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.

Stopping Dialysis: how long before The End?

Getting bogged on a muddy road is not normally a life-threatening situation.  Unless you are driving 475km (300 miles) for dialysis on a muddy dirt road after floods.  A guy in the Queensland outback was doing exactly that three days ago, travelling from Mt Isa to Doomadgee Hospital, a nine-hour trip.  He and three companions, including his son, were travelling along the muddy Thorntonia Rd, a 56km (35 mile) stretch about half way there, when they were hopelessly bogged.

They spent the night in the car waiting for someone else to come along, but nobody did.  They began to worry about the man missing dialysis, now one day late, so early morning two of his friends, a 33-year-old man and a woman (age unknown) decided to walk to the Gregory Downs Hotel 40km (25 miles) further along the road to Doomadgee for help.  They walked all day along the muddy road in persistent rain until they arrived after nightfall.

The hotel staff called the North Queensland Rescue Helicopter, which the following morning picked up the man and his son and took them to Century Mine, 25km away.  From there, the man, now two days late for dialysis, was taken by Royal Flying Doctor Service about 1000km east to Townsville Hospital, where he at last received his BigD treatment.

A great story eh?  His friends must have been really worried.  Should they have been?

Absolutely yes.  Another day or two and he would almost certainly have died.

I have often wondered how long I would have if I stopped dialysing, so I asked our Unit Manager, who has known several people who have decided to stop.  Her answer was immediate: three to five days for most people.

The length of time depends on a few things: whether you have any residual kidney function (I do not), how well you tolerate too much potassium, which causes increasingly severe arrhythmia (irregular heartbeat) and how well you can tolerate the fluid build up (which makes it hard to breath and places great strain on the heart).

The high level of toxins are an unpleasant extra that tends to slow down your thinking and make you feel generally unwell.

Eventually, death is usually caused by heart failure.

Most people on the BigD have had some or all of these symptoms, so they are not all that hard to imagine (I have some pretty ugly photos of me to prove it).  But luckily we have had dialysis available to get us back to some semblance of good health.

To me, this Queensland story is a useful reminder to make doubly sure of my dialysis treatment plans when I go on holiday, or if I travel far from my unit.  It’s the kind of frustrating situation I sometimes dream about, where no matter how hard you try, you can’t seem to get where you want to go (I must remember to dream up a helicopter or the RFDS next time!).

It is also a nice reminder of just how great it is to have good friends.  Yet another reason to hang on to life with both hands.