written on August 25, 2014
Just met with my new dietician. Very friendly and very open about sharing her knowledge.
She gave me my lab results from Friday, which was my first day at the new center. Turns out my phosphorus and potassium levels have gone up.
I knew about the phosphorus, because I could feel myself not feeling well last week. I think when the phosphorus levels rise, that’s when I start feeling yucky again, and I’m pretty sure that’s why I lose my appetite, which started happening last week also. I’m sure a lot of it has to do with my dialysis adequacy being low – basically the dialysis has been removing less and less toxins the last few weeks. For some reason it seems to be better now that I’m at the new center.
I learned a few more things about my diet – basically she wants me to take more phosphorus binders with every meal – closer to 3 or 4 at every meal. Then 1 with every snack. She also suggested I write down how much phosphorus I eat at every meal and figure that the Renvela (the phosphorus binder I’m taking) is going to bind approximately 80 mg of phosphorus with each pill. I’m supposed to limit my phosphorus intake to 1000 mg daily. Let me tell you how difficult that is – phosphorus is in everything! And since the molecule is so large, the only effective way to get rid of it is with the binders.
Potassium is easier to control (and I can also eat 2000 mg per day), but there are no binders for potassium. If I eat too much of it, I have to wait until my next dialysis session, because the dialyzer removes most of the excess potassium (the dialyzer has a hard time removing phosphorus because of it’s size).
She also suggested I start taking a renal vitamin every day. I was shocked when she said this. She said the dialyzer removes all the water-soluble vitamins from my body, like the B-vitamins and vitamin C. So I need to start taking a vitamin after dialysis to help keep the levels in my blood stream. What?!? Why is this the first I’m hearing of this? My previous center never once mentioned needing a vitamin to replace ones that were dialyzed out. Just another reason I’m glad I switched centers.
She also told me I can get my Renvela much cheaper because they have a frequency card that reduces the cost to $5 per refill. What?!? I’ve been paying $25 every time I refill. The other center never mentioned that to me either, neither did my doctor who prescribed it. I know it’s a little thing, but these little things have been adding up over time. I’m ready to move on from all the things I’m seeing as mistakes from the other center.
The dietician also told me how I can prepare potatoes to reduce the potassium content – yay! The other dietician just told me to never eat potatoes at all – the potassium in potatoes is one of the highest levels of any vegetable.
And one last thing I learned here – I cannot eat star fruit at all. Not that I have eaten star fruit in my life, because I haven’t. But it turns out star fruit contains a toxin that is processed by the kidneys and if you have renal failure (like I do), the toxin stays in your blood and cannot be filtered out by the dialyzer. Which means if I eat star fruit I could potentially die. It’s the only food I am absolutely not allowed to eat (no big deal – since I’ve never had it before, I’m pretty sure it’s not going to be in my future diet plans). But if there’s a fruit that could potentially kill me, why is this the first time I’m hearing of it?
One more reason to think this is a much better center than my last one.
I like knowing I’m still learning stuff, even this far in. Even with my migraine already started, today feels like a better day just because I’ve learned some new things.