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, 19 June 2011 16:39

Mysterious Parcels

Arrived for dialysis on the Peterborough unit on Saturday afternoon, and in the training room stood a pile of boxes, stamped with Kimal and NxStage. Yup, the goodies have arrived and will be set up on Monday and I start my training on Tuesday 21st  at 8am! Gonna miss my boys this week as they will not be able to stay with me while I am training as I am starting too early to get them to school etc. Still, they have been talking about it and are generally understanding about what is happening! Once I am installed at home, things will become incredibly easier! Now, I need to start planning two things, clearing out the garage to accommodate the supplies, and also planning what to do with the 16 hours a week I will get back not having to dialysis on the unit as I will be dialysing while I am working. Anybody got any old 5000 piece jigsaw puzzles………….?

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Wednesday, 15 June 2011 18:22

NxStage training fouled up

Big surprise. Went into dialysis on Saturday expecting to start my training on the NxStage today, Wednesday, only to be told it had been cancelled. A new training date ‘offer’ of 18th July was given. After some digging and a few emails it transpired the Leicester renal management had entered into contractual discussions with Kimal, the uk partners for NxStage, and as a result had put everything on hold. But of course they failed to tell any of the nursing team in Peterborough, and least of all, me. Quite disgusting behaviour and typically public sector – careless.
A call to the Chief Exec’s office on Monday morning has now resulted in training starting next Monday with a trainer from the USA.
I took the opportunity to raise the issue of the dirty dialysis machines, the erratic supply of consumables such as plasters, sterile packs etc, the lack of sufficient bedside tables on which to place necessary equipment to get on to dialysis with and a few other areas of issue. A lax attitude by the managers is not acceptable.
With the public sector threatening to strike over pensions etc in the next couple of weeks, I can’t help thinking the whole malaise and attitude of the NHS and other public units will never change as there is poorly focused, non commercial management leading the way.
Pity really, there are some damned fine people amongst the dross, dealing with the mushroom management! Yes, you know, kept in the dark and crapped on occasionally!

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Sunday, 05 June 2011 05:20

Daily Dialysis Update

An update on the daily dialysis test. The blood results achieved by doing 6 days of 3 hours were quite impressive. A large drop in phosphates, which, if continued would require a reduction in binders required, and also a drop in PTH – my parathormone levels have been rising, despite having a parathyroidectomy a few years back, some of the thyroid tissue must still remain, and so I need to improve the balance between calcium intake and phosphate control. The daily dialysis clearly had an impact, and I am keen now to see the effect of daily over several weeks. Of course another benefit of daily dialysis is a more relaxed diet regime as well as an easier to tolerate fluid intake. If you have ever tried to exist on 500ml of fluid a day – you’ll know how tough that can be. I have always struggled with this, but daily dialysis is a big help as taking off 1 to 1.5 litres a day is perfectly doable and means I can drink tea whenever I want (within reason).

The plumbing for the NxStage has now been done by Leicester unit, hardly know there is anything there – very neat an inconspicuous. The machine arrives on the unit in under 2 weeks now and I start my few days training on 15th June, all being well, home the following week.

Watch my blog for daily updates once it arrives! (Oh, and apparently, Leicester are now installing 6 of these machines, so more popular than at first thought).

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Friday, 20 May 2011 07:37

Daily Dialysis Test

Just a quick update on daily dialysis. I am doing daily for this week only on the Peterborough unit to test blood results on a Fresenius 4008 prior to starting using the NxStage next month. I am doing 6 days at 3 hours on the Fresenius where I will be doing 6 days at 3 hours 40 on the NxStage. Despite doing the few extra minutes on the NxStage I am hoping to see at least the same benefits as I am getting this week. I don’t feel any different, but in fairness I have never really felt any ill effects on dialysis anyway. I need to be more careful now on site selection for needling. I do not use the buttonhole method – never have, so I need  to ensure that after 20 years of having this fistula I do not weaken it by the increased usage daily dialysis will risk. I am fortunate that I can start to use new sites on my arm, and if necessary, at these, I could start to use the buttonhole technique. We’ll see how things progress but I check my fistula closely every time I use it, so I will see any side effects quickly.

When I start training on the NxStage I will blog daily on the experience, the training, the blood results and more. There is certainly a lot of interest in the machine as I have been contacted by many who would like to get one themselves – but this will be down to your local Renal group and their buying policies.

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Saturday, 14 May 2011 10:47

Daily dialysis

Well, finally here. Next week I’m doing a whole week of daily dialysis on the unit, testing blood every day to see the effects on blood results, so that when I start the training on the NxStage next month, setting the dialysis prescription will be based on some intelligence over and above the process the Kimal trainer will go through to get this right. Additionally, getting the prescription for Alfacalcidol, Renagel and Tinzaparin (single dose heparin) will be better informed.

I’m doing 6 sessions of three hours each on the Fresenius 4008, and I’m really pleased the unit have been able to accommodate me for this.

I’ll add an update once I know the effects.

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