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!
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.
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.
Tinzaparin Shortage
There is a shortage of Tinzaparin, potentially for the next 3 months so make sure you have enough stock to last you. I suspect if the units run out they can revert to pump heparin – not an option with NxStage. Check with your renal pharmacy on supplies for you. Kimal have no stocks and the units are affected also on their supplies.
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.
New PureFlow Saks
I received a set of instructions through the post today for the new Saks for the Pureflow. They seem to have dealt with some issues in the new design of connections etc, so good to see that the work continues to constantly review and improve. How about the next improvement to reduce the batch creation time? 
The Saks apparently arrived at Kimal this week, but the plan is to use up the supplies of current Saks before making the settings changes to the PureFlow and making use of the new ones. This only applies to PureFlow machines running PureFlow SL software release 1.13 or higher. The new ones are designated 300 series.
Chugging along
Been a while since I posted to the blog – work has been ‘voluminous’ to say the least, but taking a few days off. The NxStage (where’s the wood to touch?) has been behaving – but then the machine always seemed to – it’s been the PureFlow that was the issue, in the main. But that too has behaved – still high usage of Paks, but that aside, all good.
My blood results are now becoming more consistent and as a result of low potassium, I have to ‘gorge’ myself on this – so chocolate, tomatoes, bananas – you name it, I need to eat it. Put on a kilo or so, so need to watch the chocolate! Phosphates are down, PTH down and if this continues, then good signs all round. Dialysis time now averages about 3 hours 40 on a shorter session, although have been down to 3hrs 20, and for longer sessions up to about 4 hours. I have two doses of Tinzaparin to accommodate whether I am on a shorter session or a longer one, as I noted that my dialyser was remaining dirty on wash back, with some clotting, all on the lower dose of 2500units, so have 3500 also now for the longer 4 hours sessions.
Kimal took back a couple of the troublesome cartridges for analysis – not heard anything back, but had noted on some cartridges that the dialysate line at the lower left does not always sit in the channel in the plastic framework, and as such could become occluded. Needs a bit more tape to hold it in place.
With renewed confidence in the machine, contemplating a holiday with it in tow next year, rather than booking into a local unit. Want to go to France for a first hit as I can drive and take the machine with me. If that all works out ok then might work out doing this with flights.
I need to chase up my Kimal nurse as he did suggest I could attach my machine to the network so that both Kimal and NxStage could get data direct on the performance of the machine. I have a spare port on my router, and its about 4 feet from my machine, so will be easy to set up.
Onward and upward!
NxStage Users UK – Forum
The NxStage Users UK forum is now live and ready to take your discussions! You can find it by going to www.nxstageusersuk.co.uk or you can just click this link. There are several categories for different subject discussions, but if you want to add a new category, please just let me know.
If NxStage or Kimal respond to any discussions they will be published in full.
Got something to say? Had a good experience, or maybe a not so good experience? Share it and we can all benefit by improving our collective knowledge.
New forum on mydialysis site
I’m pleased to say I have now started up a forum on the my dialysis site which is embedded in the blog. This is a public forum so anything posted here will, after moderation, be visible to all. Given the development of NxStage in the UK, then this is a good opportunity to broaden the discussion and ‘compare notes’ to help those either new to dialysis, or those maybe in the queue to go home on dialysis and need to make decisions with their health professionals about what is the best way forward for haemodialysis. Decisions about whether to have a ‘conventional’ machine or to go the NxStage route. Maybe NxStage is the new ‘convention’.
Anyway, got something to say, no matter how small, then please feel free to contribute. This is a discussion location about dialysis in all forms and also kidney disease that brings us to this place and time.
Go to ‘Discussions’ in the top menu bar.
Recruiting for Home Haemodialysis
There is much to be said for home dialysis. Several studies have shown that not only will the blood results improve, but equally, life factors improve too. For example, because I now dialyse at home while I am working, I have gained back the time I ‘lost’ travelling to, dialysing at, and travelling from the local unit. This amounts to about 16 hours a week – or a very full one waking day!! So why do so few take up home dialysis?
In the press release from NHS Kidney Care in May last year that supported and welcomed the Secretary of State for Health’s commitment to home dialysis, they gave some facts about the current state of home dialysis and the potential.
This is an extract:
“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 Care site 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!