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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Friday, 12 August 2011 15:31

Recruiting for Home Haemodialysis

“There are approximately 21,000 patients currently receiving dialysis treatment in England. The number of patients requiring renal replacement therapy (dialysis or transplantation) is increasing at around 4% per year.

It is estimated that around one third of dialysis patients (7,000+) may choose to opt for dialysis at home. In particular NICE have previously suggested that 10 to 15% of dialysis patients may opt for home haemodialysis (whereas currently 2% do so). In theory, more than one third of patients could choose home therapies provided it was clinically appropriate for them.

Work by NHS Kidney Care on reference costs for dialysis showed the annual costs of home haemodialysis to be up to 25% less than in-centre dialysis, based on data returns from 16 units.

However, releasing savings in practice will depend on a range of factors including the set up costs, treatment regimen, and training and support needs in any individual case. As referenced by NICE, previous studies have demonstrated that initial costs of home haemodialysis are recouped within a period of approximately 14 months. ”

Now this makes very interesting reading. The fact that the potential that has been identified is so large, and with the long term costs savings as a benefit, there is clearly a need for a more focused recruitment of patients for home therapies. I’ve gone on about this before, and suggested that a more co-ordinated programme of recruitment should be developed, but certainly locally, I don’t see the relative volume of recruitment going on. In fairness, the local unit is very busy and short staffed, so most of the time it’s ‘heads down’ and crack on with the job in hand to get the patients through door. All understood and I don’t envy their daily task. BUT… there is material around that talks about the real and valuable benefits to patients and the NHS alike, but in truth, you have to rummage around on the web to find it.

How about a simplified brochure that gives guidance and answers basic questions, or a well thought through web site, that can be used to recruit new and ‘eligible’ patients? (The NHS Kidney Caresite is a good start) Give them something to read while on dialysis on their unit, and let them ask questions. Make use of, and develop more patient advocates that can talk to potential home patients so they can engage and help with the recruitment process, nothing better than a chat with somebody who’s been there, done it and got the t-shirt!

Overall, and above all, widen and raise the volume of the debate, information, benefits and more. With the advent of smaller and easier to manage dialysis machines, the opportunities to recruit are increasing.

Here’s some useful links:

NHS Kidney Care
NHS Kidney Care Matters
Improving choice for Kidney Patients – a report produced in February 2010

Then there is the less than useful view:

NICE press release about patient choice for dialysis treatment – 27th July 2011 – very focused on how much money can be saved by promoting PD more strongly –  The document is supposed to be about choice? Could do with an equally weighted document about the benefits of home haemo!

... http://mydialysis.co.uk/blog/2011/08/12/recruiting-for-home-haemodialysis/

Saturday, 06 August 2011 11:48

NxStage – it’s working

After all the issues of the past few weeks, without hopefully tempting fate, I am pleased to say the NxStage, PureFlow, filters and all the supplies are working well. So, despite ranting a fair bit recently, and getting really fed up with the whole thing (not like me, really), it has all come good.

I note from my blood results there is a definite difference in my results achieved between shorter faster dialysis vs slower, longer sessions. The dialysate remains the same, as does the flow fraction, but the results are clearly better for middle molecules like phosphates on the longer sessions. I have done faster dialysis in the past week, and my phosphate result is going up again! Need to get to do slower sessions. My boys have been on holiday so I am dialysing while they are with me, so tend to try and finish as quickly as possible as I am nervous leaving them to their own devices while I am dialysing. We have struck an agreement in that they will play on their Playstations while I am dialysing, and come off when I do! Keeps them gainfully occupied doing something they enjoy, and gives me a bit of peace of mind, albeit not total.

I’m still working while on dialysis and have found it to work well for me. I get a lot done in the 3.5 to 4 hours I am on, and I feel I am being more productive. It’s not so easy to get up and make a cup of tea etc when dialysing so have to stay in the chair working! My clients are potentially getting better value for money!

This week I have my first clinic appointment since restarting home hemo again. It will be an interesting discussion and I’m looking forward to it.

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... http://mydialysis.co.uk/blog/2011/08/06/nxstage-its-working/

Saturday, 23 July 2011 12:54

Nx Stage at Home -Progress

Had some more problems, this time with the cartridges (the lines and dialyser) where they fail priming at the same stage every time. It happened to four cartridges from the same batch (out of about 27 used so far). However, Kimal are on to this and have sent me some cartridges from a different batch – and so far, so good. My blood results last week very greatly improved, no I am going to see what they are like this week. I’ll be doing my next bloods, probably on Tuesday and I would love to see some consistency. To date the results have been erratic, but like all things, stick with it and allow things to develop. I am using slower pump speeds, and hence longer sessions to ensure I hit the middle molecule(MM)  clearance, e.g. PO4 (phosphate). At the moment I am looking for the balance between phosphate, calcium, and the impact on PTH (parathormone). My PTH has come down, but it still has a way to go.

The suggestion from Kimal is to reduce the Flow Fraction from my set 35, to say 32/33, so to saturate the dialysate more, and by increasing the time dialysed, so improve the MM removal that way.

So, to Flow Fraction. Let me have a go at this.

Flow fraction (FF) defines level of dialysate saturation, a key component of the way the NXStage works, divided by the blood flow rate.

Flow fraction is the ratio of effluent flow divided by blood flow rate. The Effluent is the spent dilaysate plus the UF (ultrafiltration). I am on dialysis at the moment and taking off 2 litres and so this is what is added to the spent dialysate, over a period of 3 hours on today’s session. Once the UF finishes, then the effluent is just composed of spent dialysate, so the Flow Fraction reduces – so it needs to be increased back to the prescription rate, and so shortens the final stage of dialysis. Keeping up?

So, I’ll have a go at expressing that in one line:

FF = (Spent dialysate + UF)/Blood flow rate

There is a fancy formula for working this out a bit more precisely, so if you are interested, let me know.

The longer the dwell time of dialysate in the dialyser, the better the absorption of waste/toxins etc. Better use is made of the dialsyate, and overall the system uses way less water – made this point in an earlier blog post. So for any treatment I am using 30 litres of water, give or take, against in excess of 200+ for a conventional machine. When I last dialysed at home, using a Gambro, my water bills were horrendous, and I was dialysing every other day. Imagine daily! Hmmm, best not!

The key to NxStage is better utilisation of the dialysate, mimicking the way that PD works. It’s, on the face of it, a logical idea, but then armed with hindsight, we can all be scientists! Odd nobody went down this route before. Still, all part of the developing works of dialysis treatment. Long may it continue!

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... http://mydialysis.co.uk/blog/2011/07/23/nx-stage-at-home-progress/

Friday, 15 July 2011 12:53

NxStage nix-stage

Have you heard about the rebranding of the NxStage machine to nix-stage – apparently in light of the fact that is the amount of dialysis I will be doing over the weekend on this machine here – NIX!

I had the drama of having to change out the control unit in the middle of the night earlier this week, finally getting to bed at just after 4am after the new unit arrived by courier at 2:30am.

Now this one has failed, as it will not pass conductivity test – the unit had been returned ‘to stock’ from the Portsmouth renal unit, and when I got it (‘tested’ according to the associated fault paperwork! [unbelievable] ) it told me it needed servicing in two days otherwise it would stop working. I was sent a ‘service kit’ but the machine failed on 4 occasions. Maybe that’s why Portsmouth sent it back – go figure!

So I can either have another control unit delivered and be up till all hours again, or I can wait till Monday. I did ask that somebody be sent out to fit the unit – but it’s a weekend and nobody works. I won’t now repeat my true thoughts on that subject – blog will get banned for blasphemy!

Well, tomorrow afternoon/evening I will be dialysing back on the unit in Peterborough. (Progress eh!) I’ve been home with the NxStage for less than 3 weeks and it has been a catalogue of faults and problems. Not at all impressive.

So, the machine (and Kimal, and NxStage) are on notice, this machine will be on the street in very short order if it fails again after the fix they will now do for me (with an engineer it seems) on Monday. I did try to speak to Mark Pettitt, Managing Director of Kimal, or Alan Press the CEO – but no surprise, nobody knows their numbers and once we hit the magic 5:15pm – all lines to Kimal are met with “we are now closed”. And Leicester are no better – I phoned to speak to the Renal techs, and there was no answer, just a blank line – and I did not relish calling back again given I would need to listen to inane drivel about how clean Leicester hospitals are and that you stand less chance of getting an infection. (LESS? Surely it should be NONE!) (oh, and of course, how important my call is to them……).

So tonight I am being a grumpy old bugger, but given what I have had to put up with in the past couple of weeks with NIXSTAGE, then I feel justified!!

Off for a drive on the motorway so I can have a go at somebody driving in the middle lane, on the phone, smoking a fag…… (quite a few in Peterborough)

UPDATE: 19:05 Friday evening

The specialist nurse who does the training and is on-call for help is now going to be with me at 7am on Monday to get things moving. Does he do everything? Hope he gets a substantial pay rise this year! A leaf could be taken from his book and emulated elsewhere.

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... http://mydialysis.co.uk/blog/2011/07/15/nxstage-nix-stage/

Wednesday, 13 July 2011 16:11

NxStage – Making a batch

This post is not quite what it seems from the title, Making a batch of dialysate is a simple enough process.

The Opta filter that is placed on the inbound water supply and attached to the back of the PureFlow cabinet, generally requires a pump and pressure cylinder to ensure that sufficient water pressure is available to drive the water through the filters and then into the PureFlow to enable the batch to be made. Sensible and logical process. However the noise generated by this Opta kit is virtually unbearable especially when you are working in the room the NxStage is in. The bulk of the noise comes from pressure gauges that oscillate wildly when the pump is running to build the pressure. Once operating pressure is reached, the pump cuts out and the gauge oscillation stops, and peace is restored. However, given  that the pump cuts in about every 60 seconds or so, then the outcome with noise/disturbance is not really acceptable.

On discussion with the Kimal guys they suggested that if the main pressure was sufficient, I may be able to turn off the pump – tried that, pressure dropped to 40psi, but this is more than enough to drive the PureFLow, so I am in business, but a lot quieter.

My thoughts on this are – should not the mains pressure be checked on installation to see if there is sufficient to drive the system, so saving on a pump installation etc, and surely there must be a quieter method of checking pressure than these wild gauges? If I had to rely on the pump, I would have a serious problem with the installtion as it makes working alongside the machine extremely difficult and annoying. This should be designed better to suit a domestic installation.

Anyway, it’s all academic now as the PureFlow control unit has died on me this evening – no light, nothing. I need to make a batch this evening to dialyse tomorrow morning – I can’t dialyse later in the evening as I have my young boys after school, and I can’t be dialysing while they are here as they are under age to be unsupervised, and in the event something happened to one of them while I am on dialysis, then I am unable to react quickly as I would need to come off first.

I accept that machines can fail, but the various issues I am now facing with this machine are affecting my day to day life, and now time with my family. I’ll persevere as I want the potential benefits, but my fuse is shortening.

So all doom and gloom it seems, BUT, on the point of service and fixing problems, Kimal are getting a new control unit to me tonight, arriving by TNT about 2:30am, so I can install the new one and get things moving again. So, despite the adversity, the quality of back up service leaves most businesses standing!

On the issue of benefits, I am disappointed with my blood results, but I will keep working at this over the next 2 to 3 weeks when I have my next clinic appointment and I can discuss with the doc whether this is a viable treatment, or whether changes can be made to make it so. Hopefully my results will improve. Only done one lot of six days so far – need some consistency.

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... http://mydialysis.co.uk/blog/2011/07/13/nxstage-making-a-batch/

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