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Tuesday, 20 December 2011 09:57

Time discrepancies on NxStage

Written by Steve Bone
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I’ve found it interesting, but not annoying, that the timers on the NxStage are not particularly accurate. When I go for a 4 hour session, the time at coming off is around 3hours 45 mins, due to difference between UF time and straight dialysis, and that makes sense, yet the physical time I am on dialysis is over 4 hours (by a separate clock).

As I am expecting to be on the machine for 4 hours this is not an big issue, but does raise the issue of accuracy of the rest of the machine. I suspect this is a minor issue about timers. However, it does tie in with the UF selected being exceeded by, in some case, half a kilo per session.

This has been raised on the NxStageUsers blog before now, and seems to be a common problem with many types of  dialysis machines, as I have found this on the NxStage, Fresenius (various models), Braun and Gambro. I does require the user, especially if like me, you are on your own without a carer, to be extra vigilant not to dry out too much and become hypotensive.

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... http://mydialysis.co.uk/blog/2011/12/20/time-discrepancies-on-nxstage/


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Monday, 19 December 2011 18:13

The problem with monks who sell Ferraris

Written by Kamal Shah
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I had heard so much about the book that I finally bought it and read it. I actually heard the audio book first (much to the disgust of my driver who had to put up with an accented voice talking nonsense for hours on end instead of hearing the latest chartbusters) and then thought I would go ahead and read the book because the audio was abridged.

It was a good book. Good messages, a good style of writing, overall simple to follow, not too weighty. I was blown away when I read it at first.

However, what was new? Nothing much, IMHO.

We all know what's being said. We all know that we are spending way too much time in things we don't like. We all realize that we need to take a step back and see where our life is heading and then take corrective action. But how many of us actually do that?

I don't find myself having made any change or practising any of the steps mentioned there. I suspect that a vast majority of the readers of the book haven't either. Well, there are definitely a few who have but those are really very few.

Things like Art of Living and Landmark courses are similar. People are highly impressed at first, especially when they read the material or do the course. The key to making it work though and see any perceptible difference is continuous practice of the concepts involved.

Yes, there is nothing wrong with these courses or books per se but they are not like some magic wands that are suddenly going to make us feel very happy and contented. It requires much more than reading the book or attending the course. And at the very base, all of them are very similar in content.

So, stop and think hard before selling that Ferrari.

... http://www.kamaldshah.com/2011/12/problem-with-monks-who-sell-ferraris.html


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I had written about dialysing our elderly here a few days back. I reflected on that deeply a few days back while discussing the treatment options of a patient with her son along with a nephrologist. The lady was 70+ years old. Her son was as committed as ever. I could tell that the option for withdrawing treatment had not once crossed his mind.

The nephrologist made a very important point. The question she asked was, "Is the treatment doing anything to improve her quality of life or is it merely prolonging her suffering?"

It was easy to see that the dialysis session was nothing short of torture for the patient. Within a few minutes of starting, she would ask for it be closed. She was also not totally aware of what was happening around her. For her, it was a strange surrounding even though she had been there a few times. In her mind she was probably wondering why she had been brought there.

The family was considering PD as one of the options to make it easy on her. The nephrologist did not feel it would benefit her.

The nephrologist asked the family to consider this question and answer honestly if they really thought the treatment was benefitting her.

Once the conversation wound up, the son went over to her mother and gently stroked her head asking her if she wanted to eat anything. He could hardly hold back his emotions. Neither could any of us.

... http://www.kamaldshah.com/2011/12/fundamental-question-is-treatment.html


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Saturday, 17 December 2011 23:00

The Second Annual Ex Effigent Reunion

Written by Kamal Shah
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Second Annual Ex Effigent Reunion

Date: 25th December 2010
Time: 9 a.m.

Venue: A farmhouse on the outskirts of Hyderabad (same place as last year)

Click here and register asap so that arrangements can be made accordingly.

A voluntary contribution towards the expenses would be appreciated! Link available in the site above.

(Acknowledgements: M V Krishna for yet again taking the initiative!)

... http://www.kamaldshah.com/2011/12/second-annual-ex-effigent-reunion.html


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Wednesday, 14 December 2011 20:54

Try not to change your nephrologist

Written by Kamal Shah
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Many people on dialysis keep changing their nephrologist. Every now and then. This is not a good thing. There is a lot of undocumented history that resides in a nephrologist's mind. This can never be substituted by anything.

Why do people change their nephrologist?

Mostly, it is because they hear something good about some other nephrologist. "He is very good, why don't you try him?" kind of a thing. Remember one thing. Once you're on dialysis, things happen. It is often not due to the nephrologist's fault. Chronic Kidney Disease lends itself to a host of co-morbidities (conditions that occur alongside the primary disease itself). This is part of the game. The nephrologist can often not do anything to prevent it. So, do not blame your nephrologist for everything that happens to you.

Some people do not find the time given by the nephrologist to them adequate. This is a valid concern. Some nephrologists do not spend enough time with their patients. It is not their fault. They have to see so many patients in a limited span of time. But what does the patient do in the circumstances? This is something that I have no solution for. But think hard before changing the nephrologist.

The time the nephrologist spends with you is very important in your overall treatment. A lot of thought goes on in his or her mind that gets stored in his or her brain. This cannot be replaced by any amount of documentation.

Think about how the human brain works. There is a lot of processing that goes on before arriving at a decision. Things that can never be substituted by books, journals and documents. The decision is arrived at based on a lot of experiences of the past, the dozens of cases the nephrologist has dealt with in the past and the results of so many different treatments and their outcomes that are stored only in his brain.

I am not saying NEVER change the nephrologist. But you must have a strong reason to do so. Don't do it just because the patient in the next bed at the dialysis unit asked you to.

Rolling stones, they say, gather no moss.

... http://www.kamaldshah.com/2011/12/try-not-to-change-your-nephrologist.html


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Tuesday, 13 December 2011 09:49

Wait!

Written by Kamal Shah
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I was recently chatting with an elderly gentleman of my 'sangh' (the community of people who belong to the same temple). He asked me what I was doing these days. I said I was working at NephroPlus, a chain of dialysis centers.

"Oh! so you have dedicated your entire life to this cause?"

I immediately clarified that I was getting a salary and this was a for-profit organization.

Yesterday's Business Line also attributed a lot of things to me that are not entirely true. They said that I started NephroPlus after years of fighting kidney disease. It was actually Vikram Vuppala who started NephroPlus. I was with him in spirit from Day 1. But it was totally his baby. I supported him. I officially joined part time last year and full time a few weeks back. To Vikram's (and the other co-founder Sandeep's) credit, they involved me right from the beginning so that they could get the patient's perspective while setting this up.

I loved the time spent there as this was very close to my heart. I finally answered my calling and joined the company. But this is a for-profit organization and I get a salary and sweat equity. So, its not like I have sacrificed anything for this or am giving up anything for this. So, please don't accuse me of these honorable things!

... http://www.kamaldshah.com/2011/12/wait.html


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Monday, 12 December 2011 10:25

ISN Conference at Hyderabad

Written by Kamal Shah
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This year, NephroPlus put up a stall at the Annual Conference for the Indian Society of Nephrology. I attended all the days of the four day event. It was a great experience.

First of all, I saw everything 'nephrology' around me. Erythropoietin stalls, Iron stalls, Dialysis machine stalls, Dialysis center stalls. Kidney was probably the most used word around the conference!

There were a lot of very good sessions by stalwarts from round the world. And there were a lot of people attending the sessions - something contrary to what I was given to believe.

More than anything, however, I got the feeling that it was a great opportunity to network. For nephrologists, for corporates, for vendors, for everyone in the Nephrology industry.

I met with a lot of nephrologists, some of them pioneers, from around the country.

I ran into my own nephrologist, the man who has been treating me for the last fourteen years, Dr. Girish Narayen. He introduced me to his friend. While introducing me, he said he was not sure whether he should refer to me as his patient or his colleague (because of my current job at NephroPlus)!!

The most interesting meeting was with a doctor formerly associated with AIIMS, New Delhi. He came to our stall along with another doctor and started writing his name in our Visitor's Register. I was dumbstruck for a second as I saw the letters form. It was Dr. S. C. Dash. Dr. Dash is a very senior and respected nephrologist. When I was initially diagnosed with atypical Hemolytic Uremic Syndrome, a kidney biopsy was done to confirm the diagnosis. Due to the extremely rare nature of this disease, the biopsy slides were sent to Dr. Dash to confirm the diagnosis. This was a major step in my treatment.

I introduced myself to the doctor and told him that he had seen my biopsy slides years back! He of course did not remember that (he has probably seen thousands of biopsy slides!). But he gave me a playful box on my stomach and said he was very happy to see me like this, meaning, in good shape.

It was an excellent experience overall. When I moved to healthcare, specifically nephrology, from something as different as software, I never thought these things would happen. It has brought me close to many people I never imagined I could even be in touch with.

... http://www.kamaldshah.com/2011/12/isn-conference-at-hyderabad.html


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Sunday, 11 December 2011 04:44

In search of the perfect Baklava

Written by Kamal Shah
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Albert Einstein, while describing relativity said, "Put your hand on a hot stove for a minute, and it seems like an hour. Sit with a pretty girl for an hour, and it seems like a minute. THAT'S relativity.”

You might wonder what relativity has to do with finding good Baklava. Bear with me for a bit.

So, there I was, returning from the Indian Society of Nephrology's Annual Conference after winding up the last day this morning (NephroPlus had a stall and coming up is a post on the happenings), I took the short cut from Hi-tec city to Banjara Hills that goes through the road that houses "Sweet Nirvana", a place where I was told you get great Baklava.

Baklava is something I have been dying to eat from many years now. My yearning began when my grandmother returned from the US and Canada after a visit to her son and daughter. Apparently, my uncle, her son, makes great Baklava. My grandmother is very well read and has a flawless command over language. She described the whole process by which my uncle made the Baklava. He laid out the sheets of 'flow-dough' and then brushed it with syrup and then put crushed walnuts and then another layer of 'flow-dough' and another round of syrup and walnuts. And then he baked it at such and such temperature for so many minutes. The whole description caught my fancy and I have been dreaming of eating the Baklava since then. This was at least fifteen years back.

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I have eaten what people thought was Baklava. I have eaten what people called Baklava. But I don't think I ever ate what was actually Baklava! Weddings, restaurants, no place served the real Baklava. Note that I had never eaten the real thing to actually know what it was supposed to taste like either. But I had made a mental note of what it was supposed to taste and look like and always compared it to that!!

So, I stopped at Sweet Nirvana and asked for some Baklava. I was told there was only one slice left. I asked how much it cost.

"Two fifty"

"Two hundred and fifty rupees?"

"Yes sir!"

"Ok, please pack it."

I was asked to sit at a table and wait. Rs. 250 for one slice of Baklava? I started thinking about how I will explain this to my mother!

In a few minutes I was on my way home. The container was opened and my parents asked me what it was. I told them. The slice was fairly big. We all took a portion. My parents said it was 'ok'. I kind of liked it. It was the closest it had come to my mental image and taste.

Then came the tricky part.

"How much did you pay for it?"

"You won't believe it! This thing usually sells for a couple of thousand. But I got it for six fifty!"

"What? You paid six hundred and fifty for that?"

"It is not at all like the Baklava we bought from Dubai. That simply melted in the mouth. Tell me the truth."

My mother was fairly sure the stuff she got from Dubai was better. Especially since this was six hundred and fifty rupees!

After a few minutes of this charade, they were convinced that it cost Rs. 650.

Then I told them, "I was just joking. It actually cost only two fifty."

"Don't tell lies Kamal. I am sure you paid more."

"I swear. Do you want to see the bill?"

"Yes, show us the bill"

I darted to my room and brought the bill and gave it to my mother.

"Hmmm. Rs. 250."

She was actually quite happy!

I said a mental thank you to Albert Einstein for his theory of relativity and took another piece of the Baklava. I promise that this time it tasted exactly like what I had in mind.

... http://www.kamaldshah.com/2011/12/in-search-of-perfect-baklava.html


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Thursday, 08 December 2011 22:13

Dialysis, summer, cool drinks and my wedding ring

Written by Greg Collette
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Its hot today: 32 °C (90 °F), which is normal, because summer started here just over a week ago.  Melbourne has a temperate climate, mostly a comfy 22° (68°F), with the occasional dip and blip as the seasons dictate.  Until yesterday we had delightful spring temperatures of 17°C to 22°C (63°F to 68°F); so it has been a big and a quick change.  But no problem!  I will be acclimatised within a couple of weeks and this will be the new norm.

Things were different before I went onto the BigD. I would have begun complaining about now that it was too hot, and not stopped until autumn arrived with some blessed low temperatures.

Not so now that I am a member of the BigD club.  One of the founding directives of the club is that you don’t drink more than about a litre a day of any fluid.  This includes not only water, coffee, tea, fizzy drinks, beer and whisky, but also watermelon, jelly, porridge, rice pudding and any other high fluid food.  This is because without kidneys or kidney function, the fluid has no way to leave the building.  So it stays in your blood, rests in body fat, ankles, lungs and anywhere else that gravity and body cavities allow.  The result is bloat, which is unsightly, uncomfortable and dangerous.  It becomes difficult to breathe, and the added load on your heart can be – and often is – fatal.

I have always liked to guzzle water (or an icy soft drink –not to mention beer – mmm… er, sorry).   From a young age I loved gulping water direct from the tap: cold, wet and plenty of it.  Perhaps I knew that kind of joy would be denied me later in life, so I drank as much as I could before the kidney bell tolled – who knows.  Anyway, now it’s a litre a day, and has been for so long that it is second nature.  I always reach for the smallest glass, half fill it and leave a little in the bottom when I finish.

Most BigD-ers can tell is they have drunk too much.  I know by my wedding ring, which doubles as a body fluid indicator.  Immediately after dialysis, when I’m at my base weight, my fingers are really thin, with very little flesh.  When I interlace them, I can feel the bones and not much else, and it’s possible for me to gradually slide off my wedding ring.  After a day’s break from dialysis, my hands become fleshier, and it sort of feels normal (softer) when I interlace my fingers. There is no way I could get my ring off.  If I have drunk too much, they become quite plump, and I can barely find my wedding ring.

So why do I like summer?  On a hot day, in the sun or the shade, we sweat.  A lot more than we imagine.  I usually have a drink or two of water or tea in the morning and the same in the afternoon.  In summer, each drink seems to evaporate as you swallow it.  On a really hot day, a drink an hour may not keep up with evaporation.  So guess what?  Guzzle time.  Every few hours through the heat of the day: a whole can of lemonade (Coke, with all that potassium is a bridge too far), or even the odd icy beer.  Just like before this BigD business began.  Bliss.

Just writing about this has made me thirsty, and I happen to know that there is a small can of lemonade with my name on it in the fridge.  Roll on summer.  Cheers!

... http://bigdandme.wordpress.com/2011/12/09/dialysis-summer-cool-drinks-and-my-wedding-ring/

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