Tuesday, August 31, 2010

Italy institute could not extract DNA from blood samples

I just got an email from the institute in Italy where I had sent my blood samples to be tested for the genetic abnormalities that have been implicated in atypical HUS. I was hoping they could advise me about a transplant based on the results. Unfortunately, they were unable to extract the DNA from the samples.

The whole process of actually obtaining the samples in the desired form involved a lot of effort (you can read about that here, here, here, here, here and here). It cost me quite a bomb too. Though the good folks at Italy did not charge me anything for actually doing the tests, the courier cost quite a lot since the samples had to be sent at a temperature between -20 to -80 degrees centigrade.

I am at a loss. They have now asked to send the DNA samples directly. I need to check if there is anyone capable of extracting DNA samples here. Then I will need to figure out how to send the samples and then actually send them. This is so frustrating. I am sure the institute in Italy did their best and I am sure this was unavoidable. But for me, this is really frustrating.

It is not as if I can avoid doing the tests altogether. The results of this test will dictate whether or not I should go in for another transplant and if I should, then what regimen must be followed - whether plasmapheresis must be used or if they would recommend the new drug, eculizumab.

The problem with a rare disease is that not many people have any interest in finding out about it. Even if they find out something, how many people is it going to benefit? If my nephrologist spends time reading up about aHUS, how many people is it going to benefit? All of one. Me. Not worth his time. On the other hand, if he reads up about Diabetic Nephropathy, for instance, he will be benefitting a large number of people.

Where does that leave me? To fend entirely for myself.

Monday, August 30, 2010

Once you know the basics, its all about common sense

The basics (for folks on dialysis):

PTH is inversely proportional to Calcium
Calcitriol increases Calcium and therefore decreases PTH
Target Calcium - 8.5 to 10.5 mg/dl
Target PTH - 150 to 200 pg/ml

Hint to self: Try not to get off Calcitriol - since it has helped tremendously with my bone pain - Vit D is thought to have other unknown roles apart from the obvious role of improving Calcium absorption and PTH suppression

When I did my blood tests a few weeks back, my PTH was 448 pg/ml while my Calcium was 9.9 mg/dl. If I took more Calcitriol, my PTH would have come down but my Calcium would have also gone up which was not a good thing.

I could also have increased the Calcium conentration of my dialysate which would have brought my PTH down but that too (obviously) would have taken the Calcium way up!

Enter Cinacalcet.

Cinacalcet was a recent drug that would reduce PTH without increasing Calcium. (This got added to the Basics list.)

I started Cinacalcet 15 mg/day. (Credit to Dr. Girish Narayen, my super nephrologist!)

(Aside: He also asked me to stop calcitriol which I did not do….. ssshhhhh)

Results of blood tests yesterday:

PTH - 187 pg/ml
Ca - 10.2 mg/dl

So, I did manage to get my PTH down without increasing my Calcium too much! And I did not even stop Calcitriol! Yay!

So you see, once you know the basics, it is all about common sense!

Sunday, August 29, 2010

Wanted: A Nandan Nilekani for State Sponsored Healthcare

I just got back from the coupon distribution of the Jain Dialysis Trust which is held on the last Sunday of every month.  This event always leaves me full of mixed emotions. On the one hand, I see so many patients being benefited because these coupons are often the difference between life and death for them. On the other hand, I see a terrible lack of information about what constitutes optimal dialysis.

I overheard a donor ask a trustee about how many times a patient needs to undergo dialysis. I smiled in my mind. The classic question! How many times does a patient need to undergo dialysis?! Really. That is such a loaded question. Depending on the person asking the question and the person answering it, you could have totally different answers!

To someone totally uninitiated, how do you answer that question? To someone who has been undergoing dialysis for a while now, how do you answer that question? Most people I saw today find it difficult to even spend the Rs. 300 that they need to per session. They can barely manage to get 8 sessions a month. How do you then even begin to talk about things like more frequent dialysis and its benefits?

The trust itself is doing an excellent job by giving the gift of life to about 200 patients. What should their priority be? Better dialysis for lesser number of people or the minimum dialysis required for a larger number of people? Probably the latter. The more the number of lives you can save, the better, I guess.

What is the way forward? How do we change this?

Only the government can do something in this regard. It needs to get its priorities right. It is not as if it is an impossible task. Arogyasree has shown us that it is possible. All it needs is a little creative thinking and some balls. Instead of spending crores on things like the Commonwealth Games, the government should expand this scheme and introduce it across the country. Yes, there are problems with it. Make someone committed from the private sector in charge of it. Like they did by making Nandan Nilekani in charge of the Citizen Identity program. Give him or her a free hand. The results will be surprising.

Friday, August 27, 2010

Am I really hooked to dialysis?

A few months back I switched to seven days a week dialysis as opposed to taking Sundays off. The reason was simple. Weekends, I generally have little to do. I don't go to work. I usually eat out or go for a movie with my family. As a result, I tend to have a little more fluid than usual. So, if I don't dialyse on Sunday nights, sometimes on Mondays, I feel just a little different.

Different. Not uncomfortable. Not uneasy. Just different.

So, I thought why not dialyse on Sundays too? I have been doing that for the past few months now. I take a weekday off once in a way. This happens rarely though.

All this has led my brother Karan to say that I am really hooked to dialysis. When he was here on a break from his MBA in the US, he often teased me about this. Around 8 in the evening, he would say, "Its already 8! How come you've not yet started?"

This has set me thinking. Am I really hooked to dialysis? Am I dialysing to live or living to dialyse??

The truth is that I don't want to restrict what I eat and drink. And this is possible only if I dialyse regularly. I have not yet been able to get rid of my mental obsession with fluids. Inspite of four years on daily nocturnal, I have not yet been able to think of fluids like a normal person does. I still pull off 2.5 to 4 liters of fluid a day. Please do not tell me how wrong or abnormal this is. I know.

This is the main reason I like to dialyse daily. No, however much this may seem the case, I do not enjoy the process of dialysis, I do not enjoy the needles in my arm and I do not enjoy being tied to a machine every night of the week just to be able to eat and drink what I want.

Monday, August 23, 2010

Will the Mahankali temple down the road please change its only bhajan casette?

There is a Mahankali temple down the road from where we live. We moved to the place where we currently stay about 14 years back. Every year around this time of the year, the festive season starts. You first have the Bonalu festival, followed by the Ganesh festival, then Dasara, finally culminating with Diwali.

Every morning, during this entire season, the temple plays devotional music. On a loudspeaker. This music is audible in about a 2 kilometer radius. This post is not even about my problem with that. Though I am dead against 'loudspeaker religion', I will save my comments on that for another post. My problem is that this temple plays the same bhajan casette every morning, every day of the season, FOR THE PAST 14 YEARS!

I now know the exact order in which the songs come. When one song ends, I can tell which one is next. In fact, if I hear one of the songs somewhere else in some other context, I feel very odd and uncomfortable because the next song does not come!

So, here is my simple request to the temple authorities: Please, change the casette.

Friday, August 20, 2010

Caregiver burnout

Kidney disease can be quite taxing for an individual. It is not a short term thing. It is often something you have to live with life-long. Yes, you often have years of peace but it often comes back in some form or another.

This can also take its toll on caregivers, the people around the individual affected by the kidney disease. The serious nature of the disease makes the patient the center of the world around him or her. The entire family's life often revolves around the patient and the disease.

There are surgeries. There are doctor visits. There are hospital stays. There could very well be dialysis which is often a thrice a week thing which takes up half the day. Week after week.

In all this, often the primary caregiver undergoes tremendous stress and frustration. Worse, this is rarely recognized and addressed. The patient occupies centerstage and there is no bandwidth in anybody's mind (including the caregiver's) to recognize that there are problems elsewhere as well.

This is a genuine problem. There are simple solutions however. They may not address the problem entirely. They can help alleviate the problem partially though. And this may be a big relief in itself.

We, the people with kidney disease must realize that our problem affects others too. Most definitely, we are affected the most. No denying that. However, there is a definite effect on our families too. We must be sensitive to this. A simple word of gratitude for them can make them feel much better. Also, we must try to become as independent as possible. Not only will we feel stronger, but this will also reduce the things our families have to do for us.

Primary caregivers must learn to take some time off from the patients and the disease. They must do the things they like to do, away from the patient, without feeling guilty. This will help not only the caregiver but the patient too.

These are little things that make a big difference. Both the patient and the caregiver must appreciate this problem and make a conscious effort to make sure that kidney disease does not take over their lives.

Thursday, August 19, 2010

Secular schools should be really secular

Most schools in India are secular. They not affiliated to any religion in particular. Some schools, on the other hand, are started by religious organizations.

It is perfectly all right for schools that are run by religious organizations to promote or teach their religion.

It is important however, for secular schools to be truly secular. The 'G' word must never be mentioned. Now, before you go about shouting me down as an atheist, let me clarify that I believe in religion and am a temple-goer. I however believe that teachers should never mention religion or anything related to it.

Every religion is different. Yes, we've heard many times that the fundamentals of every religion are the same. However, there are some basic differences between the major religions.

Christianity and Islam say that there is one omnipotent God. Hinduism has a pantheon of Gods, all omnipotent. Jainism is an atheistic religion and says there is no omnipotent God and places 'karma' as the ultimate force.

This is a very major difference between these religions.

Most schools however (unintentionally?) propagate the monotheistic line of one omnipotent God who helps us or punishes us. This belief sometimes becomes so ingrained into children that they find it very difficult to reconcile or accept any differing belief even if it is the one their family follows.

Religion is an intensely personal thing and it is entirely up to an individual whether to follow it or not and if yes, which one to follow. It is definitely not something that should be learnt at school.

Friday, August 13, 2010

NDTV's iPhone app sucks

I recently got NDTV's iPhone app. I used to be a big time follower of NDTV's news channel and would rarely miss their 9 o' clock news. Over the last year or two I have been less regular. Not because I switched to another channel, but because I rarely watch TV at all.

So, when I got to know about the iPhone app, I thought I should get it. I downloaded it to my iPhone.

One look at the screenshot below will tell you how badly it is designed.

The main aspect about the app is news. If you look at the news items on the main screen, you cannot figure out even one of them. "CWG corruption allegations..."? Huh? Or "26/11 case: Warrants again...". Scrolling down reveals that not even one of the news headlines are complete and you have to tap on the item to be able to see what it is. I thought maybe if I flipped the phone to the landscape orientation, I would be able to see the whole headline. No. It does not support the horizontal orientation.

This is a perfect example of how an app serves no purpose. If I am unable to read the news item headline, what can I do with this app? I obviously do not want to click on each item to see what it is about.

This is the problem when software is not tested by real users. Heck, a simple Hallway Usability Test would have brought this problem out. The development team probably had elaborate test cases that tested all kinds of implausible scenarios. But they forgot to test if the app served its purpose.

Wednesday, August 11, 2010

Tanker Foundation in Chennai provides free dialysis

I got to know about the Tanker Foundation in Chennai recently. The foundation was set up in 1993 by a group of like minded people including the renowned nephrologist Dr. Georgi Abraham.

The foundation provides free dialysis to those who cannot afford it. They also provide free fistula surgeries and have a number of other facilities like supply of erythropoietin, lab tests and even transplants to the needy.

They started off by associating with other hospitals and funding dialysis sessions there. They gradually set up their own centers and are currently serving 140 patients.

They have a fund raiser every year and have the famous Tamil cinema actor Suriya as their brand ambassador. Suriya has also contributed generously for this cause.

They also have a branch in Madurai.

Foundations such as these are really life saving. There are so many people who canot afford the huge, week after week costs of dialysis and simply give up and die. Due to these trusts, they can at least hope to continue to live. As a country, we in India really need to reflect on what our priorities should be.

Can we really afford to spend money on things like the Commonwealth Games (a large part of which goes into the pockets of our shameless politicians and bureaucrats, anyway) when the majority of our population cannot even afford basic healthcare?

Friday, August 6, 2010

Day 3: Causes of the alarms and how knowing that helps fix the issue

Thiagarajan and I met at around 6 on Wednesday evening to have a session where we would proceed with our discussion. Thiagarajan explained the other types of alarms such as high and low arterial and venous pressure alarms. His explanations were based on first principles which made things very easy to understand. For example, he explained how the arterial and venous pressures were sensed and what caused them to change. This made it easier to figure out what might be the cause of an alarm.

Many people try to fix these alarms without figuring out the cause. They have a list of causes that they have memorized or know from experience and they go about the fix ruling things out one by one. This may result in the alarm being silenced only for a short period of time and return in a few minutes. Alarms can cause a patient to be quite rattled since it is his/her blood that is out of the body! So, it is important to know what the cause is before attempting to fix it.

After a dinner break, we started dialysis. I requested Thiagarajan to allow me to use my style of priming. He readily agreed. I was on dialysis by around 10. The next morning, when dialysis finished, we simulated an air bubble detector alarm and I fixed it on my own. I needed little guidance from the team. I was fairly confident of the technique to do this.

I also closed the dialysis session entirely on my own including closing the sites with one hand.

At this point we decided that we needed just one more session of discussion where we could wrap up the training.

The next day, Thursday, we met at the hospital in the morning around 11. This session was mainly a discussion on any doubts that I had left. I had a few questions which Thiagarajan clarified. I also went through some of the procedures with him one last time to make sure I got them right. The procedures are so similar that it is easy to get confused with which to use for which situation.

The key is to start from first principles. What has happened? What is the cause? What should I then do to fix it? It will all follow if you are clear about the basics. It is striking how many things in life work this way!

I was done with the training!

We took a couple of pictures. I thanked him for all the help he had given me by doing this training. I left for Hyderabad that evening.

Wednesday, August 4, 2010

Day 2: There are alarms and then there are alarms

Day 2 was much better than Day 1. We had to use the pre-pump bloodlines because the post-pump ones were still not available. Thiagarajan had a totally different style of priming the dialyser and the bloodlines. I do not think there is anything wrong with my style however and plan not to change. Learning this new style may take a long time and especially since there is nothing wrong with what I am doing, it probably does not matter.

I was on dialysis by around 10:20 in the night.

Next, Thiagarajan explained that Blood Leak alarms and Air Bubble Detector alarms are the two most common alarms that dialysis machines give out.

Blood Leak alarms occur when blood leaks out of the fibres within the dialyser into the adjoining compartment for the dialysate. Should this happen, you need to change the dialyser. I was told orally how to change the dialyser.

Air in the blood can be very dangerous. Even a small amount of air in blood can be fatal. The design of dialysis machines and procedures makes sure that the chance of air entering into the blood stream is close to zero. Should air enter into the blood stream despite this, machines are designed to detect this at the point where blood returns to the body through the venous line and clamp the line to prevent the air from going into the body. I was taught orally how to handle situations where air enters the blood lines.

I was quite sleepy by then! We decided we would simulate these two situations the next morning and practise how to handle them.

The night was uneventful apart from a couple of small alarms that required a simple press of the reset button. I had a reasonably good sleep without any sedative.

In the morning, around 5:00, the machine alarmed to signal that dialysis had completed. I returned the blood back through the venous line and disconnected the bloodlines and removed the needles. I did everything pretty much myself including removing both the needles and tying the tourniquets using the trick Thiagarajan had taught me the previous day.

Then I had to practice the handling of the Blood Leak alarm and the Air Bubble Detector alarm. This was a little tough as it was the first time and my left upper arm was sore from the needles that had just been removed after a gruelling seven hours of hard work!

We first did the Air Bubble Detector alarm which meant that air had entered the blood lines. This involved disconnecting the bloodlines from the needles, going into recirculation mode and then ensuring that the air is removed by forcing all the air out by aspirating it from the chambers and hitting the dialyser to force it out from within. Piece of cake? Not exactly! But then, Chennai wasn't built in a day!

Then I practised handling the Blood Leak alarm which involved changing the dialyser. This was an equally dangerous problem albeit with an easier solution. You basically clamped the lines going into the dialyser and then took a new dialyser, primed it with saline and then replaced the old, defective one.

We quickly did this and then did one more round of air bubble handling just for kicks. Practice, they say, makes a man perfect. Whoever coined that probably had home hemo training in mind!

I was done for the day by then. With a promise to meet at five this evening, we wound up Day 2.

I did my swimming soon after, followed by a sumptuous breakfast at Murugan Idli Shop. Gosh, that place can be addictive! I take it as a reward for the hard work I am putting in through the night!

Tuesday, August 3, 2010

Thanks Dr. Rabindranath!

Dr. Gopal Rabindranath is one of India's senior most nephrologists. He has travelled to different countries and knows some of the best renal healthcare teams across the world. Dr. Rabindranath has a keen interest in home hemodialysis and has a website dedicated to home hemodialysis training in India.

Dr. Rabindranath came to know about my home hemodialysis a few years back through the Fresenius team. During a visit to Hyderabad, he came home to see my setup. He was very encouraging. I have been in touch with him since then.

Dr. Rabindranath was instrumental in getting me some troubleshooting manuals for home hemodialysis which is an invaluable resource for me these days. He has also been pushing Fresenius for a home hemo training program to be started in India. One of the important inspirations for the home hemo program that I am attending currently is Dr. Rabindranath.

The Indian renal healthcare industry needs more people like Dr. Rabindranath to bring the best facilities and options to patients.

Thanks so much Dr. Rabindranath for all your help and support!

Day 1: Confusion worse confounded

I took off for Chennai on Monday morning for the home hemo training. The hospital apparently had organised an inauguration and a small ceremony which I did not know about and so had to miss. I got some rest and reached Madras Medical Mission (MMM) hospital around 4:30.

There was a small room that was setup for the home hemo training. I should be able to post a picture of the room soon. It was a very nice little room, very different from your general hospital rooms. It had a small cot at one side, next to which was the Fresenius 4008S. There was a wash basin and a table to keep things.

I met the team, Dr. Georgi Abraham, the chief nephrologist, Thiagarajan Thandavan, the head of clinical coordinators for Fresenius in India and the driving force behind this entire program, Geetha from Fresenius' home therapy program and Sugan Raj, clinical coordinator from Fresenius. They were all very affable people with a passion for their work and a genuine desire to make this program a success.

We got started with a very touchy topic - to use xylocaine or not. Xylocaine is a local anesthetic. Many people on dialysis like to inject a little at the point of cannulation to avoid the pain of the thick needles going in for dialysis. Most medical professionals discourage the use of xylocaine saying that it is harmful in the long term. I have used it for the most part. It makes the pain less. Thiagarajan suggested we try not to use it. I hesitatingly agreed. Next was the technique to wash hands effectively. I was given a presentation about the importance of washing hands well and the six step washing method. I was given a demo of how to wash hands before a dialysis session and then made to do a dry run.

We then broke for dinner and I got back to the hospital at 9:30.

We decided to start dialysis. There was general confusion because this was the first time this was being done. We put the machine to test and in the meantime I started connecting the dialyser and the blood lines. When I started connecting the bloodlines, we realised that they were 'pre-pump' type. I have always used the 'post-pump' type. I got a little flustered. This entailed a slightly different priming method. The team guided me as I primed the dialyser and the bloodlines.

The machine self test however failed. The temperature and the diasafe tests kept failing. The service engineer from Fresenius was immediately called. It was close to 11 in the night when he came. Sugan Raj, the clinical coordinator assured me that they had tested everything that morning and it was all in order. The service engineer came and fixed the problem by opening the machine up and doing some calibration.

We then proceeded with the treatment. The team watched as I injected xylocaine (we agreed that I would use it as we hadn't had a good start and we wanted to reduce any further pain and discomfort). I then cannulated myself. The tape that was used (micropore) was also different from the one I was used to (transpore). This made things a little unwieldy. But in a few minutes I was on dialysis!

We did a five and half hour run. I took a mild sedative to get some sleep.

The treatment completed at around 5:45 in the morning. I did most of the closing on my own with tips from Thiagarajan on how to remove the needles and hold the gauze with one hand. He taught me a nice little technique where we tape the other end of the needle to a trolley or a firm place and then move your arm away from it so that the needle is removed and you can press the gauze on the site with the free hand. I will try and post a video of this some time.

All in all, it wasn't the start that I had hoped for. But the team, of course, did all they could and sometimes, things take a little time to settle down. The plan today is to have a discussion on trouble shooting at around six in the evening, break for an early dinner and then begin by around nine.

I got a chance to swim at the place I am staying. That felt really good! We also went over to the Murugan Idly shop at T nagar. The food there was truly heavenly. I took a quick nap to make up for the lost sleep. Let's hope tonight is better!