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.

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 to 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.

For the last 6 months or so, I have been placing my needles on the two crests of my fistula, for ease of access and to help keep my fistula arm relatively unencumbered (so I could type and generally do things with both hands).  The total distance between the two points was a little over 6cm (2.5 in).

In the back of my mind I wondered if this was a little too close and that maybe there was some recycling going on in the space between the needles.  That is, clean blood from the machine entering by body via the venous needle was being sucked back to the machine by the arterial needle, rather than being circulated to the rest of my body.

If that was the case, my dialysis efficiency would not be as good as it appeared.  The volume of blood processed would be fine, but unbeknown to me, not all of the toxin-laden blood was being cleaned while cleaned blood was being re-cleaned. If this was the case, I would feel gradually less well as time progressed (because I was being underdialysed), even though I put in the time.

I don’t know if was my imagination, but over the last month I was feeling gradually less well.  Tired, aching bones: the usual when you don’t get enough (dialysis).

Good and bad needle spacing on the fistula

So about a week ago I decided to move the sites further apart – in fact as far apart as comfortable and possible, which ended up being 22cm (8.5in) – I wanted to be sure I was getting the best dialysis possible.  See the pic.

I still want to use buttonholes and blunt needles on these new sites, but for the first 10 days or so, I must use sharp needles, to start creating the “tunnel” at each site.  This is a bit of a pain initially: with new sites it takes a while to find the best spot and the new holes tend to bleed a little until the needle is fully in.  This is because both are old sites, with lots of scar tissue that I used a lot before I switched to buttonholing.  However, now after a week, the sites are becoming a little tougher and easier to use.  I will try blunt needles for the first time around the middle of next week.

I am still getting used to having less movement in my fistula arm.  Especially while I am using sharp needles, bending my elbow too far may result in a puncture at venous needle site, in the fistula wall and a Blowout”.  Not for me thank you.  I am perhaps a little over-protective, but things will change when I graduate to blunts next week.

But there is good news.  I am feeling fitter and healthier.  No so many aches and pains, and I have more energy.  As far as I am concerned, this is good enough evidence that the needles were a little too close.

With the BigD, it the same old story: don’t get complacent; keep looking for improvements; you are sure to find them.

By the way, my video series of the month is Lost.  I started Boston Legal, Series 1 in December, which I enjoyed immensely, but I decided to have a break and started Lost in January.  I’m now at Series 5 and soldiering on.  It is great as long as you can suspend any modicum of disbelief, which I can and do with pleasure. Especially during my not-bending-my-elbow period.

My all time favourites so far are Arrested Development, and Battlestar Gallactica for Sci Fi.  Fortunately, there are lots more to come so favourites may be a moving feast.

I had a really interesting email from Sarah in Nebraska last week.  It’s interesting because it demonstrates how bad things can get if you don’t get the dialysis you need.

Sarah: Hello Greg, I stumbled onto your website tonight and was hoping you could give me some advice on my son John’s dialysis. He is 25 and has been on dialysis for a year and a half….He had a heart transplant when he was 21 months old and the anti-rejection drugs destroyed his kidneys…Now he is on the transplant waiting list and we are still doing in-center hemo…We are going to switch to PD in a couple of months…If you are still updating your blog and you get this will you please let me know ?  Maybe you can help us…

Thank you, Sarah.

BigD: I said I would be happy to help.

Sarah: Greg, Thank you very much for answering…I was reading your blog and saw that you exercise and seem to be pretty healthy despite dialysis…that has not been our experience with John…He has lost over 20 pounds because of never-ending nausea ..he has all but lost his appetite, he is weak and now they tell us at the center that he is malnourished…

That is why we are switching to PD.  Many people have told us that it is much easier on his body especially his heart.  And it is supposed to stop the nausea and help him regain his appetite…

I was just wondering if you have had experience with the nausea and loss of appetite…and how you are able to exercise and have the energy you have…

I am very worried about my son.  Of all the people in the (name withheld) Center where he goes he is by far the youngest.  I don’t think there is one person under 60 there, but not one of them has the problem with the loss of appetite and nausea that John has.  He has had an endoscopy to rule out other problems as well as other tests…I’m just at a loss as to why he is not doing well and so is the nephrologist at the center.  He has many doctors but none of them so far have been able to find the reason why he is sick….

I was hoping maybe you had heard of other patients who had his problem…

Maybe the PD will solve all his problems…I certainly hope so.  Also how often do you exercise now and how did you get started?  Do you have a fistula in your arm?  And if so does it hurt your fistula to lift weights?  I’m sorry for all the questions and I very much appreciate you answering me..

If you have had any friends or known anyone who had the same problems with hemo as John does I would love to hear from you ….Take care and thanks again.  Sarah

BigD: Sarah, I have asked people whose knowledge I respect about this and the first thing they said was that failing to gain weight, nausea, etc. are classic symptoms of under-dialysis.  How long does John dialyse each week?

To get (and stay) healthy he should be dialysing for 12 – 15 hours per week, either 3 times per week for 4.5 or 5 hrs or (like me), 5 times per week, 3 hrs per time.  The 5 times per week is absolutely the secret of good health.

If John is not getting the time on the machine that he needs, for whatever reason, he will continue to be unwell, and could get worse.

If John is getting his 12-15 hrs, then the next thing to look at is his fistula.  It may have a blockage that is not obvious to you or the staff.  You can get it examined via a scan or a fistulagram (I had one recently and mine required surgery – check the blog here for details). Basically they inject a dye into the fistula and watch where and how fast the blood flows through it.  They can usually do most fixes on the spot.

Regarding PD, yes, it is easier on the heart, but it is less efficient.  However, if it means he gets more dialysis than he is at present, it should help him improve.

Sarah: Well that certainly makes sense Greg…John is on for 4 hours 3 times a week right now at the center.  But he is so sick that he only makes it 2 days a week on average…so he gets about 8 hours a week dialysis….We are trying to get him there every day he is supposed to be but its hard…He has been sick since his first treatment.

But he did go in and get the catheter placed in his stomach on Monday for the home PD so I think that he will actually be getting a much better quality of dialysis now than he was, since if he’s sick he can stay in bed and still do the treatment….So we are hoping for good things..

Thank you for checking up on this for me…I do agree that he is not getting enough dialysis…we are working on getting him there every time now.

Anyway thank you very much for answering me…it’s a comfort to talk to someone else who’s in the same situation as John… Sarah

BigD:Thanks Sarah.  That is definitely the problem: John is simply not getting enough dialysis.  It is a real pain, but there is no such thing as being too sick to go to dialysis.  Missing sessions always makes things worse.  John needs dialysis to survive and eventually to thrive.  For the rest of the time before he switches to PD, try to get him there for every session. I am sure you will both notice an improvement after a week or two.

Good luck and please let me know how John goes on PD.  Greg.

I have now been dialysing for 16 years.  During that time I have tried many options and combinations aimed at reducing the time I spend on the machine.   What I have eventually realised is that my aim should not be to reduce BigD machine time, but to do whatever it takes to be fit and healthy when I’m offthe machine.  My 15 hours allows me to exercise, work and play the way I want for the rest of each week.  Anything less, and the week quickly becomes a misery. It’s a pretty simple formula.

December-January are the traditional summer holiday months in Australia.  And very pleasant they are too.  The only hassle is the there is no such thing as a holiday from the BigD: I still need that life-giving treatment.  So taking a holiday during the holidays season needs a little extra planning.

For me, there are two ways to get a break:  1 – take a short trip between sessions and 2 – go somewhere that has a dialysis unit that offers holiday dialysis.

Over the last few weeks I have done both.

Short Trips

Each week I have two days off the BigD, Friday and Sunday.  In both cases I dialyse the following day at 7am.  That means Julie and I can hop in the car straight after the BigD on Thursday or Saturday, go somewhere nice, stay the night and drive home the afternoon of the following day.

We had two of these short trips over the last three weeks: one to Falls Creek Alpine Village (see this post) and one to Inverlock, a beachside town on the Gippsland Coast, about 1.5 hrs from home.

Inverloch on the coast

It is a beautiful little place, with good coffee shops and a fantastic stretches of surf beach.  I’m not a surfer, but luckily I’m a coffee drinker!  And I like to watch the ocean on the shore and walk on the sand.  I can’t do these things at home, so it qualifies as an instant holiday.  The fact that our grandchildren were holidaying there was an added bonus.

Short as it was, it was still a genuine break, and I was away long enough to miss my bed (though that may have had something to do with our grandson and his early rising habits).

Holiday Dialysis

Beautiful Metung

Last week we went on a longer trip, to Metung, about 4 hours from Melbourne.  It is a tiny village nestled on Lake King on the Gipplsand coast, facing the Tasman Sea and New Zealand, about 1,200km due East.  It is a beautiful place with lots of boardwalks, water views and an excellent coffee shop and bakery.

What’s more it’s only 20 minutes from Bairnsdale, the largest town in the region and luckily, the home of the Bairnsdale Dialysis Unit (part of Bairnsdale Regional Health Service).  It is a busy 6-seat unit, open six days per week.  They are about to expand to a new unit that will have 9 seats.  They offer holiday BigD given sufficient notice (in my case, one of the regulars went to Melbourne for a holiday, and I had her chair).

It is a friendly unit, with capable and professional staff who know their business.  Being part of a public hospital, BigD is free to all locals.  I don’t know what they charge for overseas visitors, but with all the lakes, rivers, and secluded beauty spots, it’s worth it!

I was the first buttonholer the staff had seen for some time, so I had a show and tell session on inserting needles for buttonholing.  I brought my own blunt needles (few public hospitals do buttonholing, so if you do, take a supply with you).  The only thing to be careful about is to make sure you tell the staff how the needles should be taken out (at the same angle they go in) or they may press down and pull them out at the wrong angle, damaging the buttonhole tunnel.

I had a great session. It went quickly and I was back at Metung within 30 minutes – in time for a barbecue dinner and a stroll along the waterfront.  We were again part of our extended family, and we spent the evening playing 500 (and winning) and then minding the grandkids while their mum and dad went out to dinner.

We stayed two nights and headed home about 11am Sunday.  Though it was short, getting away was a real holiday and we really enjoyed it.

So much so that we have decided to do it again next week.  We are off to Sydney for the Australia Day break – four days).  I will be dialysing at Lindfield, a northern suburb about 20 minutes from the city and the harbour.  I’ll let you know more about that in the next post.

In the meantime, get out of the house and out of town, if you possibly can, at least for a day or two.  Take a train, a plane, an automobile or a boat: the joy of the new awaits.