Steve Bone

Steve Bone

Hi, I'm Steve and have been a dialysis patient on some form of self-care or other since 1990. I've dialysed at home, abroad, in hospital, oh and had a transplant for 7 years. I work in the insurance industry for a City based business, but am very fortunate to be able to work from home 4 days a week. I hope, with my experiences, I can help others on dialysis or those facing dialysis in the future! It ain't so bad! Steve

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Wednesday, 06 April 2011 16:51

The NxStage – NOT!

Well I did get to see the NxStage, got very excited about the prospect of getting  home again after 4 years, with the implied hint that this was imminent. On chatting with the guy from Kimal he had a training slot next week, so I was geared and ready to go. BUT…. I did not bank on the breakneck speed with which the NHS moves, only to be told that I can’t train next week, as there are too many operational issues on the local unit in Peterborough to cope. (not part of the plan, clearly, and also not part of the routine). So, I now have to wait nearly 3 months – YES, nearly 3 months for the planets to align and the wind to change so that I can have my training.

I suspect they forget I only need to to be trained on the machine, I don’t need hand holding for clinical care. After all, I was taught to self care 20 years ago, and dialysed alone and independently within 4 weeks of starting hemo. With everything else I am trying to get organised in my life (yes, I do have a life) getting home with the machine within 2 to 3 weeks would have been an absolute godsend, and solved huge problems. But hey….. the cogs will turn and eventually the monolith will spew out a training plan. Oh, and the best part, was, I was going to be expected to be signed off using the standard home hemo plan, which will be completely useless for the NxStage. Startling!!

So, from my tone, whilst I am still excited about the future prospect of the NxStage and home hemo again, yes I am bitter and very annoyed, I have to sit and twiddle my thumbs for best part of three months. I love the human skills deployed here…….

(This is not aimed at the messenger who had to deliver the bad news)

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Sunday, 03 April 2011 08:49

Testing prior to NxStage training

All being well, in this coming week I am going to do daily dialysis for 3 hours each day for the 1 week on a Fresenius 4008, taken pre and post bloods at each session to see the effects of dialysing on a ‘traditional’ dialysis machine in this mode, then next week when I start my training and dialysing on the NxStage I will do the same tests. At the end of the second week we will have two sets of data for direct comparison between the two ‘methods’ of dialysis. There is a general desire to see the results by the docs as well as myself to see what the outcome is.

As I understand it, this test has not been performed in the UK so far so hopefully it will prove to be really useful.

Another post while I am testing on the outcomes.

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Thursday, 31 March 2011 11:50

The NxStage arrives

Went into the dialysis unit early today to see the NxStage machine. It was set up in bag, or portable mode. First impressions, neat, simple, and, with some forethought, eminently portable.
The machine came with a Kimal guy who knew his stuff and gave me an excellent and detailed run through.
It’s certainly very easy to use, foolproof in operation, and as the machine takes no fluids internally, does not need cleaning or disinfecting, just a wipe down with a damp cloth. The blood and dialyse circuits are complete on setting up the cartridge based line set, and the circuit priming is very thorough.

We worked through the dosage required to give me a good dialysis, and as I will be dialysing while I am working, the time required is unimportant. My plan is to dialyse 6 days a week for at least 3 hours, but more likely 3.5 to get a better dialysis result overall.

I have asked that I dialyse daily on the Fresenius 4008 for at least 4 days with daily pre and post bloods to establish the effectiveness of the unit based machine, and then do daily pre and post bloods on the NxStage when training so we get a full comparison, and also understand dosage etc in advance of going home. The guys in the Peterborough unit agree and have suggested 6 days daily on the Fresenius, for 3 hours each day! All cool!

Training is planned to be 8 dialysis days and then head home straight after, subject to my competence of course!

Plumbing in is a doodle, washing machine tap for the water inbound, and a washing machine waste for the waste, or effluent as they like to call it! Two small holes in the wall and we are good to go!

Another update once I start my training!

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Monday, 21 February 2011 05:02

Arrival of the NxStage

The East Midlands renal group are to test the NxStage machine and I’m delighted to say it is coming to me. Kimal, the UK partner to NxStage and sole supplier are to install the machine in the Peterborough unit in the next 2 to 3 weeks (give or take) and I will then be trained on it along with a couple of the team who support the home hemo patients at home (or, ‘in the community’ as they like to say. (feel a bit like I might I am being released back ‘into the community’ – probably with a tag on my ankle!!)) Once trained, Kimal will then instal the machine at home, where, I am pleased to say, my landlord has given permission for me to have this installed in my office. (One up for decent landlords).

The NxStage itself though is still generally disliked and I can find only really two reasons for this. It is not as efficient at overall clearance than say the Fresenius 4008′s in use in the Peterborough unit, and other ‘grown up’ machines, but as I am going to do daily dialysis of 3 hours at a time while I work, then this becomes less of an issue as I will more than make up the inefficiency which is said to be around 12.5% less. I will be doing 50% more dialysis at 18 hours a week (6 hours more then in the unit), which counters the inefficiency of about 1.5 hours across the week).

The second issue in the argument against the machine is the way it is sold and maintained. The majority of renal areas in the UK buy machines and service/maintain them through their own teams of technicians, they can also shop around for the consumables from a variety of suppliers. Kimal lease and maintain the machines, so bypassing the local teams, not a popular move I’ll suggest. Also, consumables are only available from one source and they’re expensive. A more collaborative approach with the UK renal teams with NxStage would challenge all this and make way for the machine that solves problems for a number of UK renal patients who can’t go to home hemo as they can’t have the full blown installation. The Quanta machine will not achieve this in place of the NxStage machine in the more problematic installations as it still requires an RO. (But of course the NHS has been actively engaged in the development in the Quanta machine)

An open mind is required on the part of the renal teams and Kimal. Come on guys, bang heads!!

I’ll write posts once the machine arrives and give a first hand view of it and how it works etc.

Just a quick note on the benefits to me: dialysis at home while I work gets me back 16 hours a week dialysis on the unit and travelling time  etc (what will I do with myself?) and I get to greatly improve my dialysis clearance and overall results – all good to maintaining good health. I highly recommend it!!

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Sunday, 30 January 2011 08:15

New UK developed Dialysis Machine

Due to start clinical trials shortly with a potential for release to the market soon after in late 2011, a new UK developed dialysis machine is set to arrive. The unit developed by Quanta aims to provide a small, efficient and neat solution for those wishing to dialyse at home.
The unit, developed as a result of breakthrough work aided by the D4D co-operative and other experts, will be considerably smaller than conventional machines used in hospital, but it is being developed with a view to being as efficient.

One drawback at this stage as I see it is that it still requires a reverse osmosis water supply which adds to the equipment in the home, where the NxStage does not. But, this machine is designed to be able to operate virtually ‘on demand’ so that will prove useful to many, and given size and potential ease of use, will make home haemo a much more realistic prospect for many.
Personally, I am still waiting a simple solution that allows me to dialyse in rented accommodation so I do not have to have the works required to accommodate home haemo in a property that is not mine. I still believe that the NxStage allows that for me, so long as my dialysis consultants agree – which on recent debates suggests may not be the case.
There is a case for a varied solution on home haemo for different patients (within reasonable and economic constraints) to cater for different capabilties and facilities of the patient. As in many walks of life, a ‘one size fits all’ does not always work.
I wait with interest……

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