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.

ARRH! – I did it again today.  Julie and I arrived at our favourite lunch shop and I forgot my phosphate binders.

As usual, I completely forgot them until I actually arrived.  Then like magic, the BINDERS! BINDERS! alarm went off in my head.  Without them I can expect the itchies minutes after I swallow the food.  And even if I then behave myself, it takes days (or a few dialysis sessions) for it to gradually wear off.

You’d think that after 17 years that the Pavlov’s Dog response would have pulled me into line by now.  But no, it’s more like Momento: every day is a new opportunity to stuff up again.

Remembering my binders (and to saying: “No salt please”) has always been a challenge.  And I know it’s the same for many other BigD club members.  Not just new ones either.  After 17 years I’d like to say I have nailed a way to remember, but I would be fibbing.

However, I have been working on strategies to rescue a forgotten binder situation and I’m happy to share them.

I began by leaving little plastic bottles of binders everywhere I knew I would be.  I put a bottle in the glove box of my car, Julie’s car and one in my locker at dialysis.  This worked out fine when I was close to one of these locations.  But then there are the times when I am not: when I’ve caught the train to the city or walked to a restaurant or a friend’s home and the car is miles away.  My options are either to eat and drink like a mouse or to take it on the chin.  I usually end up doing both.

Recently Julie came up with a new strategy: carrying a reserve supply in my wallet, and in her purse.  This is a little trickier.  Binders can be crumbly and messy, so we put them in the tiny little zip lock button bags you get with new shirts.  Also, they are bulky and show as a ridge of bumps in my wallet (they remind me of my fistula!).  But I’m over that now.  I carried similar bumpy things in my wallet when I was young, and it was no drama then.

The great thing about this new strategy is that it works.  I used this reserve supply to rescue today’s hassle.

Salt is a little more difficult.  Too much makes you THIRSTY.  VERY THIRSTY.  I wake in the middle of the night with a dry, croaky throat.  The only relief is fluid (water, soft drink, beer…).  Hey presto, my weight goes up by the same amount, breathing becomes a little difficult, ankles swell and it all has to be dragged off at the next BigD session.   Best avoided.

Sadly there is no pill to neutralise a salt overdose.  You have to program yourself and others not to cook with salt and to remember to tell people not to add salt to your food.  Usually I remember (or Julie does).  The best thing to say is; “No added salt please.”  Most restaurants use some salt in their cooking, but they don’t go crazy (unless you are talking about some Chinese food, or salted caramel, soups, or other over-salty food you can recognise pretty quickly).   A little salt is no problem.  The real pain is where people shake salt onto the food (especially fish and chips – mmm!).  I have spent many a meal scuffing salt off potato chips with my serviette (it doesn’t get much off, but I feel better for it).

So, try the binders reserve supply strategy and see if it works for you.  I’m sorry, but I don’t have a strategy for salt, I just have to remember (or not eat the food).

I’d love to hear about your strategies, so start the list here!

One thought on “Dialysis, binders, salt and memory

  1. Great points! “I began by leaving little plastic bottles of binders everywhere I knew I would be.” Same here. I have bottles all over the house. On the kitchen table, the dining room table, next to my lounge chair, on my desk, and beside my bed. I also carry a supply in a plastic pill container in my pants pocket or short pants, whatever I’m wearing. And, like you, I keep a container in the car. I hate having phosphorus burns and itches.


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