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.

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…

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 12^oC Melbourne to 28^oC 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  4870Clinical Nurse: Sandy Freeland
Phone: +61 7 4052 5167
Fax:       +61 7 4052 5149

Last Wednesday was another trolley ride, this time for a “Carpel Tunnel Release”.  Julie and I turned up at the appointed hour – 0630 – at Cabrini Hospital’s Outpatient Clinic ready for the day’s work.  Like all appointments related to doctors, the 0630 start was to ensure that I would be ready and waiting for their 8am start.  About 0715 a nurse came for me.  She told Julie it would be about 4 hours, so she could go home and they would call. Off I went through the No Admittance doors into the bowels of Outpatients, first answering identity and allergy questions, then changing into disposable undies, paper slippers, gown and robe.  I put my clothes and my book (who knows, I might have time to read when I wake up…) into a locker.

Then to an interview room the same questions (I like to know that they want to be sure, so I was happy to repeat everything).  I was labelled, had a pink band (no blood pressure, bloods, etc.) placed around my fistula arm, then onto a trolley to await the anaesthetist.  He asked questions, old and new, double-checked the answers and departed with “I’ll see you soon.”

About 15 minutes later I was wheeled to the operating theatre: up two floors and straight ahead.  I will never get used to being wheeled to theatre: watching the ceiling lights come and go, heading inexorably towards another roller coaster ride.

Being the first of “five Carpel tunnels” for the day, all the players were still arriving, but all were fresh and friendly.  The anaesthetist appeared and after a moment inserted a tube into a vein on the back of my hand and we were ready.  At 0805 the surgeon arrived. He double checked that the surgery was on my right wrist, that there was plenty of room between the Carpel Tunnel site and my fistula, and that the bandage would leave enough room for me to access the fistula later that day for dialysis.  Then the process began.

The only good bit of the whole deal is when they inject the anaesthetic and tell you to “You’ll be asleep in 20 seconds.”  I was to have a light anaesthetic, just enough “to calm my nerves”.  Ok…  Just to check, I started counting the seconds. I got to 20 and was still awake. First I thought “Hah, it takes more than 20 seconds!” then I thought “Hmm, maybe I counted too fast.”  Then I didn’t think anything. I wish it was that easy at home.

About half an hour later I started to wake up. My right arm was outstretched and much of my head was under a green sheet.  I looked through a crack and could vaguely see a couple of people working on my wrist.  I could feel some poking and pulling, then I lay back and thought of nothing again.

I remember being wheeled from the theatre and to the recovery ward.  I dozed for a few minutes, then began to wake up properly.  I had a drink of nice cold water, rested a while more, then I was guided off the trolley to a seat in the discharge area.

All was well, nothing hurt.  I was a little hungry, and the sandwich and cup of tea was very welcome.  The staff rang Julie, brought me my clothes and my book (I didn’t feel like reading).  I got dressed and walked back into the waiting room.  There was Julie and home we went.  It was about 1130.

I was due to dialyse at 3pm, so I had some lunch and relaxed for a while.  Gradually I could feel my wrist and definitely some pain.  Eventually, the throbbing got the better of me and I took some of the strong pain killers the surgeon subscribed in my discharge pack.

Dialysis was OK.  I felt a little unwell and sore, but the needles went in Ok and the run was fine. I slept for a couple of hours and read for the rest.  That night I was pretty sore and sorry, but with the painkillers, I mostly slept.

The next day was standard for me. For some reason, I always feel lousy the day after surgery.  Maybe the anaesthetic has gone from my system and I can feel the impact fully, or maybe it is a bit of shock. I don’t know, but I didn’t improve until after my second dialysis session. I slept for a couple of hours again, and felt much better.

I was very impressed with Cabrini.  They phoned me the next day to check that I was Ok and to see if I needed anything.  I was in bed at the time, dozing, but I appreciated the call.  They said the pain was normal, to take my pain killers and that it would pass eventually.

It’s day three now, and I am pretty much recovered.  I spent the day back at work. My wrist hurts if I lift things or type too fast (joke), but otherwise I’m on the mend.

With regard to the result, I have heard from several people that you can feel the benefit of a Carpel Tunnel release almost immediately.  While my fingers can move more easily, they still have that pins and needles feeling and are not yet normal.  However, people on dialysis don’t always get the full benefit because the cause may be damage to nerve linings or accumulations around the nerves, both due to the BigD.  Still every little helps, and my hand definitely feels better.

If you are considering Carpel Tunnel surgery, I can recommend (most of) it.

Picture next week, when the bandages are off.

Well, it’s been two weeks since the carpel tunnel surgery, and I now have both hands mostly functional.

I have become quite adept at waterproofing my hand and wrist with a plastic bag and a rubber band (I tend to go for the bags you get off the roll when buying fruit and vegetables – they are a good size, tend to stay waterproof and when put on inside out, are quite clean).  Accompanying this skill has been one-handed showering (and other toilet activities).

However, now that I’m back to two hands, these skills may well fade away.

Carpel Tunnel surgery scar

The bandage came off after three days and the stitches out after two weeks (two days ago).  The cut looks clean and dry and not too ugly, though a little wider than I expected.  It still feels tight, even without the stitches, and both a little numb and sensitive to touch, but otherwise quite functional.

I must say that while the carpel tunnel has not yet departed, my hand feels quite different.  It still pretty well locks up during the night and I gradually get it opening and closing with a little exercise and massage.  The touch is also different but better: still pins and needles but not so much numbness.  Flexibility has improved: I had a big moment yesterday, when with some concentration, I was able to button up my left sleeve, all by myself!  Some people I have spoken to say that recovery can be almost instantaneous; others that it can take up to a year.  I think maybe the second opinion is the more likely.

The surgeon said that I should exercise it as much as possible, opening and closing it into a fist.  Eventually I should advance to a stress ball.  This should stop it locking up in the open position.

For the first time in weeks I went for a run yesterday morning. This is a reflection of how well I feel at the moment. My cold/flu is gone, I’m off painkillers.  The BigD is effective and uneventful:  I’m back to reading, practicing a little Mandarin and in the last hour, watching a video (currently Primeval, which is quite diverting).

I have a range of courses for jogging, starting with the Short and Sweet (twice round the bed), the Getting Back Into It (once round the block – about 10 minutes) and the Just Enough (two blocks and two hills – about 25 minutes). I was feeling pretty up for it yesterday, so I did the Just Enough.  It was a triumph.  I really enjoyed my breakfast: it tastes so much better when I have been so virtuous!  The only down side is that now I have to do at least the same next time, maybe more.

One interesting thing came from the run. Before the surgery, I would run about 10 minutes and my hand would go completely numb.  This time I decided to exercise it as I ran, stretching it flat, then making a fist as I powered (trotted) along.  Then something interesting happened. My body decided to synchronise both activities.  I found that about 10 minutes into the run, my hand would close as I breathed out and open as I breathed in.  It was quite strange, because it felt like I was squeezing a little phantom pump that controlled my breathing.  Squeeze faster, breathe faster; squeeze slower, breathe slower.  I quite enjoyed it, jogging along in my own private world controlling my breathing with my hands (my other had joined in by this stage).

I’m looking forward to my next run, just to see if I can do it again.

Isn’t it strange what you can discover when you do something different?  Whether the difference is forced upon you, or you create it yourself, there’s always something if you take the time to notice it.