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Saturday, 02 July 2011 07:36

Dialysing on NxStage

Written by Steve Bone
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I am on dialysis on the NxStage at the moment. All goes well, set up was straightforward, and I see the real value of the 1/2 hourly observations. On the main unit when dialysing  the observations are taken at the start of the session and then about half way through, so doing half hourly observations here seemed excessive. But on reflection, as I am dialysing on my own with no carer, the half hour check is a good discipline, it adds a good check factor over and above my own ‘self-check’ of how I feel etc.

As I am working while I am dialysing then  I am sitting up in on an office chair. The lines run across my desk to my left hand (machine to my left) and I am able to work normally and type with both hands despite having the lines taped through my left hand between thumb and forefinger. Works well for me. The temptation os to always work while dialysing now, which is absolutely fine during the week when I expect to be working, but on a Saturday (my day off) I carry on working – but I can sit back and read or watch TV on my PC, so I need to be better disciplined to not just work all the time!

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... http://mydialysis.co.uk/blog/2011/07/02/dialysing-on-nxstage/

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Friday, 01 July 2011 20:42

In search of the perfect bhindi fry

Written by Kamal Shah
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I used to hate bhindi (ladies finger, okra). When I was a kid, I used to absolutely detest meals at home that included bhindi. The thickness of the outer part with all those gross seeds inside never appealed to my imagination.

I found many people like me. However, there were also some people who would swear by the bhindi. My dad's elder brother, for example, loved it and in an amazing manifestation of the genetic theory, his son did too. I never understood that part of them though.

As I realized over the years, there were no fence sitters when it came to the bhindi. You either loved the vegetable or you hated it.

In Effigent, we had a lot of young developers who were of, as they call it, 'marriageable age'! In their mid-twenties. As it happened, one by one, they would get married. A lot of them were Telugus. So, we would go for their weddings and receptions. Madhavi was one of the earlier ones among this lot.

Now, you might be wondering what Madhavi's wedding has to do with the bhindi? Bear with me for a bit, dear reader!

So, at Madhavi's wedding there was quite a huge spread. There were hot dosas being made at one side. There was the Dahi Wada, the regular puri, some nice sweets and - you guessed it - the bhindi. At first, instinctively, I passed. When my colleagues and I gathered in one area of the dining hall, plates in hand, making our way through the food, one of them remarked how great the bhindi fry was.

"Yeah, right!" I remarked. How can anything remotely got to do with the bhindi be great? He said I should try it. At first I was very hesitant. All the years of hating the vegetable made it difficult to give in. At this point another colleague joined in. "Even I hate bhindi but the bhindi fry is something else!"

That was it. I had to try it. So I went over to the buffet table and took some rice, some sambar and a little bhindi fry. The vegetable had been cut to small circular bits and deep fried and then some masalas added. They were garnished with curry leaves, fried cashews and peanuts.

I put a little vegetable with rice in my mouth. It was really excellent! It was almost as if the entire evil inside the bhindi was exorcised by deep frying it! I went back for more.

Ever since, I have been an ardent bhindi fry fan. I still haven't made my peace with the plain vegetable. The bhindi fry, however, is 'something else'!


... http://www.kamaldshah.com/2011/07/in-search-of-perfect-bhindi-fry.html

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Thursday, 30 June 2011 08:53

NxStage Training Complete

Written by Steve Bone
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Well, that’s it, 4 days training on the unit, machine installed on day 5, and four more days ‘with care’ and guidance in my office, and now I’m flying solo! I’ve pleased with the way the training has gone, very thorough and informative. The last three days I’ve been left to my own devices to get on and off etc, and have had an ‘opportunity’ to test a few alarms (mainly because I made a mistake!). Very easy to rectify. One thing I am still nervous about is trapping the air in the system if you get an arterial air detection. The advice is to run the pump at normal rates until the air is seen in the top of the dialyser. My natural inclination is to run the pump at a slower speed for this action to ensure I capture the air correctly – even though any air would then get detected by the venous sensor en-route. Other than that, all is well and I am very pleased to be able to crack on with life, working while I dialyse.

Thankfully, I have never felt bad or tired on or after dialysis, but have noticed that if I go two days break after doing daily dialysis, then I feel ready to dialyse again. To add to that I notice when I get up in the morning I feel brighter and more energised. So, probably right to say I had become acclimatised to how I felt and thought everything was normal. Don’t mind being proved wrong on this!!

It would be easy to get carried away by the euphoria of finally getting back home again on hemo, but I am confident in saying that the support from NxStage, Kimal and Peterborough Unit (without naming names) has been excellent. Nothing has been too much trouble, and the feeling of ongoing support is  very strong. Top Notch!

On the issue of working while dialysing, I am working at a great rate, getting lots done, concentration is good, and it’s all very straightforward, the lines are long enough,  and everything is to hand – I can quite recommend it if you work from home. Trips into London etc for meetings are easily accommodated, and I have great flexibility around time of day to dialyse etc.

There will be pictures, soon, apparently. Not by me, but a budding David Bailey on the training ‘team’!

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... http://mydialysis.co.uk/blog/2011/06/30/nxstage-training-complete/

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In the context of dialysis and clearance of toxins, molecules such as Creatinine, Urea and Potassium are easy to clear because they are fairly small and pass easily through the membrane of the dialyzer or the artificial kidney. However, there are some bigger molecules such as Beta 2 Microglobulin. These molecules are very difficult to remove since they do not pass through the dialyzer membrane. It is important that these molecules be removed since they are also, after all, toxins and are harmful for the body.

There has been some discussion about how longer duration, more frequent dialysis removes the middle molecules more efficiently than the conventional modalities. I fail to understand how though.

Let's say you drill a hole in a wall about the size of a marble. Now, take a football and hit it against the hole. Will it go through? Obviously not! Now try again and again for a few hours. Will it make any difference? Obviously not!

This is very similar to the middle molecule scenario. The middle molecules simply cannot pass through the membranes of the regular dialyzers because the pore size is not big enough. The duration of dialysis cannot influence the result. Neither can the frequency. So, for a change, you have longer, more frequent dialysis as ineffective at achieving clearance of middle molecules as conventional dialysis.

How can we then clear middle molecules effectively?

High flux dialyzers. These dialyzers have bigger pore sizes and are the only way middle molecules can be cleared. Again, you will need more frequent, longer duration dialysis to be able to do this effectively. But high flux dialyzers really are the key.

This was also demonstrated in a study conducted in Australia outlined in this paper.

... http://www.kamaldshah.com/2011/06/so-what-really-are-facts-about.html

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Saturday, 25 June 2011 14:00

NxStage Installed

Written by Steve Bone
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Well, I’ve had 4 days training on the unit and the machine was installed yesterday. Sits in my office perfectly and was installed in a very short time. I primed the first PAK so that I can make my first batch of dialysate on Sunday ready for dialysis on Monday morning. Then I can set to work on working and dialysing at the same time. Achieved pump speed of 500 with good pressures yesterday, and total dialysis time was 3 hours and 8 minutes. Blood results are good. Phosphates are down and within limits, and calcium is ok, so I’ll be interested to see my PTH next week. AlkalinePhosphatase was up a bit on the second set of bloods, so this is the one to watch to be sure bone disease issues are not setting in. Bicarb is a bit low so Kimal are changing my prescription to a 45 lactate from a 40. It’s worth pointing out that Kimal have been very quick to respond to any issues, large or small so far, so top marks so far! Supplies are nearly all here although a few small items were missing such as plasters, and the tape that Kimal supply is the nasty 1/2″ thin paper rather than  the wider paper tape. They sent plastic aprons too, so I believe I might look quite fetching in one of those. I think it’s just a case on thinking through a lone dialysis patient with no carer, so some of the supplies are unnecessary – no big deal and easily resolved. I am going to investigate setting up a NxStage user group for the UK as there does not appear to be one – if there is then apologies anybody involved! Can’t find anything on Google, so seems a logical next step.

This is a good time to thank the guys at Peterborough for everything they have done to get things sorted after all the issues caused by others in the last couple of weeks. They have been brilliant, and I hope they get the recognition they deserve.

See the images below, one of the machine in my office, and the other showing the minimal intrusion on the home – this is the only ‘building works’ carried out apart from a bit of plumbing in the utility room. Neat huh?

NxStage Installed

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... http://mydialysis.co.uk/blog/2011/06/25/nxstage-installed/

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About two months ago I saw an article in our local Dialysis and Transplant Magazine,Shoestring, about Ros and Charlie, who had installed a dialysis machine in their caravan, so they could travel the country.  Wow, I thought, what a great idea!  But what about all those things we take for granted in our unit or at home: support, water quality, cleaning, dealing with the consumables, etc?

Luckily, Ros dialyses now and then at our unit, so I jumped at the chance to ask her to write a guest post all about setting up and touring in her dialysis caravan. She gracefully agreed, and here it is.

I have a long history of renal disease, and after my transplant failed, I was again on dialysis. This time although on the transplant list for another kidney, I am very difficult to match up and had to accept that my life may only continue with dialysis.

Consequently over the years of dialysing I have become actively involved in the renal community, being involved with the kidney health consumer committee, several government committees and the Dialysis and Transplant Association (DATA). This is a volunteer-run organization that has two very nice, very affordable holiday homes in holiday spots, Rosebud, by the beach, and Yarrawonga, on the Murray River.  Both houses are equipped with dialysis machines and both the local hospitals have a holiday chair to cater for the holiday maker.

The most frustrating aspect of holidaying is finding a dialysis unit that can fit you in for a holiday. For myself I have managed to have a number of holidays, not only in the DATA homes, but at Myrtleford, Orbost, Sale, Dubbo, Lorne and Darwin.  It is a matter of ringing the dialysis units and hoping there is a dialysis spot at the time that suits. I then started hearing about people who had put dialysis machines into caravans, making it easier to holiday. So I am by far not the first to do this.

Prior to dialysing, my husband Charlie and I travelled the land, and loved to camp, mainly in the high country.  With my eyesight deteriorating I was determined we would travel again.  We took some time to choose our caravan (we went to a few caravan shows to work out exactly what we wanted).  We decided that we really wanted to be able to visit out-of-the-way places, such as the high country again, so we chose an “off road” caravan – the Topaz made by Tracktrailer.

Once we found the caravan, we asked Tony (head technician of Austin Renal Unit) to take a look at it and see where we could fit a dialysis machine.  Being a small caravan, we decided to turn the double bed into two single beds and have the machine in the middle at the front for better weight distribution.

My Machine Nestled Inconspicuously Inside Caravan.

It was relatively easy to turn the bed into two singles, because there was storage under the bed where it was cut down to size.  Charlie did this over several weekends, and being a good handyman had no problems with it.

Our next step was to get a machine.  Luckily, the Austin Renal Unit was upgrading their dialysis machines and sending the old ones to Chile.

The Reverse Osmosis System in place.

The tecs kept one back and cut the wheels and base off so it would fit into the van better.  Their main concern was the water quality in the places we intended to visit, so to ensure it would do the job, they took lots of measurements of both the machine and the Reverse Osmosis (RO) water purification system.  They gave us a testing kit to ensure that there was not much chlorine in the water after it had been through the filters.  Apparently this is an indication that there is a lot of bacteria which is being treated with chlorine.

These filters filter the local water supply before it goes to the machine.

They also fitted a much longer filter to ensure that the chlorine was filtered out.

Charlie had an old steel roof rack that he cut up and made frames to fit the machine into, to help keep it stable. The RO was put into an outside cupboard and water lines, power lines were run under the caravan and through a small hole in the floor.  This took another couple of weekends, as Charlie was working and only had weekends to do it.

All ready to go!

After a couple of months preparation, our travelling machine was ready for a test run or two.  It is certainly an advantage that I normally dialyse at home, as there is very little change to the normal dialysis procedure.  I normally dialyse overnight every second night at home, and I do the same on the road.

Our first run in the caravan was in our carport at home, and it went well.  We then graduated and I dialysed at my parent’s house who live in Mansfield (about 180 km – 110 miles away). That went well too.

Ultimate objective achieved!

Our plan was then to visit Mildura and Broken Hill, a round trip of about 1,700 km or 1,000 miles. We spent 4 days in Mildura and a week in Broken Hill, staying in caravan parks.  Both parks were happy for us to use lots of water to dialyse, and both water supplies tested well for dialysing.

In regard to preparation before a trip, because the machine gets used intermittently, we ensure it gets disinfected before we set off.  Bedsides this, there is no extra maintenance required.  Regarding consumables, for short trips, we fill the back of the Landcruiser.  When we plan big trips we arrange for the consumables to be delivered to the nearest unit and just carry enough to get us to where we are going.

After use, we double-bag our consumables and put them in the rubbish bin, just like we do at home.

I like to drop into Units along the way, to make sure that everyone knows about DATA and their holiday homes, and how easy and cheap it is to take a holiday.

When we go on a long trip I may also drop into country dialysis units along the way if there is a slot available.  This helps spread the workload and also to extend the length of the trip.

I would like to thank Greg for asking me to write about our experience setting up the dialysis machine and our holiday.  Our first long trip was a great success.  It has given us the freedom to travel when and where we like.  And we have only just begun.  Roslyn.

... http://bigdandme.wordpress.com/2011/06/24/taking-your-dialysis-machine-with-you-on-the-road/

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Thursday, 23 June 2011 09:40

Porphyria Cutanae Tarda?

Written by Kamal Shah
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Well, that's what they suspect my recent skin condition to be!

My skin has become increasingly brittle. It cuts very easily. Barely do I scrape against a wall and my skin gets cut. I also get small blisters on my hands and feet from time to time. Yuck!

So, I showed them to my nephrologist and he asked me to see a dermatologist. The dermatologist carefully examined my hands and suspected that this could be Porphyria Cutanae Tarda, a condition commonly found among people with long term kidney disease.

I have been asked to get tested for the presence of Uroporphyrins which will confirm this diagnosis. The problem is this test is done in very few places in India. I am trying to see if I can get it done at AIIMS, New Delhi.

If the diagnosis is confirmed, then I might be put on Chloroquin, the drug used in Malaria. Wikipedia says with Chloroquin the condition usually settles in 6-12 months.

Well, whatever it is, at least I have a condition that has a fancy sounding name! Kinda cool, you know - Porphyria Cutanae Tarda! Heck, there is even a song by that name - see the second song in this album!

... http://www.kamaldshah.com/2011/06/porphyria-cutanae-tarda.html

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Wednesday, 22 June 2011 16:18

NxStage training starts

Written by Steve Bone
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Well, I’ve had two days of training so far, and very impressed am I! Impressed how simple and straightforward the machine is to use, impressed with the trainer from NxStage in the States, and impressed I can get excellent flows, and dialysis treatment time looks to be closer to 3 hours 10 minutes per day rather than 3 hours 40 I was happy to accept. Of course the outcomes of the blood results will be the decision maker here, and I should have the first set of results tomorrow. For example, though, I can process 95 litres of blood in 3 hours 10, whereas for four hours on a Fresenius I would manage the same or marginally more – I have been generally aiming for 100 litres in the past on the 4008H. I can achieve a good pump speed of 490/500 which is a helping factor here. Also, interesting to discuss the need to be ‘wet’ when going on as dialysing dry is less effective – bring on those cups of tea!!

I am training alongside one of the experienced nurses in Peterborough and I believe she is also quite impressed with the machine. The bigger issue for Peterborough is that she will have gained this new expertise but there are no new patients ‘in the wings’ that she can train next, so it will be difficult for her to retain all this great new knowledge. It would be great for her to have more to train up next. In the NHS areas where they are taking more NxStage machines then their trainers will keep up to speed as they will have a ‘regular supply’ of new patients to keep developing. Pity really, I could be slightly biased here, but I have a strong belief that actually this machine could solve home hemo issues for a good number of people, and development of a concerted programme to identify those that this would suit, would be invaluable. I am am hoping that a positive experience on this machine will promote that thinking in Leicester/Peterborough.

In the meantime, tomorrow I get full hands on for the first time and I am looking forward to that, right through from starting up, lining, priming etc, to the wrap at the end. I had a go at making a batch of dialysate this afternoon and that was straightforward.

The best part – The machine is being installed at home this Friday and I will do my first home hemo session in over 4 years on Monday – finally! Now, for me, that is definitely a great result!

More tomorrow – oh, and if you have the answer on how to squeeze me, a senior nurse, a Kimal account manager, a NxStage trainer, a technician and a new NxStage machine in my office in a spare floor area of about 16sq ft, then please send your answers on a postcard to…….. (may consult Dr Who for some space/time guidance….)

(Interestingly, Portsmouth, where I trained to self care some 20 years ago, is a leader on NxStage and has 9 machines in use and more on the way! Play up Pompey!)

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... http://mydialysis.co.uk/blog/2011/06/22/nxstage-training-starts/

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Sunday, 19 June 2011 21:43

Who will protect the right of a child to live?

Written by Kamal Shah
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I met Dr. Sidharth Sethi, Pediatric Nephrologist from Delhi over dinner a couple of days back. We discussed a lot of things including HUS. HUS being a predominantly pediatric disease, Pediatric Nephrologists have a lot of experience in its management.

As we walked out of the restaurant, we were chatting about different things. In some context Dr. Sethi said, "Many parents feel it is better to get another child than get a transplant for their child with renal failure."

To be very honest, I did not understand the statement for a whole minute. Dr. Sethi went on to something else. I wasn't focussing. I was trying to make sense of that statement. What had getting another child got to do with the first one? Only after a while did I understand what that meant!

I felt really horrible. How could that be?

I thought hard about this later. Parents would think about the effort and the money that would be required for a transplant. They would factor in the chances of success of a transplant. If (or when?) the transplant failed, the effort and the money for possibly a life on dialysis. They would then figure that it is easier to get another child. This child would then be left to die.

Can you blame the parents for this? Yes and no. Yes, because you feel how can anyone be so cruel to let their own child die when they can make it live? No, because in a country like ours, when most people pay all medical expenses out of pocket, most people would find it difficult to spend money on kidney disease which has no cure. It is a lifelong drain of a family's resources. Add to that the effort of looking after such a child. Some people also say that why let the child suffer? What kind of a life will the child have?

Then for a moment, think about what the child would choose given a choice and assuming an ability to think and communicate. Wouldn't the primordial desire to live overpower every other rational argument in death's favor?

And then for a moment, put an adult in its place. The parents in the child's place maybe. Would the other spouse think that way? Let him or her die. I can always get another spouse! Would that happen?

There are no clear answers to these issues. One thing comes across however. India needs a better medical system. And no, this time, the population is not an excuse. Andhra Pradesh has shown the way. Thousands of lives have been saved. Aarogyasri must be replicated nation wide. There is simply no choice in the matter.

... http://www.kamaldshah.com/2011/06/who-will-protect-right-of-child-to-live.html

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