Holiday Dialysis – across the world

Julie and I flew from Melbourne on 6 May at midnight and after a three-hour break in Hong Kong we landed in London on 7 May at 4pm.  Allowing for the time zone jumps, that’s about 24 hours in the air.

A few weeks earlier I spent three weeks in hospital with some bug and my haemoglobin had dropped to 7.  It was around 9 when I got onto the plane.  We debated whether I (we) should go at all, but my health was improving and frankly it is always easy to find an excuse not to travel.  If you give in, you will never go anywhere, so we decided to push on.

I rarely sleep in planes, and dread long hauls. True to form, I staggered bleary eyed through UK Customs and passport control feeling weak and tired.  Luckily our no. 2 son Liam was there to meet us, and he managed all the heavy lifting (not just at the airport, but pretty well every day!).

We drove to his flat and I gently lowered myself onto our bed for a nice 12 hour snooze.  Julie and Liam were out and about, on a long walk to Regent’s Park and some dinner before coming home to bed at a much more respectable 10pm.

London – Diaverum Forest Hill

I was booked into dialysis at Diaverum Forest Hill the next morning at 0730, by which time I was awake, if not firing on all cylinders.  As you well know, dialysis is a must show activity, no matter how you feel (no option to call in sick!).  Forest Hill was about 40 minutes away by cab (or two trains, one underground, one overground and two short walks) in South London.  I chose the cab (₤30 from St Johns Wood) and arrived at about 0720 complete with backpack full of goodies.

The Forest Hill unit has 20 seats and is busy all the time.  They very graciously moved someone to an afternoon session so I could dialyse as early as possible after I arrived (I arranged this before we left home).  Though I didn’t feel like it, I still put in my own needles (it is the one area of control you have no matter where you dialyse – and you only have yourself to blame if you stuff up), and watched closely to be sure all the settings were as specified by my unit (they were).

Mihaela, the Deputy Nurse and the staff were very friendly and helpful.  The other patients watched and returned my nod, but remained non-committal.  But no matter where we come from, we are all in the same boat and with so much in common, things soon warmed up.

After a couple of naps, a cup of tea and my snack, it was 1040 and time to go home.  I felt much better and was ready for the train trips home (accompanied by both Julie and Liam).

I eventually had seven sessions at Forest Hill, mostly starting at 1730 (with the occasional machine failure pushing that out an hour or so).  It was a very good experience and I gradually felt like I knew the place.  The only hassle was the distance from where we were staying – forty minutes plus each trip (trains one way, cab return).  Next time I will arrange for a more convenient distance to maximise our holiday pleasure (if you can’t do that on holidays, when can you?).

Forest Hill is a private unit and charges a few hundred pound per session.  Go to http://diaverumholidaydialysis.com/wp-content/uploads/2011/03/UK-London.pdf for details.

Within about three days I was feeling pretty good – better than when I left.  I felt absolutely justified in deciding to travel.

Oxford – Churchill Kidney Unit

At the start of the second week, we drove to Oxford, history mecca and stepping off point for The Cotswolds and all parts west.  I had booked in for two sessions at the Oxford Kidney Centre, which is an NHS Renal and Dialysis centre.

From the outset the staff at the dialysis unit were very helpful.  I spoke to Lin, the Unit Manager on the phone from Australia and she immediately offered me spots on the Tuesday, Thursday and Saturday Twilight shifts.  Later Allie Thornely, the Renal Dialysis Matron, told me they are very positively disposed to supporting holiday patients and can be flexible on the number of days available.  This is a great help when planning a UK holiday, because Oxford is so central for touring around the south of England.

The staff were very welcoming, friendly and competent and were happy to do that little extra.  My only (minor) issue is that all dialysis is on beds, not chairs, and I find it difficult to sit up to do things (like computing).  Beds notwithstanding, I felt very confident and safe and would certainly return should the opportunity arise.

The treatment was free (reciprocal agreement with Australia) and there were no other charges.  For those from other lands, the cost is around £300 (currently about $470) per session.  Go to http://www.oxfordradcliffe.nhs.uk/forpatients/departments/renal/kidney/kidney.aspx for contact details.

Stockholm – Dialys Unit Södersjukhuset

I emailed Eva Regnell, the Coordinator of dialysis at the Södersjukhuset Njurmedicinska kliniken (South Hospital, Renal Medicine), part of the Karolinska University Hospital.  Again, she immediately offered me holiday dialysis spots of my choice.  Initially, I booked only one session on Saturday 19 May, because I didn’t know if they offered Sunday dialysis.  I would have preferred both days because of the long gap coming up on the return trip home.  I asked during the Saturday session and found they have a small group that dialyses on Sunday, which I was allowed to join.  Very accommodating.

The unit is very centrally located in on Sodermalm, easy access by bus or cab.  It was just 4km from our hotel.

The unit is a very slick operation, with 30 beds (no chairs). Staff are friendly and competent and I felt very confident and safe.

A couple of things I’d not seen before:

Blunt Fill Needle – ideal for scab removal

• They use special bull-nosed needles, called BD Blunt Fill needles to scrape off the scabs if you are buttonholing.  They are still sharp, but not so pointed, and are quite effective.

Scooter-powered travel between wards

• The hospital is so big that each ward is issued with a scooter so they can get around quickly.  Very amusing to see a staff member zing past.

Again, I would definitely return if the chance arises.

While the treatment was free (reciprocal agreement with Australia) there is a 370 SEK ($50) admission fee for each session (dropping to 200 SEK ($28) for the third and subsequent sessions).   For those without a reciprocal agreement and non-EU citizens, the cost is 5068 SEK  (currently about $710) per treatment. Go to http://www.karolinska.se/en/Departments/Departments/Renal-Medicine/ for contact details.

(I have email addresses for each centre, but for privacy reasons will not publish them on this post.  Please feel free to contact me for more.  Also, check with the health department in your country to find out about their reciprocal agreements.)

I am very much looking forward to my next trip.

Dialysis in China (almost) and all points north – the details

Well, after months of planning and fitness doubts, we leave tomorrow on our UK and Swedish adventure.

About the China Leg

Originally we were to spend 6 days in Beijing before going to London, but after three weeks in some kind of unhealthy haze, I decided it was too risky this time.  I have a reasonable understanding of Mandarin,including important phrases like:

• Bushi Wo Zuode – I didn’t do it!
• Zhikong wo shenma? – What am I accused of?
• Wo keyi da dianhua gei wode dashiguan ma? – Can I call my embassy?
• Wo xiang yi bei kafei – I’d like a cup of coffee and most important,
• Wo xuyao touxi! – I need dialysis!

But not enough to be confident if things go wrong, having been wrong so recently.  So, for the second time, Beijing has eluded me.  But all is not lost.  I am determined to get there, either later this year or this time next year.  Third time lucky.

For those interested, after a long search and some help from my Chinese friend Rebecca, I had arranged dialysis at the Chinese-Japanese Friendship Hospital (中日友好医院), which is located about half an hour north of Tiananmen Square.  The cost is 1,500 Chinese Yuan per session (about US$250), plus 2500 Chinese Yuan (about US$30) registration fee.

For convenience we booked into the Crowne Plaza Park View Wuzhou, which is very close to the hospital.  You can catch a bus there (takes about 15mins), or a cab, they are quite cheap.  A brief warning: when you book (we did so via www.hotels.com who were very good) be careful about the cancellation policy.  They have a range of room types, and each has two prices, one is the nonrefundable price, the other is the refundable price should you need to cancel, which is about US$500 more expensive.  We had a little drama with that policy, but all worked out in the end.

The best way to start the process is to call the dialysis unit and talk through what you need.  Most speak English of a sort.  They then asked you to fax your dates along with a summary of your dialysis details from your unit.  I then got an email from the doctor in charge confirming the booking.  The unit also contacted my unit and asked for two blood tests before proceeding: my HIV and (believe it or not) Syphilis status.  I’m not sure what message that sends.  Still, when the result came back, I was quite pleased to see that it was negative!  As usual, they also require the latest health information about you from your unit, just before you leave.

All together a fiddly process, but if that’s what it takes…  If you would like the phone and fax numbers and email address, contact me at me email address.

The UK and Europe

So we are now travelling direct to London. I have booked into the Diaverum Unit in Forest Hill (one of many sister units to my Diaverum unit in Diamond Valley).  They were very helpful, and I am dialyzing on the same regime as at home (five days per week, three hours per time).

I am also dialyzing in Oxford twice and in Stockholm once.  Both of these are public hospitals, and with our reciprocal Medicare agreement, at no charge, so I even get a small holiday from paying for it (so to speak).  Contact me if you want the details.

Just a hint for those with lots of meds.  For big trips like this (3 weeks in a foreign land) I get my meds sorted into day-by-day bubble packs. I do this for 2 reasons:

1. Each day is measured out for the entire trip (plus a week or so for emergencies), so you won’t run out unexpectedly
2. Those pill boxes can be pretty bulky, and they only last a week, so you have to repack them from the myriad of pill bottle and boxes you also have to carry.

So, off into the distance,  But I will have my trusty PC with me, and where possible, I will post notes (probably briefly) of my dialysis and general travel experience.  Back soon…

Taking your Dialysis (machine) with you on the road

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.

Dialysis on the road again

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 found that to do so they had to re-licence the premises to an overnight/ private hospital, which from a cost viewpoint, was impractical.  But 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.

Can a blocked fistula cause chest pain?

I had some interesting comments and email this week, well worth sharing.  The first is from Balasaravanan:

Can a blocked fistula cause chest pain?

my mom is having the av fistula in the hand for 8 months since we have not used before 8 months due to some reasons that the creatinine was not so high it was 3 so we didn’t use that now the thing is that now we are going for a dialysis in the neck we asked to put in the hand the doctors said that the fistula is not working so leave it no problem will come some doctors  that heart attack will come due to the fistula just leaving in the hand now my mom is having a pain in the chest when my mom gets to sleep and wakes up…….she gets the pain…….! so tell me is that true? reply to me………..

As I understand it, your mom had a fistula put in 8 months ago but it was never used. Now that she needs dialysis, it is not working (maybe blocked?). So they are using some kind of line inserted into her neck.  This is a normal routine for people starting dialysis without a working fistula.  It does not usually represent a danger for people with heart problems.  I know several people who have quite severe heart conditions who have been dialysing for many years.

In fact, dialysis is a key treatment: kidney failure results in fluid build up, since the fluid cannot be removed.  This excess fluid puts great pressure on the heart, and dialysis acts to relieve this pressure by removing the fluid.

With regard to the blocked fistula causing heart problems, it is unlikely.  Fistulas can become blocked when they are not in use, especially if you have some residual kidney function.  For example, many people who have transplants find that their fistula blocks up.  Rather than being soft and spongy, it becomes quite hard, with clotted blood.

If it needs to be unblocked (like your mom’s), there are typically two ways to do it:

1. If there are small clots, they can be softened and eliminated by inserting a balloon into the blood vessel
2. If the clot(s) is large, they bring out the big guns: either a specially designed device called a Percutaneous Thrombolytic Device that uses small wires to gently break up the clot, or an Angiojet, which sprays a saline solution directly at the blood clot breaking it up, and vacuuming out the bits.

Both procedures are done in radiology, typically via ultrasound, while you are awake, with a local anaesthetic.  The balloon or other devices are inserted into the fistula via a needle not much thicker than a dialysis needle.  I have had the balloon treatment.  It is not painful, but it feels strange, with all that pumping and prodding going on while you watch.  I must admit that I was nervous of the balloon bursting the fistula wall as the pressure grew, but they were very careful and all was well.

With regard to your mom’s chest pain, I don’t know enough to say anything but the most general comments.  Heart pain is not usually related to dialysis or a blocked fistula, but you should ask your mom’s cardiologist as soon as you can.

My BigD Experience, by David in Malaysia

David dropped me an email through the week, and I am delighted to reproduce it here.  His experience has been like most people once they decide to get started – health giving and not the drama they expected.

He also gives us the address of his dialysis unit, recommended for travellers to Malaysia.  Thanks David, it was great to hear from you.

Hi Greg,

Came across your blog recently from a search on Google. I’ve recently started dialysis and just turned 41 years old. Like you said, kidneys have let us down. Initially I was very depressed knowing that I have to depend on the “Big D” to live, but after the first few times and my health had improved a great deal, I was glad and thankful that I started dialysis. It was no fun though and I don’t like the needles. I keep telling my doc that I still have hope that God can do a miracle on my kidneys, he just smiled.

Anyway, I thought I’d like to share with you that if you are planning to visit Malaysia, Kuala Lumpur in particular, you can visit the place that I am doing my dialysis, it is a cool place The nurses are friendly and funny, joking with the patients, and the Medical Centre is modern and well equipped, and the costs are not expensive.

Here are the details:

• Name: Sunway Medical Centre
  
• Its Dialysis Unit (currently has 21 day machines):
  
• Its in-house Nephrologists

It is great of you to start your blog site, very encouraging to me.

Take care. Warm regards,

David

More answers to questions next post.

Greg

Holiday Dialysis in Brisbane – a restful break from the routine

Last week Julie and I went to Brisbane for a short holiday around a long weekend.  As any member of the BigD club knows, this meant some pre-organising.  We decided to go about six weeks ago, which is when I raised it with the Chris, the ever-obliging Manager of my BigD Unit.

There are two dialysis units I know of in Brisbane, one at the Greenslopes Private Hospital and the other at the Wesley Hospital in Auchenflower.

I chose Greenslopes because it used to be a Repatriation Hospital for military personnel, and I had good experience with the Concord Repat when I was in the navy.  Good experience?  I met my future wife there!  It was better than good.

The Repats have an interesting history, which I am happy to share.  The federal government established military hospitals in all states during WWII, to look after injured servicemen and women returning from the various frontlines around the world.  They were:

• Prince of Wales Military Hospital in Randwick (1915, for WWI veterans), until the newly built Concord Repat in Sydney (1953)
• Repat Hospital Hobart (1921 on, for WWI and WWII veterans)
• Adelaide Military Hospital at Springbank in Daw Park, Adelaide (1941)
• Heidelberg Military Hospital in Melbourne (1941)
• Greenslopes Military Hospital in Brisbane (1942, just after Pearl Harbor was bombed)
• Hollywood Military Hospital in Perth (1942).

All were renamed Repatriation Hospitals after WW11, with a primary role of supporting returned service people.  In the 1990s, all were either merged with state hospitals or sold off to become private hospitals (like Greenslopes).  Hence, though it bears no resemblance to its previous Repat incarnation, I chose Greenslopes.

The BigD club from the practitioner’s viewpoint is a small one.  Most people, doctors, nurses and technicians who have been working in dialysis for a while get to know everyone else, either because they work with them, coordinate various activities between institutions, sit on committees or boards, meet or present papers at conferences, change jobs or just coordinate patient holiday visits.  Whatever the network she used, Chris arranged my Brisbane visit within a couple of days.

It is difficult to stick to your routine when you go on a BigD holiday to another unit.  Most units I have visited won’t allow daily dialysis; they have too many patients and thus not enough empty spots.  My five day per week routine became a one day on, one day off routine, which I found difficult, since I had to always watch my diet and fluid intake.  No relaxing on this dialysis holiday!

Still, I presented myself at the Greenslopes dialysis unit at about 1:45 pm on Saturday for my first run, scheduled for 2pm.  It is a fairly big unit, with about 20 seats arranged in bays.  They were expecting me and all was ready to go. I was on within 15 minutes, had a good run and departed just over three hours later.  There is always something you can learn when you are visiting other units.  Two things stuck in my mind here:

1. Each unit serves a drink sometime through the run.  About ten minutes after the tea and sandwiches at Greenslopes, they come around again with pikelets!  Butter or strawberry jam? I chose the jam.
2. Chris, my nurse for both runs, had a great way of folding the gauze used to stop bleeding when the needles come out.  It was almost too fast to see. Lots of triangles and wings, and wallah! a 1 cm square pad ideal for focussing pressure on a small area. (If I go there again, I will take a video!)
3. One thing I can’t understand.  It must be known to everyone how uncomfortable, sticky and sweaty it is to sit for 3-4 hours on a vinyl-covered seat without any cover, not even a sheet.  I know I am biased, I deeply missed my lovely lambswool seat cover AND sheet.  Just a sheet for visitors next time would make a big difference.  I’d be happy to pay for the laundry.

The Brisbane trip itself was a nice break.  We had a lovely lunch with our daughter in law’s parents, our son and his wife and Harry, our grandson.

And three days in Brisbane is actually enough.  It is a pretty city on a big river.  As far as attractions, it reminds me of a big country town, where most people do things with friends or groups, rather than be entertained by big city attractions.  So most points of interest are confined to the city proper or along the river.  We bought full-day tickets for the City Cat, a catamaran ferry service the plies the river from end to end and got on and off as we pleased.  The walk through the city’s Queen St Mall was good for a coffee and a snoop. Southbank, on the opposite side of the river was full of parks and displays, theatres and art galleries, so we got our cultural fix.  Not a good place for a snack though: all fast food, and salt on anything that sat still for more than a minute.

The second day we felt like being at a beach.  The Big One is 77km south of Brisbane: the Gold Coast.  Sun and surf, and unconstrained development and fast food.   Not too much serenity there!  So we decided on checking out the local coastline, once miles of mangrove, now a suburbia of drained and concreted waterfront views.  We headed to Manly, a waterfront “village” about 20km north of the city.  We drove the Esplanade, checked out the views and the pool, had a coffee.  Then south past lots of developments and new roads and eventually to the pointy end of Wellington Point:  a pretty place that juts out into Moreton Bay.  There is a picnic area with some very old and nicely manicured Moreton Bay Figs, several electric barbeques and a pleasant view into the blue of Moreton Bay.  Also a very large carpark, two boat ramps and a pier cut into the mangroves for the local boating enthusiasts.  Boating is very popular all along the Bayside (mangroves not so popular).

All in all a restful rather than stimulating stay in sunny Brisbane, made possible by my new friends at Greenslopes.  It will take a week or so get back to my normal routine, after which I will begin planning my next BigD holiday (in even sunnier Cairns).

Holiday Dialysis in Mainland China? Not yet, but maybe soon

I’m keen to go to mainland China to immerse myself in the language and get more fluent. The problem is: how reliable is dialysis over there? Here’s what I’ve found so far.

Like me, you’ve probably heard stories about poor quality water, not using new consumables (eg reusing [your own] lines and dialysis cell in subsequent runs, injecting with used needles), and more. I feel very safe in my unit, because I know how seriously they take both infection control and the efficiency of each dialysis session. In fact, I take it for granted; likewise, when I have travelled around Australia, the UK and Europe.

So, what’s it like for the locals in China? Answer, not so hot. At least 240 renal patients per 1 million people worldwide receive dialysis treatment regularly. But according to Wang Haiyan, an expert at Fudan University’s School of Public Health, only about 45 patients per 1 million people in China benefit from dialysis. Kidney disease experts estimate that the renal failure rate in China may be as much as 300 cases per 1 million, indicating that many of these patients are not getting the treatment they need.

The medical infrastructure and the funds for Reliable-Dialysis-For-All is simply not there. In big cities like Shanghai, it’s not so bad, where up to 90 percent of people who can get dialysis have between 10% and 50% of the cost paid by their social insurance. These patients receive on average, 2.6 treatments per week each of about 4.4 hours in length. Which is a little short of what we expect in many western countries.  What’s harder, the remaining 10 percent are self-payers, who receive less frequent dialysis and are less well as a result.

However in more remote areas, half or less are covered by insurance. In these areas, dialysis quality and infection control measures are often traded off for a lower cost service.  The result is higher levels of hepatitis C and other infections and a shorter lifespan.

No one talks about those that can’t afford any dialysis at all…

(This is not unique to China. Other countries without a national health system have the same problem. Many uninsured dialysis patients (often recent immigrants) in various cities across the US have nowhere to go. Their very survival relies on the grace and favour of local hospitals that are prepared to take them on, at least for an interim period.)

So what about holiday dialysis for visitors? Many people I know won’t dialyse in China. They dialyse in Hong Kong, fly into China to do their business, sightseeing, etc. and fly back for the next session.

However, I would really like to test the local system.  Luckily I have a friend in China who can find out exactly what the deal is for dialysis on the mainland, especially in big cities like Beijing and Shanghai. I am pretty sure it will be OK for a short visit – a week or so… maybe.  I hope to arrange to go there for Chinese New Year late in February. We are in the early days of setting things up: my unit’s people will speak to your unit’s people, etc.

I’ll let you know more as things progress.

Postscript: further news about the problem in funding dialysis for communities, like me you may have been following the difficulties for Grady Hospital’s Dialysis Unit in Atlanta, USA over the last few months. With no dialysis funding available for undocumented immigrants, Grady outpatient dialysis unit was closed on 4 October 2009, affecting 40 dialysis patients, some of whom have already died.

Guest Post: Our Holiday Dialysis cruise to Vanuatu

This guest post is from a good friend and BigD club member, Max Smith.  Max and his wife Carol went on a holiday dialysis cruise last October.  Read on…

It was in Sydney on Sunday 12 October 2008, we boarded the P&O ship Pacific Dawn to begin the trip of a life-time, an eleven night south pacific cruise to Vanuatu and a number of small South Pacific islands.

P&O Ship Pacific Dawn

Prior to my commencing dialysis Carol and I had travelled to many parts of the World but our most memorable holidays were those we spent cruising. We both thought those holidays were over for ever until I joined the Dialysis Escape Line Australia (DELA).

I applied to travel on a cruise to Vanuatu, having read about it in one of DELA’s brochures posted to home and the dialysis unit. After a quick process our application was successful and in early October our tickets arrived. My dialysis requirements had been faxed, by the NUM of my unit, to Nancy in South Australia. Everything was set to go. Whilst I have dialysed away from my unit in the past, I was still apprehensive about the conditions for dialysis onboard the Pacific Dawn.

From the time we got on the plane everything was extremely well planned by the DELA team. The coach transfer from our plane to the ship was well done. We had priority boarding so there was no need to stand in long queues. This was a blessing for me because I had experienced oppressive conditions on more than one previous occasion.

We were onboard the Pacific Dawn by 11:30am after travelling from Melbourne. Lunch was available in the café bistro immediately and we settled into shipboard life very quickly. At 2:00pm I went to meet the Nephrologist (Dr Alan Parnham) on board for the cruise and found four brand new dialysis machines up and running, connected to a portable RO water supply.  Five new machines had been purchased with money raised by DELA through donations and fund raising functions.  I was amazed that so much work had been done so quickly.

All the mod cons: dialysis machines, comfy chairs, port holes…

It was here I met the technician Joel; he was onboard to look after all the machines for the voyage.  Joel is a very capable young man and very friendly. Enzo was there along with the two nurses, Di and Tony, who would look after the 12 dialysis patients.  I later met the NUM Mada Brinkman a very warm and friendly person.  The entire nursing staff were very capable and made dialysis onboard the ship as good as I would normally have.

The ship sailed at 4:00pm and we glided through Sydney harbour, under the bridge and past the Opera House.  The sun was shining and it was a wonderful opportunity to take photos and video to show family at home.

We had three straight days at sea with gentle winds and plenty of sunshine before arriving at our first port Luganville.  It was here that we first saw rain.  At times it was torrential and then it would stop and the sun would come out.  The weather did not stop the locals from setting up stalls beside the ship.  There were dancers and singers as well as the usual hats, tee-shirts and wood carvings.  The ship’s daily news paper advised on what was suitable to bring back on board.  Some groups went on tours around the island by car, others managed to find high quality restaurants to have lunch.

Our second stop was Wala, a small sandy atoll with beautiful clear crystal blue water like you see in all the brochures.  The water temperature was about 24°C and many people went snorkeling.  The locals had small outrigger canoes to take visitors for a ride and the ladies had their hair braided for a small fee.

Getting ready for a run ashore...

A visit to Port Villa was next. The temperature was in the low 30s and humidity was 90%. The locals were lined up in vans to take people on tours around this beautiful area.  One of the most spectacular sites to visit is the cascade waterfalls about 45 minutes drive from the ship. Duty free shopping is a must here particularly for liquor.

Mystery Island and the Isle of Pines were wonderful but what struck me most was the hospitality of Enzo his wife Maria and his team. We had dinner on our own some nights but frequently chose to dine with all the others because of the family like atmosphere.

My BigD room with an everchanging view

Mada and her nursing staff made everyone feel comfortable and the dialysis sessions of a morning included my choice of meal for breakfast along with anything else required.  Dr Alan Parnham made sure everyone was well and dialysed appropriately.  He was always available for treatment. We made friends with another couple who dialysed at home and we shared many experiences.  We will continue to stay in contact with this couple and others.

On the cruise you can be as busy or as quiet as you like and there is no pressure to do either.  The food was wonderful with plenty of choice for the fussiest eaters.  It is a wonderful holiday for the patient and partner, everything is done for you.  Once you unpack you cases you can sit back and be waited on.

On leaving the ship back in Sydney the priority treatment continued through immigration and customs before meeting Nancy who was waiting to board the next cruise with 12 new patients.

I can’t speak highly enough about the way in which we were treated.  For Carol and me it was our dream holiday come true.  It just proves that life can continue to be full and enjoyable even on dialysis.  You don’t have to stay at home forever.  Thank you to everyone involved for making this opportunity possible.  Our trip of a lifetime lived up to our expectations thanks to DELA.

Max Smith

Dawn

Dialysis and Holiday Travel

Before the BigD, one of the things I looked forward to was a holiday – overseas, interstate or whatever – an opportunity to get away from the day-to-day and recharge.

But when I started the BigD, I thought travel was off the agenda.  It would be just me and the machine, 5 days per week, no break, no escape, forever.

But no.

Julie and I had long planned to take our children to Europe while they were still young.  About a year after the failed kidney swap, the stars aligned.  We inherited some money, both of us could get time off, we had friends to stay with.  So we made our plans, set the dates and bought the tickets.

Contacting Dialysis Centres

It was (and is) actually not that difficult to arrange holiday BigD.  We used Global Dialysis, a UK website that listed dialysis centres around the world.  It was far from complete then, but it’s terrific now.

We contacted the centres in the places we planned to visit (initially by email, and sometimes a follow up by phone or fax) and booked me in.  I planned to dialyse every second day, so in most cases, we arranged to travel on non BigD days and to stay put on BigD days.  Once these arrangements were set up, I handed the plan and contacts over to my Dialysis Centre, who exchanged paperwork and reports, etc with each unit.  I also got a letter from my doctor, which I carried with me just in case the paperwork went missing or there was some emergency.

Payment

There is a big difference in cost between dialysing in public vs private units.  Australia has reciprocal health care agreements with United Kingdom, Ireland, Finland, Italy, Malta, the Netherlands, Norway, New Zealand and Sweden.  So in theory I could dialyse for free in public units in any of these countries.  However, it is often not possible to get into the public units because they are always busy.  It seems to be the luck of the draw, but it’s worth asking: I’ve dialysed for free in both Ireland and Italy, but no success elsewhere.

So in general, unless I have ironclad guarantees, I go to private units.  A private unit charges at least $US250 per treatment, sometimes much more.   Check before you book.  Some health funds refund part of the fee (usually up to the amount they pay for your treatment at home).  I think the best way to look at these payments is as another cost of travel.  BigD travel is more expensive that healthy travel: that’s just how it is.

Medications.  Go to your local pharmacy and get you meds set up in a series of blister packs.  It’s cheap, safe and simple.

In addition to international travel, there are also plenty of local holiday opportunities.  For example in Australia: dialysis cruises, holiday homes and in  New Zealand.

For holiday details in your country, go to Google and type in “Holiday Dialysis”.  Get going.  You won’t regret it!