Saturday, October 26, 2013

No, being put on dialysis does not mean that the end is near!

First, one piece of factual information. I was put on dialysis in July 1997. Its about sixteen and a half years. I work full time. I swim every morning. I travel. I lead an almost normal life! And I do not intend to change this for some more time.

I was shocked a few days back when I talked to the adult children of a 60-something year old lady who was recently put on dialysis. They went to a nephrologist of one of the more respected hospitals in Hyderabad and to their utter horror were told by him that the end was near! She did not have any co-morbidities, she was otherwise healthy but put on dialysis. Imagine the plight of the family!

When I was diagnosed in 1997, a general physician commented to my father, "There is no chance!" My father was shocked. Then, when we consulted my nephrologist, Dr. Girish Narayen, he dismissed the thought and assured my father that there was nothing to worry.

In this case, however, it is a nephrologist making the claim! This is quite shocking!

Today, with good quality, adequate dialysis, people live for decades. I personally know so many people who have been on dialysis for so long and they lead normal lives - work, travel, exercise, even trek!

Even among the medical community, there is a lot of misinformation about the prognosis once you are on dialysis. Naturally, among people who are not medically trained, this can be much worse. Once your neighbors come to know that you or someone in your family is on dialysis, they all think, "Khel khatam, dukaan bandh!" - the story is over!

Nothing can be farther from the truth.

Of course, there are people who die within a few months or a few years of being put on dialysis. But it does not have to be that way! It is up to the patient, his or her family and the treating nephrologist to prevent this. It is possible to live long, productive and fruitful lives after being put on dialysis. It is all a matter of getting good dialysis, enough dialysis and yes, have a positive outlook.

Friday, October 25, 2013

The WAK hits a funding roadblock - corporate interests at play?

I was horrified when I read this post on the Facebook page of Dr. Victor Gura of the Blood Purification Technologies, the developers of the Wearable Artificial Kidney:

Dear friends of the WAK,

In several past posts we had annonced, that the first WAK trial would be carried out sometimes in the fall of 2013.
Unfortunately, that will not be the case.
Last August,we had the promise of having sufficient funding available to us, that would have allowed us to carry out our first FDA approved trial in Seattle. We received a cash advance, and work started in earnest.
A few weeks later, the financial support for the trial, and also the continued developement of the WAK, were witdrawn by those that had indicated that they would support it. Thus, manufacturing of the devices to be used in Seattle were halted, and the trial will not be carried out until the study is funded.

The development of the WAK is currently at a standstill solely because of lack of financial support.

We are sorry to have to make this announcement. Now we must wait further until the funds, allowing us to resume work, become available. 
We will continue to work diligently, in order to make the WAK happen, and we wanted you to know that we are not giving up at all. ,

This is really sad. What could be the reasons behind this withdrawal of funding? This device holds so much promise for people on dialysis. It offers the freedom from being tethered to a giant machine lifelong! It offers a real chance at normalcy for us dialysis patients. Things were looking so good. The FDA even approved the device for the accelerated approval pathway and we were told that in 3 years from then (more than a year back), the device would be in the market!

I may be over-reacting here but I have read of a couple of instances where the big corporates have scuttled the development of such game-changing devices to protect their own business interests. The way this has happened - initially promising funding and then withdrawing it at a crucial stage - all points to some sinister conspiracy against the development of the WAK.

I have no clue on Dr. Victor Gura's plans to tide this crisis. All I can say is that the hopes and prayers of the entire dialysis patient community are with him and his team and we strongly wish that he overcomes this situation and succeeds in his mission to bring succour to the thousands of patients worldwide.

Thursday, October 24, 2013

Aashayein being held in Delhi!

Karnataka's PD pilot - what happened last year?

I was happy to read yesterday that Karnataka was launching a pilot project on Peritoneal Dialysis. The state would bear 65% of the cost and the rest would be borne by patients. As I thought about it, I felt a sense of deja-vu. I had read this earlier as well! Guess what a Google search for "Karnataka PD pilot" threw up? The second result was my blog dated February 6th, 2012 on this same topic!

The same proposal, the same institute, the same director! Well, I really wonder what has been happening on this proposal for the last one and half years? Anyway, I am not going to complain. We all know how things in the government take time. More so when it is really for the good of the people!

I really believe that Peritoneal Dialysis is an excellent alternative to hemodialysis. It requires no expensive machines, no expensive staff, not much infrastructure and it can be done in the convenience of home! What more can one ask for?

Despite all its benefits, PD has always been the step-child of nephrology, a bad word, something not talked about with respect, something not for real people. The big corporates have frowned upon any promotion of PD. It did not sit well in their grand scheme of things. Patients would have more power. Patients would be more normal. They would not need to come to the nephrologists as often. They would not need to come to the hospitals as often. All this was bad business! And isn't that what healthcare has become all about - business? Who cares about the patient?

When I was put on PD back in 1999, it was more expensive than hemodialysis. At least there was a valid excuse for patients to not be recommended PD. Over the years, however, it has become cheaper than hemodialysis. Thankfully, there are no businessmen colluding to keep prices high! However, despite this, the penetration of PD is still abysmally low. Who is to blame? I still see many patients who have not even heard of PD!

So, in all this gloom, when such a piece of news comes in the form of a Government scheme to promote PD, I cannot be anything but delighted! Doesn't matter if the scheme is a year and half old. The Institute of Nephro Urology, its Director, G. K. Venkatesh and the Government of Karnataka, all deserve to be congratulated!

Thursday, October 17, 2013

The Renal Diet need not be that bad!

When someone is put on dialysis, ideally they must see a dietician. A dietician who is experienced in seeing dialysis patients would assess your food habits, your blood investigation results and then customize your diet according to your needs. In India, however, many nephrologists hand out a one-size-fits-all diet plan and do not insist on a diet consult. This could be because the patient would see this as a waste of money.

The trouble with a standard renal diet plan is that a lot of unnecessary restrictions are imposed. This results in the patient getting extremely frustrated and often, going into malnutrition which is a bigger problem than eating the wrong food.

If someone is on regular, thrice weekly dialysis, they do not really need to restrict their diet so much. You need to know the basics of Potassium, Phosphorus, Sodium and fluid and you can actually bring in a lot of variety into your diet. Food can really be much better!

In fact, there is a very small list of foods that must totally be avoided. Everything else can be had in moderation. I once overheard a tech talking to someone who had been on dialysis for the last 3-4 years. The patient said he had not tasted a mango for the past 3-4 years! Yes, mangoes are very high potassium fruits but I am sure, by checking with your nephrologist or dietician, a small slice once in a way in the first half an hour of dialysis, especially if you're getting regular, thrice weekly dialysis, cannot be that bad!

The key is moderation! You obviously cannot binge on fruits but a little fruit once in a way cannot kill you. There are people who get so completely swayed by the not completely thought through advice on diet that they take things to other extremes. And an over-enthusiastic spouse or offspring does not help!

Once someone is on dialysis for a while, say a couple of years, they figure out, by and large, what works and what does not work. They have tried different stuff, stretched the limit, little by little and know their bodies well enough to actually disregard the diet chart given to them and do their own thing.

The way we humans think, it is better to have a small quantity of something in safe circumstances than to crave it so badly that it leads us to depression!

Tuesday, October 15, 2013

Is 2016 going be my year of liberation?

I was thrilled to read recently about a collaboration between a medical devices company in the US, Medtronic and Indian healthcare giant Apollo Hospitals to "bring an affordable and portable hemodialysis system to India." I have never seen the words "affordable", "portable", "hemodialysis" and "India" in the same sentence before. Naturally, I was excited!

What is striking about this announcement is that Medtronic chose to launch their device in India. I have no clue about their financial incentives to do this but it just seems too good to be true! For years now, we have had the NxStage System One available for dialysis patients in the US. There is no sign of it becoming available in India. Our country is not even on their radar. So, while patients go on rafting expeditions in the US thanks to this wonderful machine, my fellow patients in India and I must continue to be shackled to our mammoth machines and travel unhindered only in our dreams!

The announcement says, "The commercial launch of the product is slated for 2016." Oh my god! This is not even decades away. We have kept reading about wearable machines, about implantable machines the size of a coffee cup and many other fancy sounding, fantastic solutions for kidney failure. The trouble with all these machines, for patients in India is that these are many, many years away from us. Even the WAK, which they say would be out in the US in the next 2-3 years, would take a long time to reach India.

The Medtronics device is expected to be launched in India in 2016. Read that again. Digest its significance. 2016. India. And it is going to be portable and affordable. I am really not used to such good news!

If this really happens, I don't need to rush back to Hyderabad after 2 nights away.

If this really happens, I can travel to any place in the world and not worry about being close enough to a dialysis center.

If this really happens, I don't need to watch my fluid intake when I am on a holiday!

If this really happens, I don't need to feel the heaviness in my chest when I am on a holiday!

If this really happens, my family and I don't even need to look for a house to move to that has enough place for an RO plant!

The freedom that this kind of a machine offers is unimaginable! Seriously, only someone on dialysis can understand this!

Is 2016, finally, going to be my year of liberation?

Saturday, October 12, 2013

Fistula infection

On Tuesday, dialysis ended normally. Around 10:30 in the morning however, I felt pain in the venous puncture site. There was a slight swelling around the puncture site. I was wearing a formal shirt which had full sleeves and the cloth kept touching my puncture site and made the discomfort worse. One more reason for me to hate formal clothes at work!

By afternoon, I developed a slight fever as well and I decided to go back home. I called Dr. P. C. Gupta, the vascular surgeon who made my fistula back in 2005 and who is a wizard when it comes to matters of the vascular system in the human body and asked to see him right away. This had to be treated quickly. Luckily I was asked to come over immediately.

Dr. Gupta said it was infected and I would need to be put on antibiotics. Augmentin 625 mg twice daily. I thanked him and went back home and started the antibiotic. Being Tuesday, I did not have dialysis that day. The next morning the fever had gone up to 101 degrees F. I was feeling quite bad as well. I had some breakfast and took the antibiotic apart from some paracetamol. The whole day was quite bad. The fever touched 103 and wasn't coming down.

I had already skipped dialysis the previous night. So, I absolutely had to get dialysis on Wednesday night. However, dialysis cannot be started at temperatures above 100 degrees. Despite taking paracetamol, the temperature was just not falling!

I called Dr. Gupta in the evening and he advised to add Cifran 250 mg twice daily and also send the puss for a culture. Within two hours of taking the Cifran, the temperature started reducing. By about 10:30 in the night, the temperature was at 99.8 and we started dialysis.

The next morning, I felt even better. Though there was a lot of weakness (I was taking two very strong antibiotics at the same time!) and a horrible taste in my mouth, at least the fever had become normal and the infection was healing.

As I was leaving Dr. Gupta's room on Tuesday, he remarked that the repeated infection could be due to the buttonhole technique I was using. It was true that the buttonhole method was prone to more infections than the regular cannulation techniques. He added however that it was a small price to pay for the convenience and the long life of my fistula. That quite settled things!

Saturday, October 5, 2013

Yours truly featured in Home Dialysis Central!

When I got onto Daily Nocturnal Home Hemodialysis back in 2006, it was quite a challenge to figure out even the basics as I couldn't find anyone else on this modality in India. I relied primarily on the internet, mainly, Home Dialysis Central for information. There were some really helpful people there who answered every question I had. They had been there, done that and were ever willing to provide answers to newbies like me who were just starting off.

Today, I am proud to let you'll know that the site has added my story to their patient stories section! Here is a link to the page. Home Dialysis Central is one of the best resources to information about home dialysis you can find on the internet. It has some really useful information, links and videos related to all home dialysis modalities including PD and home hemo. It also has forums for various modalities where your questions can be answered. Another very valuable aspect is the presence of home dialysis experts like Dr. John Agar who also answer questions posted there!

Many thanks to Dori Schatell, the founder of that site and an amazing person!

Wednesday, October 2, 2013

Had a great birthday!

I turned xx a few days back. I had a party for the NephroPlus team at home the night before. My parents were very keen on having the clinical staff over. For the last three years Sandeep has been coming home to surprise me at midnight with a bunch of people from the company and I actually cut the cake while on dialysis! So, this year, my parents wanted to have a gathering of the whole team at home.

I sent out the invite to all a few days before hand. People were excited. The Center Manager from our Chennai center and one of our technicians from Mahbubnagar actually came all the way to Hyderabad just for my party!

On the day of the party, we had about eighty people attend the party and we had a fantastic time. We played a game of Antakshari as well apart from a whole lot of singing and dancing. We brought in my birthday at midnight and wound up by about 1.

I got a bunch of gifts as well. Many of them were personalized and I realized that a lot of effort had gone in in putting this together!

The next day, on my actual birthday, I had dinner at my favorite restaurant in town, Little Italy with my family. The good times continued on the 29th as well. In the morning, we had a huge family gathering at an aunt's house (not birthday related, but had a lot of great food and fun!). That evening, I met some friends over dinner at another good place - Olive Bistro.

So, it was an awesome three days of fun!