My Dietican Sucks!

[Bette]

I have been back on dialysis for almost two months now and I am trying to adhere to the renal diet.  I have cut down on the high sodium, high potassium and high phosphorus foods, but my dietitian has not given me any limits.  I was expecting her to say eat so many grams of protein, so many mg of phosphorus, etc.  I got nothing.  Plus she's in India for three weeks. 

I am so tired of eating white bread, white rice and chicken I could scream!!!

[Sara]

Yeah, it seems like usually they just say, eat less of whatever, but no real figure.  I think Zach had some actual daily amounts or something posted somewhere around here.  Maybe he can help with that.   

[Zach]

Call your Dr and get your potassium and phosphorus limits.  Don't wait for some irresponsible dietican to return in three weeks.
Bette, go to the following threads for more info:  Sorry if I sent you too many links.   

From General Discussion:
http://ihatedialysis.com/forum/index.php?topic=1742.0

From FAQ:
http://ihatedialysis.com/forum/index.php?topic=1510.0

From Diet & Recipes:
http://ihatedialysis.com/forum/index.php?topic=819.0

http://ihatedialysis.com/forum/index.php?topic=1526.0

http://ihatedialysis.com/forum/index.php?topic=886.0

http://ihatedialysis.com/forum/index.php?topic=828.0

http://ihatedialysis.com/forum/index.php?topic=1277.0

[Epoman]

Call your Dr and get your potassium and phosphorus limits.  Don't wait for some irresponsible dietican to return in three weeks.
Bette, go to the following threads for more info:  Sorry if I sent you too many links.   

From General Discussion:
http://ihatedialysis.com/forum/index.php?topic=1742.0

From FAQ:
http://ihatedialysis.com/forum/index.php?topic=1510.0

From Diet & Recipes:
http://ihatedialysis.com/forum/index.php?topic=819.0

http://ihatedialysis.com/forum/index.php?topic=1526.0

http://ihatedialysis.com/forum/index.php?topic=886.0

http://ihatedialysis.com/forum/index.php?topic=828.0

http://ihatedialysis.com/forum/index.php?topic=1277.0

AWESOME post Zach, thanks for taking the time to post those links. 

[BigSky]

I have been back on dialysis for almost two months now and I am trying to adhere to the renal diet.  I have cut down on the high sodium, high potassium and high phosphorus foods, but my dietitian has not given me any limits.  I was expecting her to say eat so many grams of protein, so many mg of phosphorus, etc.  I got nothing.  Plus she's in India for three weeks. 

I am so tired of eating white bread, white rice and chicken I could scream!!!

Contact your doctor as to your limits.  They are the ones who are actually suppose to set the limits in the first place.  From there the dietitian is suppose to guide you.

[meadowlandsnj]

I have been back on dialysis for almost two months now and I am trying to adhere to the renal diet.  I have cut down on the high sodium, high potassium and high phosphorus foods, but my dietitian has not given me any limits.  I was expecting her to say eat so many grams of protein, so many mg of phosphorus, etc.  I got nothing.  Plus she's in India for three weeks. 

I am so tired of eating white bread, white rice and chicken I could scream!!!

My limits are:
2000 Potassium
1000 Phosporus
2000 Sodium
100 Grams Protein
1000cc fluids

But that's just my own dieticians plan for me, it's not good for every individual who is on dialysis.  They also gave me a printout with appropriate foods and tips.

[Bette]

I talked to my doctor and it turns out she didn't give me limits because my kidney still kind of works.
She just wanted me to cut down on the really high potassium and phosphous foods, but since I still have some function, I can be more lienient with my diet.   

At least I have good news before thanksgiving.  I can actully have some stuffing!

[RichardMEL]

I was just given a generic list of, for example, low potassium, medium potassium and high potassium foods - with suggested serving sizes for daily amounts (eg: one medium apple, or 250ml of apple juice, or whatever). When I have spoken to the dieticians they usually seem to just look at the latest test results and go from there.. eg: Calcium is op, so let's focus on that. Potassium is at 3.2 so no worries there etc.

Indeed the last one I saw said I was a "model paitent" (?!) ha! and said I didn't really need to do anything different.

I went home and had a chocolate bar....

[AlasdairUK]

IMO renal dieticans on average are not very good as they do not seem to understand what it is like being on dialysis. They do not seem to understand the disease. Being dieticans they only seem to be able to look at the statistical point of view of what we put in to our bodies. ie drink 500mls a day as that is good for you. Eat 1.2 grams of protein per dry weight in Kg plus 2 servings of fruit and 2 servings of vegetables and then ask why our phosphate levels are up. Some things in the renal diet contradict themselves.

[Joe Paul]

Most of the time at my clinic, I see patients who cannot yet accept this change in their lives. I'm lucky, in that I knew dialysis was coming, just a matter of when.  It did come faster than what Id liked it to have, but either way, its here. I see anger, feel anger, but its just another chapter in life.
Anyways, Ive watched my dietitian give shitloads of advice, and the "problem" patients seem to come around. I'm blessed with the whole crew I have where I  live, Dietitian, to me, is only behind the doctor. Sorry if I got off subject.

[RichardMEL]

Yeah, there is one guy in my unit.. kind of young.. I would guess in his 20's (he and I are by far the youngest in our unit... the rest are a whole lot older). Anyway he is definately having trouble accepting the changes he has to do. Poor guy routinely shows up 5-7kg over (!) and no matter how much they schold or try to educate him I think he likes his beer too much! LOL. Anyway the dietician often spends a lot of time with him. I think the nursing staff would all faint if he came in under 2kg gain some day! LOL

[angela515]

My dietician is very helpful, and nice and understanding, he listens... he explains things in a way I understand them.. the only I dont really like is when my numbers are high, or low... I get accused of not taking my pills, when I do... 

[angieskidney]

My limits are:
2000 Potassium
1000 Phosporus
2000 Sodium
100 Grams Protein
1000cc fluids

But that's just my own dieticians plan for me, it's not good for every individual who is on dialysis.  They also gave me a printout with appropriate foods and tips.

Wow you know honestly I don't even KNOW my limits so I just don't eat ANYTHING .. lol .. and last month my Po₄ was actually too LOW!!

[angela515]

My limits are:
2000 Potassium
1000 Phosporus
2000 Sodium
100 Grams Protein
1000cc fluids

But that's just my own dieticians plan for me, it's not good for every individual who is on dialysis.  They also gave me a printout with appropriate foods and tips.

Wow you know honestly I don't even KNOW my limits so I just don't eat ANYTHING .. lol .. and last month my Po₄ was actually too LOW!!

I don't know what my limits are... infact I don't even understand the whole Po_{4[/4] I have never heard of phosphorus referred to this way until I came to this board. My dietician just tells me stay away from high phosphporus foods and if I can stay away from medium phosphorus foods and try to just stick to low phosphorus foods.. because for like 6 months now my phosphorus hasn't been normal once... I have had 7.0 or higher... I am always itchy, I'm always watching my phosphorus and taking my binders... still can't get the damn thing down.} 

[Zach]

I don't know what my limits are... infact I don't even understand the whole Po_{4[/4] I have never heard of phosphorus referred to this way until I came to this board. My dietician just tells me stay away from high phosphporus foods and if I can stay away from medium phosphorus foods and try to just stick to low phosphorus foods.. because for like 6 months now my phosphorus hasn't been normal once... I have had 7.0 or higher... I am always itchy, I'm always watching my phosphorus and taking my binders... still can't get the damn thing down.} 

My dietician is very helpful, and nice and understanding, he listens... he explains things in a way I understand them.. the only I dont really like is when my numbers are high, or low... I get accused of not taking my pills, when I do... 

Maybe he's really not too helpful after all.

[angieskidney]

I don't know what my limits are... infact I don't even understand the whole Po_{4[/4] I have never heard of phosphorus referred to this way until I came to this board. My dietician just tells me stay away from high phosphporus foods and if I can stay away from medium phosphorus foods and try to just stick to low phosphorus foods.. because for like 6 months now my phosphorus hasn't been normal once... I have had 7.0 or higher... I am always itchy, I'm always watching my phosphorus and taking my binders... still can't get the damn thing down.} 

I read from my sheet that Phosphorus should be between 0.8 - 1.45 mmol/L (less than 1.78 is good!!) but that is the measurement in Canada. American measurement is 2.3-4.7 mg/dl for perfectly healthy people and of course we are not expected to be within healthy people's limits but to try to be close. So your 7.0 mg/dl is a little high and that is why you are itchy. If it is high always then you are at risk for worse problems such as breaking bones and ending up in a wheelchair and getting Calciphylaxis which can kill. That is what scared me into being very strict with my diet and keeping everything within limits. But I found out that my Phosphate being too low is bad too! It can cause muscle weakness and difficultly breathing that way too! Opps! 

My dietician is very helpful, and nice and understanding, he listens... he explains things in a way I understand them.. the only I dont really like is when my numbers are high, or low... I get accused of not taking my pills, when I do...

Ya I get accused of that too

[angela515]

I don't know what my limits are... infact I don't even understand the whole Po_{4[/4] I have never heard of phosphorus referred to this way until I came to this board. My dietician just tells me stay away from high phosphporus foods and if I can stay away from medium phosphorus foods and try to just stick to low phosphorus foods.. because for like 6 months now my phosphorus hasn't been normal once... I have had 7.0 or higher... I am always itchy, I'm always watching my phosphorus and taking my binders... still can't get the damn thing down.} 

I read from my sheet that Phosphorus should be between 0.8 - 1.45 mmol/L (less than 1.78 is good!!) but that is the measurement in Canada. American measurement is 2.3-4.7 mg/dl for perfectly healthy people and of course we are not expected to be within healthy people's limits but to try to be close. So your 7.0 mg/dl is a little high and that is why you are itchy. If it is high always then you are at risk for worse problems such as breaking bones and ending up in a wheelchair and getting Calciphylaxis which can kill. That is what scared me into being very strict with my diet and keeping everything within limits. But I found out that my Phosphate being too low is bad too! It can cause muscle weakness and difficultly breathing that way too! Opps! 

Yes I know, I had a calciphylaxis scare back in July. They said it's rarely reversable but I got lucky. I keep a very close eye on my PTH levels and they have been running good for me he last month or 2. 300's, so thats good... forr me. I was running 800 and higher than 1100's.. I started taking Hectorol and Sensipar along with watching my phosphorus... idunno why my phosphorus is so high, I watch what I eat and take my binders... I cut out my enemy, dairy... so that helped, went from 10-13 down to 7.. progress. 

My dietician is very helpful, and nice and understanding, he listens... he explains things in a way I understand them.. the only I dont really like is when my numbers are high, or low... I get accused of not taking my pills, when I do...

Ya I get accused of that too

Dont ya hate that??

[jbeany]

I visited the local dialysis center today to meet the nurse.  She pointed out the staff dietitian who was eating her own lunch at the time.  I'm a bit worried I may have a hard time following diet advice from her.  She clearly wasn't taking it herself, since she looked heavier than I am right now. 

I know it's not easy to lose weight - or everyone would do it, but I guess I just have a harder time accepting it from someone who is supposed to be an expert on the subject.  (Really, if you went to a gym, would you hire an out of shape trainer?)  I passed on the intro for the day - said I didn't want to interrupt her lunch (she was pretty well covered in BBQ sauce), and that I had plenty of info online about the phosphorus and potassium levels in the stuff I was eating. 

Hopefully, she knows more than she looks like she does.

[angela515]

I visited the local dialysis center today to meet the nurse.  She pointed out the staff dietitian who was eating her own lunch at the time.  I'm a bit worried I may have a hard time following diet advice from her.  She clearly wasn't taking it herself, since she looked heavier than I am right now. 

I know it's not easy to lose weight - or everyone would do it, but I guess I just have a harder time accepting it from someone who is supposed to be an expert on the subject.  (Really, if you went to a gym, would you hire an out of shape trainer?)  I passed on the intro for the day - said I didn't want to interrupt her lunch (she was pretty well covered in BBQ sauce), and that I had plenty of info online about the phosphorus and potassium levels in the stuff I was eating. 

Hopefully, she knows more than she looks like she does.

  Well, she doesnt need to follow our diet, but I am sure she understands it, from a medical point of view that is, not from experience. She might need to lose weight...but really.. some ppl (even dieticians) dont think they need to lose weight and are happy with how they look and enjoy eating.. not until they get sick themselves will they change their thought process... ya know? Im sure you will do fine as you got us to get advice from.. teehee 

[angieskidney]

Ya when Sandman met my new Dietitian this time around he said the same thing: "How could you take diet advice from someone else who is overweight?" lol I never thought of that. I just saw her as someone who is educated in this field and therefor knows about what foods are high in the things I can't have.


but I DO love this:

(Really, if you went to a gym, would you hire an out of shape trainer?)