Tuesday, December 31, 2019

We'll miss you, Ananth Pagadala


I woke up this morning to some shocking news. Ananth Pagadala passed away around 1:30 AM. On dialysis for the last twenty five years, Ananth succumbed to a heart attack after complaining of breathlessness. Kidney disease patients from around the country including me were left in shock as we got to know about Ananth's passing.

Ananth had helped so many of us over the years holding our hands as we navigated the traumatic journey that kidney disease often entailed. He was very active on Facebook groups always pitching in with a helpful tip or putting to ease an agitated mind as it tried to make sense of the vagaries of life on dialysis.

Founder of Kidney Patients Support Foundation, Ananth also ran a successful business, Global Meditronic, distributing Dialysis and other Medical Consumables. An ardent believer in leading a normal life despite having kidney disease, Ananth employed people who were suffering from this disease.

Ananth had very good knowledge about kidney disease and the technical aspects about dialysis. He used this knowledge to answer several doubts that patients had on various online groups. He would often be one of the first to answer questions posted on the Kidney Warriors group on Facebook.

Ananth always helped dialysis patients. Going through this suffering first hand, he knew that dialysis patients needed all the help they could get. He helped several patients with free Erythropoietin injections among other things. He held several events to promote awareness and provide support for dialysis patients.

Perhaps the most remarkable thing about Ananth was his ever-cheerful demeanour. No one could even guess that he was on dialysis. He traveled regularly on work and to visit places. An avid foodie, he lived life to the fullest and knew of all the good food joints.

Ananth was an inspiration to all of us and his loss will be felt for a long, long time to come.

Saturday, December 28, 2019

Are your medicines getting washed out during your dialysis session?


I have been suffering from sinusitis for the past month or so. I was prescribed antibiotics but to no avail. I was then referred to a pulmonologist who advised a CT scan of the Paranasal Sinuses and simultaneously put me on two potent antibiotics along with an anti-allergic medicine. I started taking all these medicines in the hope that the sinusitis would resolve.

One thing I have learnt in the past is that dialysis can remove some drugs rendering them useless. Whenever I am prescribed a new drug, I make it a point to refer to a guide such as this one or this one. These guides have a lot of very useful information about the drugs that get dialysed out during a dialysis session including information for Low Flux Hemodialysis, High Flux Hemodialysis and Peritoneal Dialysis.

So what do you do if a drug that has been prescribed can get dialysed out?

It all depends on when you are supposed to take the drug and when your dialysis session is. For example, if you have to take the drug after breakfast and you have your dialysis session in the morning, you should check with your doctor if you can take the drug after your morning session? Things can get tricky if your session is in the afternoon and you have to take the drug in the morning. What do you do then? What if you have to take the same drug in the evening? If your morning dose is going to get washed out during your dialysis session, then you will be getting only about 50% of the dose every other day (assuming you are getting thrice weekly dialysis).

One more option that is explored at times is to increase the dosage of the drug to account for the removal of the drug during dialysis. This is done assuming that the drug is removed only partially. However, this can be quite complicated as you would need to know how easily the drug is dialysed out and this information is rarely available.

All this can lead to serious problems.

While there are no easy answers, it is important that we be aware that the drugs we take can be removed during the dialysis session. Remember, there are thousands of drugs that doctors can prescribe to different patients and it is impossible for them to remember which drugs get dialysed out and which do not. It is up to us, the patients, to read up on this and have a meaningful discussion with our doctors. More often that not, doctors can come up with solutions for this on the lines above.

One important consequence of this is with Blood Pressure medications. Some patients report their Blood Pressure rising after a couple of hours of dialysis. One possible suspect in this case is that the Blood Pressure medications they are on could be getting dialysed out during dialysis. It could be worth exploring switching to a drug that does not get removed or tailoring the dose.

I realised when I referred to the files I linked to above that one of the antibiotics and the anti-allergic were removed during dialysis. I called my nephrologist and asked him what to do. He advised to change the time I take those medicines so that they get enough number of hours in the body and thus, an opportunity to act.

I am glad I did this because otherwise, I would not be getting the adequate dose of those drugs and my problem would take longer to resolve or may not resolve at all.


Saturday, December 14, 2019

3rd Dialysis Olympiad in Pune next Sunday (22nd December)

Come for the 3rd edition of the Indian Dialysis Olympiad being held in Pune's Balewadi Boxing Stadium on Sunday, the 22nd of December from 9 AM to 5 PM.  Show the world you have the Will to Win!





Aashayein in Kolkata tomorrow

If you are on dialysis in Kolkata, come for Aashayein tomorrow.

Sunday, December 1, 2019

Don't hold your breath for the Artificial Kidney, it is still a long time away



I got a call a few weeks back from the friend of someone I know very well. This gentleman was diagnosed with kidney failure recently and was advised dialysis. He had decided to do Peritoneal Dialysis but was debating whether to opt for the manual exchanges or to get a PD cycler and do the exchanges at night. He had come across a video that was floating around the internet about the Artificial Kidney. After seeing this video, he thought since the Artificial Kidney was anyway coming next year, why invest money on buying a PD cycler?

Well, many dialysis patients got excited when this news hit the market. This is a device being developed by Dr. Shuvo Roy and his team. Unfortunately, this article and the video linked to above are yet another example of how the quality of news has deteriorated so completely in recent times. If you went through the video, the first thing that would strike you was the poor quality.

The article linked to above is no better. The headline screams, "Artificial Kidneys Could Be In Patients By 2020". This would lead people, especially dialysis patients to think that they could get the Artificial Kidney by 2020. However, the body of the article says, "There’s still a lot to be done, but the group has just been given $6 million (£4 million) to play with, and said Tuesday at the American Society of Nephrology Kidney Week that human trials within this decade are on the agenda."

Human trials within this decade are on the agenda? Human trials take several years even for simple drugs. This is a completely new class of a device. It is going to implanted into the human body. Common sense dictates that the trials be very stringent. I hate to dash the hopes of my fellow dialysis patients but honestly, I think it is going to take a minimum of five more years for this to get to a point where this will be available for patients in the US to use. In other countries, it will take even longer. This is assuming that everything in the trials goes as planned. And that is a big if.

India? I can't even guess. Take the NxStage System One. It has been in the US for more than a decade now. There are no signs of it coming to India. Conversations with people in the know have yielded that there is a major concern around affordability in India. How many people can afford a machine that costs around 10L and more importantly the consumables that cost around 4-5K per session?

There are a couple of other such breakthrough devices in various stages of development. One is Dr. Victor Gura's Wearable Artificial Kidney (WAK) and the other is the AWAK which is a device for PD. These devices are likely to come out sooner but even they will take a few more years.

It is good to be hopeful. However it is important to be pragmatic as well. When we take decisions pertaining to our health, we should never get fooled by such poorly written articles. All this may sound depressing. Many dialysis patients would be sorely disappointed. It is better to know the truth than to take a wrong decision not based on facts but on 'clickbait' headlines and sensational articles.

I explained all this to the gentleman who had called. I could sense his incredulous tone when I told him this but I hope he has taken the right decision.

---------

For accurate information about the Artificial Kidney project, click here or checkout their Facebook Page. Also checkout their FAQ page especially the question on how long will the clinical trials take to complete.
For more information about the Wearable Artificial Kidney, check out their Facebook Page.
For more information about the AWAK for PD, see this.
Also see Dr. John Agar's summary of new dialysis technologies.

Sunday, October 13, 2019

Dialysis patients must find a purpose in their life - quality of life will follow

Friedrich Nietzsche, the famous German philosopher wrote, "He who has a why to live for can bear with almost any how".

People who have a purpose in life can bear any conditions or situations they are confronted with, however adverse. This was true for people in Nazi Germany. This was found true in the experiment carried out by the young doctor in an old-age home in the US.

Dialysis patients can be quite depressed. The diagnosis of End Stage Kidney Disease can come as a huge shock. Their lives are turned upside down. Several dreams are shattered. Amidst all this is the process of dialysis itself, the co-morbidities of kidney failure and the diet and fluid restrictions. In India, there is the added burden of the financial devastation that families undergo.

It is quite natural for people to be depressed.

However, despite this, some people not only survive for long but thrive. They live cheerful lives, are full of energy and live every day to their fullest. What differentiates them from the others who are tired all the time and go about their life like it's a huge burden and often think about suicide?

It's that they have a purpose.

What is a purpose? A purpose is something to look forward each day. It is the reason you get out of bed every morning. It could be your work. It could be a hobby. It could be service to others. Everyone needs a purpose in their life. The purpose does not have to be permanent. It can change from time to time. But everyone must have a purpose at all times.

Even healthy people need a purpose. Dialysis patients, even more so. Healthy people often do not have trying circumstances as dialysis patients do. But if even they need a purpose to live a meaningful life, then it is obvious that people who have to be hooked to a machine for several hours every week and have to think twice before sipping from as much as a glass of water, need a purpose all the more.


So, what can we do? The best option is to work. If not full time, part time is also a great start. Try to do something you enjoy. If you are unable to find work you enjoy, get started with anything. The fact that you have something to look forward to everyday will give you a lot in return.

If work is not possible, then develop a hobby. Think of what interests you. A musical instrument? Learn a new language? Cooking? Pursue that. Even something as simple as tending to a vegetable garden can have benefits as shown in the US old-age home incident I linked to above.



We Dialysis Patients tend to make our lives revolve around our disease. We need to realise that life need not be about this alone. Granted, we have a lot to worry about. However, we need to try to include other things in our life. Like work, family, friends, exercise and so on. This is where purpose comes in. Some people have a purpose like, "I want to get my daughter married" or "I want to see my kids grow up". Perfect! This is also fine. Anything that keeps you going. Anything that gives you the motivation to live.

So, remember, we should find something to look forward each day. Be it work, a hobby or a responsibility. We all need a reason to get out of bed each day. Being on dialysis does not mean that the disease takes over our entire life. If we allow it to, it will. So be mindful and find something else to think about. For your own sake. For your own sanity. For your own life.

Thursday, September 26, 2019

The Artless Art of Negotiation



Negotiation is a skill I sorely lack. My brothers still crack up when they recall me negotiating with a former boss on a raise. "Eighty thousand", he said. "Can we do Eighty five?", I asked hesitantly. I did not want to embarrass him. "Done Kamal." When I recounted this conversation that evening to my brothers and parents, they gave me a thorough dressing down.

Over the years, I have seen several people negotiating, first hand. As is usually the case, people start at something less than what they are willing to pay or more than what they are willing to sell at. Eventually after some back and forth, they settle on a price.

Both parties usually know that there is some leg room. Both negotiate accordingly.

I have been a part of several discussions where people say they have "put their best foot forward" and have not "left anything on the table". All MBA jargon. But that is never the case. Half an hour into the negotiations and you will see that they still have a better foot to put forward and had actually left something on the table.

Why do we do that? Wouldn't life be much simpler if people directly quoted what they were willing to sell at? Or state what they were willing to pay? Wouldn't a lot of time be saved?

You might say I am not being practical. You might say that things don't work that way.

You might give me the following argument. Let's say someone is willing to sell something at Rs. 1,000. Usually they would start at say, Rs. 1,400 and then during the course of the negotiations, come down to Rs. 1,000. The problem here is the perceived value of the product in the eyes of the buyer. If the buyer thinks the product is worth Rs. 1,200. During negotiations, the price finally decided might be Rs. 1,100. In this case, the seller has got Rs. 100 more than what he had thought he could get. The buyer paid Rs. 100 less than what he was ready to pay. So, you might argue that both have actually "won".

You might be right from one perspective.

However, if both parties did not leave any room for negotiations, then what might have happened? The seller would have quoted Rs. 1,000 and the buyer would have happily bought it thinking he got a great deal where he saved Rs. 200. The seller got what he wanted though you might say he could have got Rs. 200 more.

When you think about it, over a long enough time, it all evens out. But my financially savvy friends would argue against allowing "a long enough time" to even things out. They would want to get the best out of every single deal.

I simply feel that stating your best price (either while buying or selling) saves a lot of time and at the end of your life, you would neither save or lose much by that approach. Provided, of course, that everyone follows this approach.

Until then, dene ka bolo?

Saturday, September 21, 2019

Cost of Home Hemodialysis in India

After my last post, I got several enquiries on what exactly the cost of Home Hemodialysis in India was. I was also requested to create a separate post on this and so here it is.

The cost can be broken into two: Initial Cost and Recurring Cost.

The Initial Cost includes the cost of setting up the system at home including the machinery, plumbing and electrical connections. The Recurring Cost includes the cost of the consumables, the salary of the technician, water, electricity, maintenance cost of HD machine and RO plant etc.

We must bear in mind that each of these costs would vary greatly depending on location, frequency and duration of the dialysis sessions, type of dialyser, whether the dialyser and bloodline is being reused or not etc.

The numbers provided here are approximate ranges and will vary based on several factors. 

Initial Cost:

HD Machine - New: Rs. 5.5 - 6 L
RO Plant - New: Rs. 1-1.5L
Electrical and Plumbing: Rs. 50-75K
Bed: 0 to Rs. 1L (depending on whether you would use your own current bed or maybe a multifunction bed which allows you to move it to the Trendelenburg position (in case of low BP) etc.)

Recurring Cost:

Cost of a dialyser and bloodline is the same as that you probably pay at your current centre (Rs. 500 - Rs. 1000 for the dialyser depending on whether you are using low flux, middle flux or high flux and between Rs. 150 - 175 for the bloodline). The cost per session of this can be brought down if you reuse the dialyser.

Rest of the consumables would cost around Rs. 300-400 assuming a four hour session. For a nocturnal session, it would be slightly higher, maybe around Rs. 500-600.

Technicians would charge anywhere between Rs. 400 to Rs. 1000 per session depending on the location.

You would also need to spend some amount on maintenance of the RO and the HD machine.

Summary:

Initial cost: Rs. Rs. 7L to Rs. 10L depending on various options (everything new, for second hand, refurbished stuff, maybe about 60-70% of this)

Recurring cost: Rs. 1200 to Rs. 3500 per session

Nowadays, several dialysis providers also provide home hemodialysis services where they will take care of everything. This will include setting up the infrastructure, supplying consumables, arranging a technician and taking care of biomedical waste and machine maintenance. This will be more expensive though.

So, if you do the same frequency and duration as in your current hospital based dialysis centre, the monthly cost can come to around the same as that you are paying now. The initial cost is something that needs to be considered though. This can also be reduced if you go for a refurbished machine. There is a small chance of the machine giving problems though.

The beauty of home hemodialysis though is when you do it more frequently and for longer durations. For example, doing five nights a week, for 7-8 hours each night can improve clinical outcomes and quality of life dramatically. Several people report an almost normal quality of life with this regimen. Studies have also shown that the outcomes with this modality rival that of a deceased donor kidney transplant.

My own experience with this modality has been excellent. Honestly, I have got my life back and I have documented this in great detail on this blog as well. The return on investment has truly surpassed all expectations for me.


Saturday, September 14, 2019

Myth: You have to be rich to do Home Hemodialysis in India



I was diagnosed with Kidney Disease in July 1997. Ours was a middle class family. Both my parents had their entire lives' savings wiped out in the first few years of my being diagnosed with Kidney Disease. I started working part time only after I switched to PD in 1999. Effigent happened in 2000. For the first few years of Effigent, I drew only a nominal salary.

I started doing Daily Nocturnal Home Hemodialysis in May 2006. NephroPlus was not started until December 2009. I hadn't even met Vikram.

So I got onto Home Hemodialysis when our financial condition was still precarious. Well, it was not like we couldn't make ends meet. We had money for the basics of life. Not a whole lot more.

But despite all this we could make it work. My mother took a bank loan for the HD machine. We dug into our finances for the RO and so on and got started.

The point I am trying to make is that you don't really need to be stinking rich to be on home hemo. You do need guts though. To undergo a therapy which only a very small number of people are doing requires some courage. But hey, if I could do it thirteen years ago when home hemo was only something you read about on the internet, with all the advancements that have happened since then, it should almost be a piece of cake now!

One major challenge that you associate with hemodialysis is averted to a large extent if you do more frequent, long duration dialysis at home. That way, since the fluid weight gain is not a whole lot, you are removing fluid at a low, gentle rate and that reduces the chances of any complications while on dialysis.

Yes, you do need a good technician. This is true for India. At least in my experience, I find it easier to do home hemo if you have a tech supporting you. This could be a family member as well. The trouble though is that training for home hemo is practically non-existent in India. In such cases, techs are ideal. They like the extra money. You get the comfort.

You can also get all the consumables on your own and manage the entire process end to end on your own. If you do that, the cost is going to probably be around the same as that you are paying in the centre, give or take.

There are companies that provide home hemodialysis. If you don't want to take the hassle of managing the entire process yourself, this could be useful. You may not even need to pay upfront for the machine. Everything is taken care of for you by them.

But if you have it in you to manage everything on your own and can put in a small initial investment, then home hemo can actually cost about the same as your neighbourhood dialysis centre. You need the courage. It is possible though.

Sunday, September 8, 2019

Daily nocturnal home hemo gives me everything I want from life except the ability to travel longer



I am really grateful for the ability to dialyse at home five nights a week, seven to eight hours each night. This modality has given me the freedom to live an unfettered life. I don't bother much about what I eat or drink. I am able to work for long hours. I am able to swim, to do strength training. I am leading an almost normal life except for the dialysis I need to undergo at night. I do have some medical issues from time to time which are mostly (apart from the bone issues) resolved by some form of treatment.

There is however one thing that I miss and that is the ability to travel for more than one night away from home. I skip dialysis these days on Wednesdays and Saturdays. I plan all my travel so that I spend a maximum of one night away from home - typically Wednesdays or Saturdays. I am flexible with the non-dialysis days at times and I might take another night off instead of those days. But I have almost decided not to take more than one night off away from nocturnal hemo.

You might think why I can't travel longer and get a few dialysis sessions at a centre?

Well, I have done that several times in the past. I have blogged extensively about those trips in this blog. My longest trip away from home has been three weeks long. But I hated the idea of going for dialysis during a holiday.

Once you get used to getting dialysis at home, especially the longer duration, more frequent sessions, believe me, it is very difficult to go back, even for a short duration to getting the four hour sessions in the centre. Also while some centres do offer nocturnal, it's just not the same as getting dialysis at home. The quiet, the dark room, the complete lack of disturbance are very conducive to a peaceful night of sleep.

Also, when I travel, dialysis is the last thing I want to think about. I would like to enjoy the place, the food, the hotel and so on. Who really wants to be lying in a bed with two thick needles in your arm?

People often ask me why I can't get a machine such as the NxStage System One which affords the ability to travel while getting your same home regimen while traveling. I would love to. Trouble is the company won't. I have been in touch with them and they have no plans of coming to India. Recently the company got acquired by Fresenius and that increases the chance of the machine coming to India by about 0.1%. Let's see where that goes.

I might be sounding like I am complaining but no, I have no right to complain. Given my circumstances, I think daily nocturnal itself is a boon and I can never be grateful enough. Just that I miss long travel. Period.

Saturday, August 3, 2019

Thank you, IMT Hyderabad!

I was invited recently to deliver a talk at Institute of Management and Technology, Hyderabad. This is a reputed management college and a branch of the college with the same name in Ghaziabad. I was hesitant at first. I am not an MBA. I don't know anything about management. What could I talk about to management students?

The topic was supposed to be "Challenges and Opportunities in Healthcare in India". My colleague at NephroPlus, Shreyas Naik, who is an alumnus of that college had recommended my name and he egged me on. He advised me to simply go and talk about my story and the NephroPlus journey. Images of adolescents booing and walking out came to my mind and I was very nervous for a while. I  agreed though.

I prepared my presentation slowly, over many days whenever time would permit. I sent off my presentation file to the organiser a day before the event.

As it turned out, it was raining heavily on the appointed day. As I reached the campus, quite an architectural marvel, like a stone sculpture among an expanse of greenery, I felt a tinge of remorse that I could not do my MBA.

I was welcomed by the team and some students who had helped organise the event. I was led to the board room where I spoke to the faculty who had gathered. We talked about healthcare in general and and the state of dialysis in India. After that there was a short interview by a student committee (I forget the name).

The talk went off fairly well. I talked about my journey with kidney disease, how NephroPlus began and where we have reached. I told the two hundred students gathered there about how it was important to look at things from the patient's perspective while doing anything in healthcare. I talked about the challenges specific to India and how we have tried to overcome some of them. There was a brief round of Q&A after that. Tea and snacks followed.

Education has changed so much over the years. Students these days are given so much exposure to the real world. This college, as probably other colleges, has a number of clubs and societies that enable them to organise events, run various activities and connect with industry to get insights into how companies actually function.

Even kids in school are given more opportunities than we ever had. My nephew who is barely fifteen is part of a team that organised the whole school concert.

All the organisers and faculty saw me off to the car. The warmth of the entire team was very touching. As I headed back to the city and was stuck badly in the traffic that was caused due to the heavy rain, I felt gratitude for having the opportunity to have such a lovely evening. I felt fortunate to be able to interact with this young bunch of people even if just for a few hours. With stars in their eyes, they seemed ready to take on the world. It was so refreshing to see their infectious enthusiasm.

Thank you IMT, Hyderabad!

Pics from the evening:










Aashayein in Chennai on 11th August

Aashayein is being held in Chennai for the first time on Sunday, 11th August at Hotel Abu Sarovar Portico in Kilpauk. Click here to register. 

It is a one day education-cum-entertainment event for all those on dialysis and their families. It is open to all dialysis patients (not only those getting dialysis at NephroPlus). 


Thursday, July 25, 2019

No flights, a four-day week and living off-grid: what climate scientists do at home to save the planet: The Guardian



Climate change is real. Every day I read scary stories of where we're headed. This article talks about the grim reality of the situation and what climate scientists are doing in their own lives to make a difference.

Apparently, the three biggest sources of pollution are vehicles, food and electricity (mainly form heating and cooling).

"Individual choices matter: 72% of global greenhouse gas emissions come from household decisions, including mobility (especially using cars and planes), diet (especially meat and dairy consumption), and housing (heating and cooling, and electricity consumption)."

- Dr Kimberly Nicholas, associate professor of sustainability science at Lund University, Sweden

These scientists have walked the talk. Some have given up flying altogether. Some have turned vegan. Many have moved much closer to their workplace so that they can walk to work instead of driving.

The trouble is most of us don't think climate change is something that will affect us. It seems like some distant thing (if at all it is a thing) that may happen after we are dead and gone. We don't see problems that are already happening. Chennai ran out of water this year. Next year, twenty one cities in India are expected to meet the same fate.

"Month after month, there is research showing that climate change is happening faster than we thought. We’re in a car hurtling towards the edge of a cliff, we’ve got our foot on the accelerator, and we’re just talking to each other, faffing about. If anything, some of us are even putting the foot further down. What we need to do is stop the car and get out."

- Tom Bailey, head of sustainable consumption at C40 Cities Climate Leadership Group

The disturbing thing about climate change is that the poorest of the poor would be affected the most while they did not cause the pollution in any way. They are not the ones who fly, they don't eat meat, they don't live in air-conditioned houses. And yet, they will be the ones to suffer the most. The rich will pay their way through and get what's needed from what's available. The poor have no such luxury.

The developed nations claim that countries like India and China are not contributing their fair share towards addressing this problem. India and China claim that the developed countries are the ones that caused the problem in the first place. Why should they be deprived of the benefits of development if they joined the party late?

In all this drama, a leader like Donald Trump comes who doesn't believe climate change is real and sets the whole process of trying to decelerate the problems back by several years.

It is wrong to think that each of us cannot make a difference because the problem is a global one. It is truly a mammoth problem with disastrous consequences. However, each one of us can make a difference. The article linked to above has some practical things that the climate scientist have done. We all need to take a page out of their books and do our bit.

Sunday, July 21, 2019

Sunday Me Blog

The "Sunday Me Blog" is an idea from Bill Peckham's blog (which is unfortunately no longer available). Bill used to do this blog on a Sunday every once in a way when he would talk about himself, how he was doing health-wise and what was happening in his life in general. It was a great opportunity for his friends from around the world to get an insight into what Bill, the patient was up to and an enjoyable break from the routine posts of Bill, the advocate.

As a tribute to Bill, here is a Sunday Me blog from me. While I am not half as famous as Bill and am not even a patch on him when it comes to zest for life (Bill has got dialysis in dozens of countries!), I thought it would be no harm in giving an update on what is happening in my life on the personal front.

While NephroPlus keeps me busy for most of the day, I try to carve out some time for my other interests. I try to take Saturdays off and pursue these interests.

My daily routine includes two fifteen-minute meditation sessions (using the Headspace app), one in the morning and the other in the evening. These meditation sessions have been life-changing for me. I have discovered a new me, one that I never knew existed. Meditation is actually mindfulness and teaches you to know your mind better. The biggest insight from this practice that I got is best summarised this quote from Eckhart Tolle: "What a liberation to realize that the 'voice in my head' is not who I am. 'Who am I, then?' The one who sees that." I also read a page of the Daily Stoic and spend a few minutes journaling every morning

I have been doing some strength training for the past year or so. This has improved the strength in my muscles tremendously. While earlier, I would be unable to climb a flight of stairs without panting, be unable to walk even moderately long distances and be unable to get up from a chair or sit on it without the support from my hands, I am able to do all these things comfortably. I can also sit on the ground, something I had given up hope of ever being able to do. I also manage about half hour of swimming every day.

Teaching kids about the Jain religion is what I do from 9:30 to 11:30 every Sunday morning. This is a very satisfying experience. I ensure to keep the classes free from dogma and encourage the kids to question everything and not accept anything blindly. I also found references from some old Jain scriptures in support of this way of thinking. Unfortunately, the way modern Jain religion is taught and practised is very different from this line of thought. The kids appreciate this and question me. This means I need to be well prepared for the class otherwise I could be embarrassed.

I have been nurturing my bread-making skills for the last few years. Ever since my parents brought home a bread machine back in 2011, I have been hooked to bread making. I started making simple breads using the machine. All I needed to do was put in the ingredients as specified in the recipe and then turn the bread machine on. It did everything else. Recently I have got hooked to sourdough bread. I took a class where they taught us the entire process and I haven't looked back. Almost every weekend, I go over the entire process and try to improve my technique to get a decent loaf. My boules are currently eminently edible but far from perfect. I will get there soon.

On the health front, I have had some small issues on and off. To begin with it was some breathlessness after the nights when I skipped dialysis. I currently dialyse five nights a week with Wednesdays and Saturdays being my off-days. On Thursdays and Sundays, I found myself feeling breathless. I tried different things, some unnecessary investigations and a lot of worrying later, I realised it was excess fluid. I had lost some weight and I had not accounted for that in my ultrafiltration on dialysis. Then there was a fistula infection (no one is sure if it was fungal or bacterial) but it is now treated (I was given both an anti-fungal and an antibiotic). I am not sure if I should continue using buttonhole needles or switch to sharps. More on this later.

I also underwent a fistuloplasty this week. A vein downstream in the fistula had narrowed and had to be opened up to prevent potential problems later on. I was not having any problems during dialysis so I often wonder if the procedure was necessary. But then, you need to trust the doctors, I guess. The worse part is they said I would need to undergo this procedure every few months because these veins generally tend to get narrow again after a fistuloplasty. And there is no permanent solution.

I am quite happy with my life at the moment. Work keeps me busy and fulfilled. These other pursuits give my life more meaning and something to look forward to apart from work. I don't think I could ask for more. Well, apart from a kidney transplant with a complement inhibitor, that is.

Saturday, June 8, 2019

Know your Peritoneal Dialysis

(Acknowledgements: A. Shukla for reviewing the draft and suggesting improvements.) 

If you are on Peritoneal Dialysis, you should understand the components of your PD prescription. Each aspect of the prescription indicates some part of your overall treatment. If you understand the significance of the parameters, you can have a more informed discussion with your doctor about how to make the treatment work for you.

Here are some of the parameters you should be aware of:

1. CAPD or CCPD or a hybrid

The type of PD you are on is probably the first thing that you should be aware of. CAPD stands for Continuous Ambulatory Peritoneal Dialysis. CCPD stands for Continuous Cyclic Peritoneal Dialysis. CCPD is also called APD or Automated Peritoneal Dialysis. The type of PD basically indicates whether you are doing exchanges in the day or the night.

If you are on CAPD, it means you do your exchanges during the day. Most people do three or four exchanges during the day. These exchanges are done manually without the aid of a machine.



CCPD or APD is usually done at night with the help of a machine called a cycler. You connect your transfer set to the PD tube and once you set up the bags and the kit on the machine, the machine takes care of the rest.

Some people do CCPD with one manual exchange during the day to get better clearance or ultrafiltration.

2. Number of exchanges

The number of exchanges tells you how many bags of PD fluid go in and out of your body. Typically one exchange means you drain out the old fluid and infuse one bag of fresh fluid in. The more the number of exchanges, the better the clearance of toxins. This is because with time, the fluid in the Peritoneal Cavity becomes saturated with toxins and its ability to pull out toxins from the blood reduces. So infusing fresh fluid improves the clearance.

Most people do three or four exchanges a day. Some people are advised to drain out fluid before they go to bed at night while others are advised to keep fluid inside them at night.

3. Type of PD Fluid

There are two main types of PD fluid available these days - Dextrose based and Icodextrin based. Dextrose is the most common and is usually cheaper than Icodextrin. Icodextrin has some advantages over dextrose. It can pull off more fluid and does not harm the Peritoneal Membrane like Dextrose does. It also does not load the body with Glucose like Dextrose does. However, Icodextrin can pull off a lot of fluid from the blood and there is a risk of low Blood Pressure and low Sodium levels.

If you are unable to get good ultrafiltration using dextrose, you should talk to your doctor about the possibility of using Icodextrin for one exchange instead of Dextrose.

4. Concentration of Fluid

The next thing you need to know about is the concentration of the PD fluid in the bags. While Icodextrin usually comes in a single concentration (7.5%), Dextrose comes in different concentrations. Again, different PD fluid manufacturers provide slightly different concentrations. The most commonly used concentrations are around 1.5%, 2.5% and 4.25%.

Remember, the higher the concentration, the more the fluid that can be removed (ultrafiltration). Lower concentrations means lower removal of fluid. One important factor to remember is that higher concentration of PD fluid means more Glucose load on the body and also higher the damage to the membrane.

That is why, generally, doctors advise the lowest concentration of fluid that is possible to achieve reasonably good ultrafiltration.

5. Dwell Time

Dwell time is the duration when the fluid stays in the Peritoneal Cavity in your abdomen. This has an important bearing on removal of toxins and fluid from your body. The dwell time needs to be decided carefully. Too short and too long dwell times can both be a problem. Too short dwell times would mean that you need to do more exchanges to achieve the desired ultrafiltration and clearance. Too long dwell times would mean that not enough ultrafiltration and clearance happen as the fluid would reach saturation and lie there doing nothing and worse, continue to load your body with glucose and damage your peritoneum. It would also start pushing toxins and fluid back into your body. Icodextrin has the benefit of allowing a long dwell without reverse flow of fluid and toxins.

The dwell time is usually set after determining the type of your Peritoneal Membrane. Some membranes do better with short dwell times while others do better with longer dwell times.

6. Nature of membrane

This is not a part of your PD prescription. However, it is important to know what this means and how it is important for your treatment. The nature of your Peritoneal membrane is usually determined by a test called the Peritoneal Equilibration Test (PET). It involves collecting blood samples, doing a few exchanges and collecting samples of the drain fluid as well. The result of this test is usually one of Low, Low Average, High Average or High. Generally Low and Low Average means that your Peritoneal Membrane transports solutes and fluids at a low rate. High and High Average means that your membrane transports toxins and fluids at a high rate. The rate of transport is in increasing order is Low, Low Average, High Average, High.



Low and Low Average Transporters need longer dwell times because the membrane needs longer durations to transfer toxins and fluid from the blood into the fluid in the Peritoneal Cavity. High and High Average Transporters need shorter dwell times becomes the membranes allow for rapid transfer of toxins and fluid into the Peritoneal Dialysis fluid. Keeping the fluid in longer results in reverse flow of fluid and toxins.

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These are the main aspects you need to be aware of with regard to Peritoneal Dialysis. Remember, if you are proactive about your treatment, you can have an intelligent discussion with your doctor and help them help you get the best out of your treatment.

You can download a copy of this post here.

Wednesday, May 29, 2019

Know your Hemodialysis

(This post is an updated version of a series of posts that had appeared in September 2013 in this blog.)

For those of us on Hemodialysis, it is important to know some of the basics involved. Since it is our life at stake here, it serves us well to be familiar with the basic concepts of dialysis. This will help us individualise our treatment and make it work best for us.

There are broadly four areas that we need to be familiar with:
  1. Dry weight and Ultrafiltration
  2. Dialysate Sodium
  3. Blood flow rate and dialysate flow rate
  4. Dialyzer type and needle gauge
Let us now look over each of these in detail.

1. Dry weight and Ultrafiltration

When your kidneys are not working as well as they should, they don't remove all the water you drink. Some or all of it stays inside your body. This water is partly in the blood, partly in the body's tissues and partly in between the tissues.

This has a number of undesirable side-effects - your blood volume goes up, your feet and hands may swell and you could also get breathless because the excess fluid could go and accumulate in your lungs. Not everyone will experience all these symptoms. Each one of us can experience some or all of these symptoms.














Dry weight is your body weight assuming there is not one drop of excess fluid that has not been removed by your kidneys. It is your weight assuming your kidneys were working. Now it is difficult to tell exactly what your dry weight is because your kidneys aren't working. So, that leaves it to indirect methods to figure out our dry weight!

Since there is extra fluid in your blood, the amount of blood your heart has to pump is not normal. The average human body has around 5 litres of blood. Even if you are putting on about 2 litres between sessions, that's a whole 40% more volume for the heart to pump. This cannot be good. If you're putting on about 4-5 litres then it is 100% more. This is much worse.

Now, on dialysis, one of the most important things that happens is the removal of this excess fluid. The process of removing this excess fluid from your body by the dialysis machine is called ultrafiltration.

The body is capable of losing fluid during dialysis only at rates of about 400 ml/hour or less.

So, if you are about 2 kg over your dry weight, you're removing fluid at 500 ml per hour - assuming you do four hours. If you're 4 kg over your dry weight, you would be removing fluid at 1 litre per hour. This is very dangerous for your body especially your heart.

So, it is very important for you to be aware of your dry weight, to know how you feel when your dry weight has gone up (because, maybe you've been  eating well) or down (you've been exercising) and have complete control over how much water you are removing every session. Discuss your Ultrafiltration Goal (also called UF) with the person who is setting it and arrive at a number keeping all this in mind.



Remember - remove too much - and chances are that you could get a very low Blood Pressure and cramps; remove too little - and you will have fluid in your body when you get off - which means you cannot drink as much until you get your next session.


2. Dialysate Sodium

The Dialysate Sodium setting in a dialysis machine controls how much Sodium the blood is exposed to during a dialysis session.


The dialyzer is the artificial kidney that does the actual work of cleaning our blood off the excess fluid and toxins. How does this actually happen? There are two compartments in the dialyzer - the blood compartment and the dialysate compartment. The blood flows  through the blood compartment which contains hundreds of 'hollow fibres' which are very thin pipe like structures which have many, many pores on their walls. All around these hollow fibres is the dialysate compartment through which a special solution flows. The excess fluid and the toxins flow through these pores from the blood compartment to the dialysate compartment.

 
The figure here shows how substances in solutions move from areas of high concentration to areas of low concentration.

Why doesn't the blood itself leak out of the pores? That's because the pores are very, very tiny and the size of the blood cells are larger than the size of the pores. The pores are designed so that only the toxins and water can pass through them.

Now, it is possible that things from the dialysate also pass through these pores and enter the blood. It all depends on the size of the substance and the concentration difference on the two sides of the pores. Any substance can only move from one side to the other if the concentration (the amount of the substance per unit volume) is more on one side than the other. If the concentrations are the same, no movement will happen.

Now coming back to Sodium. The dialysate must be ideally designed such that the concentration of Sodium in it is around the same as that of a healthy human body. This is around 135 to 145 mEq/litre. The dialysate, therefore must also be maintained around this level.

The dialysate is prepared by mixing three liquids inside the machine - the Acid solution (Part A), the Bicarbonate solution (Part B) and RO water in a certain proportion.

The Dialysate Sodium can be set in a HD machine. This controls the concentration of Sodium in the dialysate. As in anything related to dialysis, as indeed, in medicine, every individual is different and there is no one single number for Dialysate Sodium that is suitable to all. Generally, a high Dialysate Sodium causes excess sodium to be present in the dialysate and as a direct consequence, in our blood while a lower Dialysate Sodium cause lower amounts of sodium to be present in the dialysate and in our blood. Excess sodium causes excess thirst and causes us to drink more water while low sodium causes low blood pressure and cramps as well.

So, if you come back with excess fluid weight gain, it is quite likely that your Dialysate Sodium setting was higher than you need it to be.

Generally the Dialysate Sodium is recommended to be in the range 137 to 142 mEq/L. If you are getting cramps or low blood pressure, you generally increase the Dialysate Sodium setting up 1 mEq/L at a time. If, on the other hand, you are feeling too thirsty, try going down a notch at a time and see how it feels. Always remember to discuss any changes you make with your nephrologist since he or she is the most aware of your overall condition. What is explained here is only a general guideline. 

Some studies have shown a lower rate of cardiovascular problems with lower Dialysate Sodium compared to higher values.

Remember, it your health on the line. It is your body that is being dialyzed. Take more interest in your dialysis prescription and session parameters. So, read up all you can on this and be proactive about your health.


3. Blood flow rate and dialysate flow rate

Like was mentioned earlier, the dialyzer has two compartments - the blood compartment and the dialyzer compartment. The blood flows through the blood compartment and a special fluid called the dialysate flows through the dialysate compartment. The dialysate is prepared by the dialysis machine by mixing three liquids - the acid solution, the bicarbonate solution and pure water in a certain proportion.

The most important part of our dialysis happens in this dialyzer. This is the artificial kidney which is performing the most important task the kidney performs - that of cleaning the blood of the excess toxins and water.

Since the cleaning happens in the dialyzer, it is important that more and more blood passes through the dialyzer from the body. There is a pump that pumps blood out of the body through the arterial needle. The faster the pump rotates, the greater the quantity of blood that is pumped through the dialyzer and the better the blood is cleaned.

Similarly, since the dialysate is the fluid that is surrounding the blood compartment, the volume of dialysate also impacts the amount of cleaning that happens. More dialysate means more toxins can be removed from the blood. The dialysate flow rate can also be controlled by the machine based on a setting.


If you are getting four hours of dialysis, thrice a week (and that is the bare minimum anyone with CKD on Maintenance hemodialysis must get), the number of hours you are spending on the machine is limited to twelve per week. So, it is important for you to ensure that you get the best dialysis possible during those twelve hours. The blood flow rate and dialysate flow rate are by far the most important parameters that affect the cleaning of your blood of toxins. Ultrafiltration rate is not affected by these parameters at all. But the clearing of toxins is almost entirely dependent on these two parameters.

One thing to be careful about is to make sure you don't go overboard with these changes since too high a blood flow rate could have some negative consequences as well. Higher blood flow rates can be harmful for your AV Fistula. Make sure you discuss with your nephrologist before making any changes. Make any changes only gradually. The human body is very individualistic. Each one has its own quirks. What I have explained here are only general guidelines.

One thing is for sure though - the higher your blood and dialysate flow rate - the better your clearance.

Dialyzer type and needle gauge

Dialyzer type is a very important factor in determining whether you are getting good dialysis. As you know, this is akin to an artificial kidney where the actual filtering takes place. This is where the excess fluid and toxins are removed.

There are many types of dialyzers in the market today. The important thing to check is the surface area of the dialyse and whether your dialyzer is low-flux, medium-flux or high-flux.

The surface area of the dialyzer dictates how much space is available for the blood and the dialysate to interact. The greater the surface area, the better the clearance of toxins.

High-flux dialyzers offer the best clearance among all variants followed by medium-flux and then low-flux. High flux dialyzers are also able to remove more fluid easily compared to low flux dialyzer which have constraints in fluid removal. Though fluid removal is a setting on the machine, this is done by altering the Trans-membrane pressure (TMP) and low flux dialyzers cannot withstand a high TMP.

Clearance of middle molecules is something that everyone on dialysis must be worried about. Middle molecules do not have an immediate impact like potassium or sodium but over a long period of time, they can cause something called Carpal Tunnel Syndrome and other problems. So, it is important to make sure we are getting adequate clearance of middle molecules. The clearance of middle molecules is not at all satisfactory in low flux dialyzers. High flux dialyzers do very well in clearing middle molecules. However, dialysis duration plays a very important role in clearing middle molecules as well.

High flux dialyzers are unfortunately and expectedly, much more expensive than the low and medium flux dialyzers.

The gauge of needles is another important factor to consider while determining your dialysis prescription. Dialysis needles are thick. Thicker needles allow more blood to be removed from your vein than thinner needles, obviously. So, using a needle with a thicker diameter allows you to run your dialysis at a higher blood flow rate. Trying to run at high blood flow rates with a thin needle can cause your blood to hemolyze which is quite dangerous. So, it is very important to choose the right type of needle with the right blood flow rate. 

One thing to remember is needle gauges are reverse in order. The higher the gauge, the thinner the needle. 16 gauge is thinner than 15 gauge and 16 gauge is thicker than 17 gauge!

In India, most people use 16 gauge needles because we run at low blood flow rates compared to the US where most people use 15 gauge needles because they run at higher blood flow rates.

You should discuss both these things with your nephrologist and arrive at a considered, well-thought out decision than just accept the default that is used for all.

Remember, medicine is highly individual. What works for one person will not necessarily work for all!

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