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When I first started going over posts in forums meant for people on dialysis (most people were from the US), I would find so many mentions of Phosphorus. People would crib about having to take binders. They would worry about the Phosphorus content of the different foods they would take.

Surprisingly, I never heard as much a fuss being made about Phosphorus among Indian doctors, dietitians and patients. Here Potassium was the popular word! Be careful about your Potassium. Don't eat fruits. Phosphorus was mentioned only in passing.

I often wondered about the difference in attitude in these two populations.

Could it be chiefly due to the difference in diet?

Indians, probably, on an average eat much less meat than Americans. Indians, probably, also consume much less dairy produce (milk, cheese, butter etc.) than Americans. These two are huge sources of Phosphorus. Another source of Phosphorus is colas and other aerated drinks. Preserved food also has much higher Phosphorus than fresh food because many of the preservatives have Phosphorus. Americans, again, consume more of preserved food and aerated drinks than Indians.

A senior nephrologist in Hyderabad once said that the problem with the diet in the average Indian dialysis patient is one of too little, not one of too much! Some dialysis patients I see are actually malnourished. They barely eat anything. In most of these people, Phosphorus is usually on the lower side of normal. At one point the nephrologist just tells their families not to restrict anything!

Potassium is a more of a problem even in the healthier patients. Could it be due to the propensity of Indian patients to eat more of vegetables and fruits? Most likely. There not being any Potassium binders (not here, not in the US) adds to this problem and the perception of it being a problem.

When I was on thrice a week dialysis too, Potassium was my big problem. I didn't even think about Phosphorus! These days, of course, I am on Phosphorus supplements because my Phosphorus is too low!

... http://www.kamaldshah.com/2011/07/why-potassium-and-not-phosphorus-is.html


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Monday, 11 July 2011 17:43

London Bridges Walk 2011 – Completed

Written by Steve Bone
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All done – the walk completed, lovely day and great to see so many turn out to take part. I was extremely proud of Jordan and James – James doing this for the first time, and facing a wall of difficulty he has not experienced before. A few tears on the way, but he made it, and earned his medal. Heros, both of them! But, maybe next year he might have a different view on taking part – but it is a year away so plenty of time to recover. If you want to see some photos of everybody, there was a photographer taking pictures and these are at www.purepix.co.uk/bridges2011

There was a bigger group of young ones this year from Peterborough. Last year, just Jordan, this year 6 of them! It would be great to see some other patients going, but nobody from the Peterborough patient group took part.

Thanks to everybody that sponsored me and the boys – and I am pleased to say they got their own sponsorship too, so more money for the pot. When I get some pictures, I’ll post them.

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... http://mydialysis.co.uk/blog/2011/07/11/london-bridges-walk-2011-completed/


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Monday, 11 July 2011 02:25

Moving to a Brand New Dialysis Unit

Written by Greg Collette
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After years of discussions and promises, our whole unit moved to brand new premises last week.  But this was only the latest in a series of changes that were driven both locally and internationally.  It has been an interesting journey, playing musical chairs both in ownership and location.

History

The Unit was set up 17 years ago in 1994, as one of the first private dialysis units in Melbourne.  It started as a three seat, eight-client ward in the Diamond Valley Community Hospital in Greensborough, with Dr Jon Snider as Head of the Unit and Anna Catterall, the wonderful Unit Manager I have written about before.  The Unit grew over the years, until there were eight seats supporting 20-plus clients in a largish wing custom designed for dialysis.

Meanwhile the Community Hospital was taken over by the Mercy Health and Aged care, to become the Mercy Diamond Valley Hospital.  It then closed and reopened as the Diamond Valley Community Centre.  When the Community hospital closed the Unit was sold to Gambro, based in Sweden.

Gambro itself was sold to a group of Scandinavian investment companies in 2006, and in 2007 the new owners split Gambro in two: the original manufacturing company, and a new services company, Gambro Healthcare, which operates Gambro’s 155+ dialysis units in Europe, South America, Asia and Australia (including our Diamond Valley Unit).  Within a month, Gambro Healthcare was sold to Bridgepoint, a private equity group based in the UK.   In 2007 Bridgepoint renamed the company Diaverum.

Diaverum is a name in two parts.  The first part, ‘dia’, represents their core activity, dialysis and renal services.  The second part ‘verum’ means truth in Latin for the honesty, transparency and reliability that the company strives to be known for.

From what I have seen and experienced, they absolutely live up to their name.

The Move

At the Unit Christmas party last year Chris, our super Unit Manager (from the same mould as Anna) confirmed that we were at last moving to a new spot just down the street.  The new Unit, an existing two level, stand-alone building, would be completely redesigned for BigD.  Over the following months, Chris negotiated with builders, armies of government representatives, Diaverum management, staff and the occasional opinionated BigD patient to get the kind of ideal unit she had dreamed of for many years.

For the past few weeks it was a race with builders, painters, plumbers, gardeners, electricians, computer and dialysis technicians, medical suppliers and more to finish in time for the move.  For several weeks we had been told that our Unit would be closed for business on Tuesday and open in the new unit two days later on Thursday.  One of our sister Units, Diaverum North Melbourne, would cover the gap.  Chris and Cath worked out schedules and arranged for taxis to transport all those clients who did not want to drive the 34 km (21 miles) to North Melbourne.

However, the best laid plans and all that.  It is an established fact that the highest risk times for any building are at the start of its life (when so much is happening) and the end of its life (when all maintenance stops).  And our old building ran true to form.  Early Sunday morning before the Tuesday close, the water filtration (Reverse Osmosis – RO) system imploded.  Water everywhere, but not a drop for dialysis.  So Emergency Plan A came into action and the switch to North Melbourne happened early.  Very early.

All the equipment and consumables not already moved there were rushed to North Melbourne, followed by the Sunday patients.  That Unit couldn’t accommodate all the Sunday/Monday patients at their usual times, so Monday patients were called in to Dialyse late into Sunday night.  I was watching George Gently on ABC TV at 8:30pm when I got the call: come in by 9pm, stay three hours and go home (they had been calling all day, but my phone was resting elsewhere).

So the adventure began: I entered the address into my trusty TomTom (iPhone version) and drove off into the night.  I was met by two very tired staff, Chris and Cath who had been there (and on the road between each unit) many hours.  They found my BigD box, some blunt needles and by 9:30pm, I was on.  There were lots of familiar BigD faces in those unfamiliar surroundings!

Since North Melbourne runs the nocturnal service I wrote about a few weeks ago, I got to see it close up.  All the overnighters were in the adjacent room, just settling in for the night.  I thought that this would be a good way to trial nocturnal dialysis for myself, since it was getting onto my bed time and here I was dialysing.  However, I just couldn’t sleep.  It may have been the novelty of the occasion, or the buzz of an emergency, but I don’t think I dozed for more than about 10 minutes for the whole session (which is strange because I can sleep an hour at a time when I go to early morning BigD in my normal unit).

So, three hours of reading, watching some quite strange TV and stranger late-night ads, staring into space and trying to sleep, and it was time to get off and go home.  I was disconnected by 12:45am and home by 1:15am.  I took me another hour to get to sleep and I awoke at 7am in Bizarro World.  Monday, and no BigD for me today.  I was tired and there was no reason why I couldn’t stay there another couple of hours, so I did.  When I finally got up, it was 11am, and I would usually be just arriving at work after morning dialysis.  So I set off for work and pretended all was well.  But it wasn’t really.

Two more days of dialysis at North Melbourne, blissfully uneventful.  The organisation like clockwork – or the staff made it look like clockwork!

The New Unit

Then, finally, Day 1 at the new unit.  First impressions?  Bigger, brighter, newer with lots of windows and lots of space, especially between each machine.  It is a little less intimate: no more spontaneous conversations with neighbours on machines.  Freedom from interruption is both good and bad.  It makes for a peaceful run, but you have to make sure you walk past everyone at the start/end of the run if you want to stay in touch.

Still some work to be done on a way to provide a platform for PCs and other digital stuff, but otherwise great creature comforts: parking spaces, digital TVs, excellent lighting (for us hard-of-seeing), WiFi to come shortly.  And the clean and bright has a big impact after the dark and tired of the old unit.

I got my new access code, just for me, which I guarded jealously until someone told me theirs – and it was the same!  Then I realised that BigDers needing the same access have the same code.  Sensible when you think about it (but not so special…).

The extra space has changed the way the staff have to work too.  They are designing different work practices to find the most efficient ways to do things, rather than walking an extra mile a shift to pick up forgotten items.  So things don’t have that easy-going feel of the known in the old unit, but I’m sure it will come.  The shock of the new fades quickly. (If I don’t write about it this week, it will probably be gone next week, replaced by the shiny new normal.)

Overall rating?  Two thumbs up!

... http://bigdandme.wordpress.com/2011/07/11/moving-to-a-brand-new-dialysis-unit/


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Potassium is a huge problem for dialysis patients! Almost anything that tastes good has Potassium! Mangoes, bananas, coconut, chikoos!

And all dialysis patients know that they have to avoid anything containing high Potassium. "You may die if your potassium goes too high!" "Your heart will stop working if your Potassium goes high!" "Avoid high Potassium foods like the plague!"

So, that begs the questions, "Can I not have any fruit at all?", "Mangoes, ok, I will not touch them. What are the other things I need to be careful about?" "Can I not have one banana just before dialysis?"

There are sites on the internet that have a lot of information on the content of Potassium in many foods. However, most are based on the US foods. Many of those foods are not even available in India. Nectarines for example! And then there are many Indian foods which are not listed in those sites. Also, many foods are grown differently in the US than in India and the potassium content is different in both the versions! Oranges for example.

All these issues have now been resolved!

Just visit this link on the Dialysis in India website (Disclaimer: that site is also maintained by me!). It has the Potassium, Sodium (and many other minerals) content of a huge list of Indian foods!

So, now you can refer to this list before restricting your food! Enjoy!

... http://www.kamaldshah.com/2011/07/great-resource-for-dialysis-patients.html


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Saturday, 09 July 2011 12:44

London Bridges Walk 2011

Written by Steve Bone
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Tomorrow it’s the London Bridges walk in aid of Kidney Research. Hoping the weather holds out for the day. I’m driving down early with Jordan and James and meeting up with quite a few from the dialysis unit in Peterborough. No other patients from Peterborough though! Shame!

Another post and some photos once we’ve completed the walk. If you still fancy donating to this event, you can so this through my page on the Kidney Research web site – HERE. Good luck to all taking part!

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... http://mydialysis.co.uk/blog/2011/07/09/london-bridges-walk-2011-2/


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Saturday, 09 July 2011 12:23

Working on dialysis

Written by Steve Bone
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Everybody’s story and circumstances are different, but for me, I am able to work while I am on dialysis with the NxStage, as I have the machine in my office at home.

I don’t have a large room for the office, but it all fits in ok, and I can get to everything without a problem – all in reach. It’s very noticeable that as I am working while on dialysis, the time passes really quickly. I do half hourly observations but at times it seems like just 5 or 10 minutes have passed. If you have ever sat on a dialysis unit waiting for the 4 hours to pass, you’ll know how long that can feel. The one thing I do miss though is the tea trolley and biscuits!! Yes, really! I make myself a cup of tea as I go on, but that’s gone within about 5 minutes of getting on. Need a tea maker in here, but where I put it will be a tough conundrum.

So, how does it look? See below for some photos of the installation with me working. The machine is behind me and to my right (fistula is in left arm), and the lines are long enough to allow me to type away and work quite easily. If I am working on my PC that is further right, I have a hook on the desk for my lines so I can ensure the lines don’t get caught under the wheels of my chair. (By turning further towards the machine, they tend to dangle on the floor, hence the ‘safety’ of the hook).

The final picture is me with my large cup of tea. You don’t get cups that big on the dialysis unit! :-)

Working on dialysis

Working while on dialysis with the NxStage

Working on dialysis

Easy to work with the lines across me

And so to the cup of tea!!

Working on dialysis

Nice BIG cup of tea on dialysis

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... http://mydialysis.co.uk/blog/2011/07/09/working-on-dialysis/


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So, I have this rare disease called Atypical Hemolytic Uremic Syndrome (aHUS). There are probably a handful of adults in the world that have it. In this disease there is uncontrolled activation of the alternate complement pathway (alternate mechanism of protecting the body against foreign invasions, so to speak).

It has been proved that I have a genetic defect in me where two exons of the CFH gene are replaced by two exons from another gene called the CFHR1. This is called the CFH/CFHR1 hybrid gene. This genetic defect makes me vulnerable to Hemolytic Uremic Syndrome (HUS). The vaccinations that I took in July 1997 triggered this disease.

Until recently, Plasmapheresis was the first line of therapy for HUS. What Plasmapheresis basically does in HUS is it removes the 'bad' Factor H and replaces it with 'good' Factor H. This may not be effective always. This was done when I presented initially with this disease. However, more of Plasma Infusion was performed and little Plasmapheresis was done.

When I got a transplant in November 1998 and HUS recurred, Plasmapheresis was NOT done. This, I feel, in hindsight, was a grave mistake. Not that I blame anyone for this but this would have given us a shot at saving the transplant. I had no clue at that time about these things.

Now, after 14 years with this disease, the co-morbidities of long term kidney disease are catching up with me. My gut feeling is I will need a transplant sooner rather than later. I have a few options at this stage:

- Transplant with Eculizumab
- Transplant with Plasmapheresis
- Status Quo

A transplant with Eculizumab has the best likelihood of success. Most people who have taken Eculizumab (about a dozen have probably had transplants around the world with Eculizumab) have not had any recurrence of aHUS. The problem? Not yet available in India. Costs prohibitively high to even consider importing. (Just to give you an idea, it would cost about $300,000) Realistically speaking, it might take upwards of 4-5 years for the drug to become available in India and reasonably enough proceed for me to be able to use it. Some people talk about clinical trials. Clinical trials for transplants? Hmmmm...

The third option is a status quo. Continue like I am doing now. On dialysis. Quality of life is not bad at all. However, things are happening. For sure. My skin looks alarmingly bad. My nephrologist has warned that my quality of life might be affected. He feels I should get a transplant as soon as possible. He in fact, wants me to meet the Transplant Surgeon and begin the process right away.

Which brings me to option #2. Transplant with Plasmapheresis. Plasmapheresis is not a sure shot solution for recurrence. It may work. It may not work. No one can say for sure. It will be expensive though it can be done in Hyderabad itself. Donor will need to be figured out. But this is within reach. Yes, it will dry up a lot of my family's and my financial resources. But certainly within our reach. Unlike eculizumab.

So that is what I am thinking hard about these days.

... http://www.kamaldshah.com/2011/07/plasmapheresis-versus-eculizumab-versus.html


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Thursday, 07 July 2011 17:58

Getting more from the NxStage

Written by Steve Bone
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A year old article, but a very interesting take on the value of short daily dialysis versus longer dialysis times and prescription changes outside the NxStage guidelines. In this article Peter Laird MD discusses how he has managed to improve his spKt/V from 0.5 to over 0.9 by increasing the dialysate to 40L, the dialysate rate and also using a higher flow fraction of 45%. I use 30L, FF of 35% and I am seeing a spKt/V of 0.66 consistently – it would certainly be interesting to be able to try different prescription rates and measure the impacts on my blood results. Currently my PO4 is dropping (thankfully) but I will still keep my rate of binders up in the short term. Ultimately the proof will be in how I feel, as well as  what the blood results say – that, after all, is what affects us all on dialysis. Pity those that abuse the in centre 3 day a week dialysis by not turning up, or doing shorter hours, don’t understand the impacts of their actions. Education!

Go here to read the full piece: http://www.billpeckham.com/from_the_sharp_end_of_the/2010/02/taking-nxstage-system-one-to-the-max.html a

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... http://mydialysis.co.uk/blog/2011/07/07/getting-more-from-the-nxstage/


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Thursday, 07 July 2011 17:32

Beyond the call of service and duty

Written by Steve Bone
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With all the problems I had last night with the Opta filter ahead of the NxStage PureFlow, unsuccessfully trying to make a batch, I was on the phone at gone midnight to the clinical support from Kimal while he described how to disconnect the filter and run the machine back from the straight mains water supply. Seemed a little complex at the time, but in the warm light of day today, actually quite straightforward. Anyway, the point was, I was able to make a new batch so I could dialyse this morning. It is rare to find  the level of support I received last night, that not only ensured that I dialysed this morning as planned, but was able to work as I had a ‘stack’ of stuff to do – not practical to do on the unit when you need access to a network. So, a big thanks and a public recognition of real service and commitment.

Anyway, a visit today to inspect the installation, and all being well, when I make another batch tomorrow, it will run without a hitch – wood anybody?

I did say on an earlier post that the Opta filter was quiet – I was not hearing it when it runs when making  a batch. Annoyingly noisy would be my description. There must be a better way of constructing the pressure cylinder, pump and gauges such that they can be a lot quieter. I am going to find it quite a distraction while working, and it makes the task of making phone calls impractical. Still, I’ll stick with it for now, see how it goes. I fully understand the need for the additional filtering, so do not not object too strongly – for now! I’ll see how irritated I get! :-)

More bloods again today, so should have the results tomorrow. I am doing my first full 6 day week this week, and results seem to be stacking up, but I will be interested in the take on these by the docs when I have my clinic appointment in a couple of weeks – I’ll keep you posted. Currently hitting a 6 day Kt/V of 2.8, so seems to be good. When I check my Kt/V for 3 day dialysis on the unit, I get a result of under 2.1, so this is suggesting at the moment (results need to stabilise) that I am seeing a 33% improvement in dialysis effectiveness for 50% more hours dialysing. That might provoke some comment – of course I could be taking a too simplistic view of things. (I should add I’m delighted if I am getting much better effectiveness – after all this is about staying alive and being as healthy as possible!)

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... http://mydialysis.co.uk/blog/2011/07/07/beyond-the-call-of-service-and-duty/

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