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Julie and I have just returned from a week-long holiday at Port Douglas in tropical Far North Queensland (or FNQ to the initiated).  We went for several reasons: chasing the warm weather (going from 12oC Melbourne to 28oC Port Douglas is a pretty good reason); having a break from work; and spending some quality time with our 17-month old grandson (and his parents!).

Of course the BigD arrangements were the priority. Fortunately, there is a Renal Dialysis Unit in Cairns, 64 winding kilometres from Port Douglas.  After some initial discussion Chris, the Unit Manager at my unit arranged for four sessions (M, WTF) at the Cairns unit.  For some reason they resisted dialysis for all five days, my normal regime.

I dialysed early Saturday morning at my unit and we flew to Cairns in the afternoon.  It takes 3.5 hours, with another hour-plus in the shuttle bus to Port Douglas.  When you step off the plane, you are hit by a very pleasant mix of humidity and the heat.  Right now is tropical winter: the dry season (between May and October), which is the best time to be there.  (Tropical summer is the wet season, between November and April, much less comfortable, hotter and more humid, with tropical rains caused by the monsoons.)

My first BigD session was not until Monday at 2pm, so Sunday was a nice day off, exploring, coffee, babysitting and generally doing not much.  By Monday, I was starting to feel ready for the BigD.  We left on the first of four return trips at about 1230.  The drive to Port Douglas is very pretty, with tropical rainforest on one side and the Great Barrier Reef and the Coral Sea on the other.  Just like on the postcards.

Of course there are the usual blights: “glorious waterfront homes and estates” gouged into the bush, the bays and mangroves in unprotected areas that dot the coast.  One estate was aptly named Canopy’s’ Edge, with homes creeping inland until they met thick rainforest-coated hills too steep to build on.  One office/apartment complex was ironically named “Rainforest House”.

Not that we can talk I suppose, after all, we were staying in a very similar apartment in a very similar location.  However, surely we can leave some untouched beauty for our grandchildren’s children.

Ah, I digress.  My first Cairns BigD was fine.  It started about a half an hour after I arrived and was without incident.  It is a homey unit, with five older-style seats and fairly old Baxter machines that mostly do the job.  All the other dialysers were visitors like me, which seems to be the norm.  This is one of those times when you realise that you really are in a club with a large and diverse membership.  From all over the country and the world, we all go through the same thing, hit the same roadblocks and have many of the same highs and lows.  It is certainly not difficult to be part of the group, either chatting or in silence.

I had the day off on Tuesday and we had a day with Harry (our grandchild) while mum and dad went snorkelling on the reef.  I think we had the better time.

Wednesday, back to Cairns BigD. It was not the greatest experience. My machine broke down and I waited 2 hours for it to be fixed.  All in all we spent seven hours on dialysis that day (one hour either way plus five hours on or waiting for the machine).  The Unit Renal Nurse was mortified and just before the run finally started, the Director of Nursing dropped in two free movie tickets as an apology.  Most gratefully received (and used to watch The Girl with the Dragon Tattoo).  Thank you!

Thursday and Friday’s BigD were fine. On time and hassle free.

In all, we spent 22 hours doing dialysis things.  The rest of the time we were on holiday just like everybody else.  We slept-in every day, wandered the town for morning coffee, slouched around in arm chairs reading and eating whenever we felt like it.  Took walks along the beach, visited relatives and did the occasional short trip into the rainforest.

The only thing to improve is to try to stay a little closer to the dialysis unit next time, but this is a minor quibble.

The big message is that holiday dialysis really is a holiday.  Make the effort and get out of town.

Unit Details:
Cairns Renal Unit
Cairns Private Hospital
1 Upward Street
Cairns  Qld  4870
Clinical Nurse: Sandy Freeland
Phone: +61 7 4052 5167
Fax:       +61 7 4052 5149

... http://bigdandme.wordpress.com/2010/08/16/dialysis-getting-away-from-it-all-or-almost-all/

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I spent the last two weeks checking out my numb/tingly fingers.  My thumb, first and middle fingers have been tingly and at various times numb since I had the fistula rebuild back in February.

I revisited the vascular surgeon who rebuilt my fistula and after examination, he suggested a blood flow review test.

This test was done via ultrasound, where the technician looks at each artery feeding blood into my hand and makes sure it is flowing in the right direction (ie into my hand and not into the fistula).  Two of the three main ones were, and the third mostly was, with a small percentage being stolen by the fistula.

I went back to the surgeon to have the results interpreted.  He said that a small steal was both inevitable and normal, and that it was not enough to cause my symptoms.  He told me to go to my doctor and arrange a Carpel Tunnel test.

About a week later (there was a cancellation!), I fronted up to a neurology clinic for the test.  The test involves triggering the nerves that go through the Carpel Tunnel to see how quickly they respond to stimulus.  The faster the better. If the response is slow, then the nerves are either blocked or damaged.  Carpel Tunnel syndrome is pretty common generally (it affects about 20% of long-term BigD-ers), so they have standard tests with lots of data about what the results mean.

The technician was very experienced. She had the right words to say at the right time and moved efficiently through the testing.  There was even a trainee doctor there to learn all about it.  He also talked a lot.

The tests involve “stimulating” the nerves.  This means triggering small electric shocks at one end and measuring how quickly the shock reaches the other end.  They start with electrodes on the fingers and a receiver just below the wrist.  Shocks are small but steadily increase until they are uncomfortable. But being a macho man, I could handle it.

But that was only the start.  Then she reversed the test direction.  She taped a receiver to my fingers and used a mini-tazer to jolt the nerves into action.  The jolts got progressively bigger until my hand jumped around of its own accord.  Once I understood what was happening, I found myself sweating, heart beating faster, anticipating the next jolt, just like a lab rat only bigger. ( Not so macho now…)

She ended the test with a stream of jolts sent by the computer.  They went on for a very long time (maybe 5 seconds or more!)  It drew sweeping, curving graphs on the screen, which she interpreted for the trainee and presumably for me.  Not great responses: definitely Carpel Tunnel.

As I pulled down my sleeve and started to get out of the chair, she said she was only finished with that hand: now for the other.  She repeated the test and found that the left hand was also a little slow, but nothing like Carpel Tunnel.  Just a little advanced wear and tear, probably on the outer linings of the nerves, probably caused by the BigD.

In came the neurologist to interpret.  Yes, Carpal Tunnel, yes, slower responses in the left arm too.  Carpel Tunnel can be dealt with in three ways:

  1. If it’s mild, live with it.  Exercise the hand and wrist and see how it progresses.
  2. Semi-severe: have Cortisone injections into the tunnel.  This provides temporary and sometimes long-ish term relief.
  3. For severe Carpel Tunnel the best approach is to operate.  It is a relatively small operation, with a very high success rate.  Best to find a neurosurgeon that specializes in this kind of thing, and ideally one who has experience working with fistulas.

Option 3 was what he recommended for me.

OK he said, show me the leg tests.  Oops, wasn’t sure it was necessary says the technician.  Yes, we need a datum for next time (next time?).  So off came a shoe and sock, out again with the mini-tazer and we’re off.  Even more violent jumps and kicks later, it really was all over.

So, now I can add nerve response tests to my list of medical tests, probes, indignities and humiliations.  This one goes with the Not-All-That-Comfortable group (a surprisingly large group).  I have long wished that we were issued a medical passport at birth, and that every test came with a special stamp for the passport (or perhaps a postage stamp sized picture of it being done).  Such memories.  Such bragging rights.
Maybe in the next life.

Well, the next step is to arrange to surgery. More to follow…

... http://bigdandme.wordpress.com/2010/08/02/dialysis-and-negotiating-the-carpel-tunnel-funnel/

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Saturday, 24 July 2010 21:21

Another way to ditch the Dialysis itch

Written by Greg Collette
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Sorry about not posting last week.  Every now and then my real job intrudes more than it should.  But I’m back on track this week.

For the last few months I have been driven mad with itchiness:  my back, neck, shoulders, arms and even thighs.  I’m not talking about a small itch, I’m talking industrial-strength itch.  The kind that wakes you up at night, and makes you scratch like a crazy person when you should be sitting quietly chatting and drinking coffee with friends.  It starts as a little niggle on the thigh or the middle of the back and ends up a roaring itch that won’t stop until you draw blood (well almost).

The first thing I have learned is not to go crazy.  Scratching this kind of itch makes it worse, and it quickly becomes a vicious circle: the harder you scratch, the more it itches.  I have found that the best approach is to scratch a little, then bear the itch for a minute or so, and it goes away.  For a while.

I spoke about it with my nephrologist, who said that it I have too much phosphate in my diet.  And the way to control this is to use phosphate binders like caltrate (calcium tablets you buy off-the-shelf) or a heavier duty med, like Fosrenol.  He upped my dose for each meal to two caltrate and one large Fosrenol.  This is a big dose and should have done the trick.  It didn’t.  All these binders seemed to have very little effect.

I go to a skin specialist about every four months to make sure I have no skin cancers (a bi-product of the meds I take), and I asked him about my itch.  Like everyone else he said that I had too much phosphate, etc.  However he did suggest some lotions that can help reduce the itch:  one was a prescription ointment called Celestone (betamethasone valerate), a mild steroid cream to minimise the itch, to be applied once at night before bed.  Another was an off-the-shelf moisturising lotion called Aveeno which I could apply anytime I had an itch.  Finally, he suggested I use QV Intensive Moisturising Cleaner, instead of soap.

These certainly eased the symptoms of the itch, but underneath it was still there.

Then the Unit Manager of my dialysis unit suggested that I talk again to Karen, our dietician.  I had spoken with her before, and adjusted my diet to minimise phosphate, but to no avail.  This time however, she asked me about all the meds I was on. After discussing each she asked why I was on Somac (Pantoprazole) antacid/anti reflux tablets. I told her it was part of my anti-rejection drugs for my transplant.  One of the anti-rejection drugs tended to cause reflux, and Somac minimised its action.  However, I had my transplant removed about four months ago.

Then she told me the critical thing (bless her!): phosphate binders only work if you have enough stomach acid in your stomach.  No stomach acid, no phosphate binding, no matter how many calcium tablets you take.  And Somac was removing/minimising my stomach acid.

Obviously, I stopped the antacids immediately.  Nothing much happened for the first few days, but slowly, over the next two weeks, the itch has started to back off.  It has not gone completely.  I think it is taking time for my stomach acid to return to normal levels and for the phosphate binders to become fully functional.  But I no longer need the night lotion, and I’m using the moisturising lotion less and less.

But I think I am over this hurdle.

So, another hard lesson re-learned: don’t assume.  Don’t assume that your doctor knows everything; don’t assume that because your meds were right six months ago, they are right for now.

Like liberty, the price of ongoing health is constant vigilance.

... http://bigdandme.wordpress.com/2010/07/25/another-way-to-ditch-the-dialysis-itch/

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