Dialysis travel tips



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.

Chris, the Unit Manager at Diaverum in Greensborough helped set up three units in Western Australia a few years ago, so naturally she recommended I go to at least of one of those.  She suggested the unit at Rockingham, about 50km south of Perth, because it’s a beachside town and we were planning a few days off, ideally at the beach.

She checked for me: were there times available for me to dialyse five times per week, using the buttonhole technique?  One thing I didn’t want was to drop back to three days dialysis per week (from five).  Dropping back would have meant a much more restrictive diet and fluid intake, which I definitely didn’t want if I was on holiday.  Five sessions cut into my holiday time, but as usual, I think it’s worth it.

The manager at Rockingham confirmed, after some rearrangement (thanks Lois)  that I could maintain my routine of five days dialysis per week.  Excellent.

However, they don’t do buttonholing.

I have been caught out on buttonholing before.  Back in May this year, when I first dialysed at the London, Diaverum Forrest Hill unit I naively expected that they used the buttonholing technique.  But no.  So they had no buttonholing equipment (blunt needles, etc).  I had little choice but to use their sharp needles.  Panicking, I foolishly thought I could put them into my lovely, beautifully formed buttonholes.  They went in really well, but not via the tunnels.  They cut their way in, scoring a new path through the tunnel walls and the fistula, ruining the buttonholes I had nurtured for about six months (they can sometimes last for years).

The next day I started new buttonholes in a different part of my fistula.  It took about two weeks using sharp needles to form vague track to the fistula.  By then I was back home where I used blunt needles to reinforce the track and push through the unhealed hole.  After another few weeks, the buttonholes eventually firmed up and worked as they should.

I could have avoided this hassle by either asking the question and bringing my own needles or by not freaking and using the sharp needles away from my buttonholes.  Yet another lesson for the travelling needler.

So this time, I collected enough blunt needles, scab removal needles and swabs for five runs, plus one additional backup run, just in case.

With regard to meds, since I would only be away a week, I packed my pill organiser with a week’s supply, and then added enough for two more days, in case of a delay getting home.  I also arranged to have my Aranesp (like EPO) just before I left and (since I take it weekly) to have it again during the first run on my return.  That way I didn’t need to take any with me.

I have stuffed up before with meds too.  When we went to London for four weeks, I arranged to take four lots of Aranesp with me, and promptly forgot to collect them.  I remembered on the plane: my nightmare became reality.  My haemoglobin was low before I left, so I was quite worried.  I missed out the first two weeks, but fortunately, I was able to get some while I was in Oxford.  So it wasn’t the disaster I feared.  But it was a very worrying time.  Now I make sure Aranesp and meds are at the top of my trip To Do list.

Finally, I checked the location of the unit.  We decided not to rent a car because we were staying at Rockingham beach and not planning to go anywhere; likewise in Perth.  So was the unit close to public transport?  Pretty well.  It’s about 1.5 km from Rockingham train station, a 15-minute walk or a $9.00 cab ride. All ok there.

And it all worked really well. The train was excellent.  I was made very welcome, and apart from an initial hiccup, it was just like being in my home unit.  Even the layout, fit out, and uniforms were the same!

But there are some things you can’t plan for.  Like the Rockingham cabs – called Rainbow Taxis.  Initially, it was a good service.  Then it started to fray at the seams.  One day I booked a cab for 7:45pm to take me back to the train station; it arrived at 7:30pm and charged me $8 waiting time.  I took that on the chin.

The next day I booked a cab to go from the train station to the unit at 7:45am, and a second to pick me up after the treatment at 11:45am.  The cab was waiting when I arrived.  No problem.  I checked it was mine.  Yes, so off we went.  An hour before I finished dialysis I called again to check my booking.  Yes, all fine.  But no cab arrived.  I phoned and was told I had taken the wrong cab from the station and was not a “reliable customer” so how could I expect a cab now?  Dumbfounded, I walked to the station.  Luckily it was my last session (and my last contact with the flaky end of that particular Rainbow).

All in all, good planning made for a very successful BigD trip (taxis can go wrong on any trip so that doesn’t count).  So we have decided to go to Sydney on this Melbourne Cup weekend.  At least that’s the plan.

2 thoughts on “Dialysis travel tips

  1. I am so glad i just found your blog. My mom is getting ready to start dialysis shortly and it is so nice to have a perspective of someone who is living it. I sent your blog to my parents. Thank you so much for keeping this blog.


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