Finally, the HB mystery unmasked!

shoulderAs regular readers will know, over the last few months, I became quite unwell well, with fevers, lethargy, persistently low haemoglobin level (HB) and generally feeling crappy.  Also, gradually (so gradually I didn’t realise it was happening), my muscles and joints began to stiffen and lock up.  I was walking around like a wizened old man: bent over, no flexibility, only just able to touch my toes.

I eventually spent a couple of weeks in two different hospitals.  But it seemed that no-one could find the problem, until one young and enthusiastic doctor
thought he recognised it, because it was his specialty.  He sent me for a full body MRI and which confirmed his hunch.  I had something I could barely pronounce: Polymyalgia Rheumatica (PMR). (more…)

Dialysis, binders, salt and memory

CaltrateBefore I forget, I saw this article today:  Report: Ohio nurse didn’t realize she discarded kidney   A nurse who accidentally disposed of a living donor’s kidney during a transplant said she didn’t realize it was in chilled, protective slush that she removed from an operating room, took down a hall to…

I know hospitals aren’t perfect, but there are mistakes and Mistakes.  It’s all about process, which was what went wrong here.  I feel for the nurse. (which was what went wrong – wow, a nice, unexpected alliteration!) Anyway, into the blog. (more…)

Dialysis and another itch to scratch

It’s a cold, rainy, wintery day in Melbourne: to be expected since we are at the back-end of winter.  I met Julie at the local patisserie for lunch.  She had a chicken and avocado wrap and I had a ham and salad mini-baguette.  Each followed by coffee.  Sounds pretty normal, but as usual for us BigDers, there is always a little man in my head saying ”Should you be eating this?”.

He is right to ask of course.  Just about everything we eat has the potential to kick us off the straight and narrow.  (more…)

Dialysis: scratch that phosphate itch

I recently discovered that it doesn’t matter how long you have been on the BigD, or when you last read about a healthy kidney diet, you can still fall into food traps that can drive you mad, usually in slow motion.  I thought it would be useful to share.

Over the last month in have received a persistent “Could Do Better” after blood tests:  my Phosphate (phosphorus) was 2.9mmol/L, when acceptable is 0.81 to 1.78mmol/L.  Too much phosphate can be toxic. (more…)

Dialysis, calcium and phosphate binders

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One of the fun things that happen when two or three BigD members gather together for coffee or a meal is the phosphate binder ritual: all hands dip into pockets to find calcium pills, into the mouth, swallow with a sip of water and its back to the conversation.

We all do it, but I know it took me a while to understand why.  Just recently we had an in-house briefing about it at our dialysis unit from the very excellent Cath F, so I thought I’d share what was said.  (The good stuff is hers, any mistakes are mine.)  Thanks Cath. (more…)

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 (more…)

Dialysis, transplants and wimpy bones

1-long-bones-femurWhen I was young, I used to joke about falling down.  You know the usual refrain: “Oops, fall down go boom!”  Now, after 15 years on the BigD, and two transplants, things have changed a little. These days it’s: “Oops, fall down go snap.”

How has this come about for a strapping individual like me?  Throughout our lives our bones are constantly being reabsorbed by the body and being rebuilt using two critical building blocks: calcium and vitamin D.   (more…)