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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Sunday, 17 June 2012 05:50

The NxStage experience on holiday

The first holiday with the NxStage in-tow is now over. I took the machine with me to the North Norfolk coast,and set up, and all went very well. Travel logistics worked out ok , getting the machine, supplies and two boys into the car, and once arrived, we were able to quickly unpack. The machine weighs 35Kg, so it helps to have some body to help with the lifting, otherwise, the general movement of the machine is easy as the case is on travel wheels.

Setting up was ok, although there a was a minor issue with the sixth bag of dialysate. The dialysate plate warmer and the pole to hang the bags only accommodate 5 bags, but some patience and experimentation I was able to accommodate the sixth bag and have it connected for use, ready to go.

The travel system works well, one bag is placed on the warmer to ensure dialysate is at body temperature, and the additional bags then feed this warmed bag, so once connected there is no additional ‘fiddling’ to connect bags etc. I did find that the sixth bag I had, if I laid it on a chair beside the machine, clamps open, then filled from the hanging bags (logically) and so became bloated with dialysate, but this is remedied by leaving this bag clamped shut, until the other 4 hanging bags have all but drained, then all I had to do was hang the final bag and open the clamp.

The drain tube is 20 feet long so plenty available to get it to the nearest sink to drain the waste.

The one item to pay special care to though is what you place the machine on when dialysing. The machine plus 5 bags of dialysate in situ, weighs over 60kg, so the table or whatever you use has to be sturdy and stable. In the place I was staying there was a coffee table that served the purpose, and so long as I ensured the whole assembly of machine and bags was balanced centrally, it was safe.

It’s fair to say that when you lay out your supplies ready to go on, your routine layout may not be possible as you will use whatever space you have available, so paying attention to where everything is, and ensuring you have laid everything out in advance and checked this, you will be ok and ensure you get on safely.

This was my first run with the ‘mobile’ set up, and am pleased it worked well, save for the fear of power cuts locally due to the ongoing unseasonal cold, wet and windy weather! Lose the power, lose the circuit! (about 250ml of blood).

My next holiday is for two weeks, and save for the issue of transporting supplies, which I think I have resolved, then I feel very confident about the ability to dialyse ‘on demand’ throughout the holiday.

So, if you have a NxStage, and have not yet tried it on holiday – give it go, if you have a the plate warmer and dialysate supplies, you can get away pretty much when you want to.

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Sunday, 20 May 2012 12:30

Pending Holiday with NxStage

Not long before I head off with the NxStage and a ‘stack’ of supplies for my first holiday away with the machine in portable mode.

I had the quick training on assembling the stand and use of the dialysate bags last week, and it’s all very well structured and easy to do, so quite looking forward to trying it out. I have to say that given the simplicity of it all, it encourages me to travel further afield and try the machine in other countries. For travel in the UK, the NHS district have a ‘soft’ case I can use for transporting the machine, but for air travel etc, the machine can go in the aircraft hold in a more robust metalised case.

Set up of the machine for a session whilst away is very easy, and only requires a drain point for the waste – a handy sink will suffice. The drain lines are 20 feet long and you can chain more than one together if you need to reach further to that drain point.

Taking the dialysate with you for the sessions whilst away is a reasonable bulk, I use 30 litres of dialysate per session, so that’s 6 x 5 litre bags (per session). I have a Land Rover with plenty of space, so not an issue for the two holidays planned in the UK, but for foreign travel or for more sessions on a longer holiday, having Kimal deliver the supplies will be a huge bonus – and they can do this for many countries, so there is very little to limit travelling with the machine, and save having to find dialysis facilities locally wherever you go.

I normally dialyse daily for 4 hours per session, but for the two holidays away on this occasion I am going to revert to every other day, and see how I get on – enabling me to spend more time doing things and seeing the sights with my boys!

So, if you like to travel and want to ease the process, looks like the NxStage is an answer, and I note from the number of units now present on Global Dialysis, just one of many options!! I quite fancy Bali, haven’t been back since I’ve been dialysing this time around, and a nice new facility in Nusa Dua!! Next year maybe! (or maybe take the NxStage!)

I’ll report on how the dialysing away goes!

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Tuesday, 31 January 2012 18:34

Going on holiday with the NxStage

Things are moving at a reasonable pace now. The Leicester Renal team have now acquired some dialysate bag warming plates for use with the NxStage, so come June, I will be off for a few days to try out the NxStage on holiday. I can have the supplies delivered to my holiday destination but I have room in my Land Rover to load up machine and supplies, so will fill the vehicle, find space for my two boys, and head off for some relaxation. Not going far on this occasion, juts a couple of hours drive away, to the coast, so if anything backfires, I can be back home in short order.

This is all really a pre-emptive move to try something more ambitious, but on this occasion, it allows me to be comfortable using the machine away from home, and also get to grips with the logistics of equipment, dialysis and kids! As I am self caring with no carer, it’s a test not just for me but for my boys too.

So, have NxStage, will travel.

I have read about many of the exploits of dialysis patients in the US getting out and about in camper vans and all sorts with their NxStage machines, and they have done a great job of setting the scene  and inspiring others to have a go.

I’ve holidayed abroad before, using a local dialysis unit, but this is the first time I will  be away solo!!

Now that the warming plates have arrived, others in the area have had training on their use, and are off on their holidays. Be good to read about their experiences when they get back. And, with the local authority getting behind extended distribution of NxStage use in the home, more to join in on this freedom soon.

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Tuesday, 20 December 2011 09:57

Time discrepancies on NxStage

I’ve found it interesting, but not annoying, that the timers on the NxStage are not particularly accurate. When I go for a 4 hour session, the time at coming off is around 3hours 45 mins, due to difference between UF time and straight dialysis, and that makes sense, yet the physical time I am on dialysis is over 4 hours (by a separate clock).

As I am expecting to be on the machine for 4 hours this is not an big issue, but does raise the issue of accuracy of the rest of the machine. I suspect this is a minor issue about timers. However, it does tie in with the UF selected being exceeded by, in some case, half a kilo per session.

This has been raised on the NxStageUsers blog before now, and seems to be a common problem with many types of  dialysis machines, as I have found this on the NxStage, Fresenius (various models), Braun and Gambro. I does require the user, especially if like me, you are on your own without a carer, to be extra vigilant not to dry out too much and become hypotensive.

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Saturday, 12 November 2011 08:25

300 Series PAK

I have started to use the 301 PAKs. Seem to be of a better construction and lines are slightly different and more flexible. Set up on the PureFlow to accept the new PAK type was easy enough – although why it has to be changed I don’t quite understand, as the fluid/concentrate is the same composition.

All working ok.



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