## Sunday, February 28, 2010

### Simultaneous equations and a little bit of Chemistry

How much of 4 g/l Calcium Chloride solution should you mix with how much of of 9.33 g/l Calcium Chloride solution to obtain 20 liters of 8 g/l Calcium Chloride solution?

This was the question I had to answer yesterday. And believe it or not - my life depended on it!

Rewind to a few days back.

I had this aha moment with regard to my bone pain when I discovered that the vendor was supplying extremely low Calcium acid cans (with 4 g/l of Calcium Chloride as opposed to a regular strength of 8 g/l) for my dialysis. This was causing Calcium to be pulled out from my blood which was, in turn leaching a whole lot of Calcium from my bones causing the bone pain.

I switched to high Calcium acid cans (with 9.33 g/l of Calcium Chloride) to try and correct the deficiency. But this caused my blood Calcium levels to sky rocket which is also not good. In fact it is quite risky to have your blood Calcium above normal. So, I had to switch to a regular Calcium acid can. I ordered these and started using them.

But I also had a whole lot of low Calcium acid cans (4 g/l) and a whole lot of high Calcium acid cans (9.33 g/l). I had to make the regular Calcium acid cans (8 g/l) from these. Which brought me to:

How much of 4 g/l Calcium Chloride solution should you mix with how much of of 9.33 g/l Calcium Chloride solution to obtain 20 liters of 8 g/l Calcium Chloride solution?

Hmmmm. Should be pretty straightforward, I thought.

Let x be the amount of low Calcium acid and y be the amount of high Calcium acid. One can of acid has 20 liters. So:

x + y = 20

Now, to do a Calcium balance:

4x + 9.33y = 8 X 20

or

4x + 9.33y = 160

When you solve these simultaneous equations you get:

x = 5 and y = 15

Basically I had to mix 5 liters of low Calcium solution with 15 liters of high Calcium solution to get what I wanted!

(P.S. I initially made a mistake and in the second equation, put only 8 on the RHS. I was about to start the mixing with the results of this equation when I thought I should get this checked by someone. This was serious, after all. I called Aditya (a genius and my friend from more than 28 years) and explained the problem to him. After a little bit of a protest - I was making him remember things from eons back - he gave me the correct answers and I also realized the mistake I had made.)

### Samples ready, courier to pick up on Monday

Thankfully, the drawing of the blood and the preparation of the samples went off well yesterday. The samples are all ready in cold storage between -20 and -80 degrees centigrade waiting for the courier company to pick them up on Monday at 4 p.m. when they will begin their 60-odd hour journey to Bergamo, Italy.

## Saturday, February 27, 2010

### Second shot at sending samples

Today I am going to the lab again to have my blood drawn and processed to be sent to Italy. I think we have everything covered. For one, we will be drawing the blood and processing it (extracting the serum, plasma and buffy coat) today and storing everything between -20 to -80 degrees centigrade.

On Monday, around four in the evening, the courier folks will be picking up the samples to ship to Italy. Last time, the problem was with the buffy coat. We needed special tubes to extract this layer. When you centrifuge the blood samples, the blood separates out into three layers - plasma, buffy coat and red blood cells. The buffy coat which forms the middle layer is very less compared to the other two. So, it is difficult to extract. There are special tubes called PCV tubes which are used for this.

Last time, they realized that they needed these tubes well after drawing the blood. This time, we have pre-ordered the tubes and delivered them to the lab already. The lab team is coming on a Saturday especially for me. This will help because there will not be any other patients and they can totally focus on my stuff.

Let's hope everything goes well!

## Wednesday, February 24, 2010

### The sample sending screw-up

Everything was set up perfectly. I got an extra session of dialysis on Sunday night. Monday morning I was to have my blood drawn to be processed and sent to Bergamo, Italy for genetic testing to help determine the chances of success in a transplant and the course to take before, during and after the transplant. I was to fast for 12 hours prior to having my blood drawn. This had to be done on a Monday to give enough time for the samples to pass through customs and reach the lab at Bergamo before Friday as they would be closed over the weekend.

I had talked to the lab here that would be doing the processing. I repeatedly checked with them if they had everything in place. They assured me that they did. I had talked to the courier people. They had all the clearances in place. It was after all a big deal to be sending blood outside the country for testing.

The plan was for me to go down to the lab around 10 in the morning fasted for twelve hours. The blood would be drawn. They would process it and store it between -20 to -80 degrees centigrade till 4 in the evening when the courier guys would pick it up and pack it in 15 kgs of dry ice with a temperature logger that would record the temperature throughout the 60 odd hour journey from Hyderabad to Bergamo.

I went as planned to the lab at 10. There was some initial delay in getting the tubes to draw the samples. Eventually my blood was drawn around 11. They then asked me to leave. They had to prepare serum, buffy coat and plasma from the samples. They said it would take an hour or so and they would get the samples ready and store them at -20 to -80 degrees centigrade and asked me to come back around 3:30 so that they would show me the samples and we could hand it over to the courier folks at 4.

I was a little worried about having them do everything themselves without me being involved. This was a very critical thing and I did not want anything to go wrong. But I had no choice. I would not be allowed anyway where they would be processing the blood. So, I left.

I suddenly got a call around one in the afternoon. The doctor from the lab said they needed some kind of a tube urgently. They had only one and they needed five. He asked me to send someone over immediately. They would give him the one tube they had and we would need to procure five more. I had my father rush down to the lab and try and co-ordinate. There was little bit of a panic as they did not know where the tubes would be available. Eventually they called the vendor who supplied them the tubes and asked them to drop off the tubes to the lab.

I reached the lab around 3. The tubes had not yet arrived. After some waiting, the tubes finally arrived. The techs took the tubes and went to complete the processing. It was around 3:30. The courier guy came with the packing. We got everything ready. I handed over the check and the remaining documents. It was 4:30. We were running out of time. The techs returned with the samples.

"We'll have to cancel the shipment today", she said. My heart sank. "Why?" "We did not get enough buffy coat from the EDTA sample. There's no point sending an incomplete set."

The problem was these techs at the lab were doing this kind of a thing for the first time. They themselves were not sure about how to prepare these kinds of samples. So, this was not their fault at all.

All the effort, all the preparation came to naught. I will have to plan better and do the whole exercise again.

## Sunday, February 21, 2010

### Another water intake reduction tip

People on dialysis need to control the amount of water and other fluids they drink. Yes, yes, I know. Get on with the tip, will you?

Recently I tried the imli goli - a small concoction of tamarind pulp and sugar rolled into small round balls and packed. I found that this reduces my urge to drink water greatly. I like the taste too. It is a mix of sour and sweet in just the right proportion. I used Altoids at one point. But they are not natural and I was a little skeptical about using something like that to control fluid intake. The humble imli goli is a much better option. Totally natural. Totally safe. Very effective.

There are two things about the imli goli that make it so effective. One is its sour taste. I have seen that sour things generally make you drink less water. Altoids sour drops were very effective. Their Raspberry sours, Apple sours and Lemon sours were great. The problem was they are not natural and moreover not available in Hyderabad. So, I used to have my brother who travelled frequently to the US to bring them for me.

The other things is imli or tamarind has an astringent (causing a dry puckering mouthfeel) quality. This by itself causes you to feel less thirsty and reduces the urge to drink water. Tea and amla (gooseberry) are two other things with a similar quality. When I have a cup of tea, I can stay without water for hours. So, look for things that have this astringent quality.

The imli goli is my current favorite. I have about four small golis a day and this has reduced my water intake a lot.

You're on nocturnal. Why do you need to worry about your fluid intake?

Now, that's an entirely different matter!

## Friday, February 19, 2010

### Rumor mongering

"Kal assembly par attack hai na, saab", our Man Friday, Ram Murthy said this evening as he was leaving home after dropping some stuff we needed. "Tomorrow the assembly is going to be attacked, sir".

"Kya?", I asked shocked, wondering if Pakistan had decided to call off the dialogue scheduled to start soon and went into super-aggressive mode! It didn't make sense, however. They wouldn't have announced it, for sure! And that too, the AP state assembly? Nah.

I asked him however. "Pakistan attack karne wala hai?" "Is Pakistan going to attack the assembly?"

"Nahi saab, yeh Telangana wale".

"Ohhh", I was relieved! The Telangana agitators have planned to lay siege to the AP state assembly on Saturday. There is a difference between 'laying siege' and 'attacking', I wanted to explain to him. I let it be. I realized later that he was trying to get us to declare a holiday for our shop so that he could get a day off!

Ram Murthy is not alone in his quest. There are folks at my office who actually love to break news to the rest of us about the "city burning" or "tension (that) grips the city" hoping somehow that the management declares a holiday!

## Wednesday, February 17, 2010

I have noticed a sharp rise in the number of spam comments on this blog. I thought that should be near impossible to do because you have a captcha (where you have to type out a word that is shown as an image) before being allowed to post a comment.

Despite this, almost everyday I have at least one junk comment waiting to be deleted. I have no idea how they manage to do this! How can you get a program to read a captcha?

They probably use a real human to log in to a Google account and then use the session id to go and spam hundreds of blogs! What purpose does that serve, really? Anyway the comments are easily distinguishable from the real ones.

Anyone has any clue?

## Tuesday, February 16, 2010

### Is it really that big a deal to send a blood sample out of the country?

I need to get my blood tested for some genetic mutations (defects in my genes) that will tell me first - whether it is worth the hassle of going in for a transplant and second - if I do go in for a transplant, what line of treatment should be followed. These tests are not done in India. They are done in Europe and the US (possibly other countries too but I am not sure).

I was in touch with the Mario Negri Institute at Bergamo in Italy which has the brilliant Prof. Giuseppe Remuzzi and his associates who in an extraordinary gesture agreed to do the tests absolutely free. I was the recipient of such largesse once before too when I had my blood samples tested for a similar set of genetic defects in the UK at the University of Newcastle upon Tyne (Dr. Tim Goodship and his associates).

It is really great that these labs agreed not to charge anything for performing these very special tests.

The tough part was getting the blood to them. Huh? What can be difficult about getting the blood to them? When I sent the samples to UK, I was lucky because I had an uncle who was traveling to the UK around the same time. So, I sent the samples with him and he shipped it to Newcastle upon Tyne after reaching London.

Unfortunately none of my uncles stay in Italy!

So, I had to use the official route. Which, to my horror, turned out to be very painful. I had to first have my doc open an account with a courier company. I then had to get innumerable papers printed and signed by my doctor on his letterhead. In the middle, I almost had to go to the Shamshabad airport to meet with the Additional Drug Controller for the region (I have no clue why). All this to be able to send my blood sample for tests. In hindsight, I feel it would have been easier for me to simply take a flight out to Italy myself and have the blood drawn out there itself.

Anyway, looks like its all done now. I have everything in place. I am planning to send the samples on Monday. The samples have to go at a temperature of -20 to -40 degrees centigrade, the temperature maintained by a huge quantity of dry ice. I am paying five thousand rupees extra so that I get a log of the temperature of the samples at different times during their journey from Hyderabad to Bergamo! I want to be assured that the samples have reached in perfect condition. This is, after all, going to help me make the most important decision regarding my health - and life.

## Saturday, February 13, 2010

### Creative freedom

I was recently given some additional responsibilities at work. At first, I was a little apprehensive about the nature of the work. I was enjoying my current work - which was basically full time development - software coding. This was more on the creative side, more marketing related. I had a meeting with my manager. He gave me complete freedom to do the work the way I wanted. I was enthused.

I got down to the task at hand. I looked at what we had currently. It was pretty bad. I felt an overhaul was needed. I got down to putting together something from scratch. I started enjoying it thoroughly. I never thought I would enjoy something like this so much.

Its not as if I have never attempted something like this before. I think it was the freedom to build this the way I thought was appropriate that did it.

In any job, I feel, the amount of freedom a person gets largely influences his efforts and his enthusiasm. If the boss keeps telling you what to do, well, she might as well do it herself. It is extremely important for a person to use his head while doing his work. Merely listening to what your boss has told you to do and then doing it can become very boring and frustrating in the long run.

On the other hand, if your boss tells you the larger objectives of the work and then allows you to fulfill those objectives in a manner you think right, the results can often be stunning. Each person has a creative side to him. It feels nice to use it. When you have achieved the objectives in the end, it feels really great because you have done it. Not merely followed what someone else told you to.

## Friday, February 12, 2010

### Why me? An answer at last!

I recently stumbled upon a site for atypical Hemolytic Uremic Syndrome (aHUS), the disease that I have. It is such a rare disease - there are only about 300 people who have this disease in the US. A very small part of that group are adults. Most are children.

I found something extremely interesting on the site. For years I have wondered why I got this disease. It happened immediately after the vaccinations which were a prerequisite for foreign travel. I was scheduled to go to the US for my Master's. The day before I was vaccinated, I was totally all right. In fact, I remember going for a swim at the Secunderabad Club where I swam. I was totally normal. The next day I took these vaccinations. Boom! Within a day or so, my kidney function deteriorated and within a week or so I was on dialysis. So, when you look at the sequence of events, it does suggest that the vaccines had some role to play.

No doctor would suggest this however. They would all be equivocal. They did not know. I was doubtful myself about this because thousands of other people had taken the same vaccinations. Then why was only I affected? This remained a mystery all these years.

On this site, however, as I was going through the forums, I chanced upon a thread titled "Vaccines". I went through the thread. I was shocked to read that there were others too who had been affected with the disease after getting vaccinated! I have been digging up a lot about the disease over the past couple of weeks. This is what I found:

There are some defects in the genes of people who have aHUS. The defective genes have been identified for about half the cases. Slowly, the other genes are also being identified. These defective genes cause a person to be 'more predisposed' to getting aHUS. It does not mean that every person who has these defective genes will get aHUS. But it does increase their chances of getting aHUS.

This is where triggers come in. There are some triggers like infections, vaccinations and pregnancy that could cause the disease to be activated.

So, here's the story in my case: I probably have one of the genetic defects that have been implicated in aHUS (or will soon be). The vaccinations actually triggered the disease. So, it is possible that I could have escaped the disease had I not got vaccinated. And the others who got vaccinated did not get the disease because they did not have the genetic defect.

Interesting, no?

But, I feel relieved that finally I have some logical answer to the biggest conundrum of my life - why did I get this disease!

## Wednesday, February 10, 2010

I follow a number of blogs. I used Safari earlier where I had a folder of bookmarks that had their RSS feeds and would show the number of unread posts. If any blog had one or more unread posts I would open it in a new tab and read the posts.

I then explored some specialized RSS readers for this purpose. I tried NetNewsWire for while. This was good but the problem was I use a different laptop at home and at work. This made it a nightmare since I would end up seeing the same unreads when I got back home.

The natural progression was to a web based RSS reader. Google Reader, I concluded would solve my problem. So, I let yet another Google product take over my life. It is amazing how much of Google I use daily! Without paying them a single paisa. And that's the scary part. I can't even blame them when the browser title says I have one unread post but the list shows no unread posts. I get it free, right?

But that is not my problem. My problem is 'the context'. A blog has much more to it than the post itself. On an RSS reader like Google's or NetNewsWire, all you see is the boring standard interface of the software or the site and the blog posts all come in plain text with the images that belong to the post itself. No background the blog owner has put. No provision to view the comments. No provision to comment either. Which makes the whole experience a tad too impersonal.

Does anyone know of a web based RSS reader that allows you to view new content 'in context'. What I want is to be able to do this: whenever I open the site and log in, it should show me the list of feeds that have unread items. Clicking a button should open the home pages of all those feeds. Is this really a need unique to me? Cannot be. Please let me know if you have come across anything that does this.

## Monday, February 8, 2010

### Being proactive about my health - no choice in the matter

I have been doing a lot of reading up, analyzing and documenting aspects related to my bone pain. The results have been promising. I have actually been able to figure out something that the doctors have been flummoxed by. Honestly, without being modest at all, I don't think what I have come up with is anything out of the ordinary. Anyone, with basic common sense, and more importantly, the willingness to put in the time and effort could have arrived at the same conclusions as I did.

Then why did the doctors not give me the breakthrough? After all, they have studied this stuff at medical college and they have been in this field for years now. If anything, the solution should have struck them as soon as they heard about the problem. This did not happen. Why?

The problem is time.

Doctors I interact with and who treat me simply do not have the time. They do not have the time to look at an individual's case, think about the problem and analyze it from different angles. They are dealing with so many people like me with a gamut of problems. If they had to spend the amount of time required to actually solve these kinds of problems, they cannot even give the minimum amount of time required for each patient.

Where does that leave the patients?

The vast majority of patients I have come across are not familiar with computers or the internet. They continue to manage with the bare minimum advice they receive from their doctors. If they are stuck with a problem that is not being diagnosed correctly by their docs then they simply continue to suffer. They have no recourse.

For people like me, the internet turns out to be invaluable. Almost life-saving. Using the internet, I have a wide range of resources at my disposal, access to cutting edge information and also the opportunity to reach out to experts in the field who are often kind enough to respond helpfully to someone they have never met, never seen, do not know and someone who is possibly half way round the globe.

Its simply a matter of being willing to put in that extra effort to help yourself. Who benefits but you?

The next step for me is to find out all I can about a potential transplant. Just what is this disease - HUS - that is so predisposed to recurrence after a transplant? What can be done to avoid recurrence after a transplant? What immunosuppression regimen is best in my circumstances?

I have a busy few weeks ahead!

## Friday, February 5, 2010

### Its all falling into place

First a little bit about PTH and its role in the human body. This is interesting. Bear with me for a bit.

The most important purpose of the Para Thyroid Hormone (PTH) to exist in the body is to control the Calcium level. Calcium is a very important element in the human body. It has a number of uses which I am not going into now. But it is really, really important. So important that there is a small organ (glands, really) that secretes this hormone just to control the Calcium level! The whole mechanism acts like a thermostat. Too little Calcium in the blood, the glands secrete more PTH which pulls out more Calcium from the Calcium stores in the body - the bones. Too much Calcium in the body, the glands reduce secretion of PTH which causes the Calcium from blood to go back into the bones.

Understood?

So, now my PTH has been pretty high. It was almost 20 times the normal in May last year. Guess why? Too little Calcium in the blood, I hear you say, having understood the last paragraph pretty well. Correct! You're getting good at this. Why did I have so little Calcium. Low Calcium dialysate remember?

The problem was we (the docs?) did not think that it was due to the Calcium being low. The blood work showed that the Calcium was normal. Hint: blood tests often don't show things until they're really bad, the body kept correcting the blood Calcium level by leeching my poor bones which shouted out in pain when they could take it no more!

We kept attributing the high PTH to "long term effects of kidney disease". We kept trying to correct it with Cinacalcet, an expensive drug which attacked the symptom (high PTH) rather than the cause (low Calcium). At one point I was taking a whole lot of Cincalcet because of which the PTH did become low but it was a lost cause because the real reason was elsewhere. The moment I reduced the dose, it would rise again.

For the last 15 days, I have switched to a regular Calcium dialysate (a couple of days of high Calcium in between) and was on a high dose of calcitriol for a few days and now back to the regular dose. Guess what has happened to my PTH? Become normal, you ask again, and I commend you on your reasoning! I thought it would too. But hold your breath - it has actually become BELOW NORMAL!!!

My PTH is at 4.7. Gosh, that's really low. The journey from 1015 to 4.5 has been quite a rough one! But, it gives me the confidence that my reasoning was right. We should have stopped using the low Calcium dialysate long, long back. Well, getting the PTH back to normal shouldn't be a problem.

I am really glad its all falling into place!

## Wednesday, February 3, 2010

### Why Apple should not support Flash on the iPhone - for now

I had this strange problem in my Cocoa app today. There is a WebView in which I am showing some Flash content (using a third party graph generation utility). Whenever I ran the app, as soon as I accessed the screen that had this WebView, the app would crash!

I used the debug mode and went through the code step by step to figure out where the problem was. Surprisingly, the app worked fine when I was in debug mode! I tried different ways and means of accessing the screen and the content. No problem in debug mode. I then ran the app in Run mode. Crash again!

I was perplexed. What could be the problem? I looked at the logs. There was a "Debugger() called" every time the app was crashing. Since Google is my friend, I used it.

Bingo!

Found the cause. There was a blog post by a Stinkbot that outlined the problem:

"Apparently, in the new Flash 10 release, somebody left a call to Debugger() in the code. This is in the final, non-beta Flash 10. I’d expect calls to Debugger() in a beta, but to leave that in a final release does not inspire confidence in the rest of the code."

I had to tell Xcode, my IDE not to stop on Debugger() (In Xcode, Run Menu -> Stop on Debugger() -> uncheck this). This fixed the problem. Well, a workaround at least.

Steve Jobs has said that Flash is buggy and leads to Macs crashing. That's the reason they are not supporting Flash on the iPhone and the iPad. I can see what he's saying. I totally agree with him. Heck, even Jayadeep Thum (who has nothing but disdain for Apple and anyone else who makes money out of writing software, ok, ok just kidding JD!) has said, "I am with Steve on Flash. Flash is buggy. Especially on Linux. Adobe should fix it."

## Monday, February 1, 2010

### NxStage arrives in the Middle East

I was thrilled this morning to learn that NxStage through their partners Kimal are launching the System One, a portable hemo dialysis machine in Dubai and Saudi Arabia. Bill Peckham wrote about this here.

This is excellent news. I have been waiting for this machine to be available in India. It is now available in the US, UK and the Middle East. India shouldn't be too far behind, I am hoping.

There are two barriers to home dialysis in India - costs and perceived risk.

The cost of dialysis and the fact that a large number of people have to pay for their own treatments might dissuade someone from introducing systems like this in India. Costs, however are not a problem for some segments of the population. When you look at the size of the population, even a small percentage of this is good enough for a large number of potential home dialyzors.

The second and more important barrier is the perceived risk of dialysing at home. I say 'perceived' because dialysis at home is typically done more regularly and for longer hours. This makes the dialysis process more gentle and less risky. Less fluid is removed, the flow rates are less and the chances of any serious problem arising gradually diminish.

What is needed is patient education. Patients and their families must be educated on the benefits of more frequent and longer treatments. When they see (and feel) the benefits, adoption cannot but be widespread.

I am now hopeful that NxStage will bring the System One to India sooner rather than later. I'm keeping my fingers crossed!