Wednesday, February 29, 2012

Today is Rare Disease Day

I have atypical Hemolytic Uremic Syndrome (aHUS). In the US, there are only about 300 people who have this disease. Most of them are children. Adult aHUS is even more rare. I am not aware of any statistics in India. Fifteen years after I was first diagnosed, I am still waiting for a cure. Eculizumab, a very promising drug has shown very good results with this disease. I will need to get access to this drug (currently not available in India) and then undergo a kidney transplant to be able to have a good chance of a life without dialysis.

Atypical HUS is what is officially called a 'rare disease'. Today, February 29th is Rare Disease Day, a day that comes rarely! Worldwide, people affected by one of the many rare diseases are commemorating the day and doing various things to improve awareness among the general population about rare diseases. There is a lot of work happening in the US and Europe in terms of lobbying with governments to improve support to find cures for rare diseases. The incentive for pharmaceutical companies is not generally high to work on cures for rare diseases because the potential customers are well, rare! So, it is important that the governments do something proactively to improve the chances for cures to be found and then be taken to the people suffering from these diseases.

I have created this small video and uploaded it to the Rare Diseases Day website and the Atypical HUS You Tube channel along with may others around the world to commemorate this day.


This is the Official Rare Disease Day video:






Friday, February 24, 2012

'More is better when it comes to dialysis': Tell me something new!

In a recent study, it was shown that more frequent, longer duration hemodialysis had better outcomes than the conventional thrice weekly, four hour sessions that the majority of patients currently undergo.

When I had to switch to Hemodialysis after my peritoneal cavity lost its ability to filter water, I was broken. Life, I thought, was over. But then my nephrologist, Dr. Girish Narayen, suggested nocturnal home hemo. For me, within a few months it was clear that I had got my life back. I didn't need any clinical trials or proof that this modality was better - much, much better.

Today, about five years after I switched, I am leading a pretty much normal life. If I had continued on the conventional hospital based thrice a week dialysis, I wouldn't have survived. Yes, there are people who are doing pretty well on conventional dialysis but it is simply not for me. I value my independence a little too much!

This study is significant though. Many patients don't have an opportunity to try this. Nephrologists as well! Patients generally think the medical community is trying to maximize revenue and profits by asking them to dialyze more frequently. I don't blame them of course. I would think that way too. But such studies would help patients realize this truth and encourage them to make an effort to increase the hours on dialysis and feel better and live longer.

Thursday, February 23, 2012

Aashayein 2012 - Pictures

Here are some pictures from Aashayein 2012:


Lighting the lamp. From L to R: Rama Kumari (NephroPlus patient), me, Dr. Brian Pereira (one of the top nephrologists in the world today, also the Chief Guest at the event), Manjunath (a pillar of the NephroPlus Banjara Hills unit), Vikram Vuppala (NephroPlus CEO).


'Shatadhvanyanukarana Vibhushana' Hari Kishen - a dialysis patient himself, the best part of the program - his jokes on dialysis units were the highlight of the day!


Me. In hindsight, the 'kurta' was a tad gaudy! But believe me, it looked more sober than in the picture!


Patients enjoying a sumptuous lunch prepared as per the dialysis diet - salt free (patients could take one or two 1 gram salt packets) and were leached of all the Potassium


Dr. P. C. Gupta, Vascular Surgeon, judging the Best Fistula Contest


Zia, NephroPlus technician giving one of the patients a gift for answering an Antakshari question correctly

Monday, February 20, 2012

Aashayein 2012

So, Aashayein is done! After weeks of hard work of the entire NephroPlus team including yours truly, the event is finally over. It is difficult to imagine that it is over. After occupying your mind's space for so long, when something of this magnitude is completed, it is often difficult to come to terms with it!

The event, as expected was a huge hit.

I reached the venue exactly at 8 a.m., the time we (the NephroPlus team) decided to be there by. As usual, I was the only person there. But to their credit, almost the entire team was there within fifteen minutes or so. Some patients started coming in by 8:15 itself. These people had come in from outside Hyderabad. It was heartening to see people come in from so far for the event. And these people were not paid to attend!

By 9:30, the hall was almost full. We started playing the Aashayein theme and last year's pictures. We started the program around 10:15 and Dr. Brian Pereira, the chief guest of the event, who is one of the world's top nephrologists spoke very well in Hindi though the word 'gurda' - Hindi for kidney - is a horrible sounding word. I wish they chose a different word! Then there was the traditional lighting of the lamp which Dr. Pereira and Rama Kumari, a NephroPlus patient did. The lamp did take some time to light though!


From left, Mrs. Rama Kumari, me, Dr. Pereira and Vikram

After this, Dr. Rajasekhara Chakravarthi, nephrologist from Care Hospitals spoke on a few dos and don'ts for folks on dialysis. One thing that struck me during his talk was how almost all the tips he gave were probably known to every dialysis patient who has been on dialysis for a few years but were totally new for those who have been put recently on dialysis. When you get on dialysis, most of the diet tips totally shock you. A lot of what is good for people with normal kidneys is bad for people on dialysis! Dr. Chakravarthi's talk was great for those who were recently diagnosed.

After this, we had what probably was the best part of the show - the stand-up comedy act by Hari Kishen, a dialysis patient himself. He had everyone including me in splits. His take on the dialysis diet, the doctors and the accent of the nurses in the unit were absolutely hilarious! His show, for me, was the best part of the event.

This was followed by talks by Dr. Rajagopal, Transplant Surgeon and Mrs. Charitha Adikane, Dietician, on transplants and the renal diet respectively.

A sumptuous lunch followed which was prepared according to the dialysis patient's diet. The food was all salt-free and 1 gram salt packets were provided so that patients could add salt to their food as per their allowance. The vegetables were all leached to remove Potassium. I had a hurried lunch because as I served myself and generously mixed the salt from the packets and started digging into the delicious Malai Kofta, I spotted Dr. P. C. Gupta, the brilliant vascular surgeon who was scheduled to judge the Best Fistula Contest and speak on fistula care. I left my plate and dashed off to welcome him. I got back after making him comfortable to find my plate gone. I served myself another plate. This time I settled for plain rice and dal fry. I love this combination!

We started the post lunch session with the Best Fistula Contest and Dr. Gupta declared the winner after which he gave some great tips on how to maintain fistulas for long.

We had some games after this and ended the day with Housie and distribution of goodies.

I was totally tired after the event and reached home to crash. I awoke this morning with aches in my shoulders and legs! I am taking it easy today. There are some other interesting stories from Aashayein and pictures as well which I will post in the coming days.

Wednesday, February 15, 2012

Update

Its been really long that I posted. I have been down with an infection in my fistula. It all started when I changed one of my cannulation sites for the arterial needle because I was having pain in one of them. Two days I used sharp needles to form the tract and the second day itself it looked like the tract was formed. I had used this site long back so I thought the tunnel reopened easily.

The third day, I used a blunt needle and it wasn't going in easily. So, I let Jairam try and he had to dig around a little before it finally went it. The rest of the night was uneventful. Morning was also fine while removing the needles.

I then had a shower and on my way to work the new arterial site started paining. It was a deep sting. Within an hour of reaching the office, I started feeling feverish as well and the area had swollen. I took some paracetamol and rested. I left early for the day. I was put on antibiotics by the doctors. After three days, the fever subsided and I am much better now.

This week is going to be one crazy week. Its Aashayein, this Sunday! The three days out of circulation have made things a wee bit rushed. Our radio campaign for the event goes live today. Watch out for a surprise in case you hear the English version! Let me know how you found it!

Wednesday, February 8, 2012

A radio campaign: how much does it help?

We launched Hello Kidney beginning of this month. To coincide with the launch, we did a radio campaign that talked about how you could get help on kidney and urological problems by just a free phone call. We never claimed to cure or diagnose on phone. It was just an informational helpline where you could check on stuff. If it sounded serious, we would direct the caller to visit a doc - not necessarily our docs, but any doc of the required speciality.

The radio ad was noticed. I got many calls from friends saying they heard the ad - few of them who I presumed would never listen to radio as it exists in Hyderabad today. The ads themselves were only 15 seconds long - not something very 'in your face' at all. But they were still noticed.

However most of the calls we actually got were due to the press release we issued and that appeared in many newspapers (we tracked the source of info about the helpline). So, while the radio ad definitely helped in building visibility for our brand, it did not result in too many actual calls.

Well, it is too early to arrive at any firm conclusions from a one week exercise. But this did help in getting some early reads into the effectiveness of a radio campaign for an initiative such as this.



Monday, February 6, 2012

Karnataka government is doing a pilot study to support PD financially

The Karnataka government, in association with the Institute of Nephro Urology at Victoria Hospital, Bengaluru is starting a 1 year pilot project where 25 patients would be put on Peritoneal Dialysis. The budget is Rs. 35 lakhs. The patients would bear only 35% of the costs and the government would bear the rest. You can read the article where I learnt about this here.

This is a great step forward for PD in India.

Peritoneal Dialysis is an excellent therapy. In my opinion, it offers a much better quality of life compared to traditional in-center hemodialysis. It requires much fewer diet and fluid restrictions and can be very easily done at home. However, despite all this, a very small fraction of patients are on this therapy.

For patients that stay far away from a hospital or a dialysis center, PD is often the only option. PD is slightly more expensive than HD and the patient is responsible for his health to a large extent.

This pilot project is a great initiative simply because this is probably the first time any government is doing anything to promote and support this therapy.

Dr. G K Venkatesh, the institute's director deserves many congratulations!





Sunday, February 5, 2012

NephroPlus launching Dialysis Academy

"How would you treat someone who gets cramps during dialysis?", I asked the twenty-something technician (with about three years of experience in dialysis) across the table. I was interviewing him for the post of a dialysis technician for a NephroPlus center.

Cramps are a very commonly faced symptom on dialysis. It happens when fluid is either removed at too fast a rate or if fluid is removed even after the dry weight has been reached. Cramps can also occur if the sodium level falls too low. Any technician or nurse who has spent even a few days at a dialysis center would know that cramps has to be treated by stopping the UF and possibly infusing some saline to compensate for the excess fluid removed.

"Ummm....", he hesitated. "Haven't you come across a patient who had cramps?", I asked him. He nodded his head. "Then what would you do?", I pestered.

"We will infuse some bleach", he blurted!

"Bleach?", I couldn't believe I had heard that! I instantly thanked my stars that I never dialyzed at a unit where this guy was there. If bleach was infused, the patient would be dead!

I rejected him immediately.

This is only one of many such incidents I can recount from my interviews with dialysis technicians and nurses. The level of knowledge is so pathetic that I shudder to think how these people are manning dialysis units across the country where so many lives are at stake. We go to these units trusting these people completely. We surrender our lives to them without a question. The question is - do these people deserve our trust?

At NephroPlus, Vikram, Sandeep and I grimly discussed the scenario. The simple truth was this - good talent is just not available. How then will we expand as planned? How can we run our units without qualified and trained nurses and technicians? One thing was sure - we would not let these people anywhere close to our units!

We would have to train and ready people ourselves. This was the only solution.

We just released an ad this morning inviting applications to a two year diploma course which will include an examination from a very reputed certification agency for dialysis technicians and nurses from the US. I am personally heading this initiative. This will be one of my main focus areas at NephroPlus.

The details of the program can be found here.




Saturday, February 4, 2012

Mani Shankar Aiyar did the right thing

The Congress party is upset with Mani Shankar Aiyar for participating in a debate on a Pakistan television channel where Maulana Masood Azhar, India's most wanted terrorist also participated. The thinking is that he should not have shared a platform with Azhar.

I do not think so.

I saw some footage from the program and felt Aiyar did a good job. He said rightly that Azhar should be arrested and brought before a court of terrorism. Azhar was quite agitated with Aiyar's statement.

What is wrong with this? Aiyar gave him as good as it gets! No one probably has ever spoken to him like that! There is no point in shying away from these things and taking the high moral ground. This was a good opportunity to talk. Azhar wasn't even in the TV studio. He was participating over a call.

Great job Mani Shankar Aiyar!


Friday, February 3, 2012

A welcome fatwa

A group of Muslim religious leaders issued a fatwa yesterday that Muslims must not indulge in loud music and other activities that disturb or cause inconvenience to others on the occasion of Milad - un - nabi that falls on Sunday, the 5th of February. They also said that even reading the Quran in a manner that disturbs others is against the tenets of Islam.

This is a very welcome step. All religions should follow this principle. Do whatever you want when it comes to religion. But it should always be without disturbing others.

I strongly believe that religion is an intensely personal thing and it should be more in the mind rather than on display. Many religions, including my own, these days have become so far removed form the initial sets of teachings that it is very difficult to recognize the original forms!

The blatant use of loudspeakers is a curse afflicting all religions today. Many people who are disturbed by this noise actually curse the religions and their followers when such things happen. This is not at all desirable. And to top it all, the followers of one religion start indulging in competitive nuisance creation. "You spoilt my sleep during your festival, so I will spoil your sleep during mine!"

So, amidst all this, this fatwa is a great step and shows some very mature thinking on the part of these leaders.

Wednesday, February 1, 2012

Say "Hello Kidney"!

We at NephroPlus are launching Hello Kidney today, a free helpline where you can call to check on any kidney related issue. If you want to check about some symptoms that you suspect are related to the kidney or you are on dialysis and want to find out more about transplants, call Hello Kidney!



The call will be answered by trained doctors and not some giggly, nice-sounding girls who have no clue whether humans generally have one kidney or two!

So, now if its a kidney problem, help is just a call away!