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.

Tags: Charity, London Bridges Walk

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 while on dialysis with the NxStage

Easy to work with the lines across me

And so to the cup of tea!!

Nice BIG cup of tea on dialysis

Tags: daily dialysis, Home Dialysis, NxStage, self-care, Steve Bone

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!

Tags: Charity, kidney research, London Bridges Walk

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!)

Tags: dialysis, Kt/V vs URR, NxStage, Opta filter, PureFlow, self-care

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

Tags: daily dialysis, Flow Fraction, NxStage, spKt/V