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Wednesday, 09 October 2013 13:31

New NxStage website

Written by Steve Bone
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Now that NxStage have taken more control of their products in the UK, they are building a new site for the UK. This will be good news as hopefully we will see more materials and guides that are UK based. See http://www.nxstage.co.uk

Kimal are still a major partner with NxStage in the UK.


... http://mydialysis.co.uk/blog/2013/10/09/new-nxstage-website/

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Monday, 05 August 2013 17:35

Healthy Heart

Written by Steve Bone
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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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... http://mydialysis.co.uk/blog/2013/08/05/healthy-heart/

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Saturday, 22 June 2013 18:09

Measuring Fistula Blood Flow

Written by Steve Bone
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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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... http://mydialysis.co.uk/blog/2013/06/22/measuring-fistula-blood-flow/

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Sunday, 02 June 2013 11:10

Wells Mermaid Dialysis Centre 2

Written by Steve Bone
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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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... http://mydialysis.co.uk/blog/2013/06/02/wells-mermaid-dialysis-centre-2/

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Monday, 27 May 2013 06:39

Wells Mermaid Dialysis Centre 1

Written by Steve Bone
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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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... http://mydialysis.co.uk/blog/2013/05/27/wells-mermaid-dialysis-centre-1/

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Thursday, 09 May 2013 07:24

Home Hemo group for Peterborough

Written by Steve Bone
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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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... http://mydialysis.co.uk/blog/2013/05/09/home-hemo-group-for-peterborough/

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For me, every Monday starts a new week with the needle brothers (needles are definitely male).  So I thought it would be interesting to get close up and personal with the mechanics of needle access each time I connect to the machine.

I am a little different from most, in that I connect up 5 days per week, starting early (7am) on Monday, with afternoons on Tuesday, Wednesday and Thursday, and then another early start on Saturday.  And since I use the buttonhole technique, both my Needle Brothers are blunt and go into the same access holes (almost) every time.  Non-intuitively, there seems to be no ill effect on the strength of the fistula wall (but I am always watching…).

For each hole I clean the area thoroughly, coat it with antiseptic (Betadine) and start to remove the scab using a sharp 19 gauge poking needle.  There is a trick here.  Because the scab is being constantly removed before the hole has a chance to heal, it tends to grow back a little more aggressively each time.  It begins thick and proud and easily lifted off, but after about day 4, it grows back low and thin and tightly attached, especially if I have pushed the needle fully into the hole with the collar hard against the skin.  For some reason best known to the scab, it then grows back concave, into the cavity formed by the collar and is very time-consuming to remove.  I have found the best way to avoid this when connecting is to leave a little (1/2 mm) of the dialysis needle out of the hole.  The scab then continues to regrow on top.  Also, by day 4 or 5, the scab is so thin, it is easier to scratch through it than to remove it.

Once removed, I feel around the exposed flesh for the entry hole.  When I find it, I poke the small needle lightly into the hole to provide an easy entry for his big brother.  I then insert the large blunt needle into the track, and if all is lined up, it glides effortlessly down the shaft, pushes open the puckered hole in my fistula and settles in place for a few hours’ blood flow.  I tape the needle into place, usually packed up by a rolled up gauze pad, leaving a very small area of the needle shaft showing, and positioning the tip in position away from the internal wall of the fistula for easy flow.

I then do the same for the other needle.

Sometimes there are problems.  My fistula has a habit of moving about under my skin, so that one day the hole lines up with the track and the next day it is over to one side, and I have to chase it.  I do this by feeling this way and that with the tip of the needle (I NEVER push it hard) until either I find it, or I give up and replace arm-friendly Mr Blunt Needle with potentially arm-hostile Mr Sharp Needle.  Hole movement happens naturally over a week or two, and more often when I go to the gym regularly.  I find that exercises aimed at building up my biceps or triceps tend to either build muscle or flesh between the track and the hole or nudge the fistula this way or that, moving the hole away from the tunnel (I call it the Schwarzenegger curse).

I wish someone would invent a fistula hole finder (like the reverse of a stud finder for plaster walls). Life would be sweet and Mr Blunt would prevail.

Removing the needles at the end of the run is simple.  First remove the tape holding it in place, loosen the needle so it is easily moved, then position a small sterile gauze pad over the needle exit.  Simultaneously remove the needle and press the pad firmly onto the fistula hole to stop blood escaping.  Do not Press down on the pad while the needle is still in place.  It hurts, and it damages the tunnel and the hole in the fistula.  The pad should be folded so that it enables focussed pressure on the fistula hole rather than general pressure around the access point.

Once the bleeding stops tape or seal the hole as appropriate.  I use gauze and tape, other use dots.  Buttonhole holes tend to stop bleeding within 5 minutes.  I take off the tapes after a couple of hours.  Other need longer; it depends on you.

Well, that’s it.

Oh, also, as preparation, when I am on my way to each session I spend a few minutes visualising the whole access process.  Then, when I arrive, I am in the right frame of mind to get started.

... http://bigdandme.wordpress.com/2012/07/08/on-dialysis-life-with-the-needle-brothers/

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Friday, 06 July 2012 20:05

I'm off in 5 days!

Written by Kamal Shah
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You're not going to believe what else happened after I last updated you about my trip! Two of the three friends who are joining me on the cruise along with their families stay in the US and as you know, the cruise starts from Vancouver in Canada. So, they both needed a Canadian visa as well.

They applied for their visas about a month back. As we were getting dangerously close to the start date of the cruise, we got increasingly worried as they hadn't received their visas. This was a couple of days back. Dinesh visited the Canadian consulate in Seattle where he stays. No luck. They said there was no way they could find out except by sending an email or a fax. They did both. No response.

We immediately got onto a call and started planning for the worst case that they did not receive their visas in time. Chetan found out that they could actually fly in to the place where the ship would dock on the first stop which was in the US so they would not need Canadian visas and they would also disembark at the last stop before getting back to Vancouver. The downside - they would be able to be on the ship for only about three and half days! This would also cost each family about $1,600 more for the flights. But what could we do? We had no choice. 

We decided to wait until Monday and then they would book the tickets.

What I construed as the universe's whispering had by then turned into a full-blown loud message! What was this? The Canadian government's way of telling us we're not welcome? Right from the beginning of this plan, things did not go smoothly. Everything that could go wrong did go wrong! However, the one thing that was positive was that in the end, things always turned out fine. Like with my friends' Canadian visas.

This morning I received an email from Dinesh that read:

The visas are approved!
I have Yogita's and my passports in hand. Chetan's and Pavithra's passports are in Express mail expected to arrive at my house tomorrow. We are now unblocked to do next level planning of how we will ENJOY the freakin' vacation.

Seriously guys, thanks for all the help.

PS: And a note to myself about starting earlier moving forward.

I leave on Thursday.

... http://www.kamaldshah.com/2012/07/im-off-in-5-days.html

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Tuesday, 03 July 2012 19:00

Mahabubnagar Diary

Written by Kamal Shah
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One Friday morning I found myself on the Bangalore Highway on the way to Mahabubnagar. NephroPlus has a dialysis center there. This was the district's first dialysis center providing free dialysis through the government's Aarogyasri scheme. Many patients travelled about 100 km each way twice a week just to get dialysis until then!

The road is excellent. Once you take the left fork at Jadcherla and then take the right that goes into the district, the area is especially picturesque and very green. Our center is at the SVS Hospital that is at the mouth of the district.

I complained that I had no shoes until...

At our unit, I chatted with the team and the guests (NephroPlus jargon for patient). It struck me how little some of them had access to. I saw this lady, probably around 65 who had very thin veins. The technicians struggled to cannulate her. She did not utter one word. She did not even complain about the pain which I could sense was immense from the repeated attempts at pricking. She stoically looked on, waiting for it to finish. The technicians gave up in the end as there seemed to be some stenosis (blockage) due to which the minimum flow of the blood was also not achieved. They advised her to go to Hyderabad and get her fistula checked and revised.

I felt really bad for her. Now, she and whoever was looking after her would have to catch some conveyance to Hyderabad (about 100km) and then meet a vascular surgeon who would then advise them what to do. And then they would have to get it done. The surgical procedure was just a small part of the suffering. That the whole effort of getting something as basic as a fistula revision involved so much more trouble seemed quite unfair. I felt my heart become very heavy when I looked at the lady thinking about this.

Truly, I was very fortunate to have the access to medical care I currently have.


Mahabubnagar is famous for many reasons. One of the less talked about these days though is the Banyan Tree called Pillalamarri which is supposed to be about 800 years old. Some people say that it is impossible to tell which is the main tree as there are many 'children' of the tree that have grown around it. Beneath the tree is supposed to be the tomb of a Muslim saint. 

We visited the site a few trips back. It was totally deserted barring the one old man who manned the ticket collection room with a single window through which he would issue the tickets to the enclosure. We took our tickets and went in. It was a maze of trunks. The funny thing was until someone tells you that the trunk of the original was not identifiable, you don't think about it! One thing was for sure, the tree was really old.

Telangana Agitation

Mahabubnagar is represented in Parliament by K Chandrashekhar Rao, the president of the Telangana Rashtra Samithi,the party that is at the forefront of the agitation for a separate state of Telangana. The area is a hotbed of activity related to this agitation. Most bandhscalled in support of this cause are successful. During the setting up of our unit, the agitation was totally alive and kicking because of which we did have a few days of disruption - government officials would not attend duty, doctors would stay away from work etc. These days however, it looks like things are more peaceful. We've not had such problems for a while. Once the Presidential elections are completed, however, people expect some move on this front. No one is really sure about which direction the movement will take from then on. Fingers crossed!

Avanthi Udupi Hotel

I went over to the main town to have lunch at the usual Avanthi Udupi Hotel. The place serves simple South Indian meals. Nothing very fancy. But still very tasty. It is the typical South Indian Meals place complete with the sweets counter near the billing desk, a small air-conditioned section, a small Family section, the outer area for the rest of the customers and the huge weighing machine outside that has all the lights and fancy colors, into which you insert a one rupee coin and it throws out a small card with the weight printed on it!

... http://www.kamaldshah.com/2012/07/mahabubnagar-diary.html

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