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Sunday, 31 October 2010 06:06

A hectic fortnight

Written by Kamal Shah
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The last couple of weeks have been really hectic. There was this new project we started at Grene for which a prototype had to be completed asap. This resulted in some late nights and working weekends, something unheard of in my career at Grene!

The work culture at Grene is generally very healthy. You do your work. As long as you are reasonably productive and work responsibly, no one bothers you.

In addition to this, I was busy with things at Nephroplus too. We had a stall to manage at the TiE-ISB Connect event that was held at the Hyderabad International Convention Center. This was basically an event for budding entrepreneurs to meet people who had already taken the plunge and started businesses on their own. There were panel discussions on various topics (one of which was healthcare) where people from different backgrounds would discuss the topic and then there would be an open Q&A.

Initially I thought that these discussions serve no real purpose other than giving people an opportunity to network. I was probably wrong. I could sense the encouragement wannabe-entrepreneurs got by simply seeing people who have taken risks succeed in a field close to their heart!

Well, I also heard more jargon than I have in quite some time. Value proposition, stakeholders, tier x cities, strategic investments. Gosh, I did not even understand many of those terms! I wonder if the speakers themselves were just bandying them about without really meaning anything. In one answer to an audience question, the speaker used so much jargon that I got totally lost. In fact, I thought he answered yes to the question when I realized, to my utter horror, that he actually meant no!

Today, Sunday, I decided to take it totally easy. So, apart from my weekly pilgrimage to Poorna Tiffins (while on the topic, I might as well mention a joke I put together - Q. What is K Rosaiah's main contribution to the city of Hyderabad? A. He inaugurated Poorna Tiffins! hehehe... He really did, you know! When he was a simple MLA), so, apart from my weekly pilgrimage to Poorna Tiffins, I did not do ANYTHING. I practically was on my bed the whole day, watching TV and browsing using my iPad.

It's 4:30 now and I am feeling so much better. Rested. My body was actually aching last evening due to all the strain of the past two weeks. I am really glad I rested totally today. I even skipped a family lunch at an uncle's house.

I must really control the time I spend at work. This is totally not sustainable. It is good to say you are leading a normal life despite kidney disease. It is however important to not overdo it!

... http://www.kamaldshah.com/2010/10/hectic-fortnight.html

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Saturday, 23 October 2010 09:30

CFH/CFHR1 hybrid

Written by Kamal Shah
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I got an email from Dr. Tim Goodship from the University of Newcastle upon Tyne in the UK this morning.

I had sent my blood samples to this lab in 2006 for genetic testing for atypical HUS. They had sent me initial results saying they could not find any mutations of Factor H, Factor I or MCP, the three most commonly implicated genes in aHUS.

Apparently, they did more tests subsequently and a very specialized set of tests revealed that I did have an abnormal form of the Factor H gene called CFH/CFHR1 hybrid. The chance of recurrence of atypical HUS after a transplant with this abnormal gene is 80%.

So, that pretty much rules out me getting a transplant using the current protocols. Even plasmapheresis may not help.

My only hope now is Soliris (Eculizumab) from Alexion Pharmaceuticals. They have just recently completed a set of Phase 2 clinical trials in patients who were resistant to plasma therapy and patients who were on chronic plasma therapy. The clinical trials have met the objectives, they say. I have myself seen scores of papers on the results of the use of this drug and the rate of aHUS remission has been 100%.

Though daily nocturnal hemodialysis has shown outcomes comparable to that of a deceased donor transplant, I still think I want a transplant. The hassle of undergoing dialysis every day and the restrictions on travel (portable machines are not yet available in India) make a transplant seem like complete freedom. So, I really hope Soliris becomes available for use in renal transplants soon. That, as I said, is my only hope.

... http://www.kamaldshah.com/2010/10/cfhcfhr1-hybrid.html

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Salma from Leeds left this comment through the week:

I have just read Maya’s story and I am devastated, I really do feel for her because at this moment my dad is in the same position but thank god he has not passed away, after staying in intensive care for up to two weeks thankfully he is a little better now but still not the same as before and by the looks of it he will never be the same again because of this blow up of his fistula, I would like some help maybe information about what is happening, me, my mum and all our family are going through such a hard time and it blew up because of the NHS staff in Leeds. If u could get back to me I would be more than grateful. Thank you. Salma (Leeds)

Here is my response:

Hi Salma, thanks for your story.   While there is no magic wand, things are not as bad as they seem.  Like they say, the antidote for fear is knowledge, so hopefully I can help a little by giving you an idea of what to expect.

Firstly, while bursting a fistula is quite rare, as long as it is caught early, your dad should recover completely, given time and no more dramas.

What should you expect?

The most likely course of action will be that a vascular surgeon will sew up and close off the damaged fistula and put in a temporary line or a permcath (permanent catheter), which is usually connected to the jugular vein in the neck so that dialysis can continue uninterrupted.  A permcath can stay in place for up to 6 months.  This will ensure that your dad stays healthy while he recovers.

One advantage of this line is that there is no needling; they just connect the machine to the permcath and begin dialysis (sweet!).  There are disadvantages: it can be prone to infection and requires a higher level of infection control during and after dialysis, regular dressing changes, etc.  For the same reason you can’t get it wet, so it is fiddly when you want to have a shower.

Once your dad is stabilised, the surgeon will review the various options for creating a new, permanent access site for ongoing dialysis.

To understand the options, let’s talk about how a fistula is created. Each arm has three arteries that could be used to create the fistula: the radial and the ulnar in the forearm and the brachial in the upper arm.  So if his fistula was in his forearm, there are three other sites that could be used to create a new one: same arm, upper; other arm, forearm; other arm, upper.  If you have looked around your dad’s dialysis centre, you will probably have seen the whole mix: fistulas on the left and right, lower and upper arms.

One of the newer tools available to the surgeon now is vein mapping, where the radiology department of a hospital scans the arm and produces a map of the veins and arteries.  They do this by injecting dye into a vein and recording the path of the dye as it is dissipated through the arm using an ultrasound.  I had a very similar procedure recently and it is not particularly painful or traumatic.

The surgeon uses the map to find a good artery-vein combination, usually with a vein that is fairly deep in the arm.  The surgeon then operates to join the artery to the vein.  The high-pressure artery gradually expands the low-pressure vein to create the fistula.  They choose a deeper vein so that as the fistula grows it is protected somewhat by the surrounding flesh in the arm.  The new fistula may take up to 6 months to grow into a functional access.

If the surgeon can’t find a suitable vein, she may choose to install an artificial vein, called a graft.  The graft is usually made from a Gortex tube large enough to act as an access point pretty well immediately after the wound heals.  There are a couple of disadvantages:

  • The body often sees it for what it is, a foreign body, and tends to try and block it by blood clotting.  People with grafts often take aspirin every day to minimise the chance of this happening.
  • The graft can get infected, especially if staff and the graft owner are not meticulous about infection control.  Also, since it is a piece of inert material, it won’t get sore like a fistula infection, so there are no symptoms until the infection is well advanced.

However a graft is a good option.  Many people on the BigD have grafts in place for years.

The arms aren’t the only places where a surgeon can create a fistula.  Some people (especially diabetics) may have peripheral vascular disease, which makes many veins unusable.  Other options include creating a fistula in a leg, or even in the neck.  These are not common (I have never met anyone with either).

Finally, many people have more than one fistula through some kind of failure (though usually not for such a dramatic failure as your dad’s), so your dad is going down a well-worn path.  I know it is a horrible time for you and your family but I’m sure you will get through it.

Please feel free to ask for help or support at any time.  Let me know how things go.

I hope this helps a little.  Keep in touch.  Greg

... http://bigdandme.wordpress.com/2010/10/23/dialysis-surviving-and-recovering-from-a-damaged-fistula/

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Thursday, 21 October 2010 23:27

Mac OS X Lion?

Written by Kamal Shah
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I subscribe to Google Alerts on Apple stuff using Google Reader. Yesterday, I learnt that Apple has sent out invitations to an event on October 20th that said "Back to the Mac". The invitation had a hidden picture of a lion indicating that Apple might be coming out with a new version of its Operating System.

This is expected to be a major upgrade from the previous version, Snow Leopard which had mainly performance enhancements. People are speculating that Apple might eventually merge their iOS with Mac OS X and this might be the last version of the desktop OS.

Well, with Apple, you can never be sure. The entire world expects something and then Apple comes out with something totally unexpected.

I am going to be keenly awaiting the October 20th announcement. I have been using a Mac for years now and am really excited to see what Apple has in store for us! They have revolutionized the phone and the tablet in the last few months. Let's hope they have something equally great for the desktop now.

... http://www.kamaldshah.com/2010/10/mac-os-x-lion.html

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Thursday, 21 October 2010 20:13

A good IDE goes a long way

Written by Kamal Shah
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An IDE, or an Integrated Development Environment is the tool that you use to create software. A lot of the credit for the success of any development software goes to the IDE. Who would develop using Dot Net if it weren't for Visual Studio?

I primarily use two IDEs for my day to day development - Eclipse for all my WebObjects and Java work and Xcode for all my iPhone and Cocoa work. Eclipse is definitely the better of the two.

Eclipse is Open Source while Xcode is Apple's product (see, I am not biased!).

These days, an IDE does a lot more than just give you text editing capabilities. Code completion, refactoring, inline documentation, templates and more, all these make life much easier.

Code completion is one of the most important features for me and Xcode simply does a bad job. Let's say I type the first few characters of a variable or a method. Now, when I hit the key for code completion (Esc for Xcode and Control+Space for Eclipse), while Eclipse will show me a list of options, Xcode often fills the first available option which, most often is not what I want!

File organization is another area where Eclipse beats Xcode hands down. Eclipse simply mirrors the disk file system of your project folder. Xcode, on the other hand has no connection between the two. You could have all your files in one folder on the file system whereas the project could have everything organized in folders. This becomes a problem as you manually need to go and move things around when the number of files becomes large.

Of course, Apple fanbois will still swear by Xcode (as with anything that has an Apple logo on it), but I really hope Eclipse starts supporting Cocoa and Cocoa Touch! Or that Xcode 4, touted as the next best thing since the iPhone 4 lives up to its promise.

... http://www.kamaldshah.com/2010/10/good-ide-goes-long-way.html

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Wednesday, 20 October 2010 19:42

Managing Life Expectancy – Yours!

Written by Steve Bone
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So you want to live? Yes, a tough opening line, but every dialysis patient needs to understand the facts. Your doctor, rightly, will tell you that dialysis is not a cure, it’s a treatment. And, they should tell you that a transplant is not a guarantee.

It’s a fact that the life expectancy of dialysis patients, on average in years, is measured on the fingers of two hands. And, it is fair to say that if you stick with the absolute minimum of dialysis YOU think you can get away with, then start cutting the number.

The key to a much improved life expectancy is to improve your treatment. You need to get beyond the the 3 days a week for four hours mentality and consider daily dialysis, which can be for 3 or 4 hours a day, or nocturnal. To do this though, unless you are in an area that has a dialysis unit that offers nocturnal options, then the solution lies in dialysing at home.

I’ve banged on a bit about home dialysis before, but the real benefits are that you can take real control of your treatment and have a major impact on your long term health. Unless something quite radical happens in UK dialysis centres, the cost constraints that govern provision of facilities, nursing and supplies will continue to restrain centres to the standard 3 days x 4 hours routine as that ensures a reasonably controlled shift process, and moves through the maximum number of patients. When you see patients on dialysis with low pump speeds, clammering to come off early because they are bored or have something more important to do, you realise that many just do not get sufficient treatment to maintain good health. (and, to be frank, what can be more important than extending your life for as long as possible?)

A concerted effort to move all able bodied and those with the facilities to accommodate dialysis equipment should be trained to go on home hemo, this reduces costs to the NHS after the 16-18 month payback period, so freeing cash, and space to offer those that cannot go home a more considered dialysis regime at hospital so that they achieve better clearances because they are no longer ‘rushed’ to get off in 4 hours. The money saved through the home hemo route can then be ploughed back into the development of bigger and better facilities for those needing hospital treatment and may even offer the option to start nocturnal units, as is becoming increasingly ‘popular’ in the States.

All round, the average life expectancy of ALL dialysis patients will be enhanced.

And…. given the earlier blog post from me on finding an intelligent solution to the stalled donor situation, is this not one area for strong consideration. A case of changing the way we do things to achieve better results rather than trying to change the world on donor organs where half that world wants no change.

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... http://mydialysis.co.uk/blog/2010/10/21/managing-life-expectancy/

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Friday, 15 October 2010 18:08

Dialysis and Viagra

Written by Steve Bone
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So, you’re on dialysis, and with that, and age, the combination has led to embarrasing difficulties. If you are in a relationship from before you started dialysis, then your partner has shared things with you and may well be more understanding, but what if you are single, not only do you have the big D to overcome as a conversation stopper, but if things turn out great, the time will come when you go to bed and another embarrassment could result!

The good news is, so long as your blood pressure is fine, and you are generally well in your treatment, consult your GP about Viagra. Amazingly it’s not a big deal to talk about with your GP, and they will be able, in most cases, to prescribe Viagra. You may be started on a lower dose to check you can cope with the changes this causes. Viagra does have the effect of lowering blood pressure, so if your pressure is low to start then not a good idea to take it.

Also note that you are likely to experience elevated heart rate, so if this causes you problems, don’t take it and consult your GP.

The weird and almost beneficial effect is that if you have no renal function at all, the effects last longer!

But! Always consult your GP, and if they are not certain on the answers for you, they must consult your nephrologist or consultant.

The main thing is, don’t hold back, every day solutions can work for many on dialysis.

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... http://mydialysis.co.uk/blog/2010/10/16/dialysis-and-viagra/

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Friday, 15 October 2010 16:53

Green Dialysis – Improving conservation and waste

Written by Steve Bone
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There are so many ways that dialysis can be improved and I will focus on a number of good practices and new ‘stuff’ over the coming blog posts. But for this post, I was drawn by this article on saving the huge amounts of water used in dialysis and recycling, something they have been doing in Canterbury for 10 years now. The excess water from the reverse osmosis process is saved and pumped to a special tank in the roof set aside for this purpose and the water is then used to flush toilets in the unit. The process can save 800 litres of water per hour, and although the cost of installation was £15,000, the savings in ten years have been in excess of £75,000. One for the NHS bean counters to ponder – bit of a no brainer I suggest, especially as they installed the same process in the new Ashford dialysis unit from new, so being cheaper to instal, and savings achieved much sooner. I wonder if they thought to do that in the new Peterborough City Hospital we are moving to in November this year? Hmmmm! I’ll ponder that for a moment, and ask the question and update this blog post when I find out – think I know the answer though! http://greenerhealthcare.org/nephrology-resources/conserving-water

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... http://mydialysis.co.uk/blog/2010/10/15/green-dialysis-improving-conservation-and-waste/

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Friday, 15 October 2010 16:42

Dialysing on Crete – Stay here! A Recommendation.

Written by Steve Bone
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Having dialysed on the island of Crete for two holidays now, I stayed in a great find in the hills above Hersonnisos. Creta Blue Suitesin Koutouloufari is a family run business, with a range of suites set around the pool and bar/restaurant. The Roussakis family is Eleni (mum), Vangelis (dad) and George (son and General Manager, and everything else, it seems!).
You are made to feel so very welcome, and it feels like the family are sharing their home with you. The rooms are excellent, clean and well furnished and 90% have great views out to sea.
From breakfast in the morning in the sun, through lunch and dinner, the food, the brainchild of Eleni, is perfect. The dishes are varied, and generous, as well as excellently prepared and cooked. And nothing is too much trouble, just ask, and George will sort it! So even if you want veggie options, or want one of the dishes prepared a bit differently, the result is always excellent.
During the day, if you don’t want to stray far, you can laze around the infinity pool and enjoy drinks and snacks to your heart’s content. If you venture into the pool, prepare for hypothermia! It’s cold! But in the heat of summer, very welcome.
If you do get out and about there are numerous tours you can take, either by dropping down the steep hill into Hersonninsos and trying out one of the many travel agents. or hire a car. The freedom to explore the island by car is by far the best way. You can take your time, and if you find somewhere you like, you can stay for longer. You can head south into the mountains, east to Agios Nikolaos, or head west to Chania, although I found Rethymnon a pleasant stop. Coffee shops every 2 paces so be prepared to be pounced on for coffee or food by eager waiters telling you they are the best award winning restaurant on the island!! To be honest, most look fine, so just take your pick – but it is interesting to notice the ones that are wall to wall busy, while their neighbour is empty – go with the crowd is my best tip!.

So, all in all, a great place to stay, central to all the good stuff to see and do, and a really friendly feel that makes you feel welcome, especially when you go back and get greeted like long lost friends by Vangelis – lovely bloke! And for dialysis, just 30-35 minutes away, and Mesogeios will send a taxi to pick you up, but I drove to dialysis, as I’m independent and stubborn and want to do things my way! :-) Go and enjoy! This is a real 5 star break!

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... http://mydialysis.co.uk/blog/2010/10/15/dialysing-on-crete-stay-here-a-recommendation/

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