Saturday, December 22, 2018

Social Media Detox



There have been times when I was a heavy social media user. I would log in to Facebook every morning and evening and make sure I did not miss a single post by anybody. After a while though, this went down to once a day. I also had a Twitter account but rarely used it except to post links to new blog posts. I also got myself an Instagram account.

The turning point came when I heard the Calm Masterclass on Social Media Addiction  That was when it struck me. I had become hooked to the likes and comments on my posts on Facebook. After I posted a simple picture, I would keep checking my Facebook for how many likes and comments I got. I would get a kick out of this attention. I then followed some advice given in that Masterclass. I removed all social media apps from my phone. I would check my social media accounts only when I was in front of my primary computer which is an iPad Pro. That helped reduce this problem significantly.

Recently, I posted a joke on Facebook about Yogi Adityanath renaming things. Within a few hours, two people picked up a fight with each other. The comments started getting personal and insulting of religions. That’s when I realised what a mess this had become. I decide to deactivate (not delete yet) my Facebook account. I thought it was not worth it. I had more than 2,700 ‘friends’. Honestly, I hadn’t met or even knew more than 75% of them. I kept accepting requests initially from every single person. Then I restricted this to people who at least had one common friend with me. But now, I just gave up. My account is currently inactive. I plan to delete it soon.

I also created a LinkedIn account a few years back. The only time I used it was when someone sent me a friend request. Not worth it, I thought. I deleted the account completely a couple of days ago.

I still have my Twitter and Instagram accounts. I am not hooked to these and I find the interaction here is very limited. I have much fewer people following me and I follow very few people. This is at least sane. Let’s see how this goes.

Saturday, December 8, 2018

If I were to pick my career again without any pressure or constraints...



When I was in school, around middle school maybe, the topic of career choices started being discussed. At home as well as among friends, the topic of what we wanted to be when we grew up would inevitably come up every once in a while. It was time to grow beyond the childhood fantasy of becoming the engine driver of a railway train.

Engineering and Medicine were the coolest professions. Those were what all the toppers took. Wanting to become a businessman was looked upon as an excuse for not wanting to study a whole lot. Careers involving the Arts were not even considered options worth discussing.

For me, it all boiled down to either Engineering or Medicine. I did not consider, even for a moment any other profession. Unfortunately, I started meditation all of forty years later. I did not even know what my inner self wanted. I wasn’t even aware of its existence. 

Now, I have the luxury of being able to travel back in time, albeit through words, trying to reflect and ask myself - if I were to choose again and there were no constraints, what profession would I pick?

One caveat here - if I had any inkling about my upcoming kidney disease, I would have picked medicine, nephrology precisely.

At that time, Medicine was ruled out. I hated Biology. Did I really like Engineering? What did I know about Engineering when I was not even fifteen? When I look back on those days, I really think I enjoyed English Literature and Indian History. I loved the way writers could transport you into another world simply by weaving a web of words. I was amazed at the rhythm poets would bring into their poems as if the words were made just for those lines. 

Indian History, where we covered India right from the times of the Indus Valley civilisation up to the rule of the Mughals was very fascinating. The stories of the various dynasties and how they ruled the country for centuries left a deep impression on my mind.

Even today, I love reading on these topics. However, I have added to the little exposure I got to these topics in school only informally over the years by reading articles and books on similar subjects.

I believe I would pick one of these areas if I was given a choice back in time minus constraints of finances, ‘cool quotient’ and reputation. 

Saturday, November 24, 2018

Europe Diary




I’ve had Switzerland on my bucket list for a long time now. So, when I got to know that the next aHUS Alliance meeting was being planned in the Netherlands, I felt that it would the perfect opportunity to visit Europe. I did not want to do too many places. I thought of just doing Holland and Switzerland. The conference was in Nijmegen, a one and half hour drive from Amsterdam. I would spend two nights in Nijmegen, one in Amsterdam and then about a week in Zurich. While planning, I learnt that Lucerne was a more beautiful place than Zurich (which was more of a commercial city) and then decided to do a week in Lucerne instead of Zurich. My parents also came along.

Nijmegen

We took an early morning Etihad flight from Hyderabad to Amsterdam via Abu Dhabi. It was very cold when we landed. There was a cold breeze as well. We took a cab to Nijmegen. The countryside was very beautiful. Autumn brought out some of the most beautiful colours in the trees. We reached Nijmegen, supposedly the oldest town in The Netherlands in the evening. There was a welcome dinner for the people attending the meeting. 

I met several people I had known online for years but had never met. The aHUS community is a small, closely-knit one with the common thread of an ultra-rare disease binding together people with very different backgrounds from different parts of the world. While our individual situations are very different, we have similar frustrations with governments and pharmaceutical companies.




Lucerne

Lucerne is a small city about 50 kilmoeters from Zurich. Lake Lucerne is at the heart of the city, a huge lake which is shaped like a human hand - with five fingers branching out from the middle. The city is surrounded by snow-capped mountains and is known for its medieval architecture. The old town has cobblestone roads and there is Kapellbrücke (Chapel Bridge), a covered bridge adorned with paintings that is on one part of the lake. Lucerne has very old buildings and a very charming feel to it. Trees of different hues line the roads on both sides. Even a simple walk along the streets of the city can be refreshing.

Like the rest of Europe, Lucerne and the rest of Switzerland has a very efficient public transport system. Infrastructure in all respects is very good.






The Top of Europe 

Mount Jungfrajoch is the highest peak in Europe. We took a train from Lucerne station and had to change 3 trains and a bus to finally reach the mountain top. The sights along the way were nothing like we had ever seen before. The reward was more than worth the effort. At the top, they had several points where you could go and see the snow. There were also points where you could actually step out into the snow and enjoy the cold, freezing temperature.

The place is so popular among Indians that they actually have a restaurant called Bollywood right on top. If you exclude the Chinese, Indians form the highest proportion of tourists in Jungfraujoch. 







Mount Pilatus

We did a trip to Mount Pilatus next. To get to this mountain top, we took a cruise ride to a place called Alpnachstad. From there, we got on to a Cogwheel train which was supposed to make the steepest climb by any train in the world. The train literally went up at an angle of 45 degrees throughout the journey. There was one point where we were in the middle of clouds and then after a few moments of very poor visibility, in an instant we were right above the clouds. The scene was like we were looking at a sea which was very rough except that these were all clouds.











Swiss Fondue and Raclette

During our trip we had some traditional Swiss Fondue and Raclette. A fondue consists of melted cheese that is served in a bowl that is placed above a flame. The cheese continues to boil while you use a tall fork to take a piece of bread, dip it in the boiling, melted cheese and put it in your mouth followed by some veggies. We thoroughly enjoyed the boiling cheese in the middle of the bone-chilling weather. Then we had Raclette where there is a cast iron pan that is heated by a live flame. You put a thick slice of cheese on the pan. While the cheese is heating, you take some veggies in your plate. Once the cheese becomes soft, you lift the pan and pour the melted cheese on to the veggies. Both the dishes were really different and unique.






Hemodiafiltration

I got four sessions of Hemodialfiltration during my trip - one in Nijmegen and three in Lucerne. This was the first time I underwent HDF. It was very good. The recovery time was hardly anything and I felt completely normal after the session. During the session as well, despite not being used to four hour sessions and having large weight gains thanks to the generous amounts of fluid I had consumed, I did not have a single complication.



Mixed Feelings 

As we got onto the flight, I had mixed feelings about coming back. Life is always like that. While I love to travel, the fact that I need to go for dialysis every alternate day can be quite a dampener. Also, when you get used to daily nocturnal home hemo, you are used to a life that is unfettered by diet and fluid restrictions. So, when you are on a holiday, instead of actually having a good time drinking and eating, it can be quite irritating to need to watch your food and liquid.

I was sad that such a beautiful trip was ending but I was happy that I was getting back to my familiar, comfortable home hemodialysis. There’s no place like home when it comes to dialysis!

Saturday, November 3, 2018

Blood Pressure control for Dialysis Patients



The beauty about science is that it is ever-changing. If fresh evidence is found that contradicts well-established theories, science will easily discard the old theory and adopt a new theory that better explains the new evidence. While this is great in many ways, you can never be too sure of your current theories. In Medicine this is all the more troublesome because you are dealing with lives here. Doctors could be treating you based on the currently available evidence. However, at some point in the future, they could well realise that the treatment was based on flawed premises. Where does that leave the patient?

Take Anemia Management in Dialysis patients for instance. There have been a number of studies that have revised the target Hemoglobin range among Dialysis patients. So for a few years everyone was using 10 - 12 g/dL as the target range. Then suddenly there was evidence that revised this range to 9 to 10.5!

Nephron Power covers the same issue with respect to Blood Pressure (BP) targets. In two posts (which you can read here and here , Hillel Sternlicht MD describes the timeline of how targets for BP have changed over the years. These posts talk about BP targets in general and a brief mention about early CKD stages. In Dialysis, there is the additional complexity of BP medication getting filtered out during a dialysis session (more about this here).

How should these ever-changing targets be made sense of? Should one disregard the changes and go with common sense? Should one keep up with every new piece of research and update practice accordingly? Dr. Sternlicht concludes rather beautifully:

“... the challenge of our times is to relinquish some of our clinical autonomy in order to integrate (complex) treatment algorithms. The oncology community has been at the vanguard of leveraging these developments. With distinct chemotherapeutic regimens based on the hormonal and genetic profiles of phenotypically similar cancers, they have come to appreciate that this “complexity” is the foundation of precision medicine.”

So, like so many things in medicine, one-size-fits-all is hardly the answer. Tailoring the target BP by individual could be a starting point in solving this problem. If you are on dialysis and your BP is not under control, you should talk to your nephrologist about the various options available and try to bring it under control. Discuss the possibility of your drugs getting filtered out. Discuss if another type of BP drugs needs to be added.

Remember, BP control is a very critical aspect of heart health. Several dialysis patients succumb to heart failure and cardiac arrests. Poor BP control contributes significantly to heart problems. So, do all you can to keep your BP under check. Never give up and accept high BPs as a part of life. It is impossible to find solutions solely by relying on the internet and Facebook groups. A combination of study of internet articles, peer advice from Facebook groups and most importantly a healthy discussion with your nephrologist is a good way to begin to address the problem.

Sunday, October 14, 2018

Madi Taru Kanku Kharyu Ne Sooraj Ugyo

I heard this famous Gujarati Bhajan for the first time when my aunt Rita, who is trained in Hindustani Classical Music and has a beautiful voice sang it during a family gathering. I was hooked instantly. At that time, being a kid, I did not understand the meaning. I heard it a couple of times again during similar family occasions from her.

Recently, I looked for it on YouTube and found this brilliant rendition by Osman Mir:



As I learnt later, Morari Bapu  a very revered personality, famous for conducting Ram Kathas found him during a visit to some rural area and was so impressed with his singing that he ensured that he sang at every event he conducted.

The song itself was intitialy sung by the famous singer Rasbihari Desai. The rendition by Osman Mir blurs the false distinctions created by religion and proves that music is agnostic and devotion can be completely secular.

This Navratri, enjoy this soulful bhajan. These days, however, Navratri has changed beyond recognition. The devotional element towards the Mother Goddess has all but disappeared. I am not saying if it is good or bad. But it has changed for sure. This change is more visible in cities. In the villages of Gujarat, the real essence of the Navratri still lives on. Thanks to the likes of Osman Mir and others with his talent and devotion.

Friday, October 12, 2018

Kolkata Diary

It had been a long time since we had done a full-fledged Aashayein event. The last one I think was in Delhi in 2015. Now that we have a sizeable presence in the East, the Head of Operations of the East Zone, Alok decided to hold an Aashayein event in Kolkata. So, on the Saturday that just went by, I was on a morning flight to Kolkata.

Two Kolkatas

Like many other cities, Kolkata also has an old city that gets much less love from the government than the newer part of the city. So, while you have places like Barasat which is abundant in filth and grime, you also have Salt Lake and Rajarhat which are sparkling clean and green. The old city has narrow lanes with dilapidated buildings while the new city has wide roads with landscaped medians and fancy buildings with all the fancy companies occupying them.

Mishti Doi

Mishti Doi is a long time favourite from Kolkata. Literally translated to Sweet Curd, it is a simple preparation made out of caramelised sugar and thick curd. We stopped at a sweet shop that sold traditional Bengali sweets. I asked for a serving of Mishti Doi. It tasted more natural than the stuff I had tasted earlier. I also had some Sandesh which is another traditional Bengali sweet. The beauty about many Bengali sweets is that they are really very simple. Not too many flavours to overwhelm you, the base ingredient is usually milk or a derivative.


Mishti Doi


Sandesh

Street Food

Kolkata is famous for its street food. I looked up the internet for recommendations. There were a couple of good joints close to where I stayed. I decided to walk down to them. One thing I realised a few years back is that you get a flavour of a place only when you walk on its streets. Often, I am used to a very protected environment - commute in cabs, be surrounded by people who know me and so on. As I walked down the street towards the Shatrughan Sah Muriwala (apparently this place had won an award for the Best Kolkata Street Food), I took in the sights and air of the city. This felt good. 

I almost missed the joint. It wasn’t a permanent shop. There wasn’t even a board. I asked someone for directions and was pointed towards a small table with a middle-aged moustached man behind it. I leaned over and asked him if he indeed was Shatrughan Sah Muriwala? He nodded and pointed to a framed certificate which he had hung on a nail on the wall behind him. The certificate did say that this was the same guy. I ordered myself a serving of Jhal Muri. He made one in less than a minute and handed me the paper packet with the Muri. It was crisp, tangy, flavourful. The main flavour of the Muri comes from the mustard oil which has a peculiar taste. I loved the Muri. 

I then went to a counter about 20 feet away where another man was making Chilla (a dish similar to a Dosa but made out of green gram). I ordered one. I debated whether to ask for it without the chutney or to lower my guard. My tongue won the battle while my mind protested. The Chilla was very good. The spicy chutney added to the flavour. I was just hoping they had used clean water to make it. But the deed was done.


Jhal Muri


Chilla

The iconic Flury’s

To me, this Kolkata trip evoked memories of the beautiful film, Parineeta which was based in the city. Based in the past, the movie has its characters going to Flury’s for a treat. I learnt that Flury’s was just down the street from where I was staying. ‘Flury’s to banta hai!’ The place was very well done. I ordered myself a Red Velvet pastry and a Chocolate Mousse, the two eggless items on the dessert menu. Both were very good. For some reason, the song from the movie, Kaisi Paheli Zindagani kept coming to me.


Dessert at Flury’s

As I left the place, I began wondering how my stomach would react to the dinner I had that evening. The event was the next day and I had gone and eaten what was possibly the riskiest meal I had had in the past several years. I asked for directions to a medical shop and stocked up on some medication. Just in case.

Centre visits

We have two centres in Kolkata city. One is in Barasat in Mega City Nursing Home and the other is in Prannath Pandit Street in Health Point Hospital. I spent time with the teams and pepped them up for the event the next day. Visiting our centres is always a pleasure. I get to see first hand the impact our teams are having on the guests we serve every day.

I was amazed with the response of one of the guests who said that a few months back, he used to be brought in a stretcher and carried onto the dialysis bed. The quality of dialysis was so good that he is now full of energy and comes and goes on his bike independently. That felt so good to hear. When I hear such stories and see the dedication of the ground teams, I feel that all the effort put in on a daily basis, the struggle against the inefficient and resource-starved healthcare system in our country, the challenges of managing a network that is growing in leaps and bounds with every passing month is all worth it.



With the two centre teams

Aashayein - Let’s Celebrate Life

Almost 200 people attended the Aashayein event. People loved the event. One of the doctors who spoke at the event said that was the first time he was addressing a gathering of patients. There was a talk by a nephrologist on some tips to lead a normal life despite being on dialysis. There was a talk by a Dietician on how to make food interesting. There was a Best Fistula Contest judged by a Vascular Surgeon who went on to talk about how to take good care of your fistula. I spoke about the important of work and exercise on dialysis. We had a lot of games and entertainment as well. Those on dialysis could also take part in a talent competition.

The overarching theme of the event was that people on dialysis can lead normal lives. It was aimed to get them and others to believe in this and discard misconceptions about restrictions on things you can do while on dialysis. The feedback was very positive.

One important aspect of this event was the chance to meet other people on dialysis in an informal, cheerful setting. Merely seeing other people going through similar issues like you do can be reassuring. Towards the end of the event, I recited a satirical Hindi poem I had written about a fictional character called Sharma ji who was on dialysis. These lines resonated with several people who attended:

Paani to maap kar hi piya,
Pata nahi 5 kilo kaise badh gaya!



Aashayein

Friday, October 5, 2018

Aashayein Kolkata this Sunday

We’re hosting an Aashayein this Sunday at Kolkata. This event, a first-of-its kind one, can be attended by all those on dialysis in the state of West Bengal. It is a day-long education and entertainment-filled event completely free of cost for those on dialysis and one family member / friend. It is being held at Hotel Niharika, A J C Bose Road.

We have an impressive list of speakers - ranging from a nephrologist to a dietician to a vascular surgeon. There will also be an elaborate lunch as per the dialysis diet. There will also be a Best Fistula Contest.

The Aashayein events have been loved by those on dialysis every time we have hosted them. Click here to read about and see some glimpses from previous events.

So, if you are from West Bengal, please do come. Click on this link to register. I will also be there.




Sunday, September 16, 2018

Calm Masterclass: Discovering Happiness


Something that unites us all in what we seek is happiness. Everyone wants to be happy. We do almost everything we do in order to be happy. We all have different notions of happiness and what it takes to achieve. However, if you look at the goal, it is mostly the same.

I have an app called Calm which I use for my meditation every day. I have been meditating without a break for the last 300+ days and meditation has changed my life in unimaginable ways. Calm has a Masterclass section and I had written recently about what I learnt from the Masterclass on Social Media  I completed the Masterclass called Discovering Happiness recently and found some really insightful thoughts in it. Shawn Achor  a Happiness researcher and author of the book ‘The Happiness Advantage’ has taught this Masterclass.

What caught my attention was some of the findings from actual scientific experiments around happiness that Shawn and his team conducted. They showed that happiness can never be linked to an event. For example, many of us feel that we will be happy after we graduate, get a job, get married, have kids, get a promotion, reach a certain level at work and so on. But the definition of happiness changes the moment we achieve that. Then it is all about the next goal.

Happiness, research says has nothing to do with wealth after a certain amount of money to meet basic needs like food, shelter and clothing is earned. Several celebrities and rich people suffer from severe depression. Happiness is a continuous process. It is partly genetic but the best part is by doing a few simple things, your happiness levels can be increased way beyond wheat your genes dictate. Here are five of the most simple things that can be done in a few minutes each day. If these are done for 21 days continuously, the research says your happiness levels will increase significantly:

1. Gratitude: Write down 3 different things each day that you are grateful for. The important thing is to write different things each day. It could be as wide as having air to breathe, not living in a terrorism struck country and so on or as specific as being able to eat your favourite dish for dinner last night.

2. Journaling: Write a few words each day about something positive that happened to you in the past 24 hours. Describe it in a little detail. Write what happened and how.

3. Aerobic Exercise: Fifteen minutes of any aerobic exercise like brisk walking, jogging, swimming, running or cycling impacts happiness levels as well.

4. Meditation: Even something as simple as two minutes a day of focusing on the breath can help. Ten minutes of meditation using a simple app can have very good results.

5. Sharing your happiness: Write a short positive note to someone. It could be to thank someone for what they did. It could be praising someone for something. It can be just a couple of lines.

The best part about the above is I do three of these already. I need to add the other two. They all look pretty simple to me. If I am able to improve my happiness levels, why not?

Wednesday, September 5, 2018

On Dialysis, got talent? Showcase it!


If you’re an avid painter, are proud of your singing / dancing skills or write poetry, here’s your chance to show the world how good you are. Join the Talent Contest being organised by us at NephroPlus. All you need to do is to submit your painting / audio / video clip / photograph / poem etc. to the email address mentioned in the poster above. Or you can post it on the NephroPlus Facebook page or Twitter handle with the specified hashtag.

The First Prize is a 3 night/4 day Holiday Dialysis Package and the First Runner Up gets a Dinner for two people at a Five Star hotel. I will be submitting my entry soon!

Forgot to mention one thing: the contest is open only to those on dialysis. 😛


Sunday, August 19, 2018

What you can do to live a full life on dialysis


Dialysis is often made out to be the worst thing ever. People think dialysis is pretty much the end of life. In India especially, not dialysis, it is your friends and neighbours and their half-knowledge and hearsay that will kill you. There are so many misconceptions about dialysis floating around among the population that it is dangerous.

The internet these days and more so, social media (Whatsapp included) has become the biggest source of misinformation. There are of course, several reliable sources of good information but it is equally easy to find completely wrong, baseless articles as well.

Despite what your neighbour and helpful aunty say, you can live a complete life on dialysis. Here are a few things you can do:

1. Get as much dialysis as you practically can: Most people feel that if you can manage with two sessions per week, why do the third. While there is some evidence that suggests that less dialysis can be good in the early days of kidney failure, once your kidneys have failed completely, the more dialysis you do, the better it is for you. Some people may attribute this advice to me being the co-founder of a dialysis company. If dialysis patients do more dialysis then I make more money. Right?

Wrong. I personally do five nights a week, seven and half hours every time. I practise what I preach. Think of it this way. Dialysis is replacing kidney function. Kidneys work 24X7. So logically, you should aim to get as close to that as practically possible. If you’re looking for scientific evidence, check this article out  Most of the other points mentioned below pale in significance compared to this one. Most of the points below and deeply linked to this one.

2. Correct anemia: Anemia means low blood counts - Hemoglobin, RBCs, WBC, Platelets etc. Make sure these are in the recommended range. Having low Hemoglobin can cause breathlessness, weakness, increased chances of infections and so on. Your overall quality of life will be much better if your anemia is corrected. So, don’t skimp on that EPO and Iron.

3. Keep a check on your heart: Most dialysis patients die of cardiac and not kidney problems. Since there is an increased build up of fluid in the body when the kidneys don’t function, the heart needs to pump all the extra fluid which it is not designed for. This can cause the heart to fail over a period of time. Make sure you’re getting your Heart Function checked from time to time. There is a simple test called a 2D Echo Cardiogram that can do this.

4. Food: If you eat meat, keep a check on your Phosphorus and Potassium. If you are vegetarian, keep tabs on your Potassium. Read up on foods that are high in Phosphorus and Potassium. You need to make intelligent food choices. I would say there’s nothing you cannot eat if you’re on dialysis. You need to eat in moderation and you need to balance things out. If you’ve had something high in Potassium, make sure what you eat for the rest of the day is very low in Potassium.

Make sure you get good protein. It is very important to get enough protein during the day. Serum Albumin is a good marker of nutrition. Get it tested regularly.

5. Exercise and Strength Training: Do some exercise every day. Even if it as simple as a walk. Talk to your nephrologist about the different types of exercise you can do. Pick something that you enjoy and do it regularly. You need to exercise your muscles. Long term kidney disease can cause wasting of the muscles. So some kind of strength training for your muscles is important in the long run. More details here.

6. Work: Like your body, you need to exercise your mind as well. This is very important, probably more important than exercising the body. A lot about kidney disease plays out in the mind. Several dialysis patients have depression, trouble with cognition and so on. So, keep your mind active. If you are unable to work full time, work part time. Do something to keep that mind busy.
It is not very difficult to lead a complete, productive and happy life on dialysis. The first step you need to take is to want to be able to do this. You have a choice - you can choose to feel like your life has come to an end - in which case it soon will; or you can choose to lead a normal, slightly different life - in this case too, you soon will. It all really is up to you.

Tuesday, August 14, 2018

Doing conventional dialysis at home is like going to Agra and seeing this

There are many patients in India who get Home Hemodialysis. However, almost all of them get the conventional twice or thrice weekly sessions for four to five hours. They are doing Home Hemodialysis simply for the convenience of dialysing at home and because they can afford it.

Have you seen the Taj Mahal at Agra? Well, if you haven’t seen it in person, there’s a good chance that you’ve seen it in a picture at least. What if you went to Agra to see the Taj and when you went in, you saw only this?



You would be disappointed, right? No majestic domes, no ornate pillars at the four corners of the platform. Well, the smallish facade looks good. But nothing compared to what could have been, right?

Doing conventional twice or thrice weekly hemodialysis at home is good. You have the flexibility of doing dialysis at home. You don’t need to go to a centre. You can enjoy the comfort of home. However, the true beauty of Home Hemodialysis is realised only when you do more frequent dialysis or longer duration dialysis or even better, both.

That’s when you feel the equivalent of seeing the full Taj Mahal. Like this:


The beauty of Home Hemodialysis is the ability it offers you to get more frequent, longer duration dialysis. You are freed from practically all diet and fluid restrictions. Your blood pressures come back to normal. You don’t need any phosphate binders any more. You don’t even need expensive Erythropoietin injections because your anemia disappears. Your restless legs settle. Your cardiac function improves. You don’t feel washed out after a dialysis session.

It is sad that almost everyone in India who does home hemo does it for all the wrong reasons. they are losing out on so much.

Friday, July 27, 2018

Gujarat Diary

I have been wanting to travel for some time now. I hadn’t visited many of our newer centres. So, when Daxesh Patel from our Gujarat centres pinged me one afternoon at work saying I should visit for the launch of the Gujarat centres, I decided that I would attend the events. There were two launches scheduled, one each in Surat and Vadodara, both set up inside the reputed Sunshine Global Hospitals.




Clean and Green Surat

I landed in Surat on a wet afternoon and took a cab to the hotel. After freshening up, I left for the centre which was situated on Dumas Road, right next to the International Business Centre. One thing that struck me as the cab took me to Sunshine Global Hospitals was that the city was very clean and modern. Tall buildings amidst green lands, most of the main roads had tracks for cycling and pedestrians which made commuting very pleasant. I wasn’t too sure if this was the case with the less prominent roads.

One thing was for sure - Surat had come a long way from the days of the plague

As I got out of the lift, I saw a couple of girls wearing the NephroPlus green coloured uniform making a colourful rangoli of the two logos - NephroPlus and Sunshine Global. I was impressed with their enthusiasm. I went into the centre and met the team and the guests on dialysis. The centre was doing an excellent job and the guests all seemed very happy with the team and the facilities. I had dinner with the team at a restaurant close by.

Team mates doing the rangoli the evening before the inauguration


“Surat nu jaman ane Kashi nu maran”

That’s a traditional Gujarati saying that means “Eat in Surat and die in Kashi”. Presumably, these are the two ultimate things in life. I had heard a lot about the Undhiyu and the Ponkh of Surat and wanted to definitely try them during the trip. Unfortunately, many frantic phone calls to the famous restaurants and joints revealed that both these delicacies are available only in the winter. So I had to settle for the lesser pleasures in the culinary landscape of Surat.

On the morning of the launch, I took a cab to Jani Locho and Khaman House at Adajania Gam and ordered a plate of Locho. It was a soft, steamed dish with the consistency of upma but the taste that reminded me of Khaman Dhokla. It was topped generously with butter and sev and served with a sheet green chutney. I loved every bite.


Surti Locho

Once I was done, I wanted to have the famous Jalebi and Fafda. I was directed next door to the Jani Farsan House and they packed up some Jalebis, Fafda, Kadhi and some sautéed and salted chillies. I took this packet and headed back to the hotel where I enjoyed the whole combination. Kadhi with the Fafda is something I have seen only in Gujarat. Jalebi and Fafda is also available in Hyderabad but no one serves it with Kadhi.

Jalebi, Fafda, Marcha and Kadhi

The launch went off very well. It was however time for lunch and I was starving. I took a couple of my colleagues and headed out to a place called Kansar at Nanpura which served the Gujarati Thali. This was very similar to the Rajdhani Thali I was used to in Hyderabad but there were two sweets which were really excellent - the Fruit Shrikhand and the Khajur and Anjeer Vedhmi. I did not have much of the regular phulka, dal, kadhi and vegetables but helped myself generously to these two sweets.

The Gujarati Thali at Kansar

Khajur Anjeer Vedhmi

Train Ride to Vadodara

I took a Double Decker Air Conditioned Chair Car Train from Surat to Vadodara. It was a very pleasant experience. Sitting on the window seat of a train that passes through the interiors of almost any state in India can be an enriching experience. I saw blankets on the earth of different shades of green one after the other interrupted by a lone tree once in a while. This was a welcome change from the landscape of the cities.

We reached by 7:30 in the evening. I checked in to my hotel and headed straight for Mohanthal, another thali place in Vadodara situated at Vadi Wadi. There I met our team from the existing Vadodara centre at Raopura inside Shreenath Clinic. This was a bunch of highly dedicated and very capable dialysis technicians. I also met with our Medical Director for this centre, Dr. Kamlesh Parikh and his wife, Dr. Dipti Parikh. After a very engaging conversation on a variety of issues ranging from how NephroPlus was born to the government’s healthcare policy to whom Gujarat was going to vote for in the next election, we drove down to Paras Pan Shop where we got to see things like Smoke Ice Pan and Fire Pan. Dr. Parikh and my colleagues Vinit and Daxesh tried the Smoke Ice pan which had plumes of smoke gushing out from their noses once they put the pan in their mouths.

The Real Heroes of the NephroPlus Story

The inauguration of the centre was done the next morning by the Guru of the hospital owner, Dr. Bhikubhai Mehta. We had a press conference after that. I spent some time with the centre team after that and again with the team at the Raopura centre. 

NephroPlus Surat Team (in Sunshine Global Hospital)

NephroPlus Raopura, Vadodara Team (in Shreenath Clinic)

NephroPlus Manjalpur, Vadodara Team (in Sunshine Global Hospital)

I was amazed at the dedication and the simplicity of the teams. These people (and all our centre teams) are the real heroes in the NephroPlus story honestly. Genuine change is being brought to lives by these nameless and faceless clinical teams who toil day after day, taking care of our guests and changing their lives. Their names don’t appear in newspapers. No stories are written about them. Yet, they develop such strong bonds with our guests that they make the dialysis centre a second home. They serve selflessly, incessantly, even if there is massive rain or a general strike. We have seen many examples where our teams have risen way above the call of duty and done more than what their job demanded of them.

When I meet our centre teams, see the genuine warmth towards our guests and think of the impact these people are making and how they are achieving the vision of the company, my eyes usually swell up. I don’t need to worry about what is happening in the centre. I can sleep in peace. 

Thanks so much, dear team mates!

Thursday, July 12, 2018

Interest or career growth?


Many people do stuff only if it is useful. Which language to learn? Spanish or Mandarin because it will be useful for me in my work. Who to become friends with? X, Y or Z because they will be useful to me in the future growth of my business or career. Where should I go? A, B or C so that I can meet new people who could help me expand my business or in my career.

I find these thoughts very hollow. Passion, genuine interest and what your soul wants is being thrown to the wind. Finally, it all boils down to what would help you grow your bank balance.

I am learning Portuguese because I like the language and not because it could be useful to me in the future. I bake bread not because I want to become a professional baker. Everything does not have to be about career for me. 

I like to do things because I have a passion for those things. I genuinely enjoy those things. I like to make friends with people not because they might be useful to me in the future but because I genuinely like them.

Is this thought process because of the stage of life I am in? Is it a function of age? Is it because of my disease which enables me to see life from a different perspective? 

I don’t know the answers to these questions. and neither do I care. I do and will continue to do things only to satisfy my soul and not to fill my resume or LinkedIn contacts list.

Saturday, July 7, 2018

What’s up?





I’m doing a number of things these days. Work keeps me busy for a lot of time, most of all week days. But I am able to allot my free time to some interesting activities.

I have been meditating for ten minutes every morning for about 200+ days without a break. I have added a ten minute meditation session in the evening as well. I do this almost as soon as I come back from work. I really like the new avenues meditation has opened up for me. I will write more about this later but it has given me the most important realisation that the mind is not really who I am. What the mind thinks are not necessarily my thoughts. Intriguing? I couldn’t agree more.

These days, the most of what I write is for myself. This sort-of ties in to my meditation routine. I have started keeping a journal. That is why the number of my blog posts has gone down drastically of late. Journaling is said to be one of the best habits that can be developed for the mind. I am also working on another long-term writing ‘enterprise of honourable, dangerous consequence’. More details later.

About a year or so back, I happened to hear some conversations in Portuguese. This drew me closely to the language in an inexplicable way. I had a yearning to learn the language ever since then. I started learning it from January this year. I use an app called Babbel. I am almost through the Beginner’s courses and will soon move to the advanced level. Learning a new language is an excellent way to exercise your mind.

On Sundays, I leave home at 8 in the morning, go to Govind’s in Banjara Hills and have my fill of steaming hot Idlis and Vadas. I then go to the Secunderabad Jain Temple where I teach a bunch of about 30 kids from the age of around 12 to 16 about spirituality and the Jain religion. I try to keep my class free of dogma. I encourage the kids to ask questions and not accept things that don’t make sense. I also teach them not to disparage other religions and help them understand that hate in the name of religion is the worst possible insult to your own religion. I believe this is a golden opportunity to shape the thinking of these impressionable minds. Ordinarily, they would not be exposed to much other than the traditional views - if you do this, you go to hell, do that and you get rich kind of bullshit that is peddled in the name of religion these days. So I am glad I am giving them a slightly different, more universal concept of religion which may actually help them shape their worldview better.

Apart from this, I am swimming almost every day. I have also started doing some strength-training. I found myself struggling to get up from a chair without the help of my hands. I was advised on the Internet to start some strength training. I have a physiotherapist coming home 5 days a week in the morning for 30 minutes of flexibility and strength training. It has already shown remarkable results.

I have a lot to look forward to in my day. Now, the only itch that remains unfulfilled to some extent is that of travel. I really want to travel more. I am going to work hard on this aspect over the coming weeks.

Wednesday, June 27, 2018

These are a few of my most-hated things

(To be sung in the tune of Raindrops on roses from The Sound of Music)

If you disturb me during my tea ceremony,
You’ll be the object of my acrimony.

Habitual latecomers who’ve no business being late,
I absolutely hate people who make me wait.

Talking about business during an informal meal,
You’ve absolutely no idea how irritated I feel.

And if I’m stuck in congested traffic,
There’s little else that makes me feel so sick.

Wearing their religion right on their sleeve,
With many people, that’s my pet peeve. 

Making a spectacle about money saved or spent,
Do it quietly, or I’ll need to vent.

Those who’ve a story about everything that’s said,
And will talk endlessly, I want to break their head.

If you serve idlis that are not piping hot,
I promise you, with a gun you’ll be shot.

When it’s raining,
And the wind’s blowing,
And I’m feeling glad.
I simply remember my most-hated things.
And then I do feel so sad.

Here is the original:

 

Saturday, June 16, 2018

The importance of strength training on dialysis

I have been on dialysis for almost 21 years now. One thing I have noticed is that my limbs have begun to get a little weak. For example, I am unable to get up without taking support of my hands on the chair. I am also unable to sit without some support. This is more so for chairs and sofas that are low. I am completely unable to sit on the floor.

Kidney failure, especially when present for more than a few years can cause such issues. Fortunately, there are ways to avoid this and even correct it to some extent if it has already happened.

The best thing to do, obviously, is to prevent it from happening. For this, do some kind of exercise that keeps your joints supple and limbs strong. This link from Life Options has an excellent guide on the different kinds of exercise that can be done by those on dialysis. Try to get started on some kind of exercise that suits you. Include some options from all the three kinds of exercise covered in the link - flexibility, muscle strength and endurance. As with anything in Kidney Disease, check with your doctor before beginning anything new.

To me, muscle strength is very important as losing this can cause a lot of problems in doing basic stuff like sitting and standing up. If you don’t take enough care to maintain good muscle strength, you could end up losing it over a period of time.

However, I recently figured by posting a question on the Facebook group of Home Dialysis Central about the loss of muscle strength and I got some very useful responses and help on what could be done to correct it. An old friend and an old hand at home hemo gave me some very pertinent advice. He said that he had had similar problems and he invested in a good Physiotherapist who came home and spent a few months working on him getting him to exercise so that he could achieve his goals which were pretty straightforward - to be able to sit on and and get up from the floor without support. He has apparently made some very good progress over the past few months.





After reading that, I have engaged with a Physiotherapist and am undergoing training under him for my weak muscles. I have completed two weeks and have already begun to see early results.

Many of us assume, wrongly, that these things cannot be resolved. The beauty is that in today’s world, there is hardly any problem which is being experienced for the first time. People before you have definitely had the same problem. So, ask around to check if they’ve found a solution. In this case, people had found a solution and it will help me as well.

So, try to prevent muscles from becoming weak by undergoing some kind of regular exercise and if they’ve already become weak, take action to regain some of the lost strength.

Saturday, June 9, 2018

Going on international holidays while on dialysis

I often get asked how to go for international holidays while on dialysis. It is not as difficult as you might think. The key is to plan early. Few months in advance is always a good idea.

To begin with, once you’ve decided where to go and the rough dates, the next thing to do is to figure out a dialysis centre. I usually use Global Dialysis to do this. Type your destination in the search field and it will show you dialysis centres close to that location. It will also give you a clickable list of centres with distance from your location.

Spend some time on this list and click on each centre that is at a reasonable distance from your location and read the information about the centre like timings, facilities offered, reviews (very important to see if people liked the services) and so on.

Once you have picked a centre, send them an email with your dates and ask if they will be able to accommodate you. Typically most places are accommodating of holiday dialysis patients. Each centre has its own set of documents needed for dialysis. They will usually be a range of blood tests and prescriptions that would be needed. You can email or fax them to the centre depending on the mode they prefer. I find email the easiest way to communicate. Sometimes you would need to send another set of blood test reports a few days before your travel dates. Always carry a printed copy of all these tests, prescriptions, everything you’ve sent along with you.


After a dialysis session at a centre in Seattle, USA

Remember that not all dialysis centres will have English speaking staff so if you need to call for whatever reason, be very patient. Keep a record of the contact numbers with you and the name of the person you’ve been in touch with. Call a day before your session to confirm your slot.

Every centre has their own protocol for dialysis which may be different from yours. So if you need anything apart from the ordinary, take it with you. For example, I am used to buttonhole needles. I took them with me. I also asked to allow to self-cannulate and all places agreed. Some people are used to lignocaine. If so, take a vial with you. 

In the US, the dialysis centres do not provide blankets and pillows. You have to take them with you as the centres can be cold. 

There are several very good destinations around the world which you can explore even if you’re on dialysis. 

Dialysis Cruises

I love the idea of going on a cruise. There are several cruises that have a dialysis facility on board. They have dialysis staff and even a nephrologist on board. You can check out www.dialysisatsea.com and www.cruisedialysis.co.uk for options.


Aboard a cruise ship in Alaska

Cost

The cost of dialysis in most international locations is much more than a session in India. So, remember to find out upfront about the cost and also find out the payment options - whether they accept credit cards or need cash etc. and be prepared with this. Most insurance companies will not reimburse the cost of dialysis abroad.

Session timings

Many centres (especially in the US) will confirm dates but not let you know the time of your session until the week before your session. So, better to avoid travel on the dialysis days.

International travel is very exciting for those who can afford it. It not only gives you a chance to see lovely places, it also gives you an insight into dialysis services in other countries.

Do try out a trip if you are able to and let me know how it went. All the best!

P.S. Thanks Ms. Astha Tandon, a guest from NephroPlus who urged me to blog about this.

Sunday, May 20, 2018

Home Dialysis: Nephrology’s best-kept secret

I am a strong believer in home dialysis - Peritoneal or Home Hemodialysis. Doing your dialysis at home gives you immense freedom and flexibility to live life on your terms. You don’t need to rely on others. You are completely in-charge. This approach may not work for some people. For them, the hospital or centre based dialysis is always there. But for those who would like to be in control, there’s nothing that beats home dialysis.



study conducted on nephrology professionals found that more than 90% of them would prefer either PD or Home HD if they had to go onto dialysis. However, about 93% of patients on dialysis in the US are on in-centre HD, 7% on PD snd less than 1% on PD. In India, those numbers are even worse.

Though nephrologists would prefer a home based therapy for their own dialysis, why are they not recommending it to their patients?

There could be multiple reasons for this with respect to India:
  • Patient unwillingness: Patients could be scared to take the burden of care into their own or a family member’s hands. They might prefer relying on trained technicians and doctors for this task.
  • Insurance does not cover home dialysis: Most insurance policies do not cover home therapies. Even hospital based dialysis is covered only by group insurance policies and not individual policies.
  • Infrastructure unavailability: Home dialysis needs certain basis minimum infrastructure at home like storage space, availability of a clean room for the treatment, water and electricity etc. Some people do not have this infrastructure
  • Doctor’s fear of losing the patient: Some doctors fear that if they send the patient home and do not see them every week like in hospital based dialysis, then they could lose the patient to some other nephrologist 
  • Doctor’s remuneration: I have heard some nephrologists admit (in public forums) that their main source of income is hospital based hemodialysis. They make less money on PD and nothing on home hemodialysis.
While some people debunk these myths around the reasons for the poor uptake of home therapies, nothing much can be done about some of these reasons but something can definitely be done about the other reasons and some more patients can be put on home therapies.

One thing that is inexcusable is that the different modalities are not explained to newly diagnosed patients. Most of them are just asked to plan for an AV Fistula. In my view that is completely unethical. Well, you might have an opinion about what the patient might like but please, give us the choice.

Sunday, May 13, 2018

Home HD in India - not as difficult as you think

When people get to know about home hemodialysis, they generally think it is too complex and risky for them to do. They have seen so many incidents in hospital based centres that they assume the same can happen at home too. However, many of these fears are unfounded, especially in patients who are  otherwise healthy, are proactive about their health, like to take care into their own hands and do not like to accept the dependence on others for their own well-being.

Take the case of Amit from Kolkata. He was suddenly diagnosed with MPGN (Membranoproliferative Glomerulonephritis) at a young age in 2013. He had to start dialysis within a few months. He started dialysing at a reputed hospital in the city. He experienced what many people feel on dialysis in a hospital - poor quality, many complications, callous technicians. He also lost weight rapidly and his work was severely compromised.

His younger brother was active on the internet and found many good things about home hemodialysis. He started researching about it extensively and also got in touch with people who were undergoing home hemodialysis in India. Encouraged by the full life people on home HD were leading, he suggested this modality to his brother.

Intrigued by this, in the hope of getting his life back, Amit talked to his nephrologist about home hemodialysis. His nephrologist was reluctant at first but then gradually acquiesced. The hospital arranged for Amit and his wife, Komal to be trained in the hospital. The training went on religiously for a month, about 12-13 sessions. Komal was initially completely overwhelmed by the number of lines in the bloodline, the various settings on the machine and the fact that blood was coming out of her husband’s body and going through a machine. She would be responsible should anything go wrong. She slowly learnt the ropes though and decided that she would take this into her hands and ensure that her husband got good treatment at home. She was very brave to do this and her husband was fully appreciative.

After a month, a dialysis patient, also from Kolkata, who ran his own business of medical consumables arranged for them to buy a new HD machine. The hospital’s dialysis team helped them procure a water treatment plant.

The day had finally come when they would do their first session at home. Komal nervously set the machine up and hooked Amit to the machine. The first few weeks were quite intimidating. Alarms would go off. They were able to handle some of them. For others they would call hospital staff and get help in addressing the issue. They would do four hour sessions, thrice a week. They would do the sessions in the afternoon.





A pic of their HD machine and water treatment plant

Issues slowly started to reduce. Amit’s health improved dramatically. There were very few complications unlike the times he dialyzed in the hospital. After about six months, they decided to try nocturnal. They started dialysing every alternate night. They found a very dedicated dialysis nurse, Guru, who worked for a dialysis provider through some common contacts and reached out to him for help whenever they needed it. Guru helped them even in the middle of the night, often doing video calls to help figure out issues.

Today after two years on home hemodialysis, Amit has got his life back completely. He has put on all the weight he lost, works full time and leads a normal life. He recently went on a holiday to the North where he actually did river rafting in the Ganga (complete with a jump into the river).

The beauty of nocturnal home dialysis can never be described completely in words. People who undergo the therapy wouldn’t give it up for anything in the world. It is the best therapy among all Renal Replacement Therapy options except for a kidney transplant.

It is not even as complicated as it seems. Yes, there will be bumps on the road. But the ride is definitely worth it.

(Note: Some names and other information in this article have been changed to protect identity. Many thanks to Amit and Komal for sharing their story and allowing me to write about this inspiring journey. In many ways, they were brave to embark on this journey without any professional help. I had a very capable dialysis tech, Jairam who helped me start home HD. This couple did it on their own. Hats off!)


Friday, May 11, 2018

Hepatitis C treatment for those on dialysis


Hepatitis C has become a major problem for dialysis patients in India. Blood transfusions, reuse of dialyzers and poor infection control practices are associated with a higher cross-infection rate. Another major problem is that even after infection, the virus is not detected by the commonly used Anti HCV Antibodies test for 4-6 weeks. This means that patients would be assumed to be negative for the virus despite getting tested. In this process other patients could get cross infected. Hepatitis C infection is more common among those on dialysis for a long period of time. 

For many years, Hepatitis C positive dialysis patients had to rely on traditional treatments like Interferon and Pegylated Interferon which did not have high success rates. They also had significant side effects. Further Ribavirin, to be used along with Interferon for effective treatment caused severe side effects among dialysis patients and hence could rarely be used. This further reduced the success rates of treatment.

The advent of Direct Acting Agents such as Sofosbuvir has ushered in a new era in the treatment of Hepatitis C in dialysis patients. These are all oral drugs to be taken for 3 months mostly and success rates have been very high.

Earlier Hepatitis C used to be treated only if the dialysis patient was about to go for a kidney transplant. It was not worth the hassle otherwise. But now, things are changing and most dialysis patients are encouraged to get their Hepatitis C treated. Left untreated, Hepatitis C can lead to liver cirrhosis and liver failure. The new KDIGO guidelines draft for Hepatitis C in CKD patients recommend that all CKD patients with Hepatitis C be treated with a Direct Acting Agent based regimen.

Many patients think that since Hepatitis C is fairly docile and does not cause any immediate, urgent symptoms, why bother treating it? The problem is over a period of time, Hepatitis C can cause a lot of problems. Especially after a few years, the liver can become badly affected and this could severely impair quality of life in many ways.

These days the cost of treatment has also come down significantly. So, if you are on dialysis and are Hepatitis C positive, you should definitely consider treatment. Talk to your nephrologist and discuss treatment options.