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.  I have been fairly diligent with my diet: not too much milk, no cheese, not too many potatoes, huge steaks or other baddies.  And for a few weeks, all was well.  But last week’s test results showed that I am back to hanging by my fingers.  My phosphate(phosphorus) level climbed again, to a lofty 2.9mmo/L (it should be between 0.81 and 1.78mmo/L).

I knew it was up because the itches came back. They attacked last night while I was on the machine, my blood pressure climbed and I could barely stay in the chair.  They took about an hour to subside, and the remainder of the run was quite restful.  They returned again when as I went to bed, and took another hour to bugger off.  I would really like to get back to normal.

Before this began, I used to take a mouthful of calcium tablets during each meal, and my phosphate level was fine.  But obviously my mouth is too big, and my calcium level shot over the moon, which can be tricky.  So my doctor stopped all calcium and put me on one Fosrenol® (Lanthanum Carbonate) during each meal.  I took the first tablet and waited for the side effects (“adverse gastrointestinal events”, intriguing huh?) to kick in.  We pill takers are like James Bond, we live dangerously.  But there were none that I could notice, so I continued.

But only three tablets a day meant that each time I had a snack, I had to nibble a bit of next meal’s tablet and leave the rest for the meal.  Then I was short-changed at the next meal.  I think there was simply not enough to do the job, and it had no effect.

Last week he upped the ante by adding one Renagel® (sevelamer carbonate, also called Renvela®) per meal.  I have been wary of this tablet because several people I know suffered some of the side effects (vomiting, nausea, diarrhoea, indigestion, abdominal pain, flatulence, and constipation).  So I started slowly, and all seemed OK (perhaps I’ll admit to a little extra flatulence).  And I think the diarrhoea cancelled out the constipation.  However, still no drop.

Chris, my Unit Manager arranged for me to talk to our dietician, who was quite helpful.  She took me through each typical breakfast, lunch and dinner, and morning and afternoon snacks.  Mostly I am OK, though many people need only about 150 grams (a third of a pound) of meat or other protein daily.  That’s a piece of steak about the size of your palm.  I think I usually have a little more, so I will try cutting down.

Milk is a big source of phosphate and I often have milk with my cereal for breakfast.  I tried rice milk (which is an acquired taste) for a few months, until I discovered that it has about the same level of phosphate, so I went back to full cream milk.  A friend suggested that I have my cereal with water instead.  You have got to be kidding.

I also have a weak espresso coffee (flat white) each lunch time, which I quite enjoy.  While this could well be a contributor, I think everyone should live a little, so no change there either.

So as far as I’m concerned, today’s lunch was right on the money.  And it was delicious.

I have another blood test next week; here’s hoping.

3 thoughts on “Dialysis and another itch to scratch

  1. Sometimes, I feel like I need a chemistry degree… Too much sodium (or natrium, if you prefer), too much phosphate, not enough potassium, not enough protein, not enough fat (yes, true story)… Every meal is a delicate balance between getting the nutrition required without upsetting the numbers we so carefully analyse every month… while still eating food that tastes great and satisfies!! My boyfriend has done a marvelous job of maintaining his diet, to the point that his dietitian calls it ”miraculous”, but it is not easy. However, it can be done with research and creativity and patience in trying new recipes.

    Thanks again for this blog, Greg!! Today is a bad day here (bad news is never far away), but seeing your posts every few weeks really gives me a boost!!


  2. Hi stumbled upon your very interesting blog which looking for Dialysis facility in Melbourne Australia. I am planning on holidaying in Melbourne. You blog is very informative:)


  3. Before my diagnosis (October 4, 2010), I had been on daily doses of loratadine for hayfever. Whenever I get the hint of the phosphate itches, I increase my loratadine for a week and the itch abates within a few days. I’m not a doctor so don’t take this advice without consultation with your specialist. The itch can drive you up the wall, and is probably one of the most frustrating symptoms of kidney failure for me! Sympathies to everyone that goes through this … everyone.


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