Monday, November 29, 2010

Fistula pain

For the last couple of days I have been having some pain in the venous site of my AV Fistula. I changed the location of the cannulation. I am actually at Care Hospital, waiting outside Dr. P. C. Gupta's OP room for my turn. Dr. P. C. Gupta is a vascular surgeon.

I suspect that there is an infection at that site. There was a similar pain a couple of months back and I had shown it to him. He put me on an antibiotic and asked me to give the site some rest. I haven't used that site since then. Now, a site close to that is paining.

I am a little worried about this. This is the second time in the recent past that this has happened.

A fistula is basically an access to your body's blood for dialysis. During dialysis, blood is continuously drawn from an artery and then passed through an artificial kidney - a dialyser - and then sent back into the body through a vein. Veins are generally small and cannot handle the flows typical during the dialysis process. For this reason, the artery and the vein are connected so that over time, the vein becomes large enough to be able to handle these flows.

Over the last thirteen years, I have had a number of surgeries that involved making accesses, most of them fistulae, in my arms. Once a site has been used or attempted to be used, it cannot be used later. So, except for my right upper arm, all potential fistula sites have been used up. The current fistula is in my left upper arm.

For this reason, I must do all it takes to preserve the current fistula because I do not have too many options left in terms of access.

Friday, November 26, 2010

Have you had an orange today?

Oranges are my fruit of the season. What better way to start your day than a ripe, sweet orange? I just love the taste of an orange - slightly sour, yet sweet. It is probably the only fruit that is also the name of a color!

Oranges are excellent sources of Vitamin C and 100 grams of the fruit can give you 75% of your daily requirement of Vitamin C. It also provides good amounts of Vitamin Bs.

Did you know that the word Orange is actually derived from Sanskrit? The word narangah means orange tree in Sanskrit and that is where the word Orange is taken from!

Oranges are best had as they are - the natural fruit pulp after removing the peel. Those on dialysis, unless you're on daily nocturnal, should stay away from the juice since it contains high quantities of Potassium. Orange makes for an excellent marmalade and it is probably one of the most widely eaten marmalades.

The variety that originates in Nagpur and other parts of India is quite different from the variety that is produced and consumed in much of the rest of the world. Nagpur oranges have greenish orange peels and - truth be told - I prefer the slightly sour taste to the variety available in other countries.

Brazil is the world's biggest producer of Oranges and India is the fourth largest.

I often think about how the foods that taste good are never good for the body. Well, the orange proves that totally wrong. So, have you had an orange today?

Thursday, November 25, 2010

Congratulations Nitish Kumar!

There's hope after all! After all the scams in recent times, we were slowly losing hope. Will India ever make it? But then the Bihar elections happened. The landslide victory that Nitish Kumar won shows that development works.

In the recent past, we have seen governments that genuinely work for the betterment of the people being voted back. Until some time back, with the exception of West Bengal, every state would invariably see the government in office being voted out. But then slowly we started seeing this trend changing.

Now, we see this happening in many states. The governments that pursued an agenda of development in Gujarat, Andhra Pradesh, Madhya Pradesh and now Bihar among others were all voted back to power.

In Bihar especially this holds so much significance. The state had become the worst state in the country with Lalu Prasad Yadav and his wife at the helm. Development was a joke. So, when finally, after decades of misrule, when Nitish Kumar was sworn in as Chief Minister, he had his task cut out. And deliver, he did.

From what I read, Bihar is now a changed state. You can see the difference on the ground. And the common man is not a fool. At least not any more. He now sees above caste and religion and votes for what is really good for him.

Congratulations Nitish Kumar!

Monday, November 22, 2010

Precautions I take on nocturnal home hemo

As you probably know, I am on nocturnal home hemodialysis. I dialyse every night for seven to eight hours. That gives me very good clearances, my hemoglobin is good and I live a close-to-normal life.

However, there are certain risks associated with nocturnal home hemodialysis. In my opinion, the biggest risk is that of blood loss during dialysis. Blood loss can happen in the dialysis center as well. The big difference is that in the center, you have people observing and monitoring you and it is day, after all. Everyone is wide awake. So, should there be any blood loss, it can be immediately noticed and corrected.

In nocturnal home hemo, both you and the tech, if any, are asleep. So, any blood loss can go undetected.

So, should you not do nocturnal home hemo at all? Far from it. The benefits far outweigh the risks. Do you stop flying after hearing the reports of hijackings or air crashes? Do you stop driving a car after hearing about fatal car accidents? By taking proper precautions, you can easily minimize the risks and get all the benefits of good, optimal dialysis.

I am a member of Home Dialysis Central and there I got some very good advice from home hemo veterans about the precautions to be taken on nocturnal. There are two possible scenarios that we need to be careful about. Blood leaks from the arterial and venous sites is the first and blood leaks from the dialyser itself is the second.

What I do is to make sure that the needles at the arterial and venous sites are taped really securely so that they do not come out of the sites at all. For both the needles, I use an 'X' pattern by using two half-inch wide transpore tape pieces and tape them across the needles and make the tape stick against the wings of the needles on both sides securely.

For the venous needle, since it is usually horizontal almost, I put a small cotton ball below and then tape it around. This gives a good angle for the flow and also secures the needle well.

The arterial needle is the one that gave me a major problem one time. This was mainly due to the primary tape in the 'X' pattern coming off. Ever since, I have been putting a half inch wide transpore tape around the wings so that the primary tape does not come off at all.

In addition, I have a blood leak sensor which basically has a sensor that is connected to an alarm and the sensor goes off should any blood touch it. I tape this sensor to the side of my arm just below where the arterial needle goes in. So, despite all this, even if any blood leaks, I will know soon enough.

The other place where a blood leak can occur is the dialyser itself. Now, the dialyser has two openable caps on both ends and after reuse processing, it is possible that the caps are not closed securely enough. This can cause a blood leak. Another possibility is the arterial and venous lines that are connected to the two ends of the dialyser are not screwed properly. This can cause a blood leak to occur as well. So, what I do is to put an empty, dry bucket right below the dialyser and put a blood leak sensor there as well. This will cause an alarm to go off if there is any blood leak.

So, you see, with proper precautions, it is possible to minimize the risks of blood loss during nocturnal home hemo. It is important for us to understand that this modality is the best there is today among hemodialysis modalities. It is the only modality that offers us a chance to live a life as close to normal as possible.

Sunday, November 21, 2010

Guzaarish: India's first film that shows dialysis and they didn't do badly at all!

Ok, first things first. I loved Guzaarish! It is a film about a quadriplegic - basically someone who is totally paralyzed from neck down. Hrithik Roshan plays the role of Ethan Masceranhas who was a brilliant magician who became paralyzed after an accident during a magic show. The film starts off with Ethan deciding to file a petition for euthanasia.

The rest of the film is about the petition hearings and Ethan's relationships with his nurse, his doctor and a student of his magic among others.

Performances are all very good. Hrithik Roshan is brilliant. Period.

Ethan has lost his kidney function and is slowly losing his other organs too. He is shown actually undergoing a dialysis session, needles in his arm, blood lines, dialyser with blood flowing. And to top it all, he is undergoing the dialysis at home. So, we haven't done badly at all. The first time dialysis is shown on Indian cinema, it is home hemo!

Of course, there are some glitches - a doctor comes home to do his dialysis and the main premise is also somewhat flawed - he really did not need euthanasia to die, all he had to do was not undergo dialysis. This is perfectly legal and he would die within a few days of not dialyzing. To make it less uncomfortable, he could also have just removed water - isolated UF - and not clean the toxins. But I guess, then there wouldn't be a movie to be made!

Not everyone will like the movie however. It is a little slow and the magic bit is probably overdone. Those who can relate to a chronic condition such as this and those who understand this will definitely appreciate it.

Saturday, November 20, 2010

How many times do you have to get it done?

I was asked this question in the pool today. It was with regard to dialysis. My fistula of course, is a dead giveaway. It inevitably leads to stares and then when the curiosity becomes uncontrollable, the question comes.

"If you don't mind me asking, what is that on your left upper arm?"

"You know what that is? That is none of your fucking business!" Of course I say that only in my mind. I mean, I have limited time in the pool. I would honestly rather enjoy the blue water with the winter sun shimmering on the surface rather than get into the details about dialysis. But then, I have not become rebellious enough to say that.

"That is a fistula and it is used for dialysis. I am Kamal and I am on dialysis. Hello!"

After the usual comments about how someone so young (I am only 25, remember?) could be on dialysis, the question about number of times usually comes, especially if they know a friend of a relative of a friend who is on dialysis.

Then comes the classical dilemma for me. How do I answer that question? How many times do I have to get it done? I get it done daily, for seven to eight hours. If I tell them that without any explanation however, they will surely need dialysis themselves soon because of the shock. And the question is how much dialysis I need, not how much I am getting!

Looking at it from a lay person's perspective, I have to get it done about once in a week actually. I can survive for a few months with that frequency. But then, I obviously don't want to get down to why that is really, really bad for the heart, the blood counts, the nerves and all. So, that brings me to thrice a week. Barely enough dialysis. But I have to get it done with that frequency to have some hope to last a few years.

However, in the end, my basic instinct to spread the word about more frequent dialysis takes over and I get into the details of how most people do it twice or thrice a week but I do it daily because it enables me to lead a life as close to normal as possible. Soon, I can sense it becoming information overload because I also go on to explain how daily dialysis brought my hemoglobin up, took care of my left ventricular dysfunction, totally cured my restless legs syndrome and damn it, enables me to swim every day and work full time!

Most people decide to call it a day and get out of the pool and I go back to my swimming.

Thursday, November 18, 2010

No point in setting Airtel caller tunes

I switched to Airtel from Idea a few months back because Idea had practically no coverage in my office area. I keep getting messages - up to three a day - from Airtel about different things. Rate plans to caller tunes to SMS packages.

One such message had an offer to set your caller tune to songs from Orange. I love all the songs of this film and thought I should set my caller tune to 'Rooba Rooba'. So I called the number mentioned in the SMS and went through the voice recognition based menu to eventually set the song as my caller tune. They charged Rs. 15 for the tune and Rs. 30 to subscribe to the service for a month. Ok, I thought. I got an SMS confirming my selection.

I called my phone from another phone to see how it sounded. I quickly realized that the whole purpose was defeated. First, a message is played where they tell you about the service and how you can copy the dialer tone and then how much it costs you. I can bet that most people would answer the phone before the song starts! WTF?

Rather than subject my callers to this torture, I promptly unsubscribed from the service. I have yet to figure out what happened to the Rs. 45 that was debited to my account.

Note: Non iPhone owners, please do not read the rest of the post

While on the topic of phone tones, have you tried setting a ringtone other than the predefined ones on your iPhone? Well, I tried and they sound really bad. First, I tried using Garage Band and it was terrible. I looked up the Internet for solutions and found some software that was supposed to do a good job. I paid $20 and bought iSkysoft's iPhone Ringtone maker.

I tried making a ringtone from Rooba Rooba and again, it sounded really bad. If I played the same song using the same iPhone using the iPod app, it plays really well. Why then can it not play well for a ring tone???

Wednesday, November 17, 2010

The McKinsey chapati

I was recently discussing lunch with a friend and colleague. This guy happened to have worked for a few years at one of the world's top strategy consulting firms (hint: look at the title of the post). I had actually finished my lunch in a few minutes and he was surprised. He asked me what I had for lunch.

"Vegetables with chapatis", I answered.

"Wow!", he exclaimed.

For a moment, I wondered, what was so "wow" about a chapati? It was almost like I said something like "Roasted pepper and asparagus marinated in Raspberry vinaigrette"! Never before has the humble chapati been the subject of such a "wow".

There was more to come, however.

He went on to ask me if I had chapatis for lunch everyday.

"No", I said. "Sometimes I have rice."

"Awesome!", he responded!!

Tuesday, November 16, 2010

On giving negative feedback

Let me relate a true incident. I was managing a team of software developers a few years back. I had heard a lot of dope on feedback and how a manager should give both positive and negative feedback to his or her team members to ensure that individuals grow in their job by addressing problems and working on their defects. It sounded very good in principle.

So, during the annual appraisal, I did a thorough exercise and came up with the positives and negatives of all my team members. During the discussion, I remember telling one of my team members that his technical ability needed a little brushing up. He did not show any signs of disagreement. A week later, I had his resignation in my inbox.

During the exit interview, I asked him the reason behind quitting. He did not mince words. He said he quit because I did not appreciate his technical ability.

From then, I have been careful with negative feedback. Most people, I feel, cannot take negative feedback the right way. Immediately they become defensive and try to justify to themselves on why that made no sense at all or worse, that the person giving the feedback actually had an axe to grind and loved putting him or her down.

It requires immense maturity to accept negative feedback and most people simply are not that mature.

How then do you handle this? I have a simple solution. Don't.

Desist from giving any negative feedback to such people. The reason is if you do give them negative feedback, they will anyway take it the wrong way. They are not going to work on their defects and try to correct themselves. Then, why bother?

As for me, when I get negative feedback, the way I react depends a lot on who is giving me the feedback and my mood at the time!

Wednesday, November 10, 2010

Theories that sound nice but have no factual basis

Over the years, I have heard some really fascinating theories about many aspects of kidney disease. Only one thing though - they have no factual basis. For the uninitiated, however, they make a lot of sense.

Sample this. When I was in my initial days diagnosed with kidney disease, a family friend came home. She had a fantastic theory. She made me lie down on my bed with three big pillows below my head. Another three pillows were placed below my legs. The rationale: excess water from the top of my body and from the lower part of my body would collect in my bladder and flow out as urine! Never mind the fact that the kidneys were not producing urine at a normal rate!

I tried a lot of alternate therapies to try and cure my kidney disease. One of them was acupuncture. The practitioner had cured someone with kidney disease. So, we decided to try it out. This person had a really amazing theory. He said that my kidneys had gone to sleep and by putting these sharp needles in the right points, he could 'wake' the sleeping kidneys by giving them a 'jerk'!

I was told by a well-wisher recently that I should not dialyse daily. My body will get used to dialysis and I will not be able to tolerate life without dialysis. Never mind the benefits of daily dialysis. Never mind the left ventricular hypertrophy it has helped me overcome. Never mind the improved hemoglobin. Never mind the active lifestyle this modality has afforded me.

All these theories sound really good. They are, of course, only that - theory. Not practical or scientific at all!

Sunday, November 7, 2010

Soon, it will be time to take a decision

I have a hemodialysis machine at home. Every night I use this machine to get dialysis - daily nocturnal home hemodialysis, the gold standard for hemodialysis today. This is which allows me to have a normal life - well, almost!

The blood pump is a very important part of the dialysis machine. It is this pump that basically draws blood out of the arterial line and pumps it to the artificial kidney and then returns it to the body through the venous line. For the past few weeks, this pump has been making some noise, similar to that you would hear when it is rusted or not well-oiled. I called the Fresenius folks and they came and took a look. They tried greasing it but the noise did not reduce. They eventually concluded that it needed to be changed. The pump costs around forty thousand rupees.

The machine is almost four and half years old. The life of these machines is close to ten years. So, I guess it is time for some parts to wear out or need to be replaced. The important thing to consider is how often this kind of a thing will happen and how much it would cost.

If, for example, this is going to become a regular feature, would it be wise to sell this machine off and buy a new one? If I am anyway going to have to spend about five to six lakhs on a new machine, would it make more sense to go in for a NxStage machine which would cost about twice as much? Though the cost of the disposables is going to be much higher with the
NxStage, would it be worth getting it for the flexibility of traveling it offers me?

These are decisions I will need to make sooner or later. Not immediately but definitely in the next few months.

Friday, November 5, 2010

Tamaso ma jyotirgamaya - Lead me from darkness to light

Today is Diwali - the festival of lights!

When I awoke this morning, there was an extra bounce in my step, an unintentional smile on my face, I was generally happy. There wouldn't be any work today. There would be sweets. There would be fun.

Many people however, woke up this morning feeling breathless, not because of the smoke from the crackers but because there was fluid in their lungs. Many people woke up this morning feeling nauseated, not because of eating too many sweets but because the toxins in their blood had crossed comfortable limits. Many people woke up this morning depressed and anxious about how the day will be, despondent, wondering how long this suffering would last.

Not because there was no treatment available for their symptoms. Not because they had some undiagnosed condition which baffled doctors were unable to cure. But simply because they did not have the money for dialysis. Simply because they could not afford to spend their life's savings on a treatment that they would have to undergo week after week after week, life long.

I myself have seen many people die due to the lack of resources to get dialysis.

This is now slowly changing. Apart from Aarogyasree in Andhra Pradesh, we have the Jain Dialysis Trust (or the Bhagwan Mahavir Jain Relief Foundation Trust) that provides dialysis at Rs. 300 for people who cannot afford it. The trust bears the balance cost of Rs. 500 per session. The trust is now more than a year old and has saved hundreds of lives by tying up with hospitals and dialysis centers in the city and offers subsidized dialysis sessions.

They distribute coupons for dialysis on the last Sunday of every month for sessions in the following month. They also provide erythropoietin injections and dialyzers and blood lines at cost by sourcing them directly from the manufacturers getting them at a low cost.

The trust has recently been allotted an area of 6,500 sft at King Koti Hospital and is setting up a state-of-the-art dialysis center with 20 machines. This is huge as now patients can avail dialysis sessions at the trust center also. The trust plans to make this center world-class and not compromise in any manner on the quality of dialysis being offered.

What can we do to help patients suffering from this disease lead a life that can be as close to normal as possible?

The trust has a simple scheme - "One dialysis for Rs. 500". You could donate from Rs. 500 and in multiples of that amount. All donations are exempted from Income Tax under section 80 G. You could send a cheque or a DD in favor of "Bhagwan Mahavir Jain Relief Foundation Trust" for the amount and courier it to the following address:

Bhagwan Mahavir Jain Relief Foundation Trust

4-1-690, Mahabhupal Manzil,
Vikranti Cinema Compound,
Jambagh, Hyderabad. India.
Tel. No.: 2474 2896, 2474 3445

You can also call Mr. Inderchand Jain on +91 98852 98100 for more information or visit their website.

If you think all this is too much a hassle but  still want to contribute, drop me a line and I could arrange for this to happen too.

Let us do something for the less fortunate this Diwali and bring light to their lives as well. Happy Diwali!

Thursday, November 4, 2010

Miles to go before I sleep

I have had kidney disease for more than thirteen years now, all of it on dialysis. I often wonder how long a person can live on dialysis. People have survived for decades after a transplant. But dialysis is different. It is at best a compromise in terms of replacement of renal function. And I also have many of the co-morbidities associated with long term kidney disease.

So, I scoured the mailing lists online to be able to find an answer to this question. Well, I wasn't looking for an exact answer but at least some indication. I wasn't depressed about this or anything. I just wanted to be able to plan my life better. Fortunately or unfortunately, the answers on the mailing lists were all vague. 'People have lived for long on dialysis'.

Then, yesterday I met Joseph Rajshekhar. And everything changed.

Joseph has been on in-center hemodialysis for the last eighteen years! No transplant. No PD. Only in-center hemo.

This gave me a lot of hope and cheer. If someone can live for eighteen years (and still going strong, touch wood) on thrice a week hemodialysis in-center, my odds of living much longer are pretty good! I am doing daily nocturnal home hemodialysis, after all!

And if I can survive for long enough, who knows, Soliris might become accessible and I might be able to get a good transplant. Then, what else could I ask for? I could live for centuries! Hehehehe!

So, it will be some time before I sign off, folks!

Wednesday, November 3, 2010

Dissent is ok

Many organizations are managed by a group of people. This is true of companies, non-profit organizations and social communities among others. In these organizations, among the management, I feel it is all right, even healthy, to have dissent.

Let me explain. Let's say, a decision about some important issue is to be made. Among the multiple managers of the organizations, it is not always necessary (or desirable) for all of them to hold the same views. It is natural for them to have differing opinions.

The important thing to do is to hear everyone out and then take a decision that the majority supports. I believe that consensus should never be the objective.

Many people believe that Sardar Patel would have made a better first Prime Minister of India. This did not happen due to Gandhiji's obsession with consensus. He wanted the Prime Minster to be chosen unanimously. So, even though Patel had the backing of a majority of the Congress committee, Nehru stayed silent when Gandhiji asked one of them to step down in favor of the other. Patel, despite having majority support, stepped down. So, had Gandhiji not insisted on unanimity, the course that India would have taken would have been very different!

I believe that consensus is not good always. It is important to have dissenting notes provided they are healthy and do not result in acrimony and jeopardize the functioning of the organization.

Tuesday, November 2, 2010

One hospital versus best doctors

Kidney disease often ends up being a multi-disciplinary thing. A nephrologist is not the only person you need to consult. With long term kidney disease, there are some conditions that could need you to consult a cardiologist, a neurologist, a hepatologist, an orthopedician, a dermatologist, a urologist and a vascular surgeon among others!

Most of these referrals will be by your primary nephrologist. Now there are often two choices in front of a nephrologist. He could either refer you to someone from the hospital you see him in or where he primarily works or he could refer you to who he thinks is the best (or at least very good) in the city.

Both these approaches have their pros and cons.

Referring you to the best in the city may be good because obviously you are seeing someone who is likely to advise the best course of treatment. However, as is almost always likely, there will be a need to consult the nephrologist because these kinds of things are not always black and white. In these cases, it could be better for both to be a part of the same team, in the same hospital. Things becomes much easier to discuss.

I see my nephrologist mostly at his clinic and rarely at his primary hospital. He inevitably refers me to the best in the city or to someone he thinks is very capable. He initially leaves the choice to me. And I invariably ask him to recommend someone.

As a result, I now see specialists in about five hospitals in the city! This might, at some point, becomes a logistical nightmare as it will be impossible to get these doctors to come together to discuss anything!