Binders

One of the most common questions I get asked is "How many pills do you take every day?"  This is a funny question to me.  I guess I forget that there are people that don't take any prescription pills at all.  I can't imagine.  I have been surviving on these chemicals for almost 15 years now.

The truth is I have greatly decreased the amount of pills I take every day.  Before dialysis these were just my morning pills:

It was frustrating because I wasn't eating much of anything those days and these pills were supposed to somehow stay down.  Two hours later I had my lunch pills, and then my dinner pills, and finally my night pills.  This is why I lost so much weight.  My body was so messed up from the toxins, I needed all these pills to lower or raise levels.  It is a snowball of crap that all of this helps regulate.

But I want to talk to you about binders (the biggest white horse pills in the picture above).  My body can't process phosphorus at all now, as I mentioned in another post.  If your phosphorus goes up, your calcium goes down.  When your calcium is down, your body starts pulling calcium out of your bones to compensate.  This leaves you with brittle bones, leading to easily broken or deformed bones.  My nurse told me there is a 30 year old that didn't take binders and she walks around with a cane now.  You get really stiff and can't stand up straight.  Well, phosphorus is in everything.  It is worst in processed foods, but it is also in dairy products, meats, and nuts.  Everything that seems healthy is probably bad for people on dialysis.  When I told them I like to eat apples with peanut butter, they asked me if I could eat apples with icing instead.

Huh??

I found out today that since my kidney died completely, my phosphorus has been out of control.  I have never had a kidney die before so I am new to it.  I was always able to control my phosphorus by barely taking binders, but today I found out that I need to take 4 every time ANYTHING goes into my mouth.  Sometimes I need even more.  Pizza is the worst thing I can eat.  I also found out today that if I eat one slice of pizza I need to take 6 horse pill binders.  6 per slice!!!  Can you imagine if I am really hungry and eat 3?  18 horse pills.  In one meal.  How on earth could I stomach all that?

I know this doesn't sound that bad to you all, but imagine this.  You have a chronic illness that causes you to have to attach to a machine 16 hours a week already.  When you aren't on the machine you want to be as normal as you can.  But instead there is a constant reminder that you are anything but normal.  Oh, you want a scoop of ice cream when you go out one night?  Make sure you get something to drink too because you need to take 5 big pills when you are done.  You don't get to forget, ever.  It follows you everywhere.

You think you want to drink to help cope?  Sorry, because unless you get drunk after one drink (and I don't know anyone that does), you can't take the fluid in.  Alcohol just sits in my belly when I drink it.  Because I can't pee!!  I haven't had more than one drink in a long time.  I know everyone has stress, but it helps to be able to be distracted from it once in a while.  Sick people have to deal with it sober and constantly in their faces for the most part.  As if the disease wasn't bad enough.  And some people do this for 30 years, in a clinic, from a wheelchair.  No wonder they are miserable.  I am so lucky.

Sometimes I wonder what will happen to me in 20 or 30 years when this next kidney fails.  I will be in my 50s or 60s.  I won't have kids to turn to.  Will I still have friends willing to donate to me?  As a 60 year old?  I mean, now I am in my 30's and everyone thinks, "Oh, what a shame.  To be so young and so sick."  But when you are 60 and sick do people say, "Well, she is 60.  It isn't that surprising that her kidney failed, is it?"  I know that is grim.  I try not to think that far ahead.  But sometimes your mind can wander...

We are still waiting to hear about Matthew's test.  Can you tell I am anxious?  This is the longest week ever.

*sigh*