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). (more…)

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!