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Wednesday, 15 June 2011 18:22

NxStage training fouled up

Written by Steve Bone
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Big surprise. Went into dialysis on Saturday expecting to start my training on the NxStage today, Wednesday, only to be told it had been cancelled. A new training date ‘offer’ of 18th July was given. After some digging and a few emails it transpired the Leicester renal management had entered into contractual discussions with Kimal, the uk partners for NxStage, and as a result had put everything on hold. But of course they failed to tell any of the nursing team in Peterborough, and least of all, me. Quite disgusting behaviour and typically public sector – careless.
A call to the Chief Exec’s office on Monday morning has now resulted in training starting next Monday with a trainer from the USA.
I took the opportunity to raise the issue of the dirty dialysis machines, the erratic supply of consumables such as plasters, sterile packs etc, the lack of sufficient bedside tables on which to place necessary equipment to get on to dialysis with and a few other areas of issue. A lax attitude by the managers is not acceptable.
With the public sector threatening to strike over pensions etc in the next couple of weeks, I can’t help thinking the whole malaise and attitude of the NHS and other public units will never change as there is poorly focused, non commercial management leading the way.
Pity really, there are some damned fine people amongst the dross, dealing with the mushroom management! Yes, you know, kept in the dark and crapped on occasionally!

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... http://mydialysis.co.uk/blog/2011/06/16/nxstage-training-fouled-up/

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Saturday, 11 June 2011 20:12

Internet based Nephrology Congress

Written by Kamal Shah
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The 6th Congress of Nephrology on the Internet is being organized this year from November 15th to 30th. This novel Congress is held entirely on the internet. The way it works is presenters prepare their presentation in the form of slides, video or audio and upload it to the site. On the designated dates, the forums are opened where participants can go to the forum and view the material and then ask questions which the presenter answers.

It is a really novel idea where people from all over the world can interact with experts in different areas of nephrology. It is especially useful where people do not have the resources (or big pharmaceutical companies footing the bills!) to travel to other parts of the world where such conferences are held.

My article in the American Journal of Kidney Disease brought me an unexpected invitation to present a session at this conference. At first I thought it was a mistake and wrote back to the organizers saying that I am just a patient, only a patient and after all, a patient! They wrote back saying that they knew that but would like me to present my home hemodialysis experience from the Indian perspective. I was very happy! I accepted.

This is a link to the sessions that will be held. This is a link to the section (Hemodialysis and Apheresis) that has my session. I find myself in august company where Nephrology is concerned. There is Dr. Andreas Pierratos from Canada who is presenting an update on Nocturnal Hemodialysis. Our very own Dr. Sidharth Sethi from AIIMS, New Delhi is going to be presenting about HUS.

The best part about this conference is you can attend and contribute to it at your own leisure. This gives everyone a lot of flexibility along with the opportunity to learn.

So mark your calendars. Date: November 15th to 30th, 2011. Time: Whenever. Location: Your computer!

... http://www.kamaldshah.com/2011/06/internet-based-nephrology-congress.html

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Thursday, 09 June 2011 20:24

Young with CKD

Written by Kamal Shah
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I met a 30 year old guy yesterday at one of the NephroPlus centers. He has been on dialysis for a few months now. Very well informed and proactive, he knew his options and was making educated decisions. A refreshing change from many other patients I see.

The issues to deal with for the younger lot diagnosed with CKD are very different, the most important among them being the longer life with the disease you have to deal with. Many people who are diagnosed with CKD in their later years have mostly 'lived their life' and don't have too many regrets getting the disease. They resign to the fact and accept the disease and try to pass off the rest of their days peacefully. Of course, that is not to say they are having a great time. But, compared to the young, they are probably lucky!

The young, on the other hand, are just embarking on life's journey when God/fate/karma/whatever has struck a huge blow. Suddenly, their plans all go awry. They have to contend with a life-threatening, chronic condition for the rest of their lives. Every step of their life will now be dictated by this disease. What they eat, what they drink, where they travel, whatever they do, everything, will now be governed chiefly by this disease. It is not easy.

The side effects of long term kidney disease can affect your quality of life in many ways and they tend to become worse with time.

Therefore, I strongly feel that if you are young and have CKD, you should take a shot at a transplant. Yes, it is not always successful. It may have its drawbacks in terms of having to bear the cost and side effects of immunosuppression medication and steroids. But, in my opinion, it is the only shot at a normal life that people with CKD have. Unless you have some condition that prevents you from getting one (your primary disease, some other inherent condition, finances etc.) you should give a transplant a shot. Make sure your nephrologist has done plenty of transplants. This is very important from the point of view of handling post-transplant complications where medicine doses might need to be altered or the medicines itself might need to be changed. So, talk to your nephrologist about the possibility of a transplant immediately. You will not regret it!

... http://www.kamaldshah.com/2011/06/young-with-ckd.html

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Sunday, 05 June 2011 07:19

Linux - not for the faint hearted

Written by Kamal Shah
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I am currently deploying a WebObjects application on an Ubuntu server. Yes, yes, I am very brave. But I have help, so it has not been that difficult.

What has been problematic is something that we take for granted - fonts.

Yes, Ubuntu and many flavors of Linux have no fonts installed. Yes, you read that right. No fonts. Period.

But little Kamal did not realize that and he set upon a mission. Of generating reports on a WebObjects application on Ubuntu using ReportMill.

App was deployed. First there was some issue with the WebServerResources. None of them were being read. I figured out that WO WebServerResources are stored in some other folder - not the regular document root of Apache on Ubuntu. Then I got the app working with the WebServerResources.

Then I tested the app and got an exception when I tried to generate the report. The exception was something about a font class not being found:

Could not initialize class com.reportmill.text.RMFont:java.lang.NoClassDefFoundError: Could not initialize class com.reportmill.text.RMFont

At first I thought that the ReportMill jar is not being found. Trust java to come up with some weird exceptions! Class not being found it said. Wait till you hear about what the reason for the exception was!

I contacted Shravan Kumar Mahankali, the best WO guy in India. The genius that he is, he immediately pointed out that the problem was not with the jar since the Font class was being recognized (otherwise we would have got a much higher level class not being found).

A little googling told us that in Ubuntu no fonts were installed by default. And we would have to install the basic fonts too. Some more googling and a lot of trials and errors later, I found that the command:

sudo apt-get install msttcorefonts

solved the problem!

I really wonder why even the basic fonts are not installed in this platform! Heck, I used good old Arial! Event that wasn't present. Despite all the changes, Linux continues to be a geek's OS. Not for the rest of us. 

... http://www.kamaldshah.com/2011/06/linux-not-for-faint-hearted.html

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Sunday, 05 June 2011 05:20

Daily Dialysis Update

Written by Steve Bone
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An update on the daily dialysis test. The blood results achieved by doing 6 days of 3 hours were quite impressive. A large drop in phosphates, which, if continued would require a reduction in binders required, and also a drop in PTH – my parathormone levels have been rising, despite having a parathyroidectomy a few years back, some of the thyroid tissue must still remain, and so I need to improve the balance between calcium intake and phosphate control. The daily dialysis clearly had an impact, and I am keen now to see the effect of daily over several weeks. Of course another benefit of daily dialysis is a more relaxed diet regime as well as an easier to tolerate fluid intake. If you have ever tried to exist on 500ml of fluid a day – you’ll know how tough that can be. I have always struggled with this, but daily dialysis is a big help as taking off 1 to 1.5 litres a day is perfectly doable and means I can drink tea whenever I want (within reason).

The plumbing for the NxStage has now been done by Leicester unit, hardly know there is anything there – very neat an inconspicuous. The machine arrives on the unit in under 2 weeks now and I start my few days training on 15th June, all being well, home the following week.

Watch my blog for daily updates once it arrives! (Oh, and apparently, Leicester are now installing 6 of these machines, so more popular than at first thought).

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... http://mydialysis.co.uk/blog/2011/06/05/daily-dialysis-update/

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Tuesday, 31 May 2011 21:56

Pulling a fast one

Written by Kamal Shah
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Baba Ramdev, the yoga guru embarks on a indefinite fast demanding that black money that is stashed away in various banks abroad be brought home immediately. Nothing wrong in black money being brought home. But this kind of threatening and demanding different things by undertaking a fast is becoming a little too frequent for comfort.

A few weeks back we had Anna Hazare fasting for the Lokpal Bill. The government conceded and formed a committee to look into this. Today, the committee is at loggerheads on practically all the important points of the bill. The members of the committee from civil society have threatened to walk out.

A few months back, we had the prince of all thugs, king of all scoundrels, corruption personified, prisoner of the gutters go on a fast for a separate state of Telangana. After a few days, the government conceded. A quick trip to Delhi, a meeting with Madam and there was a rollback. Someone's bank balance had definitely gone up. Don't ask me which bank though!

So, the point I am trying to make is fasts don't work. And they shouldn't. We are not in the Gandhian age and neither do have a Gandhi among us. Blackmailing the government on any issue is wrong. Decisions like these should be taken after more careful consideration and consultation. Only then can we have a meaningful, implementable resolution of any issue. Only if the government of the day is serious about something will it see the light of the day. Otherwise, you will have insincere attempts, half-hearted discussions and meaningless actions.

However, if something as important and serious as corruption is not tackled seriously, where would we head as a nation? I totally agree that these issues need to be addressed. But fasts are not the way out. These will not show us any results. We will only end up having more confusion.

... http://www.kamaldshah.com/2011/06/pulling-fast-one.html

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Sunday, 29 May 2011 03:48

Dialysis, calcium and phosphate binders

Written by Greg Collette
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One of the fun things that happen when two or three BigD members gather together for coffee or a meal is the phosphate binder ritual: all hands dip into pockets to find calcium pills, into the mouth, swallow with a sip of water and its back to the conversation.

All about phosphate binders from Cath F at Diaverum

We all do it, but I know it took me a while to understand why.  Just recently we had an in-house briefing about it at our dialysis unit from the very excellent Cath F, so I thought I’d share what was said.  (The good stuff is hers, any mistakes are mine.)  Thanks Cath.

It is all to do with ensuring that our calcium levels remain high enough to keep our bones and muscles strong and healthy.  I have often thought that my body is just a big bag of chemicals.  If all the chemicals are in balance, I feel fine and can take on the world.  If the chemicals are out of balance, I’m not worth talking to.

In the case of calcium (and its evil brother phosphate), it is very much getting the mix right.  In the normal course of events, we eat foods with calcium and phosphate (and many other things).  The calcium and phosphate travel to our stomach, where the right amounts are absorbed into the bloodstream and the rest flushed away via the bowel.

How calcium levels are regulated in the body (thanks Wikipedia)

Guess which organs regulate the level of calcium and phosphate in the bloodstream?  You got it, the kidneys (with the liver).  They do this by producing a hormone called Calcitriol, or activated Vitamin D.  Calcitriol also controls another organ group, the parathyroids, four glands the size of a grain of rice in the neck, surrounding the Adam’s apple.  These control how much calcium is in our bones, and how much calcium is in our blood.

But for BigD members, it’s a little different.  Without the kidney producing the Calcitriol to control how much phosphate and calcium gets into the bloodstream, the gates are wide open.  That’s when the evil brother takes over.  All those extra phosphate molecules in the bloodstream attract and combine with the calcium, quickly causing a calcium shortage.  The parathyroids identify the shortage and instruct the body to release more calcium from our bones.  The phosphate combines with that calcium too and the parathyroids calls for more calcium, and so on in a vicious cycle until our bones become porous and fragile.  Bad news all around.

There are several actions we can take to prevent this.

  • Firstly, we can replace the Calcitriol that our kidneys no longer produce with artificial Calcitriol (in little red and white football-shaped pills) that performs the same function.  The level required varies and most people have a regular blood test (typically monthly) to track and manage it.  I take four every Thursday.  The level sorts itself out over the week.
  • Secondly, we can slow the operation of the parathyroids.  These days this is done with a drug called Sensipar® (or Mimpara®), that mimics a high calcium level for the parathyroids.   It stops them sending those “send more calcium” signals to our bones.  Before this drug, we used to have a small surgical procedure to remove some or all the glands.  I am in this “before” group.  You can tell who we are: we all have a nice white line below our Adam’s apple (indicating that we are all members of the BigD Parathyroid Subcommittee).
  • Thirdly and most commonly, we can take phosphate binders. These work pretty simply: you take at least one just before you have food or drink that has phosphate in it (just about everything has phosphate!).  The pill sits in your stomach and unravels into liquid.  As the phosphate-rich food arrives, it floats in the calcium liquid, and the phosphate binds with the calcium.  The joint phosphate-calcium molecules are then carried through the gut, into the bowel and out into the cold hard world again.

Pretty-well everyone’s monthly blood tests include phosphate levels, so it’s pretty easy to keep track.

I take about two 600mg Caltrate (calcium carbonate) tablets and one 750mg Fosrenol (lanthanum) chewable tablet as phosphate binders before meals.

Over the last few months mine have been stubbornly high, and I have the itches and aches to prove it.  However I recently increased my Calcitriol dose and I think things are improving.

The other technique of course is to cut the phosphate-rich food you put in your mouth.  I made the mistake about 6 months ago of going onto Soymilk.  I thought (without doing any research) that it must have lower phosphate than cow’s milk – seems logical, right?  Every week I got itchier and every month my phosphate level got higher.  I doubled my phosphate binders and it was still high.

Finally I spoke to our unit’s dietician and she told me the awful truth: soymilk is VERY high in phosphate.  And I was having a great dose on my cereal every morning!  So I asked the obvious question: what should I be having?  The answer surprised me: Rice milk – low in phosphate and quite tasty (though rice milk on rice bubbles seems a little one-dimensional).  Still, the result has been impressive: my phosphate is nearly normal.

So next time you get together for coffee, don’t forget the ritual.  Do it early and do it often, and keep your bones healthy.

... http://bigdandme.wordpress.com/2011/05/29/dialysis-calcium-and-phosphate-binders/

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Saturday, 28 May 2011 11:37

Abhi tak hum zinda hain!

Written by Kamal Shah
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Yes, I am still alive. And kicking! No posting from a few days, yes. But that's because I've been a little busy.

I have been mostly busy with the automation project of the Jain Dialysis Trust. The coupon distribution that happens every last Sunday of the month was becoming very chaotic and difficult to manage. So, Shri Inderchand Jain asked me if it could be automated. I said, "Sure!" And got started with this project. I couldn't contribute financially to this extremely noble cause. This was the least I could do. So, with the help of my dear friends, A Srinivas, Ankurpreet Singh and PVK Ramesh, I embarked on an enterprise of honorable, dangerous consequence. Honorable because the cause was so good and dangerous because failure would be disastrous!

After much of going back and forth on the technology, we got the application complete. We have the hosting figured out too. Now only the testing and deployment remains! Wait a minute! Did I say 'only'? No way. Testing and Deployment can be major, major headaches. Let's hope the project gets done soon and well.

On the medical side, my hemoglobin went down to 9.9! Well, it was 13+ at one point. In an extraordinary act of courage, my neph decided to reduce my Erythropoietin to 2,000 units a week. Within weeks, the hemoglobin plummeted to 9.9. My neph blamed me for not checking my Hemoglobin often enough! I have been accused of many things in life. But not this. Never have I been accused of not doing blood tests often enough. I check it once a month at least! Not enough, he said. Once in fifteen days it is, now! So 9.9 leaves you with not too much energy at the end of the day. I am now on 4,000 thrice a week. It has bounced back to 11.4! If the blood tests are right, that is!

All this low hemoglobin has not reduced my swimming though. I am gradually increasing the amount of swimming I am doing. I changed the pool I swim in recently. And I am doing more than my last pool. The motivation for increasing the swimming was mainly the increased weight which was probably due to the relaxed diet (sweets and fried stuff) I was indulging in. So, I now have given up sweets and fried food (chocolates exempted from the ban).

I am still unable to give up the ghee on idlis though. Right in the midst of this austerity drive, I went to Poorna Tiffins one Sunday morning, firm in my mind, that I would have the idlis without ghee. I successfully managed that too. But it wasn't the same. My day felt incomplete. Dry. Something was missing. I had to go back on the Wednesday following that Sunday and have my usual idlis laced with ghee. I think the weight loss will have to come from more swimming!

... http://www.kamaldshah.com/2011/05/abhi-tak-hum-zinda-hain.html

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Sunday, 22 May 2011 20:03

Unexplained problems of dialysis patients

Written by Kamal Shah
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I often have problems that bother me for a few days and ask my doctor about on my next visit. Sometimes he knows what to do. Sometimes he just ignores it or gives me some vague answer and asks me not to do anything about it. I get irritated.

At NephroPlus, I meet all patients that come for dialysis whenever I am at a center and chat with them about how they're doing. I tell them how I am doing. We share our problems and solutions. Often they talk about some problem that I have never had. I have no clue on what they could try. I tell them as much. I tell them to talk to their doctor. They most likely have already done that and have not received any advice.

Well, that is the nature of the human body. Medicine has so much yet to be discovered. What has been unravelled is but a tiny part of this very complex system. Just think about the way the parathyroid glands control the level of Calcium in the body (see this link) and you will begin to appreciate this almost magical system called the human body. At lower levels, when I read about the way the complement system works (especially interesting to me because of my primary disease) and the mind-boggling number of chemicals involved released and absorbed by various tissues, I see why medicine has not been able to solve so many problems related to disease. Still, the progress made is stupendous by any standards.

Given such a complex system, it is impossible, at least at this stage, for doctors to be able to figure out every small problem patients have. Patients must understand this. At the same time, it is important not to ignore certain things. Things that could be signs of a serious condition. So, we, as patients, must watch out for every symptom that is out of the ordinary.

We must talk about every problem with our doctors. If they don't know about it or ignore it, we must not get irritated. We must understand the limitations of medical science. Especially if the symptom is something transient, lasts only a few days. On the other hand, if there is something that is persistent, something that is recurrent or something that is paining or bothering you, then do not ignore it. Talk to your doctor. If he is not able to help, talk to another doctor. Or look up the symptom on the internet. There are plenty of support groups online. Ask there. The I Hate Dialysis suport group has hundreds of members and will very likely give you some answers.

... http://www.kamaldshah.com/2011/05/unexplained-problems-of-dialysis.html

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