About two months ago I saw an article in our local Dialysis and Transplant Magazine,Shoestring, about Ros and Charlie, who had installed a dialysis machine in their caravan, so they could travel the country.  Wow, I thought, what a great idea!  But what about all those things we take for granted in our unit or at home: support, water quality, cleaning, dealing with the consumables, etc?

Luckily, Ros dialyses now and then at our unit, so I jumped at the chance to ask her to write a guest post all about setting up and touring in her dialysis caravan. She gracefully agreed, and here it is.

I have a long history of renal disease, and after my transplant failed, I was again on dialysis. This time although on the transplant list for another kidney, I am very difficult to match up and had to accept that my life may only continue with dialysis.

Consequently over the years of dialysing I have become actively involved in the renal community, being involved with the kidney health consumer committee, several government committees and the Dialysis and Transplant Association (DATA). This is a volunteer-run organization that has two very nice, very affordable holiday homes in holiday spots, Rosebud, by the beach, and Yarrawonga, on the Murray River.  Both houses are equipped with dialysis machines and both the local hospitals have a holiday chair to cater for the holiday maker.

The most frustrating aspect of holidaying is finding a dialysis unit that can fit you in for a holiday. For myself I have managed to have a number of holidays, not only in the DATA homes, but at Myrtleford, Orbost, Sale, Dubbo, Lorne and Darwin.  It is a matter of ringing the dialysis units and hoping there is a dialysis spot at the time that suits. I then started hearing about people who had put dialysis machines into caravans, making it easier to holiday. So I am by far not the first to do this.

Prior to dialysing, my husband Charlie and I travelled the land, and loved to camp, mainly in the high country.  With my eyesight deteriorating I was determined we would travel again.  We took some time to choose our caravan (we went to a few caravan shows to work out exactly what we wanted).  We decided that we really wanted to be able to visit out-of-the-way places, such as the high country again, so we chose an “off road” caravan – the Topaz made by Tracktrailer.

Once we found the caravan, we asked Tony (head technician of Austin Renal Unit) to take a look at it and see where we could fit a dialysis machine.  Being a small caravan, we decided to turn the double bed into two single beds and have the machine in the middle at the front for better weight distribution.

My Machine Nestled Inconspicuously Inside Caravan.

It was relatively easy to turn the bed into two singles, because there was storage under the bed where it was cut down to size.  Charlie did this over several weekends, and being a good handyman had no problems with it.

Our next step was to get a machine.  Luckily, the Austin Renal Unit was upgrading their dialysis machines and sending the old ones to Chile.

The Reverse Osmosis System in place.

The tecs kept one back and cut the wheels and base off so it would fit into the van better.  Their main concern was the water quality in the places we intended to visit, so to ensure it would do the job, they took lots of measurements of both the machine and the Reverse Osmosis (RO) water purification system.  They gave us a testing kit to ensure that there was not much chlorine in the water after it had been through the filters.  Apparently this is an indication that there is a lot of bacteria which is being treated with chlorine.

These filters filter the local water supply before it goes to the machine.

They also fitted a much longer filter to ensure that the chlorine was filtered out.

Charlie had an old steel roof rack that he cut up and made frames to fit the machine into, to help keep it stable. The RO was put into an outside cupboard and water lines, power lines were run under the caravan and through a small hole in the floor.  This took another couple of weekends, as Charlie was working and only had weekends to do it.

All ready to go!

After a couple of months preparation, our travelling machine was ready for a test run or two.  It is certainly an advantage that I normally dialyse at home, as there is very little change to the normal dialysis procedure.  I normally dialyse overnight every second night at home, and I do the same on the road.

Our first run in the caravan was in our carport at home, and it went well.  We then graduated and I dialysed at my parent’s house who live in Mansfield (about 180 km – 110 miles away). That went well too.

Ultimate objective achieved!

Our plan was then to visit Mildura and Broken Hill, a round trip of about 1,700 km or 1,000 miles. We spent 4 days in Mildura and a week in Broken Hill, staying in caravan parks.  Both parks were happy for us to use lots of water to dialyse, and both water supplies tested well for dialysing.

In regard to preparation before a trip, because the machine gets used intermittently, we ensure it gets disinfected before we set off.  Bedsides this, there is no extra maintenance required.  Regarding consumables, for short trips, we fill the back of the Landcruiser.  When we plan big trips we arrange for the consumables to be delivered to the nearest unit and just carry enough to get us to where we are going.

After use, we double-bag our consumables and put them in the rubbish bin, just like we do at home.

I like to drop into Units along the way, to make sure that everyone knows about DATA and their holiday homes, and how easy and cheap it is to take a holiday.

When we go on a long trip I may also drop into country dialysis units along the way if there is a slot available.  This helps spread the workload and also to extend the length of the trip.

I would like to thank Greg for asking me to write about our experience setting up the dialysis machine and our holiday.  Our first long trip was a great success.  It has given us the freedom to travel when and where we like.  And we have only just begun.  Roslyn.

A few weeks ago when I was dialysing at Lindfield in Sydney, I mentioned that they had planned to change their licence to provide a nocturnal (overnight) dialysis service, but found it to be too expensive to make the changes.  The owners of that unit (Diaverum) recently built a new unit in North Melbourne, and this time they designed the unit for nocturnal dialysis from scratch.

I went along to the official commencement of nocturnal service last Tuesday.

Apart from the beds, I wasn’t sure what to expect.  Do they use special, bendy needles?  How do they check that the patient is OK and not leaking blood slowly all over the bed?   Is it every night, or just a few?  Do you get breakfast in bed?  Is it better for me that daytime dialysis? Will my health fund pay for it?

For the answers to these questions and many more, read on…

Nocturnal dialysis is not new.  I heard of it being used in at least one regional city (Geelong in Victoria) 15 years ago.  I didn’t ask questions about it then; I just thought I wasn’t ready for that, so I promptly forgot about it.  What I didn’t know was that it was being offered as a home dialysis option as an alternative to dialysing through the day.  Some of the health outcomes achieved were quite spectacular, there were many devotees and it has grown as (home) dialysis option ever since.

Nocturnal BigD: my bed for the night? Looks a little sterile, but then I suppose it should be.

Diaverum is the first to offer it as a private unit service in Australia.  Patients arrive around 8:45pm, are hooked up by 9-9:30pm, using the the same dialysis needles used for daytime dialysis.  They watch TV, movies, read, have a hot drink, etc, then off to sleep.  At around 5:30am they are woken and disconnected from the machine.  Typically they wash/shower and dress, have a light breakfast, and are gone by 6:30 – 7am.  They do this three nights per week: Tuesday, Thursday and Sunday, with a long break Friday/Saturday and all day Sunday.

The machine runs fairly slowly (say 250 ml/min rather than 350 ml/min) so the dialysis is quite gentle.  Because it runs for about eight hours each time, rather than the usual three hours, it is hugely effective in cleaning the blood.  More about this later.

So far, no one has inadvertently bent their arm, pulled out needles or rolled the wrong way.

The Redsense Blood Leak Alarm

One of the innovations introduced for safety is a blood leak monitor, called a Redsense Alarm.  It comes in two parts: the alarm unit and the blood sensor patch.  The alarm unit is a lightweight disc clipped to the patient’s clothing.  The sensor patch (self-adhesive back) is attached directly over the venous needle access point.  The leads from the sensor are connected to the alarm, and the alarm sounds and flashes at the first drop of blood.

Two nursing staff are on duty through the night.  They do initial observations, and check up regularly, but as long as the person is stable, they let them sleep until morning.

Because of the increased staffing required, nocturnal dialysis costs Diaverum more to provide than daytime dialysis, however, because they are looking to establish the service and to define accurate performance metrics, they are currently providing it for the same price as daytime dialysis.  It would be worthwhile getting in early…

From the user’s viewpoint, there are several big advantages, and only one disadvantage I can think of:

• You get all of your days back.  If you are working (all of the current patients work), there is no interruption to the work day.  This is unheard of for daytime dialysis patients.
• You get your family time back (mostly).  You can be there to help and support you partner and the kids.  No disappearing at critical moments, like breakfast, parent-teacher interviews or driving the kids to sport or ballet.
• You get even more of your health back.  The service has been in operation for six weeks so far, and as a result of the longer time on the machine and the resulting better clearance levels, two of the five people using it already have improved blood results, one coming off EPO and the other no longer requiring phosphate binders.  More improvements are expected.
• The only disadvantage is a big one: if you are married/have a partner: three days a week you both sleep alone.  Still, life is full of trade-offs; with daytime dialysis we are usually spending 15-plus hours apart.

Currently, the patients using the service are relatively young (30 – 55yrs).  This makes sense.  Younger BigD members are usually more stable on the machine, they are probably working and/or have young kids, so they value the day time when they can be there, and maybe they are a little more adventurous.

So, all in all nocturnal dialysis looks pretty good: the ideal service for the working/family person.  Since it’s on offer here right now, I’m quite tempted to give it a go.  I’ll let you know if I succumb.

One of the fun things that happen when two or three BigD members gather together for coffee or a meal is the phosphate binder ritual: all hands dip into pockets to find calcium pills, into the mouth, swallow with a sip of water and its back to the conversation.

All about phosphate binders from Cath F at Diaverum

We all do it, but I know it took me a while to understand why.  Just recently we had an in-house briefing about it at our dialysis unit from the very excellent Cath F, so I thought I’d share what was said.  (The good stuff is hers, any mistakes are mine.)  Thanks Cath.

It is all to do with ensuring that our calcium levels remain high enough to keep our bones and muscles strong and healthy.  I have often thought that my body is just a big bag of chemicals.  If all the chemicals are in balance, I feel fine and can take on the world.  If the chemicals are out of balance, I’m not worth talking to.

In the case of calcium (and its evil brother phosphate), it is very much getting the mix right.  In the normal course of events, we eat foods with calcium and phosphate (and many other things).  The calcium and phosphate travel to our stomach, where the right amounts are absorbed into the bloodstream and the rest flushed away via the bowel.

How calcium levels are regulated in the body (thanks Wikipedia)

Guess which organs regulate the level of calcium and phosphate in the bloodstream?  You got it, the kidneys (with the liver).  They do this by producing a hormone called Calcitriol, or activated Vitamin D.  Calcitriol also controls another organ group, the parathyroids, four glands the size of a grain of rice in the neck, surrounding the Adam’s apple.  These control how much calcium is in our bones, and how much calcium is in our blood.

But for BigD members, it’s a little different.  Without the kidney producing the Calcitriol to control how much phosphate and calcium gets into the bloodstream, the gates are wide open.  That’s when the evil brother takes over.  All those extra phosphate molecules in the bloodstream attract and combine with the calcium, quickly causing a calcium shortage.  The parathyroids identify the shortage and instruct the body to release more calcium from our bones.  The phosphate combines with that calcium too and the parathyroids calls for more calcium, and so on in a vicious cycle until our bones become porous and fragile.  Bad news all around.

There are several actions we can take to prevent this.

• Firstly, we can replace the Calcitriol that our kidneys no longer produce with artificial Calcitriol (in little red and white football-shaped pills) that performs the same function.  The level required varies and most people have a regular blood test (typically monthly) to track and manage it.  I take four every Thursday.  The level sorts itself out over the week.
• Secondly, we can slow the operation of the parathyroids.  These days this is done with a drug called Sensipar® (or Mimpara®), that mimics a high calcium level for the parathyroids.   It stops them sending those “send more calcium” signals to our bones.  Before this drug, we used to have a small surgical procedure to remove some or all the glands.  I am in this “before” group.  You can tell who we are: we all have a nice white line below our Adam’s apple (indicating that we are all members of the BigD Parathyroid Subcommittee).
• Thirdly and most commonly, we can take phosphate binders. These work pretty simply: you take at least one just before you have food or drink that has phosphate in it (just about everything has phosphate!).  The pill sits in your stomach and unravels into liquid.  As the phosphate-rich food arrives, it floats in the calcium liquid, and the phosphate binds with the calcium.  The joint phosphate-calcium molecules are then carried through the gut, into the bowel and out into the cold hard world again.

Pretty-well everyone’s monthly blood tests include phosphate levels, so it’s pretty easy to keep track.

I take about two 600mg Caltrate (calcium carbonate) tablets and one 750mg Fosrenol (lanthanum) chewable tablet as phosphate binders before meals.

Over the last few months mine have been stubbornly high, and I have the itches and aches to prove it.  However I recently increased my Calcitriol dose and I think things are improving.

The other technique of course is to cut the phosphate-rich food you put in your mouth.  I made the mistake about 6 months ago of going onto Soymilk.  I thought (without doing any research) that it must have lower phosphate than cow’s milk – seems logical, right?  Every week I got itchier and every month my phosphate level got higher.  I doubled my phosphate binders and it was still high.

Finally I spoke to our unit’s dietician and she told me the awful truth: soymilk is VERY high in phosphate.  And I was having a great dose on my cereal every morning!  So I asked the obvious question: what should I be having?  The answer surprised me: Rice milk – low in phosphate and quite tasty (though rice milk on rice bubbles seems a little one-dimensional).  Still, the result has been impressive: my phosphate is nearly normal.

So next time you get together for coffee, don’t forget the ritual.  Do it early and do it often, and keep your bones healthy.

It’s been a couple of weeks since my last post. I’ve been on the move, what with Easter and then Anzac Day and birthday celebrations in distant cities, I have had BigD in more remote units than I have had at my own.  That’s one of the pleasures of being a BigD club member: there are dialysis units and instant friends just about everywhere.

Julie and I were in Sydney for her work for the whole Easter/Anzac break, so I dialyzed for five days at Lindfield Diaverum unit. It’s an interesting unit, with beds in all but one station.  They originally planned to offer nocturnal dialysis, but failed some health department hospital test at the last-minute.  By then they had bought the beds, so there they are.  They are a little off-putting initially, especially if you want to sit up and do things.  However, most of the members of this BigD club are getting on in years, and I think they rather like the beds.  Also, I had a couple of early morning sessions, so I treated that time as an opportunity to stretch out and catch up on my ZZZs (very pleasant!).

As usual, I took my PC and did some bits and pieces: email, watched my latest video series: The Tudors.  Very good.  Gets you in right from the start.  Though there are no likable people, there are many to dislike and there is some pleasure watching a few heads roll.

Since we were there for Anzac day, we went to the Dawn Service in Martin Place in the city.  Nice early start that day: arrive at 0415, service begins at 0430.  There were a few thousand of us there, standing in the rain.  Very fitting.  The service was good, especially the Last Post, but Martin Place is quite small and cramped, and to me, lacked the camaraderie of the Melbourne dawn service.  The Melbourne Shrine of Remembrance is wonderful, and the grounds easily hold many thousands.

We also went to a double 60th birthday in Cairns, about 3,000km north, for Julie’s brother and sister-in-law.  I arranged to go to the Cairns Private Dialysis Unit, which is basically a four seat, one-person show.  Sandy is the Unit Manager.  She is very friendly and capable and it is a great place for holiday BigD.  They have Fresenius machines, blunt needles for buttonholing and supply you with two cups of tea and two rounds of sandwiches through the run. What more can you ask for?

There is also a public unit at Cairns Base Hospital, but I have never been able to get in there because it is too busy.

The birthday celebrations were a challenge.  So much good food and drink, so bad for me!  I arrived on a Friday, which in a non-dialysis day, dialyzed on the Saturday and flew home on the Sunday (my other non-BigD day).

With BigD and holidays it’s always a balance.  If you dialyse daily, you lose about 4 hours from the day, but you can eat what you like; on non-BigD days, all your time is your own, but you have to watch the fluids and the potassium/phosphate mix.

My sister-in-law has a big and well-earned reputation as a great cook, and the food just kept on coming.  My approach was to sample small bits of most things, including the wines.  That worked very well.  What with the dancing and the tropical heat, I went to bed with a fairly full and happy stomach, but not bloated and not worried about how I much fluid I would be carrying the next day.

We stayed right on the waterfront and had a great view of the giant catamarans leaving for the Great Barrier Reef islands in the morning full of energetic, happy tourists and returning in the evening still happy, but looking pretty tired.

I also met a fellow BigD friend who now lives in Cairns.  It is always good to catch with him over coffee, so we can exchange health hints and war stories. I have had aching joints lately that have stopped me jogging.  He has recommended fish oil or cod liver oil to get the joints moving again.  I will be trying out both over the next few weeks, and I will let you know how it goes.

One of my frustrations with specialists came up during this conversation.  Each specialist, including mine, has knowledge that is centimetres wide and kilometres deep.  Things are fine if your problem falls within this zone, but if not, don’t expect the same insight. The best approach is to either ask a friend who has the same problem, or find another specialist in that exact area.  The friend is usually cheaper.

I am writing this post on the plane on the way home and I’m looking forward to getting there.  That’s the thing about going away.  When you leave there is that delightful anticipation of the trip and the arrival, the new places and different life.  Then, when you are heading home it’s looking forward to getting home: settling back into your routine and sleeping in your own bed.  Bliss.

I often get asked for advice from people who are about to start the BigD.  I mostly say that dialysis is no big deal.  It’s a very effective treatment that involves a change in lifestyle.  But saying this is not really enough, mainly because most people have their own expectations about dialysis that are often related to how quickly their kidneys failed.  So I thought it may be useful to look at some of those expectations and see how they hold up.

For some, the need for dialysis comes as no surprise; their kidney have been slowly failing and their doctor has prepared them for months or even years.  As a result, these people often develop a real dread of dialysis.  For those whose kidney failure is quick and unexpected, the shock of needing dialysis on top of the trauma of kidney failure does not come with anything like the same anxieties.

Friends and family don’t usually know much about dialysis, except that it’s a bummer, involving needles, machines and lots of time out of your life.  All of these things are true; I don’t know many people who would dialyse if they didn’t have to.  But it’s also true that dialysis gives you the rest of your life back, to live the way you want to.

Kidney failure is the real bummer.

If they fail fast and unexpectedly, you’ll switch from a healthy individual to a very sick, weak, grey, panting, aching, puffy and dopey one within a few days.  Forget walking down to the shops, visiting friends or having a nice drink after work – forget work too.  The contrast from healthy to unhealthy is so stark, that in a very short time most people welcome dialysis.   And they are pretty happy with the result.  After a week or so those lousy symptoms and feelings go away and their old life though modified, seems possible again.  (Don’t get me wrong, I’m not saying there is no resentment, anger and sometimes despair, I’m saying that people in this position are usually more open to dialysis.)

It can be more difficult for people with long-term kidney disease (like me).  I had a dramatic loss of function to one kidney in 1972, and at that stage found out the other kidney was not working.  Luckily the failed kidney was repaired and the remaining function was enough to get me by for the short to medium term.  But in the early 1990s I became increasingly unwell, and my doctor began preparing me mentally and physically for the BigD.  Physically, this was a good move.  My fistula was in place and a good size when I started dialysis in 1995.  Mentally, not so good:  I began to think of dialysis as a big black BAD.  It was a dark zone which represented failure, loss of freedom, maybe pain and general misery.  To me, the dread of starting dialysis was worse than the kidney failure.

So, of course I held off for as long as I could (much longer than I should have) and so was quite sick when I started.  And I was sure that it would be a terrible experience.  The needles were a shock, but there was local anaesthetic, so not much pain. The rest of it, being uncertain about what to do and what would be done to me, sitting quietly for four hours, turned out to be not that bad: a cup of tea, TV, a small snack, several blood pressure measurements and even a chat with others and the run was over.  The needles came out, dressings on and I went home.

After a week or so I started to feel pretty well, so I became ambivalent: I liked what dialysis did for me but I hated going there and losing all that time.   That feeling didn’t go away for years (I’m a slow learner).  But eventually it became clear: my BigD time is an investment in the quality of the rest of my day, my week, and my life.

There are few uncertainties now.  I put in my own needles, painless using the buttonhole technique; I have things to do during each run and the time goes pretty quick.  Dialysing five times per week means I can eat what I like (mostly) and I’m in good health, so I live an active life between runs.

So, what should you expect from dialysis?  You should expect a few seconds of needles that become less and less worrisome over time.  You should expect to invest around 15 hours of your time per week, so start thinking of things to do while you are there.  But mostly, you should expect to feel pretty well within a week or so of your first run.  It’s not something to dread; it’s not easy at first, but it gets easier to handle as time goes on, and it gives much more than it takes.