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 July 2011 17:44

NxStage hiccup!

All been good so far, and been dialysing without major incident. Had a few new alarms to deal with on the cycler (the dialysis machine itself) but they were easily solved as the guides are very thorough for troubleshooting. Then, yesterday, a new Opta filter and pump were fitted behind the machine. Not the neatest installation for the home, but no big issue. All was well, nice and quiet – until I went to make a batch of dialysate – then the noise of the pressure gauges and other associated machinery kicked in – quite distracting when I am working. Then, the PureFlow (the bit that makes and holds the dialysate) started to alarm as the pressure was low. Alarmed several times now, so making  a batch tonight could be an issue. I understand from the guys at Kimal that there are a couple of possible causes (and remedies), and I suspect this is all part of the settling in and ‘fine tuning’ for the new installation. Just a bit surprised the engineer who installed the filter did not check the pressure.

Anyway, we’ll see how things pan out tonight, although I was planning on sleeping – but if  the system keeps alarming, sleep may be disturbed. The Opta kit is essential hardware as the water quality is poor here and very hard, and it’s essential to pre-filter to ensure the PAK in the PureFlow (the purifier) does not exhaust too fast.

There goes that damned noise again – about every 3 minutes! Hmmmm! My youngest son sleeps directly above my office where the machine is – hope he’s a heavy sleeper!

By the way, if you are new to NxStage – there is a range of new terminology which I’ll clarify as I go along (assuming I understand it correctly!! )

By the way, I have come to the conclusion that the guys at NxStage are all poets! PAK and SAK, Snap and Tap, Line and Prime (almost), Shake and vac……. (made that one up from an old TV advert from the 70s and 80s)

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Saturday, 02 July 2011 07:36

Dialysing on NxStage

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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Thursday, 30 June 2011 08:53

NxStage Training Complete

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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Saturday, 25 June 2011 14:00

NxStage Installed

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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Wednesday, 22 June 2011 16:18

NxStage training starts

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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