Dialysis, calcium and phosphate binders

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.

All about phosphate binders from Cath F at Diaverum

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.

It is all to do with ensuring that our calcium levels remain high enough to keep our bones and muscles strong and healthy.  I have often thought that my body is just a big bag of chemicals.  If all the chemicals are in balance, I feel fine and can take on the world.  If the chemicals are out of balance, I’m not worth talking to.

In the case of calcium (and its evil brother phosphate), it is very much getting the mix right.  In the normal course of events, we eat foods with calcium and phosphate (and many other things).  The calcium and phosphate travel to our stomach, where the right amounts are absorbed into the bloodstream and the rest flushed away via the bowel.

How calcium levels are regulated in the body (thanks Wikipedia)

Guess which organs regulate the level of calcium and phosphate in the bloodstream?  You got it, the kidneys (with the liver).  They do this by producing a hormone called Calcitriol, or activated Vitamin D.  Calcitriol also controls another organ group, the parathyroids, four glands the size of a grain of rice in the neck, surrounding the Adam’s apple.  These control how much calcium is in our bones, and how much calcium is in our blood.

But for BigD members, it’s a little different.  Without the kidney producing the Calcitriol to control how much phosphate and calcium gets into the bloodstream, the gates are wide open.  That’s when the evil brother takes over.  All those extra phosphate molecules in the bloodstream attract and combine with the calcium, quickly causing a calcium shortage.  The parathyroids identify the shortage and instruct the body to release more calcium from our bones.  The phosphate combines with that calcium too and the parathyroids calls for more calcium, and so on in a vicious cycle until our bones become porous and fragile.  Bad news all around.

There are several actions we can take to prevent this.

• Firstly, we can replace the Calcitriol that our kidneys no longer produce with artificial Calcitriol (in little red and white football-shaped pills) that performs the same function.  The level required varies and most people have a regular blood test (typically monthly) to track and manage it.  I take four every Thursday.  The level sorts itself out over the week.
• Secondly, we can slow the operation of the parathyroids.  These days this is done with a drug called Sensipar® (or Mimpara®), that mimics a high calcium level for the parathyroids.   It stops them sending those “send more calcium” signals to our bones.  Before this drug, we used to have a small surgical procedure to remove some or all the glands.  I am in this “before” group.  You can tell who we are: we all have a nice white line below our Adam’s apple (indicating that we are all members of the BigD Parathyroid Subcommittee).
• Thirdly and most commonly, we can take phosphate binders. These work pretty simply: you take at least one just before you have food or drink that has phosphate in it (just about everything has phosphate!).  The pill sits in your stomach and unravels into liquid.  As the phosphate-rich food arrives, it floats in the calcium liquid, and the phosphate binds with the calcium.  The joint phosphate-calcium molecules are then carried through the gut, into the bowel and out into the cold hard world again.

Pretty-well everyone’s monthly blood tests include phosphate levels, so it’s pretty easy to keep track.

I take about two 600mg Caltrate (calcium carbonate) tablets and one 750mg Fosrenol (lanthanum) chewable tablet as phosphate binders before meals.

Over the last few months mine have been stubbornly high, and I have the itches and aches to prove it.  However I recently increased my Calcitriol dose and I think things are improving.

The other technique of course is to cut the phosphate-rich food you put in your mouth.  I made the mistake about 6 months ago of going onto Soymilk.  I thought (without doing any research) that it must have lower phosphate than cow’s milk – seems logical, right?  Every week I got itchier and every month my phosphate level got higher.  I doubled my phosphate binders and it was still high.

Finally I spoke to our unit’s dietician and she told me the awful truth: soymilk is VERY high in phosphate.  And I was having a great dose on my cereal every morning!  So I asked the obvious question: what should I be having?  The answer surprised me: Rice milk – low in phosphate and quite tasty (though rice milk on rice bubbles seems a little one-dimensional).  Still, the result has been impressive: my phosphate is nearly normal.

So next time you get together for coffee, don’t forget the ritual.  Do it early and do it often, and keep your bones healthy.

Dialysis on the road again

It’s been a couple of weeks since my last post. I’ve been on the move, what with Easter and then Anzac Day and birthday celebrations in distant cities, I have had BigD in more remote units than I have had at my own.  That’s one of the pleasures of being a BigD club member: there are dialysis units and instant friends just about everywhere.

Julie and I were in Sydney for her work for the whole Easter/Anzac break, so I dialyzed for five days at Lindfield Diaverum unit. It’s an interesting unit, with beds in all but one station.  They originally planned to offer nocturnal dialysis, but found that to do so they had to re-licence the premises to an overnight/ private hospital, which from a cost viewpoint, was impractical.  But by then they had bought the beds, so there they are.  They are a little off-putting initially, especially if you want to sit up and do things.  However, most of the members of this BigD club are getting on in years, and I think they rather like the beds.  Also, I had a couple of early morning sessions, so I treated that time as an opportunity to stretch out and catch up on my ZZZs (very pleasant!).

As usual, I took my PC and did some bits and pieces: email, watched my latest video series: The Tudors.  Very good.  Gets you in right from the start.  Though there are no likable people, there are many to dislike and there is some pleasure watching a few heads roll.

Since we were there for Anzac day, we went to the Dawn Service in Martin Place in the city.  Nice early start that day: arrive at 0415, service begins at 0430.  There were a few thousand of us there, standing in the rain.  Very fitting.  The service was good, especially the Last Post, but Martin Place is quite small and cramped, and to me, lacked the camaraderie of the Melbourne dawn service.  The Melbourne Shrine of Remembrance is wonderful, and the grounds easily hold many thousands.

We also went to a double 60th birthday in Cairns, about 3,000km north, for Julie’s brother and sister-in-law.  I arranged to go to the Cairns Private Dialysis Unit, which is basically a four seat, one-person show.  Sandy is the Unit Manager.  She is very friendly and capable and it is a great place for holiday BigD.  They have Fresenius machines, blunt needles for buttonholing and supply you with two cups of tea and two rounds of sandwiches through the run. What more can you ask for?

There is also a public unit at Cairns Base Hospital, but I have never been able to get in there because it is too busy.

The birthday celebrations were a challenge.  So much good food and drink, so bad for me!  I arrived on a Friday, which in a non-dialysis day, dialyzed on the Saturday and flew home on the Sunday (my other non-BigD day).

With BigD and holidays it’s always a balance.  If you dialyse daily, you lose about 4 hours from the day, but you can eat what you like; on non-BigD days, all your time is your own, but you have to watch the fluids and the potassium/phosphate mix.

My sister-in-law has a big and well-earned reputation as a great cook, and the food just kept on coming.  My approach was to sample small bits of most things, including the wines.  That worked very well.  What with the dancing and the tropical heat, I went to bed with a fairly full and happy stomach, but not bloated and not worried about how I much fluid I would be carrying the next day.

We stayed right on the waterfront and had a great view of the giant catamarans leaving for the Great Barrier Reef islands in the morning full of energetic, happy tourists and returning in the evening still happy, but looking pretty tired.

I also met a fellow BigD friend who now lives in Cairns.  It is always good to catch with him over coffee, so we can exchange health hints and war stories. I have had aching joints lately that have stopped me jogging.  He has recommended fish oil or cod liver oil to get the joints moving again.  I will be trying out both over the next few weeks, and I will let you know how it goes.

One of my frustrations with specialists came up during this conversation.  Each specialist, including mine, has knowledge that is centimetres wide and kilometres deep.  Things are fine if your problem falls within this zone, but if not, don’t expect the same insight. The best approach is to either ask a friend who has the same problem, or find another specialist in that exact area.  The friend is usually cheaper.

I am writing this post on the plane on the way home and I’m looking forward to getting there.  That’s the thing about going away.  When you leave there is that delightful anticipation of the trip and the arrival, the new places and different life.  Then, when you are heading home it’s looking forward to getting home: settling back into your routine and sleeping in your own bed.  Bliss.