International Travel Tips on BigD – an update

1-img_3565International travel is fabulous:  new worlds, new food, new language, new experiences, adventures and delights.

Of course, international travel can also be a little daunting. Once you step outside your door, your supports: your language, your local knowledge, your contacts, your comfort zone, disappear.  You are in the hands of others for the simplest of activities, from getting around, to eating, drinking, sleeping, going to the bathroom, and especially dialysis, because we all need our regular BigD fix, no matter what.

So preparation, planning and once you arrive, vigilance are the orders of the day(s).

Our last trip, as readers of this blog, will know was to Lisbon, Madrid and London for the 2016 Diaverum Global Dialysis Conference.

Apart from the great time we had, I learned a few (more) lessons about dialysing in foreign lands, and I’d like to share them with you.

Arranging Dialysis

As any BigD-er who travels knows, arranging dialysis is not a trivial exercise. Getting units who don’t know you from Adam (or Eve) to make room in their already busy unit needs a little dedication and some negotiating skills. Your Unit Manager is the ideal starting place (see eight steps to scheduling your dialysis for details).

If you are travelling to non-English-speaking countries (like Portugal and Spain), ask for an English-speaking contact in your first email.  You will also need someone at your end who speaks the lingo, at the very least to check that the arrangements being made are the arrangements you want.

This was my second dialysis holiday to non-English-speaking countries – the first was China – and I thought I knew the ropes.  But no.

China was a short stay (a week) and all dialysis was at the same unit. This time, I was away longer (15 days) and I dialysed nine times at four different units: two units in Lisbon, one in Madrid and one in London.

I had forgotten how stressed I can get when I don’t know the people or the unit I am visiting, whether it’s down the road or on the other side of the world. So I usually check everything with the nurse putting me on and confirm all the settings and pressures are as I like it.

But some units in Lisbon and Madrid, nurses only spoke their home tongue and I was stopped before I began. I found this very stressful.

Hot Tips

  • Minimise stress and worry by minimising the number of different units you visit. Getting to know the staff and the quirks of each new unit is highly stressful.
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    May  I have a glass of ice please?

    If possible, minimise the number of units you visit that don’t speak your language. While most have someone that can speak basic English, there is no guarantee that they will be available.  Trying to ask simple questions, like “What is the wireless password?” or “May I have a glass of ice?” can be very difficult and frustrating.

Here the Google Translate App can be very useful, especially if you type out a few standard questions ahead of time.  Just call up the translation and turn your phone into landscape mode: the message will appear in huge letters that can be read from across the room.

  • Some units are less accommodating than others. Ask about any requirements you have (they may be standard in your unit, but against some policy in the one you are visiting).  For example, in the Fresenius unit in Madrid, when dialysing at dinner time I was not allowed to eat anything (no matter that I have eaten dinner on dialysis for 20 years).  To me, “It’s protocol” is another way of saying the unit is organised for the benefit of staff, not the patients – who are paying (€300 in cash – about US$343) for the privilege.
  • Keep up your protein intake. Be prepared for different food and if you don’t like what’s on offer, make sure you eat something else that roughly equates with what you would normally eat.  The alternative is skipping a meal or two, which combined with the additional exercise you get just by walking around will results in you losing weight without realising it.

All of a sudden your blood pressure rises, and doesn’t go down after dialysis, because your base weight has fallen.  In my case, I lost 2 kilos during the first week and I couldn’t work out why my BP was so high.  Once I realised, I reduced my dialysis base weight and my BP returned to normal.

  • Go to units with good lighting that you can control; this makes sleeping and using a computer less of a struggle
  • Find a way to keep your EPO/Aranesp refrigerated. Unrefrigerated, it will last only 7 days. If you run out or have to throw it away, you may find it very difficult to replace.

The Reward

Lisbon and Madrid turned out to be just wonderful. I had very little prior knowledge of them, especially of Lisbon. I knew from Casablanca that it was neutral during WW2 (that’s where Ilsa and Victor Laszlo went to escape from the Nazis!), but not much more. So before leaving, I read a great history of Portugal, called “Conquerors: How Portugal Forged the First Global Empire” by Roger Crowley. It was quite an education, and I was keen to see all the historical places that spawned the age of Discovery.

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But Lisbon is so much more than that.  It is a mediaeval city 1-img_3303surrounded by 18th to 21stcentury modernity.  Tiny trams on cobbled streets wind around the seven hills that embrace that beautiful city. Early morning walks through deserted streets and stairways with brooding clouds over earthquake ravaged cathedrals; evening promenades through the bustling and musical Latin nightlife. The views over the city from the high points reminded me of Malta on the Med with the red- tiled roofs, pastel coloured walls and wrought iron balconies. And a surprise and adventure around every corner.

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Though we were there only a couple of days, Madrid was as bewitching.  Sipping red wine while watching passionate Flamenco dancers on a tiny stage in a tiny café. Night walks where everything was just starting, every tiny shop and café open, people walking in groups, singing, dancing and eating. Beautiful architecture and broad vistas never far from amazing plazas packed with life.

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London was its usual dynamic, delightful, spectacular self.

What’s not to like about international holiday dialysis?

Planning a Dialysis holiday: Part 2

HawaiiA few weeks ago Yang wrote and asked for some advice to help her better plan and prepare for her trip from New Zealand to Hawaii.

Of course, planning is the key and involves five areas: arranging dialysis, getting there, having a place to stay, managing meds and doing stuff.

 

Arranging Dialysis

As BigD club members, this is always step 1.  No point going anywhere if I can’t dialyse (more…)

Dialysis and Fluid Restrictions – Tips and Tricks

This week, a guest post from Ros Ball, Past President and currently Secretary of DATA, the Dialysis and Transplant Association of Victoria (Australia).  You may remember Ros when I wrote about her in June a couple of years ago.  She and her husband Charlie have outfitted their caravan with a dialysis machine and travel where most BigD-ers fear to tread:  the wide open spaces of the outback.  Ros’s get up and go, regardless of the demands of BigD is an inspiration, and puts the rest of us sometime travellers in the shade. (more…)

Finding a SAFE Holiday Dialysis Unit

I recently received an email from Ron asking about tips in planning a safe dialysis holiday.  I hope the answer encourages Ron and other members of the BigD club to take the plunge.

Hi Greg.  Your blog was recommended to me by Colette at Kidney Health Australia.  After reading some of your blogs I am inspired to try and do what I always wanted to do when I retired (travel) but have been reluctant to pursue because I have had to go on dialysis after my transplant was compromised due to the treatment for a couple of opportunistic infections.   (more…)

Dialysis travel tips

 

Rockingham

Rockingham Foreshore

I’ve just been interstate for a week.  Julie was doing some work in Perth, and I went along for the ride (Have computer, will work anywhere!).  As with all travel when on the BigD, preparation is key.

 

Firstly, I needed to make sure I could actually get dialysis there.  Second, that I could get dialysis the way I am used to it.  Third, that I had all my meds.  Fourth, that it was easy to get to. (more…)

Arranging International Travel Dialysis

1-Guilin1I’ve decided to try another trip to China, as part of a business trip.  My last effort ended badly, when I tripped on slippery tiles on a Hong Kong footpath and fell on my fistula.  It scared the hell out of Julie and me, thinking I had a life-threatening injury in a foreign country, at risk of bleeding to death where I fell.  Luckily we were already on the way to a hospital around the corner for dialysis, and more luckily, they found I had bruised but not ruptured the fistula.  All was well, but the doctor suggested we delay our trip to Beijing.  We cut the trip short and came home.

Well, here it is, almost 2 years later and Julie and I are ready to line up again.  This time, we plan to go to both China and Europe for a few weeks in April/May.  We will start with a direct flight from Melbourne to Beijing, stay about 5 days, and then fly to London to do some work and catch up with our No. 2 son. (more…)

Dialysis Emergency List: What to keep with you.

Firstly, my heart goes out to all the people affected by the March 11 earthquake and tsunami in Japan.  While the earthquake injuries were much less that from the 1995 Kobe earthquake (due to more quake-resistant buildings), the death toll from the tsunami has been huge.  To date, more than 7,300 people are confirmed dead and 10,947 are missing.  The tsunami has also damaged power plants in Fukushima north of Tokyo: the Daiichi and Daini plants, with six and four reactors respectively.  In addition to the serious radiation threat, there are also major power outages, which could last until the end of April.

While this has caused the lights to dim in Tokyo’s Ginza, further north, 800 dialysis patients in Iwaki city in Fukushima prefecture had to be transported to Tokyo by bus to find treatment.  Imagine that.  800 BigD patients descending on a city already operating at full dialysis capacity.

It was the same on a smaller scale in New Zealand: on 22 February the Christchurch earthquake just about levelled the city.  Within 30 hours, all 42 local BigD patients, a nurse, family members and carers boarded a Royal New Zealand Air Force 757 bound for Auckland on NZ’s north island.  Within a day, they were set up for regular dialysis in Whangarei, Auckland, Hamilton and New Plymouth.  Two others were dialysed in Dunedin (south of Christchurch).

A few weeks before that the floods in Queensland had a similar effect: the flood water cut not only roads but electricity and water supplies.  BigD patients had to travel large distances to unfamiliar dialysis centres and hospitals.

What would you do if something happened that stopped you getting to your usual centre? What would you take with you?  How much do you know about your dialysis treatment?  Sure, you know how long each run is, but do you use a low-flux or a high-flux membrane?  What size dialyser? What dialysate, which anticoagulant?

If you dialyse at home, you will probably be able to answer all these questions and more.  However, if you dialyse at a centre or a hospital, maybe you haven’t taken much notice?  I know I didn’t until I decided to travel.

Now, I have a small list of things I need when I go to a new unit.  I know that my unit usually liaises with each unit I visit and most of the time it works seamlessly.  But now and then something comes up that is not written down.  When do I stop my heparin?  What pump speed?

The list, which is an Excel spreadsheet you can download, looks like this:

Sample BigD Emergency List

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

In addition, I keep a copy of my most recent (monthly) lab results.

As I said, I began keeping this info with me when I started travelling.  However, after the disasters that have happened over the last few months, I think it would be a good idea for all us BigD members to keep this kind of list.

And with the advent of excellent online storage tools like Dropbox, anyone can now store this info on a spreadsheet online.  Mine is available to me from any internet-connected PC and on my phone, so I don’t need to actually carry a hard copy with me if I know I have internet access (however, if I am going overseas, I take a hard copy with me).

You never know when you’ll need it.

What does dialysis and a kidney transplant cost?

I had an email through the week from a thirty-something mum looking down the barrel of kidney failure and dialysis over the next couple of years. In addition to coming to terms with the illness that is causing her problems, she needed some practical information about the finances of treatment.

“What is the cost !! of both Dialysis and a transplant (should I be lucky enough)?” (more…)

Choosing the Ideal Dialysis Unit – Part 2 the Keystone

A couple of weeks ago I wrote about what to look for in the ideal BigD unit. One critical task I didn’t mention, because it deserves a post of its own, is to check out the keystone, the person who runs the unit.

I’ve been spoilt. I’ve met the best, and measure everyone else by her. Unfortunately, like all good people, she died young. (more…)

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!