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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Thursday, 09 May 2013 07:24

Home Hemo group for Peterborough

The community care team at Peterborough Dialysis Unit have recently held their first home hemo group meeting. Long overdue but a good idea. It helps to get the patients dialysing at home, together to share experiences and best practice, as well as extend knowledge and gain advice on a wide range of issues. A number of topics have been proposed for future meetings, and these meetings are to be held quarterly. I’ll either post updates on this blog or on the home hemo forum.(see below)

The team are also planning a self-care / home hemo day on the main unit to enable new and existing patients to consider home hemo for the future.

A new home hemo forum is in the process of being established that can pull together the thoughts and issues from the wider home hemo community. More on this to come shortly.

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Monday, 27 May 2013 06:39

Wells Mermaid Dialysis Centre 1

I normally dialyse at home and when away take my NxStage machine with me, but I am off on holiday shortly and am going to try the small unit located at Wells Community Hospital. It’s called the Mermaid Centre, and has a good reputation. They have just a few Fresenius 4008S machines, and provide holiday dialysis for visitors to Norfolk, as well as dialysis for locals. It’s about a mile from where we will be staying so is very convenient. They seem very well organised. I received a helpful booklet through the post from them in advance of my stay, with background information on the unit, and also details about the local area. If I had not already organised my break, this would have been a very useful guide. I’ll report back on how it goes once I have visited. In the meantime, they’re site can be found here: Mermaid Centre

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Sunday, 02 June 2013 11:10

Wells Mermaid Dialysis Centre 2

I have now dialysed at the small unit located in Wells Community Hospital, named the Mermaid Centre. Friendly team there, and a spotlessly clean unit – well done! At the time I was there, there was a problem with the water supply and the impact on the individual ROs supporting each of the 3 Fresenius 4008S.

The water supply kept failing and so the dialysate conductivity kept dropping. This was blamed on the handover period and appeared to be a regular occurrence. I might suggest this is not suitable, and should be attended to by the local techs. Other than that, good session, nice unit, very handy location and easy to park.

Verdict: I’ll go again when I next have a break on the North Norfolk Coast.

NOTE: it’s a shame my local dialysis unit had got my details and prescription wrong – so lesson learned here, check what the holiday unit has been given for personal details to ensure you get the correct dialyser, dialysate and settings.

If you are planning a trip to the area, I’d recommend this unit.

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Saturday, 22 June 2013 18:09

Measuring Fistula Blood Flow

With all hemodialysis patients using an AV fistula, it’s good to know the condition of your ‘lifeline’ and that it is not at risk of clotting.

The fistula flow should be periodically checked, and this can be done by ultrasound techniques, which can be time consuming and more expensive to deliver, and by Blood Temperature Monitoring (BTM).
As I dialyse on the NxStage, there is no facility on the machine to check using BTM, so approximately annually, I go to the local dialysis unit to dialyse for one session, as they have Fresenius 4008 machines, some of which are fitted with a BTM function.

The process involves getting on dialysis in the normal way, and then soon after settling, placing the arterial and venous lines in the BTM unit on the front of the Fresenius machine, and setting it to measure. The measure takes about 5 minutes to register, and is repeated to give two values, from which a mean value can be extracted. Then, the venous and arterial line connections are reversed temporarily, so you are extracting your blood from the venous line, and returning it to you via the arterial. 2 further BTM measures are taken, after which you can connect up normally again and carry on with the rest of your dialysis session. The blood pump speed is set at a constant for the test at 300ml/min.

From the measures taken the normal flow of blood through your fistula can be obtained, and standards will vary from centre to centre, but in this case, so long as the flow is 500ml/min or more then that is considered to be ok. Generally, there is a greater risk of clotting at 300ml/min or less. Additionally, the results compared with past tests will give some indication to the blood flow health of the fistula. I have just had mine measured at 1300ml/min, compared to 1100ml/min last time. Having had my fistula now for 22 years I am keen to ensure it is looked after and continues to work for me, so I am pleased with the results.

So, if you have not had your fistula checked in the past year or more, consult with your local unit no matter whether you are an outpatient at your local dialysis unit, or you dialyse at home. It’s your lifeline, care for it, and make sure it is checked over.

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Monday, 05 August 2013 17:35

Healthy Heart

The biggest threat to dialysis patients is heart disease, typically heart attack. Having been on the unit in the past when a patient has died while on dialysis due to an arrest, it underlines the care we need to take. Part of this is mainly down to fluid gains in between sessions – adding a lot of fluid and then taking it all off in a few short hours stresses the heart – and you could be doing this 3 or more times per week.

It therefore becomes essential your heart is checked regularly for irregularities. I have had the usual round of ECG, Echo and more, as well as stress tests running on a treadmill that steadily inclines and gets tough to use.

This year, my consultant sent me for a MIBI test. This is performed in the Nuclear Medicine department of the hospital, and for me this was at Papworth, the world renowned heart unit. The test is performed over two separate weeks, with a stress test in week one, and stressless test in week two. You are in the hospital no more than 3 hours on each occasion.

The stress test involves having a nuclear isotope injected into a vein, and also a drug that stimulates the heart under stress. The isotope is ok, but the stress drug, for me, was very uncomfortable – but for 6 minutes of discomfort, worth doing to get the results. After the injections and the stress period, you have  to eat a fatty meal, and the scan using a gamma camera is done an hour later. The scan takes 15 minutes as the scanner revolves around your body to photograph the heart muscle ‘illuminated’ by the nuclear isotope. At Papworth they also finish off with a 2 minute brain CT scan – I’m assuming the found I had one!

The second test is virtually identical save for the stress drug.

The results are much more accurate and will allow your consultant to see if there are any developing problems.

So, if your consultant suggests you need a heart examination of any type, take it – it might be a wake up call about how you are treating your body in between dialysis sessions.

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