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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There are so many ways that dialysis can be improved and I will focus on a number of good practices and new ‘stuff’ over the coming blog posts. But for this post, I was drawn by this article on saving the huge amounts of water used in dialysis and recycling, something they have been doing in Canterbury for 10 years now. The excess water from the reverse osmosis process is saved and pumped to a special tank in the roof set aside for this purpose and the water is then used to flush toilets in the unit. The process can save 800 litres of water per hour, and although the cost of installation was £15,000, the savings in ten years have been in excess of £75,000. One for the NHS bean counters to ponder – bit of a no brainer I suggest, especially as they installed the same process in the new Ashford dialysis unit from new, so being cheaper to instal, and savings achieved much sooner. I wonder if they thought to do that in the new Peterborough City Hospital we are moving to in November this year? Hmmmm! I’ll ponder that for a moment, and ask the question and update this blog post when I find out – think I know the answer though! http://greenerhealthcare.org/nephrology-resources/conserving-water

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... http://mydialysis.co.uk/blog/2010/10/15/green-dialysis-improving-conservation-and-waste/

Friday, 15 October 2010 18:08

Dialysis and Viagra

So, you’re on dialysis, and with that, and age, the combination has led to embarrasing difficulties. If you are in a relationship from before you started dialysis, then your partner has shared things with you and may well be more understanding, but what if you are single, not only do you have the big D to overcome as a conversation stopper, but if things turn out great, the time will come when you go to bed and another embarrassment could result!

The good news is, so long as your blood pressure is fine, and you are generally well in your treatment, consult your GP about Viagra. Amazingly it’s not a big deal to talk about with your GP, and they will be able, in most cases, to prescribe Viagra. You may be started on a lower dose to check you can cope with the changes this causes. Viagra does have the effect of lowering blood pressure, so if your pressure is low to start then not a good idea to take it.

Also note that you are likely to experience elevated heart rate, so if this causes you problems, don’t take it and consult your GP.

The weird and almost beneficial effect is that if you have no renal function at all, the effects last longer!

But! Always consult your GP, and if they are not certain on the answers for you, they must consult your nephrologist or consultant.

The main thing is, don’t hold back, every day solutions can work for many on dialysis.

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... http://mydialysis.co.uk/blog/2010/10/16/dialysis-and-viagra/

Wednesday, 20 October 2010 19:42

Managing Life Expectancy – Yours!

So you want to live? Yes, a tough opening line, but every dialysis patient needs to understand the facts. Your doctor, rightly, will tell you that dialysis is not a cure, it’s a treatment. And, they should tell you that a transplant is not a guarantee.

It’s a fact that the life expectancy of dialysis patients, on average in years, is measured on the fingers of two hands. And, it is fair to say that if you stick with the absolute minimum of dialysis YOU think you can get away with, then start cutting the number.

The key to a much improved life expectancy is to improve your treatment. You need to get beyond the the 3 days a week for four hours mentality and consider daily dialysis, which can be for 3 or 4 hours a day, or nocturnal. To do this though, unless you are in an area that has a dialysis unit that offers nocturnal options, then the solution lies in dialysing at home.

I’ve banged on a bit about home dialysis before, but the real benefits are that you can take real control of your treatment and have a major impact on your long term health. Unless something quite radical happens in UK dialysis centres, the cost constraints that govern provision of facilities, nursing and supplies will continue to restrain centres to the standard 3 days x 4 hours routine as that ensures a reasonably controlled shift process, and moves through the maximum number of patients. When you see patients on dialysis with low pump speeds, clammering to come off early because they are bored or have something more important to do, you realise that many just do not get sufficient treatment to maintain good health. (and, to be frank, what can be more important than extending your life for as long as possible?)

A concerted effort to move all able bodied and those with the facilities to accommodate dialysis equipment should be trained to go on home hemo, this reduces costs to the NHS after the 16-18 month payback period, so freeing cash, and space to offer those that cannot go home a more considered dialysis regime at hospital so that they achieve better clearances because they are no longer ‘rushed’ to get off in 4 hours. The money saved through the home hemo route can then be ploughed back into the development of bigger and better facilities for those needing hospital treatment and may even offer the option to start nocturnal units, as is becoming increasingly ‘popular’ in the States.

All round, the average life expectancy of ALL dialysis patients will be enhanced.

And…. given the earlier blog post from me on finding an intelligent solution to the stalled donor situation, is this not one area for strong consideration. A case of changing the way we do things to achieve better results rather than trying to change the world on donor organs where half that world wants no change.

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... http://mydialysis.co.uk/blog/2010/10/21/managing-life-expectancy/

Monday, 29 November 2010 14:55

NxStage – a solution?

I learnt to selfcare on hemo over 20 years ago, and have dialysed at home in two houses in the past. At present though I live in a rented property and I have never pursued the idea of home hemo again as the work involved in installing the RO and machine etc would never be agreed to by my landlord, or any other landlord faced with this prospect – and I don’t blame them either! (and my landlord is a GP and would be better placed to understand)

So, when it was recently suggested that the local renal unit could obtain a NxStage machine for me, I jumped at the chance. This will be far easier for the landlord to accept as the work is minimal, and the changes, if any, can be reversed quickly and easily.
And the real big plus is that I can now face the prospect of daily dialysis and all the benefits that brings, not least that I can work while dialysing so gain back some 16+ hours a week travelling and dialysing at the local unit in Peterborough.
So, in the new year, all systems go, and I can look forward to a positive change in my life thanks to innovative technology.
How things have changed since I started dialysing in 1990 – we even used to recycle dialysers back then! Ugh!

Update: Well, have to wait at least three month while the NxStage is 'tested' on one patient - and assuming that is ok, then I can out my hand up for one.

The interesting issue here is that other renal units are using the NxStage and have been for some time, yet we are 'testing'? One would think that this should be handled centrally rather than devolved to local decisions. Makes me think there would be some buying clout for centrally sourced supply of the machines? Fingers crossed, eh?

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... http://mydialysis.co.uk/blog/2010/11/29/nxstage-a-solution/

Sunday, 05 December 2010 08:06

New Peterborough Dialysis Unit

Well, we are finally dialysing at the new Peterborough unit. First class facility and a huge improvement on the old one. A few niggles though. It’s blooming cold! Even the nurses are wandering around with blankets over their shoulders to keep warm. For the patients who will all feel the cold more for their 4 hours stint, it has become very uncomfortable. The building managers have been around with their thermometers and judged things to be fine – but they have not consulted the nursing staff or the patients. Also, they’ve not issued barrier cards, so patients have to ask nurses to sort out their car parking on each visit – not their role really.

Updated - we've got access cards to the car park - with thanks - shame the car park for the unit is now so full there are no spaces for the dialysis patients. Down to the building managers to sort this out - it can't be that difficult! Can it......? Oh, and it's still cold on the unit. Lovely and warm around the rest of the hospital so this does suggest some 'climate' adjustment is required for our little corner!

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... http://mydialysis.co.uk/blog/2010/12/05/new-peterborough-dialysis-unit/

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