High Phosphorus

[Duane]

Yep it has to come down for me.

That's the only way i'll know if i feel better, guess i'll try harder and see.

[Chicken Little]

Have they ever given you Kayexalate Duane?  That's what I took before dialysis, and not eating, brought mine down to a normal range.  It tastes gross and will have ya running for the bathroom, but it brings down your potassium right away. 

[goofynina]

Have they ever given you Kayexalate Duane?  That's what I took before dialysis, and not eating, brought mine down to a normal range.  It tastes gross and will have ya running for the bathroom, but it brings down your potassium right away. 

I think he is talking about his Phosphorus Chicken Little.  But i have had that stuff,  it is the gritty stuff that is like sand when you drink it?  Man-o-man if it is, that stuff had me running allright, except 1/2 the time i didnt make it    Thank God i was in the hospital and didnt have to clean it 

[Chicken Little]

I think he is talking about his Phosphorus Chicken Little.  But i have had that stuff,  it is the gritty stuff that is like sand when you drink it?  Man-o-man if it is, that stuff had me running allright, except 1/2 the time i didnt make it    Thank God i was in the hospital and didnt have to clean it 

Oh, yeah.  Kayexalate is for the other P word.   

[goofynina]

I think he is talking about his Phosphorus Chicken Little.  But i have had that stuff,  it is the gritty stuff that is like sand when you drink it?  Man-o-man if it is, that stuff had me running allright, except 1/2 the time i didnt make it    Thank God i was in the hospital and didnt have to clean it 

Oh, yeah.  Kayexalate is for the other P word.   

Yeah, POOP lol 

[Zach]

Try keeping count of the phosphorus in the foods you eat per day, and try to stay within the limit of 1,000 mg per day.  And of course, don't forget your binders.     

[Duane]

Thanks i'm going to ask for that stuff. I also have to remember to take my binders after each meal.

[Bajanne]

That is one thing I am very careful with this weekend.  I am really taking binders like crazy.

[angela515]

I think he is talking about his Phosphorus Chicken Little.  But i have had that stuff,  it is the gritty stuff that is like sand when you drink it?  Man-o-man if it is, that stuff had me running allright, except 1/2 the time i didnt make it    Thank God i was in the hospital and didnt have to clean it 

Oh, yeah.  Kayexalate is for the other P word.   

I cannot take that sgtuff... just the smell and site alone, makes me vomit. One sniff.. and PUKE. It's like an instant automatic respone to that nasty stuff.

[Duane]

 I also have a high pth (800).

Ideal pth should be around (300), phosphorus should be around 5.5

you are in the danger zone at 800.

A phosphorus food finder guide would teach you what to eat daily.

[angela515]

 I also have a high pth (800).

Ideal pth should be around (300), phosphorus should be around 5.5

you are in the danger zone at 800.

A phosphorus food finder guide would teach you what to eat daily.

Sometimes, like in my case, you can watch your phos intake to a T and still have very high phos and PTH... due to an enlarged parathyroid gland(s).  Only solution to that is to remove it if the Sensipar and such arent helping decrease the numbers.

[mmmmdeedee]

Sorry again guys for ringing in late on this one.

My problem was I never wanted to acknowledge I was different than anyone else. I went to lunch with the people from work and ordered whatever I wanted. Hit and miss on the Renagel and just was basically stupid. 

When I went into the hospital this last month, my createnine was up to 10.1. Again, stupid.

Hey Duane how are your numbers?

[stauffenberg]

Whenever patients are blamed for bad blood chemistry results, I feel they should point out that the real blame belongs with the medical profession for having provided such an utterly inadequate treatment as hemodialysis and pd, since these are not able to permit people to live normally, or even to control their blood values with a strict diet.

It is also standard practice in medicine to blame the patient for not taking the medicine prescribed rather than call into question the omnipotent wisdom of the drug companies and the doctors in providing the medicine.  I remember seeing every single patient at a glaucoma clinic in 1978 being blamed for not taking their eyedrops because their intra-ocular pressures were rising over time, but only later was it discovered that the drug prescribed lost its effectiveness over time!  No apology was ever given to the patients for the scolding they had received.

My dialysis unit had a summer camp providing holidays for dialysis patients, and at the camp they were constantly fed hot dogs, even though these are very high in phosphorus.  "Oh well, we just found anything else too difficult to prepare," was the excuse they gave when I complained.  So I have to wonder, why is it all right for the institution to become lax about the diet but not the patient?  They obviously find it harder even institutionally to comply with a regimen they expect us to endure as individuals.

[KICKSTART]

Whenever patients are blamed for bad blood chemistry results, I feel they should point out that the real blame belongs with the medical profession for having provided such an utterly inadequate treatment as hemodialysis and pd, since these are not able to permit people to live normally, or even to control their blood values with a strict diet.

It is also standard practice in medicine to blame the patient for not taking the medicine prescribed rather than call into question the omnipotent wisdom of the drug companies and the doctors in providing the medicine.  I remember seeing every single patient at a glaucoma clinic in 1978 being blamed for not taking their eyedrops because their intra-ocular pressures were rising over time, but only later was it discovered that the drug prescribed lost its effectiveness over time!  No apology was ever given to the patients for the scolding they had received.

My dialysis unit had a summer camp providing holidays for dialysis patients, and at the camp they were constantly fed hot dogs, even though these are very high in phosphorus.  "Oh well, we just found anything else too difficult to prepare," was the excuse they gave when I complained.  So I have to wonder, why is it all right for the institution to become lax about the diet but not the patient?  They obviously find it harder even institutionally to comply with a regimen they expect us to endure as individuals.

Well said 

[carolynt]

I totally agree with everything about Phosphorus.  First this was never a problem before my kidneys started failing.  I do have a question, does Renegel have an side affects like constipation.  I have not been regular since I started Dialysis so maybe its the Dialysis treatment that is doing this.  Any thoughts?

[mmmmdeedee]

I feel like I'm on Oprah. She's always talking about Poo on her show!

I was always regular. But again, I was always drnking fluids (no restrictions in my head) and eating a normal diet.

Did you talk to the doc about this?

Hate to take another pill to resolve another issue though and that's probably what they'll tell you.

[fluffy]

My phosphorus is usually pretty high, the renagel dosent do much except give me indigestion. the sensipar helped me feel a bit better tho. Either way the doctors still complain about my phos. hopefully hemo will help.

its almost like they're trying to sneak as much phos into foods as possible :p its always written real small too

[highlite36]

You know...I had problems with Renagel....  Next to the fact that it was EXPENSIVE as all heck to get and the insurance really fought to pay for it, I found that it didn't really work all that well for me.  Instead, I was placed on Phos-Lo....  It is calcium acetate and it seems to be doing the trick....  The hardest part is remembering to consistently take the dang thing....  But when I do...it does work WONDERS!!!  And this is coming from someone who's had the subtotal parathyroidectomy and is consistently battling hypocalcemia...... 

[pdpatty]

Has anyone tried Fosrenol? Very expensive but I have no side affects and it does control my phosphorus levels. With the new Medicare drug program(through Humana) it is $60 for a months supply.

[goofynina]

I used to use Fosrenol but after awhile the chalkiness got to me and i would make myself sick just think of having to chew it,  now i eat Tums Smoothies which work well too (as long as my calcium doesnt go up) and so far so good  

[fluffy]

im on renagel and sensipar, no side effects from the sensipar but with renagel i get godawful indigestion. when i complained to the doctor he said "thats what its supposed to do"
luckily i live in canada and with our prescriptin drug insurance i pay a maximum of 73 dollars for all my meds

[glitter]

my husband has been using Fosrenol and Phos-Lo --two swallow and 1 chew per meal, but i am concerned about his calcium which is a high- his PO4 is 5.5, but his calcium is like 9.8- he has changed to 1 phoslo and two fosrenol for this month-

[LightLizard]

it sure is an ongoing and ever-changing battlefield, phosphorous is. there is no such thing as adequate labelling for it, or potassium either. my doc is presribing sensipar after my last blood work and has cut my useage of tums in half because my calcium is a little high.
i guess its a lot like surfing, hey?
 

[carson]

I've  been battling Phos for the 10 yrs I've been on PD. It's only in the last couple of years that I started taking my diet and meds, or maybe I should say just my meds seriously. Now my phosphorous is low but my PTH is 400 and rising. It really is a battle, isn't it!?!

[Bajanne]

It really is a battle, isn't it!?!

You can say that again.  And so far, I am not winning.  I keep forgetting to take binders.  My last two blood results made my nephro come and chat with me.  I want to do well, but I need to do something very serious about it.