Wednesday, March 31, 2010

Update on the little boy with aHUS

I had written a few days back about Sai Karthik, the 3 year old boy with atypical HUS, the disease that I have. Karthik's parents took him to CMC, Vellore, one of the best hospitals in the country where he was put on plasmapheresis. He had to undergo a few sessions of hemodialysis too because his PD catheter was blocked.

Subsequently, a new PD catheter was inserted and he is now stable on PD. He continues to be dialysis-dependent however. They are coming back to Hyderabad this weekend. He will be under the treatment of Dr. Mehul Shah, a pediatric nephrologist of great repute. The plan is to continue the plasmapheresis. His LDH is around 700.

The hope is that the plasmapheresis arrests the activity of the disease and stops the hemolysis. The hope is also that the damage caused to the kidneys in the meantime is minimal.

Party lunches at office on weekdays

For the last few weeks at our office, we've been having a lot of party lunches. Its been a month of birthdays and awards. I enjoy these lunches; who doesn't? But I have one problem. These lunches, like it or not, have been happening right in the middle of the week. On Wednesdays or Thursdays.

These lunches invariably are buffets with wide spreads. So, you end up eating quite a lot. You get back to office around 3 in the afternoon. And post-lunch, you don't feel like working. So, the rest of the day is practically wasted.

The other problem is that there's something about these lunches that make you feel that you're at the weekend. It feels like a Friday or Saturday. So, you get into the weekend mood. For the rest of the day, your mind feels like its about to go into 'weekend mode' and you can hardly bring yourself to start something new.

Some of my colleagues take this to extreme levels. They drink some beer or down a couple of Breezers with lunch. So, they actually don't even get back to office after the lunch to put on the pretense of working as the rest of us do!

These lunches are, however, a good chance to mix with colleagues in an informal atmosphere. This bonding does help in many ways. We have a birthday lunch again tomorrow (Thursday!). Yet another pseudo-long-weekend on its way!

Tuesday, March 30, 2010

I just saw the worst movie...ever

I went for Love, sex aur dhokha (LSD) this Sunday. I can safely say that it was the worst movie I have ever seen and probably will ever see. I regretted not listening to my uncle who really pleaded with us not to go for the movie. He even offered to pay us for the tickets which we had booked online!

For the first few minutes, I did not realize that the movie had started. It was some weird camera shooting weird people saying weird things. Soon, I realized that this was the real movie. The film shows three different stories through cameras, some of them surveillance cameras. The three stories merge at some points.

I have no problem with experimental cinema. I even enjoy some of these films. But LSD is an experiment gone horribly wrong. Just what was the director thinking? The shaky camera, the screaming actresses, the meaningless stories, all make for a concoction of nonsense hitherto unseen in Indian cinema.

My standards are pretty low when it comes to films. I enjoy any movie even slightly above average. After watching LSD, I actually had a headache. That is very rare.

If you are having a really good time in life and feel that it is dangerous to have too much of a good thing, go watch LSD.

Saturday, March 27, 2010

Independence - Part 2

Yesterday, I started my dialysis session myself. Entirely. Prepared the bicarbonate solution, primed the dialyzer and the lines, cannulated myself and then started the treatment. Jayaram, the tech came about half an hour into treatment.

There is nothing new in this though. About two years back I was doing this myself. But then decided against doing it because of a couple of problems I had. I had also started on my current job which necessitated a long commute to work and back as a result of which I was dead tired by the end of the day to do anything, let alone start dialysis myself.

There are still things that can go wrong. There might still be some problems. I am trying to get manuals that are used to train people on home hemo in other countries like Australia, the US and Hong Kong. This will give me some ammunition to deal with any such problems.

I plan to learn how to close a session too gradually. That way when my tech gets married I will not have any problems. The key is practice. No education can give you the expertise to be able to dialyze on your own. Doing it day after day, for a period of time is the only way out.

Let's hope I learn fast.

Wednesday, March 24, 2010

Getting my hands dirty - again!

There was a time, many months back, when I was doing the entire starting of my dialysis sessions myself. I would prepare the bicarb, prime the dialyzer and the lines and then start the session too. My tech would only do the closing in the morning.

I did this for a few months, I think. Then, I had a couple of incidents which unnerved me totally. My parents forbade me from starting the dialysis until the tech arrived. I was also quite shaken with these two incidents and I stopped doing this.

Its been like that for a long time now.

However, I realize that to be truly independent, I will need to start and close the sessions myself and handle any issues that may arise in between too. I was waiting for someone to hold a home hemo training program here but that has only remained a pipe dream. I don't blame anyone for that not happening. There are too few people interested in home hemo at this point in India.

I have started to slowly get back into the driver's seat as far as my dialysis is concerned. I started priming the lines and preparing the bicarb solution myself. I also started the session yesterday myself. These are the easy parts. The most tricky part is to handle any issues that might arise. For example, what do you do, if the Air Bubble Detector alarm goes on during dialysis, how do you handle falling conductivity, what do you do if you keep getting a Low Venous Pressure alarm? All these alarms have some reason and there are things you can do about it.

Closing is going to be another ball game altogether. I still haven't figured how to remove the needles with one hand. With my huge fistula, it is going to be one difficult thing to learn.

I really have no choice in the matter, however. I am confident that I will never be able to find a tech as good as Jayaram and once he's married, he will not be able to come to help with the dialysis. So, I will be pretty much on my own. A transplant, if it happens, will not be until at least a year and a half.

I am not complaining though. The independence is nice. I can start when I want. I can close when I want. I can take any day off. I can dialyze on Sundays if I choose to.

What would really help is some manuals on dialyzing on the Fresenius 4008S. I understand that there are similar manuals for the NxStage System One. It would be great if there were some documentation on dialyzing at home with a Fresenius 4008S too.

Saturday, March 20, 2010

Nephroplus begins operations

Nephroplus, Hyderabad's only standalone dialysis center was launched a few days back in the city.

Here are the three things about this center that I really like:

1. Availability of different modalities of hemodialysis

This center offers non-conventional modalities like nocturnal daily dialysis, short daily dialysis and every other day dialysis apart from the regular thrice a week, four hour sessions. This is great because nephrologists and dialyzors are both realizing the advantages of more frequent, longer duration dialysis treatments.

Until now, anyone who wanted to try these modalities had only one option - a home setup. Though it is ideal for the dialyzor in many ways, it is not practical for all, especially in India where the infrastructure for such a set up and handling any emergency that might come up barely exists.

For people who are traveling to the city from other parts of India and abroad, and who are on one of these modalities, this center will prove to be a boon.

2. Stringent processes to prevent cross infections

Today, cross infections with viruses such as Hepatitis C have become rampant in dialysis centers across the country. Nephroplus has come up with a stringent 46 step process that eliminates many points where cross infections can occur. The CDC guidelines for preventing cross infections in dialysis centers are followed strictly. For example, the common medication trolley that most centers in India still use and which has been found to be a major source of cross infections has been done away with entirely.

Blood tubings will not be reused at all and dialyzer reuse is strongly discouraged. The goal of the center is 'Zero Seroconversions'.

3. Convenient facilities

There is a television for each dialyzor, a departure from the normally seen one-TV-set-for-the-whole-unit along with free Internet access over Wifi. There is also a free pick up and drop off facility.

This is one center which I would have loved to go to if I was not on home hemo. The center itself has great interiors which makes the whole experience of going for a session more cheerful and less dreary.

You can call +91-40-42408039 for more information.

Here are some pics from the launch:

Sandeep, Vikram and I at the reception

One of the dialysis stations

MCI to penalize doctors who accept gifts from pharmaceutical companies

In a significant decision, the Medical Council of India has decided that doctors cannot take gifts from pharmaceutical companies. This is an excellent step.

It is common practice in the medical industry in India for pharmaceutical companies to give expensive gifts to doctors to encourage them to prescribe their products. Companies are also known to sponsor trips for doctors and their families to medical conferences in different cities in India and abroad. I have heard that many doctors look at these trips as pleasure trips rather than to learn new things or contribute anything to medicine.

I have experienced this personally too. I was with a particular nephrologist in Hyderabad during my Peritoneal Dialysis days. I wanted to switch to a cycler from the manual exchanges I was doing at that time. I was keen on using the Baxter cycler. This nephrologist kept insisting that I use a cycler manufactured by another company. I did a little digging around and found that the cycler being recommended by the nephrologist would not even suit me.

The cycler had a fixed fill volume of 2 liters whereas I might need varying fill volumes because I had problems sometimes with excess fluid leaking through the walls of my peritoneum. Also, the company was a relatively new entrant in the PD market in India. They did not have a strong presence. Baxter, on the other hand, had an excellent network in the country and were the leading PD company.

I tried reasoning with the nephrologist. He wouldn't listen. He gave me all kinds of reasons about why I should go with the new company. I wasn't convinced. I went to another nephrologist and took up the Baxter cycler.

A few months later, the new company wound up operations in India. So, my stand was vindicated.

I later learned that the nephrologist was cross with Baxter because they refused to sponsor him for a medical conference abroad! And the new company probably had struck a good deal with him.

This is what happens when considerations other than those that are purely medical influence decisions made by doctors. When a doctor recommends a medicine, laboratory investigation or treatment to a patient, the recommendation should be purely guided by what is best for the patient. Any other influence is totally unacceptable, entirely unethical and against all tenets of the Hippocratic oath all doctors are required to take.

The MCI has said that any doctor found to be accepting gifts from a pharmaceutical company will not only be disallowed from practicing but his or her name would be made public. This is an excellent decision and the MCI must be commended for taking it.

Tuesday, March 16, 2010

Have you visited the 'Dialysis in India' website recently?

(Excuse shameless attempt at promoting sister website!)

There's a lot happening at the Dialysis in India website:!

There's an article that has some great advice for people who are considering getting on to Peritoneal dialysis. Things you must talk to your doctor about. Things that will help you get the most mileage out of your Peritoneal dialysis. Things that will help PD work for you and work long!

Monday, March 15, 2010

Jaise suraj ki garmi se jalte hue tan ko...

Many, many years back, I remember seeing a bhajan from a film that was telecast on Doordarshan, the only channel in India then. It went:

Jaise suraj ki garmi se jalte hue tan ko mil jaye taruvar ki chhaya
Aisa hi sukh mere man ko mila hai, mein jab se sharan tere aaya, mere Ram...

It had a group of serene looking men sitting in a line singing it and a devout audience lost in it. The bhajan appealed instantaneously. I saw it a couple of times more in the months to follow.

After those few months, I never heard it again. But the tune and the first few lines stayed with me. During engineering college, I had a friend, also called Kamal, who had similar interests as mine when it came to music. During a conversation, the bhajan came up and both us agreed that it was very touching.

A few years later, I remembered it again and by that time the internet had made its presence felt. I tried looking around for some link but could not find it.

A few days back, however, I remembered it yet again and decided to try looking for it one more time. This time I ws lucky. I not only found a You Tube video (not very good quality, the volume is too low) but I also found an mp3 version of the original. I learnt that it is from the film Parinay and was originally sung by the Sharma Bandhu, a group of four brothers, who were very famous at one time for singing Ram bhajans.

I now have the audio version and happily listen to it. It is as moving even today.

Googling the first few words of the song should take you to a link to the mp3. You can find the lyrics here. Here is the You Tube video (you might need to put the volume on maximum):

Saturday, March 13, 2010

Nephroplus launch tomorrow

Nephroplus, Hyderabad's only standalone dialysis center launches tomorrow. The center is the first of a chain of dialysis centers being set up by the group which is headed by Vikram, an IIT alumnus who did his MBA from Chicago Booth. Sandeep, an MBA from ISB is the other director in this venture.

I have been involved in this from the time Vikram conceptualized this and have been been advising him on what patients need from a dialysis center and what is missing in the units that exist today.

The advantage of having a standalone center is that the energy of everyone is focussed on dialysis and how to make the experience of the patients better. In a hospital, dialysis in only a small part of the operations. This leads to a lot of red-tape and delays in making things happen and introducing better processes to make life less painful for patients. Not so in a standalone center.

Is the first standalone center in the city? No. There have been others that have tried and failed. Then, what is different about Nephroplus?

I have seen the way Vikram and Sandeep operate. They have a missionary zeal to make life for patients better. They are hell bent on preventing cross infections, which is a major problem facing dialysis units today. The curse of Hepatitis B and C which turns a dialysis patient's life upside down for no fault of theirs is something that can and should be avoided. Nephroplus is introducing novel processes that aims to do just that.

The advantage of having people from outside the industry run this is great. They bring in fresh perspectives, novel ideas and are devoid of any preconceived notions. So, while even nephrologists and technicians are resigned to cross infections - 'it is not a question of if but when' - I find that Vikram and Sandeep have taken an entirely different approach to the problem. Zero seroconversions is their goal. Often, it is the intent that matters.

Added to this, they are introducing other modalities like short daily, nocturnal and every other day dialysis for patients who would like to switch to these modalities rather then being condemned to a life of a 'thrice weekly' or worse 'twice weekly' schedule which leads to poor outcomes and sub-optimal lives.

I am excited about this concept and hope many patients will benefit. The launch is tomorrow, Sunday, 14th of March at Banjara Hills at 6 p.m. Please call 42408039 for more details.

Thursday, March 11, 2010

What can you do to protect yourself from kidney disease?

Today is World Kidney Day. For all you healthy individuals, it is a good time to take a few precautions to avoid kidney disease. Kidney disease is becoming increasingly common these days. It is affecting a large number of young people. Just this morning, I read interviews with nephrologists in the city where they said that they get between two and five people in the age group of 20 to 30 every week with kidney disease.

This quite alarming because when I was diagnosed with kidney disease and went for dialysis when I was 22, I saw only older people around me. But these days, that is changing. This is mainly due to lifestyle changes. I would rate increased reliance on processed foods, increased use of anti-biotics and analgesics and lack of exercise as the three most important causes of the increasing frequency of kidney disease among the young.

What can you do to avoid kidney disease?

- Avoid processed foods. Try to have food that is natural and fresh
- Avoid anti-biotics and analgesics unless your doctor prescribes them
- Get exercise
- Get yourself tested regularly (every year?) for the basic indicators of kidney disease - GFR, Creatinine, Complete blood picture. Talk to your family doctor about other tests he/she would recommend.

Remember, chronic kidney disease is irreversible. There is no escaping it once you get it. The key is to avoid it. Diabetics, people with hypertension and those with a family history of kidney disease are particularly at risk.

Take your health seriously. Not doing so, will make you regret life-long.

Sunday, March 7, 2010

Blood samples have reached and are fine

My blood samples have reached the institute at Bergamo, Italy. I received confirmation from them saying that they have received the samples and that they are in good shape.

I also received the report from the temperature logger that was put into the package that would record the temperature every 15 minutes. The temperature was also within the prescribed limits of -20 to -80 degrees centigrade.

That came as a major relief. Months of efforts, frustration and perseverance finally paid off.

Now begins the wait for the results. The first set of results will become available in approximately six months. The final results will take about a year. Yes, very long. But I will be able to take a more informed decision about my transplant.

Friday, March 5, 2010

And I thought the problem was with my iPhone!

For the last few weeks, I was a little upset with my iPhone. The battery would die really fast, sometimes by early afternoon even though I charged it fully every morning. This would necessitate another round of charging in the evening to prevent the phone from going off.

I thought the battery had run out of life and I would need to change the battery. Heaven knows, its difficult (impossible?) to change your iPhone battery in India. Nevertheless, the choice was to get another iPhone, an expensive proposition. Haplessly, I went through the motions. Called the iStore. No luck. They did not change iPhone batteries. Try the Airtel office, they said. They are the ones providing the service and they should be able to do it for you.

I called the Airtel office. They asked me if I had bought it from them. No, I said. I got it from the US. Oops, they said. Then we may not be able to do it for you. You will have to walk into our office for us to be able to tell you.

I then called the local Apple reseller. They said they didn't do it either but they gave me the number of someone who did. I called this 'someone'. Turned out to be a lady. She asked me to send her the model number. She would order the battery and let me know. I would have to leave the phone with her for a few days (I managed to bring this down to a night) and she would do it. Cost: Rs. 2,500.

No bad, I thought. Go ahead and do it, I told her and sent her the model number.

While I was waiting for the battery to arrive, in a totally unrelated story, I changed the SIM card on my iPhone from Idea to Airtel. I was getting fed up with the lack of coverage of Idea and decided it was high time I switched to a better network.

For the next few days, I noticed the battery life on my iPhone was much longer. I did not have to charge for a long, long time!

I realized that since the Idea network coverage was so bad, every now and then the network would be lost and my poor iPhone would drain battery while trying to search for the network. With the much better Airtel network, this problem ceased to exist.

And I thought the problem was with my iPhone!

Wednesday, March 3, 2010

The little boy with atypical HUS

I got a call one evening.

"Is this Kamal?"

"Yes. Who is this?"

"This is Rajesh. My nephew is a three year old boy and has been diagnosed with HUS."

At that instant, a flood of emotions went through me. HUS. Hemolytic Uremic Syndrome. Where the body's defense mechanism against foreign bodies goes bonkers and starts attacking its own blood cells, breaking them down, the fragments of the blood then going and getting stuck in the pores of the kidney causing renal failure.

Three year old boy. Surely, this must be the typical form of the disease. The one preceded by diarrhea, the reversible form, the one with a good prognosis, the one where people get back to normal in a few days never to know the disease again.

"Did the boy have diarrhea before this episode?"

"No diarrhea. No other symptoms."

"Oh no", I thought to myself. This was the atypical form. The exact same thing that I had. The one with the bad prognosis. The one in which many of its victims proceeded to chronic renal failure. A third of the victims died. I was overwhelmed. I could see the last twelve years of my life playing out before me. This was the first person I came across who had the same disease in my city.

I gathered as much information about the boy as I could. I went over to the hospital to meet with him and his uncle who had called me. The family and the doctors were perplexed. What had caused this?

Little Karthik, now with a PD tube in his stomach to help clean the toxins his kidneys were supposed to, was quite clueless about the fuss around him. All he knew was that something was wrong. Wrong, it was. Horribly wrong. What could a boy of three know about HUS? About dialysis? About life itself?

The family is now taking Karthik to Vellore on the advice of the doctors here. That, for sure, is a good idea. They say they have the best treatment there. I hope the team at Vellore is able to give Karthik his life back. The little boy of three deserves that and no less.

Tuesday, March 2, 2010

Samples on their way to Italy - at last!

Finally, after all the efforts I put in over the last so many months, my blood samples, processed, packed and stored between -20 and -80 degrees centigrade were picked up by the courier company at 4 p.m. yesterday from the lab.

They are now on their way to Bergamo in Italy for some genetic and biochemical tests which will help me decide whether or not to go in for a transplant and if yes, what route to take.

The entire set of results will be ready in about a year from now. Till then I am hoping I can find out more about Eculizumab, the wonder drug for aHUS. I am hoping it becomes available in India soon. I am going to be spending a heck of a lot on a transplant. Might as well give it my best shot. Use whatever is available. Keep all options handy. Plasmapheresis, Eculizumab and whatever else there might be.

Monday, March 1, 2010

Subsidized dialysis in Hyderabad

Yesterday I went over to the Vikranti cinema compound in Hyderabad. I was called by Mr. Inderchand Jain of the Bhagwan Mahaveer Jain Relief Foundation Trust. The trust provides subsidized dialysis treatments to patients who cannot afford the cost of the treatments.

The way they work is on the last Sunday of every month, they give dialysis coupons to patients - one coupon entitles a patient to one dialysis session. They give as many coupons as the patient wants. They have tied up with three hospitals in the city of Hyderabad - Mahaveer Hospital, Challa Nursing Home and Mahesh Hospital. The cost of dialysis at these hospitals is Rs. 800. The trust pays the hospitals Rs. 500 per coupon. The patient pays Rs. 300 to the hospital directly.

The members of the trust monitor the quality of the dialysis offered by visiting the hospitals regularly. They also offer Erythropoietin injections (which most dialysis patients need to take) at subsidized rates. The plan is to offer dialyzers and blood tubings at much lower rates and gradually to open their own dialysis center in the city.

I talked to Mr. Jain and he said that the trust realizes that kidney failure is a problem that needs lifelong dialysis treatments and is not a one time thing. In a country like India where most people pay out of pocket for their medical expenses, being on dialysis can prove to be a severe financial strain on the individual and the immediate family.

Many people simply give up and choose to die. This is the stark reality.

In such circumstances, the trust is actually saving lives and providing hope to hundreds of patients and their families. They currently are helping about 120 patients and funding about 1000 treatments every month.

If you are interested in contributing to this cause, please contact Mr. Inderchand Jain at 98852-98100.