Another way to ditch the Dialysis itch

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.

Dialysis: stealing blood and pinching nerves

One thing embedded into our DNA as a species is constant self-diagnosis.  We look for patterns, indicators and signs that help us form a mental picture of how the world works and why things happen.  This skill has undoubtedly advanced us as a species: we keep asking why until we find an answer that seems right.

We BigD club members are no exception.  And as far as all things kidney and dialysis go, we are chronic self-diagnosers.  I am currently trying to self-diagnose a problem with my hands, and true to form, I can only say that each wrong diagnosis is getting me closer to the right one.

Up until January this year, I’d had a trouble free fistula for 14 years.  Then I had a blockage that required a fistula reconstruction.  A week or so after this, I found that I had lost much of the touch and feel sensations in my thumb, index and middle finger on my right hand.  My right (fistula) hand became much weaker (unscrewing lids and removing plastics caps has become a real hassle) and less dexterous (to the point where I can’t do up the button on me left shirt sleeve).

My initial diagnosis was the path of least resistance:  I assumed it was probably a temporary nuisance that comes with wrist surgery.  Wrong.  It got more noticeable as the weeks went by: at the gym, raising and lowering weights arms length has started sending small electric shocks down my arm.

Time to reassess. I discussed it with others at my BigD unit and after a little research, I found out about “Steal Syndrome”, which is where the new, larger fistula “steals” much of the blood supply that should flow to my hand.  Steal syndrome is usually related to fistula reconstruction, and can be mild to bad, starting at intermittent numbness going right through to losing the tips of your fingers. My new diagnosis was obvious:  while not common, everything I read fitted the symptoms.

Steal Syndrome must be dealt with quickly to stop any permanent damage.  That means either using a balloon to expand the remaining veins in my hand via an ultrasound, or surgery to reduce the steal using a band or a ligature on the fistula.  As a last resort, the surgeon can close the fistula and create another elsewhere.  None of the surgery options appealed to me, but I knew it had to be seen and treated ASAP, so I made an appointment to see the vascular surgeon who did my reconstruction.

He dismissed Steal Syndrome fairly quickly.  He could feel strong pulses into the hand and my fingers were as warm and red as those on the other hand.  No, he said, this looks more like Carpel Tunnel Syndrome.   While I had heard of this, I knew nothing about it (so how could I be expected to self diagnose it?).  Obviously I have checked it out since.

An important nerve that serves the thumb, index and middle finger in each hand is the median nerve.  It extends down your arm, through a tunnel in your wrist (yes, the carpel tunnel) and into your hand.  If the Carpel Tunnel becomes compressed, it inhibits the nerve’s operation in your hand.  Of course, the symptoms are pretty well the same as for Steal Syndrome, except you get to keep your fingertips.

The big news for me was that it is a common condition for people on long-term haemodialysis (more than a few years).  While it always accompanies Steal Syndrome there can be several other reasons: the Tunnel can become blocked due to calcification as a result of an overactive parathyroid, a thrombosis, for example, underneath your fistula, restricted blood flow to the Median nerve, inflammation or thickening in the joints, etc.  My hand problem fits in there somewhere, and Carpel Tunnel may well be my new diagnosis.

The first step is to do some blood flow tests, and to check things out via ultrasound.  Treatment usually involves surgery under local anaesthetic.  But that’s the next step.  Tests first – scheduled for next Friday.  Hopefully all can be fixed pretty quickly. Provided we get the diagnosis right!

Dialysis, transplants and recovery, taking the long view

I thought I’d write a little about the time it takes to recover from surgery when you hit some speed humps; about expectations vs reality.

It’s now about 15 weeks (12 March) since I had my transplant kidney unceremoniously removed.  About a month before that (17 Feb) I had fistula surgery.  While the fistula rework was reasonably straightforward, the transplant removal was a bit of a nightmare.

Once I finally got home, being the Adonis we all know I am, I planned for a reasonably quick, exercise-assisted return to normality.  I started back at the gym early May, aiming to get as fit as I was in just a few short months previously.  As readers of this blog will know, it was a shock to see just how deconditioned I had become.  I had lost a lot of muscle and body fat and my stamina store was closed for the holidays.

In my mind, my plan was simple: I would resume exercising and after about four months, I would see some change, a slightly less miniscule bicep or quads that could hold my weight all the way through a half squat.  In fact, While there has been some improvement (I can lift weights for more repetitions) I have been quite disappointed at my progress.

So much so, that I filled in a termination notice for the gym and decided I would take up jogging.

That decision coincided with a visit to my cardiologist this afternoon.  I told him my sorry tale and he basically said I had made one primary mistake: the timing of my expected return to form was much too short.

It takes about a year to recover from the sort of muscle wastage that comes when you spend weeks immobilized in hospital.  Muscle growth is normally fairly slow, but with BigD members it can be glacial.  Dialysis screws up your body chemistry, and especially your body-building chemistry, and muscle growth is inhibited.  That doesn’t mean there is no muscle growth or increased stamina, it is just slower than normal.

This made me feel a lot better.  Especially when he hardly mentioned the natural collapse of muscle-building capacity that comes with the years (not yet relevant to me).

So I have changed my mind. I will continue going to the gym, I will take it steady (rather than pushing things too hard) and I expect to start enjoying it again.

I’ll let you know what happens (but not for a while!)