Well, if you would have told me, I would have known!

[cattlekid]

   Rant time!

So yesterday was the day that I went over my monthly labs with my dietitian.  My phosphorus level was higher than last month (6.7).  Yes, I know this is not good for me.  So she gave me a new list of inorganic phosphates to watch for in foods.  I was livid.  I told her that I should have had this information from the day I walked into the center.  She tried to pass it off that she "doesn't want to overwhelm the patients" when they start D.   I countered by telling her that a) she sees me working on my work laptop at every treatment so it's kind of obvious that I'm not out of it and can handle a decent amount of input and b) if she was concerned about my phos level last month, she should have given the info to me at that time instead of just telling me to get better about taking my binders.  Ugh, ugh, ugh - how am I supposed to research everything on my own when I work a full 40 hour week?

 Turns out that my protein powder that I take every day (because the same dietitian pushed protein during my first two months on HD) is full of phosphates *and* I just spent $80 on a big shipment of it!  So I told her that I'm going to just have to take binders with my protein (I drink it first thing in the AM before I leave for work) so I might end up needing a new binder prescription for more binders per day.

Grrr....I'm sick of all of these renal workers who think that all patients are the same.  Just because most of the patients at my center are a) elderly or b) non-English speakers or c) both, doesn't mean that the rest of us can't be trusted to deal with *all* the information, not just half of it.

On the bright side, I did finally meet another one of the patients who's about my age yesterday and has been at our center for over 2 years.  She gave me a good scoop on how to deal with some of the workers so it did clear up a few things (like why the center manager scowls at me and my catheter every week LOL).

Rant off, thank you for listening.   

[WishIKnew]

Rant away!

Phospherous is a big bug-a-boo for me, too!

[CHeatherS]

Oh gosh, so sorry!!!!! Yes, there are a LOT of things that I wish I knew..... and I am telling the clinic, my doctor, etc.... about them.  If only someone would have told me a few things in the beginning, my gosh.  For instance, I didn't know about the inability to wear PANTS, or any of my clothes after my PD cath was put in, because the surgeon wasn't careful about the placement.  If the patient knew these things.... we could be more insistent on WHERE the heck it goes.  Yes, I guess we have to question the daylights out of people, and then we have to try to help those who come behind us, not knowing. 

[boswife]

It's amazing huh!  I too want to know everything, or get ALL the information right away and learn at my pace!! not how they wish to dole it out.  and  hows that protien powder your using as far as bring up albumin? (is that what your taking for?)  And do you use in a smoothie type thing? or some other way.  Always looken for protien boosters for hubby, though he doesnt like 'drinks' so it's getting tough..   

[needlephobic]

This is why I took on being a ESRD Network 13 Patient Rep at my D center so I can get info in the patient's hands and to help them any way I can.    I didn't have a rep when I started D and really could have used one to get answers to my questions.

[cattlekid]

The protein powder has brought my albumin up to 4.0 from 3.6. 

It's called EAS Myoplex.  It is designed for bodybuilders so it's got a lot more "stuff" than a standard whey protein.  I like it because I can shake it with a couple of cubes of ice and some water and it turns out like a frothy milkshake.  I don't like it because now I know it's full of phosphates, but since I already invested in it, I'm just going to start taking binders with it.

I can't blame your hubby on the drinks.  I was given a can of Nepro last week when I was having low BP during treatment and the texture was beyond me.  Tasted like berry-flavored chalk.   

It's amazing huh!  I too want to know everything, or get ALL the information right away and learn at my pace!! not how they wish to dole it out.  and  hows that protien powder your using as far as bring up albumin? (is that what your taking for?)  And do you use in a smoothie type thing? or some other way.  Always looken for protien boosters for hubby, though he doesnt like 'drinks' so it's getting tough..

[jbeany]

Frustrating, isn't it?  If they aren't telling you what you need to know when you need to know, then they're telling you the wrong things altogether instead.   

[greg10]

..  My phosphorus level was higher than last month (6.7)...
 Turns out that my protein powder that I take every day (because the same dietitian pushed protein during my first two months on HD) is full of phosphates *and* I just spent $80 on a big shipment of it!  So I told her that I'm going to just have to take binders with my protein (I drink it first thing in the AM before I leave for work) so I might end up needing a new binder prescription for more binders per day..

Not all protein powders are created equal.  High quality whey protein isolates can be quite low in calcium and phosphorus, the two minerals you should really pay attention to.  Also make sure there is not too much added sugar because you should really be paying for the protein and not carbohydrates.
The following is just an example, not a recommendation of brand or content:

[looneytunes]

When albumin was a problem lab for hubby, who was VERY stubborn about not eating extra chicken or drinking protien drinks, I started putting a protien powder (Beneprotien by Nestle) in his food.  It is tasteless and oderless and when added to things like chicken salad, tuna salad, scrambled eggs, renal friendly tacos, etc...he didn't know it.  His albumin ended up coming up, though a little more slowly than if he had been more cooperative. 

[boswife]

thanks on the 'protien' subject    I've got hubby on the Liqua cell product and it's been good so far.  come up from 3.0 -3.4 so far and keeping up with it. I am now Also adding some of the Designer whey sprinkled on his toast and into anything i can sneek it into.  Going to try a small berry type shake (with powder)  and see if he'll down that too.  It's been so hard because of his dislike for the thick drinks like "nepro" so  mabie the icie type may work better..thanks    

[peleroja]

Hey, if you can't rant with us, who can you rant with?!  We understand.  Feel better?