant). They say the risks of organ stunning, damage to the heart and many other co-morbidities associated with long term kidney failure (and hence dialysis) are much lower with daily nocturnal hemodialysis than the regular thrice a week modality.

Honestly, for me all that does not matter much. I do daily nocturnal only for one reason - no diet and fluid restrictions. I eat and drink pretty much what I want and how much I want. I don’t stop to think whether something is high potassium or high phosphorous. I don’t stop to think how much I have drunk today before sipping on a cola. 

This freedom to eat and drink without any restriction is the main reason I do home hemo. 

That said, there are other things that are good about this modality:

- Flexibility to do dialysis when you want to. You can skip when you choose not to do dialysis. You can choose to do dialysis if you feel like it.

- Flexibility on the time of dialysis. I got late at a party? No problem. Dialysis will begin late and will be only 6 hours instead of the 7 1/2. 

- Full control over dialysis parameters. I can play around with the dialysate temperature and sodium level based on how I feel and what I have read helps.

All this is good. But the main reason is no diet and fluid restrictions. Period. 

Tuesday, November 28, 2017

Who’s right about the economy - the pro Modi or the anti Modi camps?

I have never read The Economic Times. I can’t make sense of most of it. So, when I hear diametrically opposite viewpoints about how the Indian economy is doing under Prime Minister Narendra Modi, I am thoroughly confused.

On the one hand you have people claiming that the Indian economy is in dire straits. On the other hand, you have reputed agencies such as Moody’s who have upgraded India’s rating recently.

The irony is that both these parties say their conclusion is due to things like demonetisation and GST. How can both use the same two policies of the government and arrive at such contradicting results?

I have noticed one thing after Modi came to power. People rarely change their perception about the man. Take any decision of the government. Take any policy of his government. People who support him will find a hundred reasons to support it whereas people against him will find a hundred reasons to criticise it. It all depends which side of the fence you are on.

There is no such thing as objectivity here. You either love the man or hate him. Forever. Whatever the case may be.

In my adult years, I have never seen the country so polarised as it is today when it comes to the Prime Minister. Some people compare him to Indira Gandhi. I was a kid when she died so I cannot make the same comparison. The lines of division are so complete, so thick that whatever happens, people will not change their views about him, reason be damned.

I am still at a loss on how the country’s economy is faring. For every gloomy chart put out by the haters, there’s a cheerful chart that is thrust in your face by the bhakts. For every upward statistic put out by the bhakts, there is a downward statistic quoted by the haters.

So, how does a person like me decide on how the government has done on the economy?

Sunday, November 26, 2017

Have those protesting against the film ‘Padmavati’ seen it?

The protests against Sanjay Leela Bhansali’s film Padmavati have reached sickening heights. Some have called for the beheading of Bhansali while others have threatened to chop off Deepika Padukone’s nose. A state chief of the ruling Bharatiya Janata Party has openly announced an additional reward for Deepika’s nose.

I have only one simple question for the protesters. Let us keep aside the aspect around freedom of speech and expression for a minute. Let us assume that we are a society where one cannot speak out against anyone or anything. Let us assume that we are still under Indira Gandhi’s emergency. Now, have the protesters and the thugs demanding Bhansali’s head and Deepika’s nose seen the film? Do they know exactly what they’re protesting against? Are they certain that the Queen Padmini is shown to be attracted to Alauddin Khilji in the film?

The fact of the matter is that no one who is protesting has actually seen the film.

Bhansali has shown the film to certain sections of the mediaJustice Arnab Goswami was one among them. Here are his words about the film: “...every scene of this film is a cinematic tribute to Rani Padmavati. .... when the movie will be released, Karni Sena will appear like idiots.”

So, what is this fuss all about? Why are state governments, one after another, banning the film? Why has the producer been forced to delay the film to next year? Is it going to be released when certain elections have been completed? See a pattern here?

Have we as a society, degenerated so much that we get carried away by mere rumours and speculation? Why are the BJP ministers silent? Why are some of them tacitly supporting these villains?

Coming back to the issue of freedom of speech, the constitution of India guarantees every individual to speak his or her mind provided this does not incite violence or cause a law and order problem. As a society, we should have been mature enough to hear out different points of view and express our own. If you don’t like a film, don’t watch it. If you don’t like a book, don’t read it. It is as simple as that. Nothing should be banned because a certain section of the population does not like it.

We, as a nation need to grow up. The government needs to step up and act against elements who incite violence. We don’t want mini-Gujarats-2002 all over the country.

Friday, November 17, 2017

130/80 is the new high

A few months before beginning home hemodialysis, I was diagnosed with Left Ventricular Hypertrophy (LVH), a condition that is associated with long term kidney failure. I was put on some medication to try and control the problem. Gradually my blood pressure started reducing. At one point I used to be at pressures of around 90/60 to 100/70. During my next visit to the cardiologist, I asked him what is a good blood pressure? Was 90/60 too low?

“Lower the better” was his response. He said as long as I did not have symptoms of hypotension like feeling dizzy, the lower the pressure the better it was for my heart.

New research released recently has found that a blood pressure of 130/80 or above is dangerous for the human body. The earlier guideline had pegged this at 140/90. This would bring a lot of people into the ‘hypertensives’ bucket. The important thing to note, as the co-chairman of the group that released this report says is, “The risk hasn't changed. What's changed is our recognition of the risk.”

People with high blood pressure are known to be at risk for “cardiovascular disease, strokes, severe kidney disease and several other problems” that can kill them. Not everyone with this blood pressure needs to be put on medication. Many people who are diagnosed in early stages of the condition can correct it simply with “lifestyle changes such as losing weight, improving their diet, getting more exercise, consuming less alcohol and sodium and lowering stress”.

It is important to check your blood pressure from time to time. Early diagnosis, like in almost every other condition, is the key. 

It is sad that despite knowing that lifestyle changes can correct this problem, people all around me will still live in denial, refusing to acknowledge that they have a problem, refusing to change their lives and ridiculing the people who actually do.

People give me examples of their uncle who drank, smoked, never exercised and ate all the unhealthy food you could ever imagine and yet lived to a ripe old age of 90. What they do not realise, very sadly for them, is that for every such uncle, there are a hundred other people who died early, in the prime of their lives just because they did not take care of themselves.

I read this important advice somewhere: “It is ok to lie to your parents, to your children, to your boss, to your spouse, heck, it is ok to even lie to your God. But one thing it is not ok to do is to lie to yourself.” These people are lying to themselves. It is going to be a very expensive lie.

Wednesday, November 8, 2017

Overusing the exclamation point!!!!

So many people get this so horribly wrong. Especially on social media, the exclamation point is probably the most abused punctuation. I have friends and colleagues who overuse exclamations like nobody’s business. I probably overuse it a little myself. In fact, earlier posts on this very blog have probably one exclamation too many.

I read somewhere that for most people, one exclamation per month of writing is all that is actually needed if used the right way. I know people who use an average of one per sentence. 

Exclamation points were originally called the “note of admiration.” They are still, to this day, used to express excitement. They are also used to express surprise, astonishment, or any other such strong emotion. Any exclamatory sentence can be properly followed by an exclamation mark, to add additional emphasis.”

Simple enough?

With the increasing use of social media to express opinions on every single issue these days, people use exclamation points even when completely unnecessary. Good writing should convey the same excitement with an appropriate choice of words rather than rely on punctuation to express strong emotion.

The most abhorrent of all exclamation point abuses is the use of multiple exclamation points. I know people who use five to six after wishing anyone about anything. Sample this:

Happy Birthday XYZ!!!!!!

It’s as if he was even more excited about XYZ’s birthday than his own.

I think it’s high time the exploitation of this punctuation be made a worldwide crime and exemplary action be taken against the offenders.

Sunday, November 5, 2017

Drug interactions

I was put on a new medication recently. The trouble with this medication is that it needs a slightly acidic medium in the body to act effectively. So, I was asked to stop an antacid in the ‘Proton Pump Inhibitor’ (PPI) class which I have been taking for a long time now. I was told to take another milder antacid and take a syrup for times when the symptoms were bad. 

Within a few days, my appetite has gone down dramatically. I can barely eat a third of what I used to. Due to this, I have lost about 3 kgs in less than three weeks!

I am not sure if my appetite with the PPI was unnaturally high but I do remember being hungry all the time. I remember my nephrologist saying that a very strong antacid will not allow the minerals and vitamins to be absorbed by the body (or something like that). I tried looking this up on the internet. I did not find any mention of antacids increasing the appetite. 

For now though, I am unable to have a full pizza or more than a couple of idlis which is disastrous news! I hope I will not need to take this medicine for a long time - the doctor says a few more weeks. So, there’s still hope.

There’s a silver lining to this though - the weight loss. With no effort, I have lost 3 kgs! I don’t feel like I’ve eaten less. I am not hungry. My fluid weight gain between sessions has also gone down. Yesterday after a dialysis gap of a day, I had only 3.1 kgs of fluid on me!

Thursday, October 26, 2017

Let’s not force people to wear patriotism on their sleeve

In an outstanding example of judicial overreach, the honourable Supreme Court passed a judgement a few months back that the national anthem must be played at the beginning of screening in all movie halls. Ever since then, during our Sunday evening picture routine, my parents and I have been standing for the national anthem. Just when we would have settled down in our seats with pop corn and a cool drink, suddenly the screen would say, “Please stand for the national anthem.” My father, forever the willing patriot would happily stand up, my mother would also stand up, not with that much enthusiasm and I would have a tough time getting up from the seat due to my knee problem with a curse muttered under my breath to the honourable Supreme Court.

When you force someone to do something, they develop an aversion to it. Why do we need such symbolic gestures to display our patriotism? Why do we need these forced shows of proving our love for the motherland? 

Thankfully, the honourable Supreme Court looks like it is going to reverse that decision. In remarks made a couple of days back, it questioned the concept and said that the words “national anthem should be played” could be changed to “national anthem may be played”. 

I so wish that the time spent by the honourable court on this silly, trivial issue could have been spent in dealing with the thousands of more serious cases pending before it.

Just 3 days to go for the Indian Dialysis Olympiad!

The second edition of the Indian Dialysis Olympiad is this Sunday in Delhi. If you’re on dialysis and in Delhi or close by, you should definitely attend. Even if you are not close by, you should try to attend as are many people from around the country. It will be an experience you will never forget.

Why attend the Olympiad? Well, people in India have a bad misconception that when you get onto dialysis, life as you know it comes to an end. Your life will be restricted to the dialysis centre and your home (bed specifically!). Nothing could be farther from the truth. People on dialysis lead active lives. Many dialysis patients trek, swim, work and lead almost normal lives.

You can see this for yourself on Sunday where people on dialysis will participate in various events like running, cycling, basketball, table tennis, cricket etc. On Sunday we expect about 400-500 patients say to the world, “I can!”

Come to participate if you’re on dialysis. Come to cheer them if you are not. 

Thursday, October 19, 2017

Why I’m not excited about tea houses anymore?

I like tea. Second Flush, Single Estate, Darjeeling Black please. I relish my three big cups every day, made with precision, measuring out the leaves in specially made spoons, boiling water in my own kettle and then steeping it for just the right time by using Siri on my iPhone. I absolutely hate it when people disturb me when I am sipping my tea. If you want to be my friend, don’t ever disturb me when I’m having tea!

So, when I saw Tea Trails open in Hyderabad, I was excited. I thought it would be a great place to hang out. I went there a few times. I was honestly disappointed. I don’t have any control over the types of leaves, the steeping time or the temperature. The result was some insipid cups of a drink that was supposed to be tea.

I tried a wide variety.The only two teas I liked were the Kashmiri Qahwah and the Second Flush Darjeeling (for obvious reasons). But it wasn’t close to what I had hoped it would be.

Now, I really don’t think it is the fault of Tea Trails. They were probably doing their job well. It’s just that I am too fussy about my tea.

Wednesday, October 11, 2017

What does happiness actually mean?

All of us want to be happy. What does it mean to be truly happy? What does it take to be truly happy?

I read this excellent article that talks about the work in this area by Emily Esfahani Smith. She has also done a TED Talk on the same topic. 

This article made a lot of sense to me when I look back upon my life and see the effect of the four factors that she talks about - belonging, transcendence, purpose and story telling.

Monday, October 9, 2017

Dialysis Olympiad Bike Expedition - Doing more with Dialysis kicks off today

We at NephroPlus are organising the second edition of the Dialysis Olympiad on October 29th in Delhi. The event is going to be held at the Thyagaraj Sports Complex. After the stupendous success of this event in 2015 at Hyderabad, the event moves to the Indian capital and enables a lot more patients from the North of the country to participate as well.

As a curtain raiser for the event, a one-of-its-kind bike expedition is being kicked off today from Jalandhar, Punjab where a number of people on dialysis will be participating in a 400 km bike relay to Delhi over four days. This expedition will halt at various towns and cities on the way.

This bike expedition and the Olympiad are in line with our overarching vision to enable those on dialysis to lead a normal life. We strongly believe that dialysis need not prevent you from living a full life. People on dialysis all over the world do things that otherwise healthy people do like work, travel, exercise and have fun. In India however, there is a huge misconception that dialysis is like a death sentence and people are confined to the bed or have to lead sedentary lives. 

Events like this help tremendously to change this thinking and get the patient, the family and indeed, the public at large to understand that dialysis need not stop you from doing what you would like to do. People on dialysis can and should lead normal lives!

Sunday, October 8, 2017

After twenty years, a new home

My parents, brother and I moved into our own house a little more than twenty years ago. We had built that house from scratch. That house has seen many major events in our lives. My graduation, my diagnosis with kidney disease, my brother Prasan’s marriage and my brother Karan going abroad. It also saw the birth of Effigent, the sale of Effigent and the birth of NephroPlus.

However, if you looked at how the twin cities of Hyderabad and Secunderabad were changing, you would be naive not to see that all the development is happening on the side of the newer - Hi-tech city. My primary barometer to judge the development of the city is to see where all the new restaurants were opening. Over the last few years, most of the good restaurants have wound up in the older twin cities and moved to the Hi-tech city area.

So, we’ve been thinking of moving to that side of town for a long time now and have been scouring the area for good apartments. Finally we zeroed in on one and here we are - in our new home!

Our apartment is on the 28th floor and the height offers a beautiful view of the city. I love to sip my tea every morning from the balcony that overlooks the city. Here is a picture I took one morning from the balcony:

 I love our new home. Many people ask me why we moved from an independent house to an apartment? The answer is simple. Our old house was too big for just the three of us. It was difficult for us, especially my mother to maintain it well. Added to that was the fact that the area we moved to was developing more rapidly than the old area. Staying in an apartment also offers some other conveniences - amenities such as a swimming pool and a gymnasium in the apartment complex itself, a store and maintenance personnel on call 24X7 etc. All this is just not there in the old house.

We are going to keep the old house for a while until we’re sure we like it here though!

Friday, October 6, 2017

A scare, then a Transesophageal Echocardiogram clears the air

So, my fistula infection has shown no signs of relenting. Even though there is no fever, there is a persistent ooze from the infected puncture site. There is no collection in the area that warrants surgical intervention. Then from where the hell is this oozing?

Protocol demands an echocardiogram to rule out Infective Endocarditis. This is common in dialysis patients. So, I went and got an Echocardiogram done.  It was not without drama. The cardiologist happens to be a senior doctor and he first went through the motions and declared that there was nothing to worry. As I was getting up, he exclaimed, “Just lie down again. I want to check something else.” I lay down and he put the probe on my chest and then a little lower and as if he had found something unusual, said, “What is this?”

For the next 5-7 minutes he put the probe in various positions and at various angles and tried to make sense of something. In the end he said he could see something that looked like ‘vegetation’ - a term for infection but he wasn’t sure and advised getting a Transesophageal Echocardiogram (TEE) or a PET-CT scan to get a better view of the ‘thing’!

I took the report to my Nephrologist and he asked me to meet another cardiologist and get a TEE done. 

The internet can be an amazing source of information. It is impossible to hide anything from someone who has access to the internet. The article I linked to above had a scary statistic - a 65% 1 year mortality of HD patients who got Infective Endocarditis (IE). I started fearing the worst. As I usually do, I started imagining life with IE. I started thinking about a preparing a will, about work, about my parents.
Today was the day of the TEE. I was asked to have a light breakfast before 7 am and no food or water after that. I had what I would call a heavy breakfast at 6:45 am. Believe me, my ‘heavy breakfast’ is very different from what you would call a ‘heavy breakfast’! I wouldn’t have it any other way as I knew my body better than anyone else and there was no way I would be able to withstand ‘no food, no water’ without a heavy breakfast. I took a nap after that and by around 11:30 we were at the hospital. 

After the customary explanation about the procedure and billing for the test, they sprayed some anaesthetic into my throat that numbed the walls. They then inserted a thick tube coated with anaesthetic jelly. The first few moments were very uncomfortable as the tube was pushed down my throat. But once it was in, it wasn’t bad at all. The doctor looked at the images being generated on the screen. After about ten minutes, they concluded that there was no infection!

I was a relieved man. I would have had a tough time being on the 35% bucket of the post IE mortality statistic!

Now that still leaves the question, “What is causing the freakin’ ooze?” unanswered. I met my nephrologist with the report of the TEE. He said let us stop all antibiotics and wait and watch. The risk of long term antibiotic usage is a fungal infection. Don’t ask me how and why!

So, for now, I have been asked to stop the antibiotics (after almost two months of taking them) and wait.

Saturday, September 23, 2017

An unending fistula infection

In the middle of August, I contracted an infection in my fistula. I have had a few in the past. All of them however would clear with a few days of antibiotics, typically Amoxyclav. This time however, I have been on a variety of antibiotics for the last almost six weeks and though the infection has reduced, it has not gone completely. There is a still a persistent, small amount of discharge of blood from the infected site. I am now on what they call, a maintenance dose of an antibiotic.

I use buttonhole needles and the buttonhole technique has been associated with an increased risk of infection. Earlier I used to have an infection almost every year. But ever since I have followed the double prep method of cannulation, I have managed to keep infections at bay. WEhn the infection came however, it made up for all the missed instances.

If you asked me to move away from buttonhole to the regular, sharp method of cannulation, I would refuse. The advantages of buttonholing for me are far too great to give it up, at least for now. The reduced pain, the ability to avoid aneurysms, the zero risk of cross punctures - all make buttonholing a risk worth taking.

The downside of an infected fistula is that you cannot shower freely as you need to protect the infected site from water. And of course, swimming is on hold! That’s something I miss a lot. Now that winter will set in soon in Hyderabad, I am not sure how long I will be away from swimming.

For now though, all I am hoping is for the infection to go away completely. I am not really sure what side effects such a long duration of antibiotics could  cause.

Saturday, September 2, 2017

A life on the cloud

I was always someone who had everything on his laptop. Email and files would all be on my laptop at all times. I took backups using Apple’s Time Machine and had another Carbon Copy Cloner copy. I used to take two backups almost daily! 

The reason for this was that I used POP for my email and I had set it up so that my mail client (Apple Mail) would delete the copy of the email from the server. If anything happened to my laptop which caused me to lose my data, I would be stranded without my email forever! 

I had this bad experience at one point when both my hard disks crashed and the only copy of all my mail and files was on my laptop. I became paranoid after this incident.

Recently, I decided to put an end to this dependency on hard disks once and for all. I painstakingly moved all my email to IMAP. I had to create folders in the IMAP account and then drag and drop email from the corresponding POP folder to the IMAP folder. This was the worst part of the entire exercise.

Then came the files. I already had a Dropbox Plus account which gave me 1 TB of data storage on the cloud. I wasn’t using this enough. I took the big decision of moving all my files to Dropbox. I first spent some time cleaning up my files on the laptop. I removed a lot of files that were just lying there without being loved for years. I moved all of them to Trash. I also structured my folders better. Then, I finally moved everything to Dropbox from the laptop. 

There, I was done!

I recently moved to an iPad Pro 10.5” as my primary work computer. To get it all setup, I simply had to setup my Gmail account and my Dropbox account and then in Dropbox, I had to set all my files to “Make Available Offline”. Once this was completed, I was all set.

There are many advantages to this. I can practically work from any computer. I am not tied down to using my own. Even if my iPad goes down, I would not lose a single email or file. The only downside to this is the availability of the internet to sync. But this is not needed all the time since I always have the most recent copy on my iPad. Changes would get synced when the connectivity was restored.

I think moving to the cloud is a great change from the way I used to work. It is very efficient and safe. I don’t have to ever worry about losing any data or taking backups. A life on the cloud is a good thing!

Wednesday, August 9, 2017

Fresenius acquires NxStage: what this means for those who want Home HD in India

In a surprise press release, Fresenius Medical Corporation announced the acquisition of NxStage, the company that produces the world’s only portable hemodialysis machine. I just wrote about NxStage completing ten years a couple of days back.

This acquisition could be good news for patients in India looking to have access to home hemo infrastructure. Why did NxStage not come to India? As I said in my last blog post, this was primarily due to the lack of a large number of patients who would be able to afford a machine like the System One and more importantly the per-session cost of the consumables.

How can that change with Fresenius coming in? Fresenius already has a well-established presence in the country. They are the country’s largest dialysis machine suppliers and they have a decent penetration when it comes to consumables for dialysis as well. Add to that their solid service infrastructure which consists of well-trained engineers and you have an end-to-end dialysis solution. The Fresenius team can theoretically make the NxStage machines available pretty soon in the country. They would need to figure out a way to manufacture the NxStage specific consumables at a lower cost. They can easily get their Indian engineers trained in the NxStage machine. All this would actually make it possible for Indian patients to get access to the NxStage machine!

However, all this is assuming that Fresenius would want to bring the machine to India. That is quite a big assumption. It is rarely the case that patients like me can gauge the real reasons for these multi-billion dollar acquisitions! We might never get to know the real reasons behind the acquisitions. Press notes are drafted to make the right noises. People might make guesses about the real motive. However, no one apart from the people right at the top would know the real reasons.

Anyway, I am strongly hoping that Fresenius will find a way to bring the machine to India and will want to do so. The large population here does have people who will want the convenience it offers. So, to those Indians on dialysis who want better options: don’t lose hope yet!

Sunday, August 6, 2017

NxStage System One completes ten years, no signs of coming to India

The revolutionary portable dialysis machine that has enabled home hemodialysis for many patients in the US has completed ten years. More than a hundred patients recently celebrated their ten year anniversary with the machine. Despite criticisms of the machine by renowned experts especially with regard to the high blood flow rates (necessitated by the low use of dialysate to make it portable), this machine has really changed life for many. 

When you think about it, though home hemo in itself is a huge life-changer, the added convenience of a portable hemodialysis machine takes this freedom achieved due to home hemo to a whole new level. 

For me personally, the inability to travel without the shackles of a fluid and diet restriction is a major killjoy. Who wants to have these sickening restrictions on a vacation? In fact, when you’re used to not having any restrictions at home, having them on a vacation actually makes the outing sometimes feel torturous!

The fact that not one company has been able to come out with an alternative to the System One is quite astounding. Ten years is a long time. Though there are many companies that have a machine in the works, not one has been able to hit the market. 

And what keeps the System One from India? Are we more than ten years behind the US? This is a really sorry state of affairs. I complain about the lack of Soliris to enable me to have a kidney transplant. I have stated in the past that I will stop complaining; just give me the NxStage machine!

Saturday, August 5, 2017

Watching streaming video

I recently got myself an Amazon Fire Stick. It is a very simple device that plugs into the HDMI port in your television and connects to a power socket. Using Wifi and various apps available for it, it can stream a lot of content from around the world.

I have watched a lot of stuff since I got the device - House of Cards, Silicon Valley, Inside Edge, The Crown. Its an amazing device with the simplicity of any Apple product. 

I remember reading about television content that you could watch at your own convenience long, long back in a book. To me, at that time it seemed almost impossible. And here I am actually using such a device. The pace at which technology is progressing is almost mind-numbing. I recently was told about a blog called Wait, but why? In it the author writes some really amazing stuff about how technology is changing our world and the rapid pace at which this is happening. I am going to write a complete post about that some other day.

Back to five nights a week

I have been dialysing for six nights a week for a long time now. I did dabble with various other routines and settled on six nights a week. That worked well for me. For the last year or so. I have been having Carpal Tunnel Syndrome which did not allow me to sleep beyond very early in the morning and I would get up with severe numbness in my left hand. Strangely, on dialysis nights, I could sleep up to 5 am. So, it kind of made sense for me to do dialysis on more nights!

Recently, I got operated for  Carpal Tunnel Syndrome on my left hand and my right hand is getting better with a device under clinical trial. So I am able to sleep till longer. I thought recently that I should try to do five nights instead of six nights and see how it goes. I have been doing that for the last two weeks and find it going quite well. I will be continuing this for some time now.

What, you might wonder, do I like about my nights off-dialysis? Well, who likes to dialyze? Who likes their fingers to be tied with a string to prevent the hand from moving too much in the night so that the needles don’t come off? Who likes needles in their arm, isn’t the first place? Not me! I also like the fact that I am alone in my room. I feel free. Honestly, it is difficult to describe.

I have been putting on less fluid weight recently and that has helped to make this decision. If I know me well enough, the less fluid weight gain is not going to last long. In that case, I will switch back to six nights a week. That is the whole damn advantage of home hemo. You can choose when to dialyse and when not to. You can choose when to start your session and when to end it. You can dictate your treatment without worrying about schedules, about timings, about so many other things. I am so grateful that I have access to this wonderful modality. I so wish many others could do this as well!

Sunday, July 30, 2017

“God doesn't exist. But don't tell that to my servant...”

“God doesn't exist. But don't tell that to my servant because I am afraid he might kill me while I sleep.” - Voltaire

I came across this quote in the book Sapiens by Yuval Noah Harari. It struck me as really profound. The concept of God was probably created to bring some kind of order to society. Think about it. Do you think a majority of the people who do not have the fear of divine punishment would stay away from things we consider ‘wrong’? Granted, there are some people who would not do ‘wrong’ because it is ‘wrong’. But how many such people are there? My thinking is that a vast majority of human beings, sapiens if you will, don’t do ‘wrong’ because of the fear of punishment of some kind - by the law or by God.

Take away the fear of punishment and then the world would quickly descend into chaos and anarchy. People would be doing all kinds of things - murder, rapes, cheating, dacoity, you name it.

Having law was simply not enough. People would be punished only if they got caught and then there was also the burden of finding evidence to prove your guilt. There was something more powerful than law that was needed. God fitted the bill nicely.

The trouble is the concept of God relied on something called faith. You did not need evidence to prove anything. Nobody could question anything. Dogma was the order of the day. This lead to some rather unfortunate consequences: rituals and rules.

I think religion was a good thing that man made. However, the real problems began when layers kept getting added to every religion. With every generation came another layer - a layer of rituals and rules. “You should not do this”. “If you do this, this will happen”. “If you do this ritual, this can be cancelled out”. The rituals and rules became so complex and so irrational that religions today are probably completely unrecognisable when compared to their original forms. And the most important rule was “Theirs not to reason why, Theirs but to do and die.” No questions could be asked. That would be blasphemous. With this came absolute power for the clergy and unquestioned obeisance from the laity.

In the end, religion has become a monster that is being misused so badly that it completely defeated the purpose for which it was created.

Wednesday, July 26, 2017

Keeping busy is the best way to restrict fluids for those on dialysis

If you asked me what was the toughest thing about dialysis, I would say the fluid restriction. Restricting all fluids put together to a litre a day, which is the typical fluid volume most people are allowed is very difficult. Many people give different suggestions on how to limit fluids. Use a one litre water bottle and drink only out of that, squeeze a lemon in a glass of water and freeze it in an ice tray and then suck on a cube when thirsty, limit salt etc.

These options are great. However, I think the best way to restrict fluids is to keep busy. Working full time obviously, is the best option. If not full time, at least part time. If working is not an option at all, then find something productive to do that keeps your mind occupied. Everyone needs something to look forward to. In the book, ‘Being mortal’, Atul Gawande recounts how adding a vegetable patch and some pets to a home for the aged improved outcomes dramatically for all the people staying there. Everyone started looking forward to doing some work for the patch and the pets. They had something to do. They had something to look forward to.

In dialysis, apart from the mental benefits in terms of being productive, limiting the fluid intake is an added advantage. If you believe it is thirst that is causing you to drink more water, think again. This is completely a mental game. The mind is like a spoilt child. Tell it that you cannot have something and it will crave only that. If you keep it busy with something else, it will forget about what it cannot have.

Most people I know that have survived long on dialysis have been working. It need not be a regular job. It could be anything. It does not have to pay anything either. The mental benefits are far greater than anything else that you may gain from this.

Tuesday, July 25, 2017

How I fixed my non-dialysis day sleep problem

I used to relish my non-dialysis days for a long time. However, the numbness in my left hand  which was eventually diagnosed as Carpal Tunnel Syndrome did not allow me to sleep beyond 2 or 3 am. I would wake up with a severe sensation of pins and needles and pain in my left hand. I would need to massage it and shake it and then try to go back to sleep. I would be able to sleep for a short while and then the sensation would return. Around 4 am or so I would just give up and then wake up completely.

I was operated for Carpal Tunnel Syndrome in June which relieved the issue in the left hand. Strangely, the sensation began in the right hand almost immediately after the left hand was operated upon. You could argue that this looked like it was a psychological issue. Believe me, it was not. 

I was planning to watch for a while and then have the right hand operated too. However, suddenly I got to know that one of our NephroPlus partner hospitals was conducting a clinical trial on a device that cured Carpal Tunnel Syndrome without surgery. The device was invented by a German mechanical engineer who had the same issue and did not want to undergo surgery for it. I got in touch with the hospital partner and managed to get the device.

I have been using the device for two weeks now and I am happy to report that I was able to sleep through until 6:30 am this Tuesday, my non-dialysis day. Inspired, I took even yesterday (Saturday) off from dialysis and was able to sleep through till 6:20 am. I am so thrilled that it looks like this device will cure the issue for me without surgery.

I will post more details about the device here once I check with the team on whether it is ok or not.

Sunday, July 23, 2017

The secret recipe of longevity on dialysis

Recently, I completed twenty years on dialysis  In India, only a few patients complete such a long time on dialysis. I am fortunate enough to know 3-4 people who have completed a long time on dialysis.

Each one, I guess, has his or her own secret to live long on dialysis. For me, it is only one thing - get  as much dialysis as you practically can. I dialyze for 7-8 hours at night, six times a week. I can confidently say that I am alive due to this. There are many people who are on thrice weekly dialysis and have been on dialysis for longer than me. So I guess the magic recipe is different for different people.

Dr. John Agar, a nephrologist from Australia says dialysis is like love making: longer the better, gentler the better and the more frequent the better!

I couldn’t agree more.

When I tell people that I dialyse daily and that too for 7-8 hours every night, they are surprised. They ask me, “You need that much?”

Well, I don’t need that much. I choose that much.

 It is not rocket science honestly. The kidneys of a healthy human work 24 X 7 X 365. No breaks. Dialysis is simply replacing kidney function. So, it is quite obvious that the closer you to get to 24 hours a day, 7 days a week, 365 days a year, the better it is for you.

The best part of getting optimal dialysis is that it allows you to be more relaxed with the diet and fluid restrictions. I pretty much eat and drink what I want and however much I want. Since my body gets such good dialysis, I am able to swim every morning, work full time and travel quite a bit.

Yes, the long term impact of being dialysis is felt from time to time in the form of co-morbidities of various types but those are not avoidable. I manage to deal with them in different ways.

Again, I cannot emphasise enough that each individual is different. You don’t need to be on daily nocturnal dialysis to be able to live long. There are many people who’ve lived longer than I have and are on thrice weekly dialysis at the hospital. This is just my experience. 

The key, however is that the myth in India that you cannot live for long on dialysis is wrong and needs to be dispelled. Individuals can live long, happy, productive lives on dialysis. It’s only a question of how much you want it.

Friday, July 14, 2017

Twenty years with kidney disease

Today, I complete twenty years with kidney disease. Back in 1997, on this very day, I took those vaccines that triggered Atypical Hemolytic Uremic Syndrome, the ultra-rare disease that damaged my kidneys. In a matter of twenty four hours, my life had changed completely. On that day of course,  I had no clue about what was actually happening inside me. The initial symptoms were put down to side effects of the vaccines. Only when the symptoms did not abate after three more days, did we consult my family physician, Dr. Kirit Parekh who ordered some initial tests and discovered that my kidney function was affected. He then put me onto Dr. Girish Narayen, the nephrologist who treated me for a long, long time.

Update: here is a picture of me with him when I went to meet him on the twentieth anniversary of me meeting him back in 1997:

About ten years back, I started this blog and my first post was titled, “Ten years with kidney disease” and in it I had outlined the first ten years of my journey. There have been small ups and downs since then - some neurological issues, a cardiac problem (now resolved), arthritis, Carpal Tunnel Syndrome etc.

On the professional front, of course, the biggest thing that has happened is NephroPlus which has come to change my identity from ‘the guy on dialysis’ to ‘the guy on dialysis who co-founded India’s largest dialysis company’. Not bad eh? Thanks Vikram and Sandeep for this!

For the last twenty years, I feel very grateful. The entire duration has been on dialysis since my transplant did not work. Not many on dialysis have had such a journey. My parents and family have been a massive source of strength and support. Without them I would never have made it so far. Then, Dr. Girish Narayen, the man who put me on daily nocturnal home hemodialysis. I can safely say that I am alive because of this modality. I can also never forget Jayaram Reddy, the Head of the dialysis centre in KIMS Hospital. If it wasn’t for Jayaram, his expertise and and his confidence in his abilities, I would not have begun home hemo.

Where do I go from here? I swim every day, I work full time. I don’t travel as much. I would like to do some more travel. I would like to do more things I genuinely enjoy. I realise the limits of my body but would like to make the most of the coming years.

When I look back at this journey, I see one recurring theme which can aptly be summarised by these immortal lines by Robert Frost:

Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

Tuesday, July 11, 2017

Everything we hear is an opinion, not a fact

I came across this quote on Whatsapp recently:

"Everything we hear is an opinion, not a fact. Everything we see is a perspective, not the truth."

I couldn't agree more. I did some research on whose quote this was and ironically, this quote is wrongly attributed to Marcus Aurelius all over the internet!

However, this does not take away from the truth of the statement. These days, you get to hear and read such contradictory 'facts' that you are never sure what is true and what isn't. Gone are the days when you could rely on news channels and the print media to deliver to you news, uncoloured by the opinions and leanings of anyone.

Online media has made it even worse. Here there is no pretense of being neutral either. When I browse through my Facebook / Twitter feeds, I very often see completely contradictory claims about the same fact posted by friends with differing loyalties.

People with staunch religious beliefs have an unquestioning attitude towards their religions. After reading the book, Sapiens, by Yuval Noah Harari, you realise that even those beliefs stand on shaky ground. By that same logic, you should not consider everything you read in the book Sapiens, to be factual!

When you realise that many things you have based your world-view upon could have questionable foundations, you feel quite insecure. What is true, what isn't? What is a fact, what is an opinion?

People who twist facts and then spread this alternative reality are doing a lot of harm to the collective conscience of humankind. But then, as much as we would like to believe that this is a recent phenomenon, in reality, this has been happening for a long, long time now. The trouble is the longer the so-called fact has been round, the more firmly entrenched it tends to be in people's minds and the truer it seems to be perceived as.

In the age of the internet, it is very difficult to separate fact from fiction. A few years back, as part of a harmless prank, I managed to convince a colleague that man had landed on Mars by sending him some links from the internet! When even such pages exist, there would obviously be a lot more authentic-looking stuff that would support some selfish narrative.

So, it would do us well to keep the above anonymous quote in mind and not accept everything we hear to be true.

Sunday, July 2, 2017

Health Update

I got done with my surgery for Carpal Tunnel Syndrome on the 15th of June. The surgery was uneventful. I was home before lunch the same day. In the days after the surgery, (19th of June) however, I foolishly tried to move a sofa in my house with my right leg after which I sprained my right thigh badly. I did not realise until the next day however that the pain I was having in my right thigh was due to the sprain. I put it down to the side effects of the antibiotic.

On the 20th evening, when it struck me that it had been a full day since the last dose of my antibiotic and the pain was showing no signs of relenting, I thought about it and figured that the pain could be due to the sprain that could have been caused by moving the sofa!

I went to the orthopedic doctor who did the surgery for Carpal Tunnel Syndrome and was examined by him. He concluded that it was muscular and thankfully not related to the bones. He prescribed a muscle-relaxant and some pain killer. By the end of that week, I was feeling better. By Monday, the 29th, the pain was completely gone.

This week I have started going to office after a ten day gap. From the last couple of days, I have resumed swimming as well. I hit the pool after about three months. I am taking it a little easy to begin with though.

I have been suggested a synovectomy in the left knee to send the synovial fluid for a biopsy to try and figure out the cause for the pain that I have been having for the last 8-9 months there. I have decided to delay it for some time as I have been through quite a lot in the last couple of weeks.

Saturday, June 17, 2017

Augmentin, not nectar

A few days back, I stopped by at a pharmacy to buy some medicines. I overheard two other customers talking.

"Augmentin 625 mg - 10"

"Oh Augmentin. It's a very good medicine."

"You've taken it?"

"My uncle had an infection in his feet. He took this for five days. He was totally cured."

"Ok. I have been asked to take it for a cough."

Well, nothing wrong with that. Except that the second guy's tone was very casual. He sounded like he would take Augmentin for any minor problem.

Many people don't realise the dangers of taking antibiotics without actually needing them. Several studies have shown that bacteria are becoming resistant to several antibiotics. This has a lot to do with indiscriminate use of these drugs.

India, especially has been blamed for allowing pharmacies to dispense antibiotics and several other drugs without prescriptions. Some doctors too are known to prescribe antibiotics where they can be avoided. Patients are happy with the quick-fix they offer.

Apart from having some undesirable side-effects, these drugs could become ineffective over a period of time because they have been used where they need not have been used due to bacteria developing resistance to them.

Scientists would need to go on developing stronger antibiotics which may not always be possible. This, like many other problems of our times is not one that affects us immediately but has disastrous consequences in the long run. We must sit up and take notice.

Here is a very interesting video from Harvard Medical School that demonstrates how bacteria mutate to develop resistance to increasing dosages of antibiotics:

Friday, June 16, 2017

Sapiens by Yuval Noah Harari: Life changing

I came across the book Sapiens when I read a column by its author Yuval Noah Harari in the online version of some magazine. I forget which magazine it was and also what the column was about. The column intrigued me and in the footnote it was mentioned that Harari was the author of the best selling book, Sapiens. I immediately logged onto Amazon and bought a kindle version of the book.

In the book, Harari describes the history of the human species as put together by scientists and anthropologists. Harari first describes what happened after the Big Bang - how Physics began, then how Chemistry began, how Biology began and then finally how History began. Evolution describes the process of how single cells eventually grew into the species Homo sapiens that we call human beings. He then goes on to narrate the origins of the four revolutions that made humans unique: (pasted below from Wikipedia)

1. The Cognitive Revolution (c. 70,000 BCE, when Sapiens evolved imagination)
2. The Agricultural Revolution (c. 12,000 BCE, the development of farming)
3. The unification of humankind (the gradual consolidation of human political organisations towards one global empire)
4. The Scientific Revolution (c. 1500 CE, the emergence of objective science)

All the material in the book is purportedly based on discoveries of various fossils made across the world and theories that explain these discoveries.

Harari's theory of how religions evolved makes for some very compelling reading. It makes you think and question your own beliefs. Is whatever I've been believing in so far nothing but a story of someone's fancy imagination? What is the evidence behind this?

The problem however is not as simple as discarding whatever you've been believing in so far. Science's biggest strength and weakness at the same time is its ever-changing nature. Science has no problem in discarding yesterday's universally-accepted theory in favour of a new theory if facts support the new theory better. Religion, on the other hand, has at its very core a set of unchanging dogmas. Whatever the facts may lead you to believe, religion prefers declaring you a heretic rather than change its core beliefs.

If someone were to discard all his religious beliefs in favour of science, would this decision hold him in good stead forever? What if the ever-changing nature of science cause it to discard some of the basic contradictions it has to religion at some point in the future?

These are some of the many questions that flooded my mind as I read this book. At the end of the day, this decision is up to each of us. This book is one I would recommend to everyone. It is important for each of us to debate the contents in our mind. It is good for us to ask these questions. Sometimes, the answers might not be fully evident. It does not matter. It is good if this forces us to think and not rest our minds in the status quo.

For a quick summary of the book, click here. However, I really recommend that you read the whole book.

Thursday, June 15, 2017

Carpal Tunnel Syndrome

  • I finally have a firm diagnosis for the numbness in the fingers of my left hand
  • It is Carpal Tunnel Syndrome (CTS)
  • I have been having this numbness from late 2015
  • I had consulted a neurologist long ago who somehow missed this diagnosis
  • I consulted another neurologist a few days back, a very senior doctor at Care Hospital
  • He got some tests done which confirmed his initial suspicion of CTS
  • I am scheduled to undergo surgery to decompress the nerve today at around 9 am
  • By the time you read this, I should have been done!
  • Let's hope the surgery helps to relieve my symptoms

When you see something here posted exactly at 5 am... means it has been drafted much before and scheduled to be posted at such and such a date at 5 am.

All my short stories are written completely and then scheduled to be released one part each day typically early in the morning.

Even this post and tomorrow's post have been already written and scheduled to be released at 5 am.

Wednesday, May 10, 2017

Why I started dreading my non-dialysis nights

I posted recently about how I looked forward to my non-dialysis days. That has changed quickly. I have started dreading the nights due to the numbness in the left hand.  I am able to sleep only for a few hours and then wake up with severe numbness in the fingers of my left hand. I sit up for a bit and the numbness gets better. Then I try to sleep again. Within 30-40 minutes it returns. I do this a few times and then give up. This morning I gave up at around 4 am. Last Tuesday night, it was 3 am.

Luckily I have a diagnosis. I saw a vascular surgeon a few days back and he is convinced that it is Steal Syndrome. The fistula in my left arm is not allowing enough blood to flow to the hand due to which the hand feels numb.

The plan is to take a vein from the lower left thigh and bypass the fistula to give supply directly to the hand. This needs to be done under general anesthesia. My parents are going to be out of town the rest of the month. I am planning to get this surgery done in the first week of June.

I also went to see the orthopedic doctor a few days back to discuss the worsening pain the left knee. He asked me to repeat the MRI which showed that the inflammation was getting worse. He has suggested that we get a procedure done called an Arthroscopy where they will remove the synovial fluid and send it for analysis. This will tell us what exactly the reason is for the inflammation. It could be rheumatoid arthritis, Tuberculosis or something called Pigmented villonodular synovitis (PVNS).

Once the cause is established, the treatment can be planned. This will also be done after the first week of June.

To my mind, the numbness is the bigger problem and I am really looking forward to it being resolved. I will keep you posted.

Thursday, May 4, 2017

Why this dichotomy?

It’s late evening
The body is tired, the joints ache
He’s in no mood for more
He’s had enough
His eyelids droop

How has his day been?
He reflects and nods with satisfaction
Not spectacular, not uneventful
Could have been better
But for things beyond his control

He is ready to sleep
As the birds head home
As darkness envelopes the sky
Nothing more to do
Nothing more to look forward to

He looks around him
People are still in their mornings
Or afternoons
With lots more to do
With lots to look forward to

Why then has night fallen?
Why then is it time to sleep?
Isn’t there an answer?
Will someone not question?
Why this unfair ending to the day?

Life is not fair, not just
Not equal to all
Some have bright days
Others have clouds
Why this difference, why this dichotomy?

Wednesday, April 19, 2017

Numbness in left hand fingers

Among the two problems that I blogged about a few days back, one of them has been addressed, temporarily at least, by the hyaluronic acid injection I was given a week back. The other problem remains.

The trouble is it does not let me sleep well on my non-dialysis days. Last night, I did not dialyze and this morning I woke up finally at 4 am after having a restless one hour. And here I am blogging at 5 am in the morning after having some Darjeeling tea. My doctor has suggested that I try an ointment for symptomatic relief. Honestly, I don't like the sound of that. Basically it means that there is no permanent solution for this.

For some time, I was like a ball in a tennis match, being thrown from one court to the other court, the neurologist and the vascular surgeon playing the match - "Not a neuro problem", "Not a vascular problem"! Multiple investigations yielded no clue.

When I did not have this problem, I used to sleep till 7 - 7:30 after my non-dialysis nights. That used to feel so good because I could not sleep beyond 5 am on dialysis nights. Now I sleep well till around 5 am on dialysis nights and on non-dialysis nights, I toss and turn, sit up to relieve the numbness and then try to go back to sleep again. After a point I just give up. My watch shows 3 am or 4 am on most such nights.

I have stopped traveling completely due to these two problems. The knee pain was especially debilitating. After I have taken the injection, I am still on the NSAIDs and the doctor said he will withdraw them after a month. I have been given a timeframe of 2 months to a year by different doctors on how long the effect of the injection will last. Sometimes I think, once the pain goes completely (my knee still hurts towards early evening these days), I should travel a bit but due to the hand numbness I am quite wary of traveling. Nights would be quite disturbing since I would not be dialysing at night.

On long term dialysis, it is these additional problems that bother you more than the kidney failure itself. I honestly, don't mind the dialysis these days. I just wish it was the only thing I had to deal with.

Wednesday, April 12, 2017

Hyaluronic Acid Injection for Osteoarthritis in Dialysis Patients: My experience

To address the first problem among the two I mentioned here, I got an injection of Hyaluronic Acid in my left knee yesterday. The thought of getting an injection in the knee can be quite disconcerting even for a dialysis veteran like me who gets daily injections in his left upper arm for dialysis. I had all sorts of questions. Would the needle be put into the bone? How big would the needle be? Would they be giving me a local anesthetic? Would the entire experience be painful?

I was called to the hospital at around 4 in the evening. I reached there promptly. The injection was called Synvisc One. The Orthopedic Doctor was to administer it. He had done this many times and was very confident. He first cleaned the entire left knee with Betadine (Povidone-Iodine solution). He then injected good old Lidocaine. I use this for my dialysis too just before inserting the needles. For this procedure though, he probably inserted a whole lot more than what I do. I couldn't see what was happening because I was asked to lie down and all the action was happening in my knee.

The next step was to put in a needle and position it carefully so that it is in the knee joint. For this he inserted a syringe and then drew the piston. If blood came, the needle was not in the joint. If clear fluid came, then it was in the joint. The first time, only blood came. He then tried repositioning it. Blood again. Every time he drew the piston of the syringe, I felt some pain. It was not unbearable. It was more like a momentary shock. After about three such tries, finally, he got the needle into the joint. He quickly removed the syringe leaving the needle there. He inserted the syringe that was prefilled with the 'miracle juice' as he called it and inserted it into the needle and pushed all the contents into the joint. He removed the syringe with the needle. It was done!

It was a tough task. The Doctor was brilliant with it. To insert a needle into the joint without anything to guide you is like shooting at a target in the dark. He kept assuring me, talking to me and calming me down. I love such doctors.

Yesterday evening, I had a lot of discomfort. The knee joint felt very stiff. I found it difficult to walk. After a while, I became very restless. I couldn't sit still. I tried to distract my mind by watching a movie. The knee wasn't painful at all. It was just discomfort and restlessness. I took a low dose sleeping pill and went to bed.

Sleep was quite disturbed. I kept waking up due to the restlessness and discomfort in the knee. I had a final stretch of good sleep though and woke up feeling refreshed and much better than last night.

Overall, I think the entire experience of taking the injection was not painful. I would call it 'discomfort'.

The Doctor said the injection would take 4-6 weeks to kick in. I hope this resolves this knee pain, at least for a year.

Sunday, April 2, 2017

The one additional feature I wish dialysis machines had

Dr. John Agar asked all the patients on the Home Hemodialysis group on Facebook a few weeks back, what additional features we would like on hemodialysis machines? I don't remember the exact words and I don't even remember what I answered.

Thinking about it now, I feel that if there was an accurate way for hemodialysis machines to determine how much above my dry weight I actually was, I think it would make my life a lot easier.

Dry weight is the weight of a dialysis patient assuming there is no excess fluid in the body. Since the kidneys of a dialysis patient do not work, excess fluid and toxins that healthy kidneys remove, start accumulating in the body leading to various complications. These are removed during the dialysis treatment.

While toxins are removed automatically based on the concentration gradient between the blood and a fluid called dialysate and we usually do not 'set' the amount of these toxins to be removed, the fluid is removed based on a machine setting. You basically 'set' the machine to remove a certain amount of fluid. If you're a good boy or girl, this is typically under 1 to 2 litres. If, on the other hand, you're like me, a non-compliant patient, this could be up to 5 litres sometimes!

Now the tricky part is figuring out how much to remove? Apart from the additional fluid, the patient's weight might have risen or fallen due to various other factors - exercise, nutrition, just after a meal etc. For us nocturnal patients, the last one of these is typically the culprit. Your weight may be off depending on how light or heavy your dinner was and how long after dinner did you check your weight to determine your fluid removal goal.

Due to this, I have often tried to remove too much or too little fluid leading to all kinds of issues.

If the hemodialysis machine could automatically detect the amount of excess fluid and advise me to remove a certain amount, I could either accept or ignore that advice. The technology I think is already available. I have seen a machine some time back that used Bioimpedance to determine the amount of excess fluid in the body. It wasn't accurate enough though.

By improving the accuracy and integrating this technology into the hemodialysis machines, I am sure many patients would be saved from complications such as cramps, hypotension and breathlessness due to wrongly setting fluid removal goals during hemodialysis treatments.

Saturday, April 1, 2017

Wah re marketing!

I happened to taste Cranberry Juice from Real at my brother's house one day. I really liked the taste. I promptly bought a one litre pack a few days later and kept it in my refrigerator to sip whenever I felt like some. A few weeks after that pack got over, I went to the supermarket and happened to see a Real Cranberry Juice packet on the shelf there.

I picked it up and checked the ingredients.

If you look at it carefully, you realise that the main ingredient is water, next is sugar and in third place is Cranberry Juice concentrate. Also only 2% of the contents are actual cranberry juice! What kind of gimmick is this? Only 2%!

My eyes then fell on a packet of Tropicana Cranberry Juice. I picked that up and checked the ingredients. I thought this might be better as they have all this '100%' campaign going on.

I was in for a huge shock. Water and sugar were first and second on expected lines. However, Red Grape Juice was third and Concentrated Apple Juice was fourth! Concentrated Cranberry juice was fifth and was only a measly 0.5%!

Who allows this kind of nonsense? Aren't the regulatory authorities supposed to check such fraudulent practices? How can something that has more grape and apple juice than cranberry juice be sold as Cranberry Juice?

I had a problem with the Real product as well because that contained only 2% Cranberry Juice. and here was the Tropicana version that really took the cake!

We all need to learn to read the ingredients of what we buy from stores. I read somewhere that we should never buy anything that has more than three ingredients. While that would be really difficult to practice, at least reading the ingredients of products would give us a lot of information on what we are actually buying.