Wednesday, May 26, 2010

What a bloody night!

Just when I thought everything was going well, last night happens.

I awoke with a start when the dialysis machine gave an alarm. Instinctively I pressed the Mute button. I thought it was morning and the session was done and the machine was signalling completion of the session. I switched on the light and woke Jayaram up. As I was getting ready to get up and close treatment, I suddenly noticed that there was blood oozing out of my arterial site. The blood was trickling out quite fast from both sides and the arterial needle was half out. The tapes had become loose.

Jayaram tried to put the needle back in but it came out completely in the process. He then took the needle and was about to insert it back in. I asked him what he was doing? He said he was cannulating. It was then that I realized that it was only 3:30 in the morning and the machine alarmed to signal that something went wrong and not that the session was completed.

I also realized to my utter horror that almost half my T shirt was soaked wet with blood. So was a part of the bed sheet. Jayaram then inserted the needle back and taped it securely. Dialysis resumed.

I was very upset but managed to go back to sleep.

When the session actually completed, I realized the amount of blood I had lost. The leak probably went on for about 15 to 20 minutes at least (maybe more) because the left side of my T shirt was wet with blood and so was a part of the bed sheet. I changed into a another T shirt and threw the wet T shirt and the bed sheet.

I am totally at a loss as to why the needle came out in the first place. No new tape was used. The taping method was the same I've been using for years now. My hand was tied just as every day to prevent excessive movement.

I thanked my stars that Jayaram was there. I have no idea what I would have done if he wasn't there. And Sunday nights I have been dialysing without Jayaram around.

This kind of a thing can happen on nocturnal. The question is handling the situation in a proper manner. Training is the key. Which I haven't had. And probably may never have. Training specific to patients dialyzing alone at night. Many countries have it. The US does, Australia, New Zealand, Even Hong Kong and other countries in South East Asia. Dubai does too. Why can't India have it? Why?

Monday, May 24, 2010

True daily dialysis

I never understood why people did not dialyse truly daily. Whenever you talk about daily it is at best six times a week. Never truly daily.

Probably because most people do not have Jayaram to help them! I have had this expert technician come home for the last four odd years and help me start and close my dialysis session and also take care of any problems that might arise. He also taught me to start and is now teaching me how to close.

Most other people either do it on their own or have a close relative or friend help them with it. So, I guess they feel like taking a day off. Understandable.

Jayaram takes Sundays off. I also do not work on Sundays (and Saturdays too). The problem with this is that I am idle almost the whole day and then go for a movie and dinner out with my family. Invariably this leads to excess fluid consumption with the result that I usually feel a little uncomfortable on Mondays. My chest feels a tad heavy. I also stopped swimming on Mondays.

Then it struck me. Why not dialyse on Sundays and take another day of the week off? Heck, why bother taking a day off at all? Why not dialyse every day of the week? Starting wasn't a problem since Jayaram anyway came most days after I started. There hasn't been any problem during a session for the longest of time. It's only the closing that is a little tricky and I have yet to master this. I convinced Jayaram to come on Monday mornings, close to the time of the session finishing.

For the last few weeks, I have been dialysing every night of the week. My Mondays are much better. Another example of a small tweak in processes making a dramatic difference!

Saturday, May 22, 2010

Small tweaks in processes often change things dramatically - 2

Yesterday I wrote about how a small change in a process changed things dramatically in a software project. Today I am going to write about how a similar small tweak in process in my life changed things dramatically.

As you know, I have a technician that comes home to help with my dialysis. I am on daily nocturnal home hemodialysis. I dialyse every night of the week for about 7 hours on an average. For about four years now, Jayaram, the technician has been coming and starting my dialysis session and then closing it in the morning when the session completes. Jayaram is excellent in his work. He knows dialysis in and out and can handle any situation with ease. I have been slowly learning the process myself so that I can start dialysis myself. This gives me the freedom to start when I wish and not delay my session should Jayaram get late due to whatever reason.

I learnt how to start dialysis eventually and could do it myself. It was a pain however. After a hard day's work, to come back home and then have to do something which takes a good 45 minutes is not something I look forward to. However, the fact remained that I liked the flexibility it offered.

I did a little thinking. I found that there was one part of the process, the preparation of the bicarbonate solution that is used during dialysis that was the most taxing of all. It wasn't a very important part of the process too. It simply involved mixing of a few packets of powder in pure water and then pouring the solution into a can and then carrying it to the dialysis machine. I found this whole process very troublesome. I had to bend a lot while mixing and pouring and also, carrying a 20 litter can was quite a struggle.

I had to outsource this somehow!

I got Ram Murthy, our family handyman to come home one day and taught him how to do this. I figured that if he could do this, I could easily manage the rest of it. Ram Murthy picked this up quickly. Ever since, he has been coming home around 8 in the evening and preparing the bicarbonate solution. This has become a part of his job responsibility.

This small tweak in the process has made life much easier for me. I got the desired flexibility to start dialysis whenever I chose to and I did not have the burden of preparing the bicarbonate solution.

Often, in our daily activities, there are things that can be simplified and made better by such small tweaks. We just need to step back a bit and do a litle carefull thinking. The results will surprise us.

Friday, May 21, 2010

Small tweaks in processes often change things dramatically

While developing software and as I found recently, in life too, small changes in processes can sometimes lead to dramatic changes for the better. I will illustrate this with two examples - one from a software project and the other from my life.

In Effigent, there was project that was becoming a pain for all concerned. The onsite team was continuously frustrated with the lack of productivity of the offshore team. The offshore team was frustrated because despite putting in long hours and working really hard, there were no results. The customer was also unhappy with the work being done.

A little study of the process by the head of operations in India revealed a problem. What was happening was that the tasks for each day were being assigned to the offshore team by the onsite team in a call every morning. The call went on from about 10 in the morning till noon. This was because there would be detailed discussions on the requirements. Around noon, the team would start their work, half tired with the long meeting that had just concluded and almost half their day already gone. They would then begin coding and testing. Invariably the day would stretch to late night. This continued day after day.

The head of operations in India introduced a small tweak to the process being followed. He mandated that the tasks for the day would need to come to the team by 9 am that day in the form of a document that had detailed explanations of everything that was to be done that day. The offshore team would go through this document and there would be a call only if necessary to clarify things that were not understood by the offshore team. This call should ordinarily not be necessary at all and should be had only once in a way. The document should be good enough to ensure this.

This worked like a charm. The offshore team would come in by 9. The document would be waiting for them. They would go through the document and get started with their work immediately. They would be done with their work by evening and very rarely did they need to stretch beyond a point.

This shows how a small tweak in the process helped so much. Tomorrow, I will give you an example from my life on how a similar small tweak in a process in my life helped change things dramatically as well.

Thursday, May 20, 2010

Change of guard

Hasmukh - and there couldn't have been a more apt name for the guy - my manager at Grene, leaves the company today after a year. Bharat, my colleague takes over as head of our team. Both have very different management styles.

Management of a team that primarily develops software is more of enabling your team to do their work. A successful manager makes sure his or her team gets the best possible environment, with as little distraction as possible, to complete their work. A good manager stays out of the way as far as possible. He - and I'm using an entirely random gender here - does not make his team file unnecessary reports and attend irrelevant meetings. These are strictly on a need-to basis.

A good manager understands what each team member's strengths and weaknesses are and makes them work on tasks that he or she are good at. A manager is an interface between the higher echelons of the company and his team. The manager must represent his team's interests to the higher ups. At the same time, the manager must also properly convey the management's vision to his team.

Managers are often responsible for an individual's career growth and that is a very important responsibility. I have seen many managers ruin budding programmers by simply not recognising their talent. This is really unfortunate. Not only are they losing out on a good opportunity to get good work done, they are also causing a lot of frustration in the team

Here's wishing Bharat a good tenure as Head, Solutions Team at Grene!

Saturday, May 15, 2010

Voilà! I am using a BSNL 3G sim on my iPad 3G!

Apple's iPad 3G comes with an AT&T microsim. India's only 3G service provider, BSNL uses the regular sim for their 3G service. I recently got myself an iPad 3G. I planned to wait until someone launched a good 3G service, hopefully with a microsim and then latch on to the 3G bandwagon.

Then, one day, in my daily Google alerts on the iPad, I came to know about John Benston who actually cut his regular sim card into the shape of a microsim, carefully making sure that the important parts of the sim are preserved and properly aligned. He was in the UK and he used a Vodafone sim successfully on his iPad.

Yesterday, my boss at office arranged a BSNL 3G sim and asked me to take a shot. The sim looked very different from the AT&T sim. I had very little hope of it working.

About an hour back, I took a knife that we use in our kitchen and a pair of scissors. I then aligned the BSNL sim with the important parts of the bundles sim on the iPad and cut out the extra portions. I then cut the top side corner too and tried to put it into the iPad's sim tray. It wouldn't fit. I needed to finely trim out small bits from here and there. The sim then fit into the tray.

Next was the crucial test. Would the network work? It's all fine to cut a sim and put it into the iPad. Had I cut out some wrong portions? Were the important circuits still in place?

I went to the settings and gave the APN - bsnlnet.

Then waited patiently.

There it was! CellOne 3G on the top left corner of the iPad!

I was thrilled! I tried opening a few sites (I had previously disabled Wifi) and it worked!

So, there you are. It's official - the iPad 3G can be used with BSNL's 3G service!

Wednesday, May 12, 2010

Why is PD given step-motherly treatment by nephrologists?

I met a 24-year old guy a couple of days back. He was diagnosed with kidney disease about 5 months back and has been on hemodialysis ever since. They are trying a dose of steroids to see if his native kidneys revive. Till then he will have to be on some form of dialysis.

I asked him if they had considered Peritoneal Dialysis (PD). He hadn't even heard about it! I wasn't surprised. I knew about this step-motehrly treatment given by nephrologists for some inexplicable reason.

Just what is it about PD that makes it a second class citizen in the eyes of nephrologists? I am really not sure.

I wasn't told about PD at all. I got to know about it from the internet. Sadly, what was in 1997 hasn't changed even after thirteen years. The number of people on PD has definitely increased since then. But the increase can be described as pathetic at best.

I am a huge believer in Peritoneal Dialysis. I would, honestly, have never survived this long if I was on conventional, in-center hemodialysis. The punishing diet and fluid restrictions along with the process of dialysis itself with the two thick needles in your arms and the four hours of severe boredom can play havoc with your mind along with your body. PD, for me was the savior.

There are people who can't stand PD. They hate the thought of having a tube sticking out of the stomach. Which is totally all right. To each his own. But atleast give the option. Let the patient decide. Explain both the options and let the patient decide. Why make the decision yourself?

This is really unpardonable. I have no idea why this is done. Why, just why, don't nephrologists tell patients about PD?

Monday, May 10, 2010

An iPad and some dhokla

(This post is purely fictional and any resemblance of the names to any living person is mere coincidence.)

iPad launched in India
Hyderabad, 10th May 2010, By our special correspondent.

Apple's path-breaking new product, the iPad was launched at a private gathering in Hyderabad. The gathering was attended by representatives of the top IT companies of the city like Infosys, Pramathi, Prithvi, Magnettic and Wells Fargo. The launch was preceded by a brunch for the attendees.

Speaking on the occasion, Mr. S. Ramakrishnan of Prithvi summed up the iPad thus: "????????????????". That was what most could understand anyway. Mr. K. T. Reddy from Pramathi struck a discordant note when he stated, "Anyway, everything is copied from Linux." He could not elaborate, when pressed for a clarification, on what exactly was copied from Linux.

Ms. M. Singh, also from Prithvi was thrilled with the iPad and was enquiring about the price and other details. Mr. V. P. Naidu of Infosys chose to focus on the food instead. In an interview later in the day to Facebook, Mr. Naidu said, "zindagi mein nai khaayaa itna badiya dhoklaaa...... yaaaaawwwwsomee!!"

Fellow Infoscion, Mr. A. Srinivas and Mr. J. Vysyaraju from Wells Fargo were seen enjoying the audio and videos on the demo device. The quality was unlike that seen on any device.

Mr. J. T. Reddy of Magnettic, an ardent Linux user was seen ogling at the device rather secretively lest he be accused of liking a 'closed' product!

Try as you might, however, it is difficult to not like the iPad!

Friday, May 7, 2010

The three mistakes of my life - 3

That brings me to the third. This was big.

If you are following this blog from a few months and are not skipping the posts marked 'health' (I know many people do this!), you probably know that I am suffering from severe bone pain from a few months. This bone pain is a result of the biggest mistake of my life.

To refresh your memory, the story goes thus: My Calcium went high at one point when my nephrologist asked me to switch to an acid can which had 2.25 mEq/l of Calcium as opposed to a regular Calcium of 3 mEq/l. For a few months, I was supplied the correct Calcium in the acid solution.

After a while (due to changing a vendor and then returning to the regular vendor), I was supplied 1.5 mEq/l of Calcium in the acid which is horrendously low. For 8 months after that, I was using a terribly low Calcium in the acid. The bone pain is most likely due to this.

I did not check the label on the acid can. For eight whole months, I kept using the very acid that would screw my life forever. Currently I am walking with a really bad limp, my ribs ache even with a simple turn on the bed, coughing and sneezing cause a violent jerk on my lower back which causes a second of terrible pain.

I will not be able to do any trekking (which I really enjoyed in Coorg and Ethipothala very recently) until this issue is sorted out. To be honest with you, I have little hope that this problem will ever be sorted. I have this premonition that this is going to stay with me for the rest of my life (whatever that means).

And to think, that this was totally manufactured. It could have been easily avoided. When my PTH sky-rocketed, it should have been obvious that my Calcium was too low. But I don't blame anyone but myself. I should have read up more. Now when I think about it, with all the analysis and reading up on the internet, it should have been as obvious as the fact that when you add two and two together, you get four.

But it did not strike me. It did not strike anyone. Probably because in patients with CKD, hyperparathyroidism is a common side effect. No one could have imagined that my parathyroid glands were behaving perfectly normally. It was the Calcium that was causing the problem.

This, the third, was definitely the biggest mistake of my life.

Thursday, May 6, 2010

The three mistakes of my life - 2

Effigent, the company I worked for, had offcies in India and the US. In the US, the office was in San Jose in California and in India, the offices were in Hyderabad and Bangalore. I worked from the Hyderabad office. The US office had a small team because they primarily interacted with customers, got new business and co-ordinated with the Indian teams on the deliverables. The bulk of the work was done in the Indian offices which had a large number of people.

When I was on PD, there was a thread that I started about me going to the US. For me, there was only one reason to go to the US. Better medical care. I was convinced that the medical care in the US was better. I had interacted with doctors in the US who were experts on my disease and found that they were very dedicated to their profession and did a lot of research in their field. Yes, the system has its own set of problems but compared to India, especially when it comes to rare diseases like atypical HUS, the US is definitely a far better bet.

Obul, the CEO of Effigent thought it was a good idea to do this. From the company's standpoint, it may not have been ideal, however, because I was fairly critical to the operations in India.

We discussed this at length and agreed to chalk out a transition plan where I would hand over my responsibilities to someone here and then eventually move to the US. After a few weeks however, we could not find a suitable person to transition to. We then had another discussion where we dropped the idea.

The whole thing came up again in 2006. I was on daily nocturnal home hemo by then. I was desperate to travel freely again. I got to know about the NxStage System One, the portable home hemo machine. This was available only in the US. I wanted to use this machine really badly. I started the 'move to US' thread again. This time around too, everyone agreed. I started the processing of my US visa. After a lot of hitches, finally, I got my US visa. The hitches however, caused a lot of delay. The company was beginning to face financial problems. Another resource could not be afforded in the US. Slowly, this plan withered away too.

For me, the lack of decent travel is punishing. I thrive when I am travelling. I can travel now but only on short trips. And even on those trips, I need to restrict my fluids and diet. And if you have to do that, it is not too much of a vacation!

The second big mistake of my life was not to push Effigent hard enough to move me to the US. It was possible. It would have given me access to the NxStage portable hemo machine. It would also have given me the ability to use Soliris, the new wonder drug for aHUS. It would have given me a better shot at a transplant with enough plasmapheresis that would have prevented the aHUS from recurring. It would definitely have improved my quality of life either with a transplant or with the NxStage machine on hemodialysis.

Wednesday, May 5, 2010

The three mistakes of my life

I have made many mistakes in my life (haven't we all?). But three of them stand out as life-altering. Over this and the next two posts, I plan to explain why I think they were mistakes and how they turned out to be so significant in my life.

The first mistake

I was on Peritoneal Dialysis (PD) from March 1999 to September 2005. Peritoneal dialysis offered a freedom that I never got with any other modality of dialysis. No, not even with daily, nocturnal home hemo. There are two reasons I say this.

One is the ability to travel. PD offers unmatched flexibility to travel. All you need to do is to arrange for the fluid bags to be delivered wherever you are going. If the vendor does not deliver it there, you can pick it up at a place close by or in the worst case, carry enough bags with you.

I made a few trips within India during those years. The trips to Kodaikanal (twice) and Mahabaleshwar with my family were really good. I picked up the PD bags at Chennai and Pune respectively. I did PD exchanges on the trip without any problems.

It has always been my dream to travel to Switzerland. From many years, I have had this strong urge to go to this place. Don't ask me why! Switzerland had an inexplicable allure to it. It is difficult to put this in words.

Baxter, the company that supplied my PD fluid bags had, at one point, sent the details of a scheme to all its patients that explained about the arrangements they would make for us to be able to travel outside the country. They would arrange to supply the PD fluid bags to us at the cost that we paid here. This was huge. The cost of the bags would be really much more in other countries. We would not need to pay the higher cost. They would also take care of making sure the bags are supplied in time at the place we requested. We just needed to tell them two months in advance.

This was an opportunity like no other. I could realize my dream after all. I was excited.

What happened in the end however? I did not go. Why? I have no clue, really. I got busy with work. The plan simply got lost. Who but myself can I blame? It was truly possible. I goofed. Work would have gone on. The company would not have shut if I went. But somehow, I was not proactive and did not make it happen.

I could have gone to Switzerland and holidayed there without worrying about dialysis as I could conveniently do my PD exchanges right in my hotel room. I did not need to be near a dialysis center or worry about my diet and fluids at all. I blew it.

This was one of the biggest mistakes of my life.

Sunday, May 2, 2010

Kidney check up camp at Nephroplus, Hyderabad

Nephroplus, Hyderabad is organizing a kidney check-up camp where they will check your kidney function and a nephrologist will discuss the results. You will also get tips on how to keep your kidneys healthy. And best of all - its all free!

So, grab this opportunity to check if your kidneys are healthy. Kidneys are such an important part of your body. They work tirelessly 24 X 7 to make sure you feel comfortable. Yes, ask me!

Most of us do not realize this until our kidneys fail. The amount of work they do (apart from the publicized 'clean the blood') is mind-boggling. So, make sure you do everything you can to keep them healthy.