No diet restrictions/modifications at all?

[Skandrews]

My mom has been on dialysis for about a year now and hasn't been following any particular diet at all.  She drinks Pepsi and eats chocolate and ice cream and lasagna.  She tells me that she can have anything she wants, in moderation.  She's not a huge eater, she's not diabetic and her weight is fine--I'm sure she is not eating the full pint of ice cream but still . . .She also seems to be not handling her dialysis well--although we don't have anything to compare to.  She gets major headaches, muscle cramps and nausea.  Could this be related to her diet?  Her labs are coming back fine, maybe a little high in phospherous but still within the acceptable range and she says as long as her labs are ok what she's doing is fine.  But she's so sick and tired!  It's so hard because if I was told I could never have chocolate or cheese again I don't know what I'd do, but if it's making her sick, shouldn't she stop?

[Robby712]

Diet plays a huge roll in how one handles dialysis...

Phosphorus, Potassium, Sodium, and liquids (40-60 oz between treatments?) should all be restricted...I'm not even going to try to list all the things that is on our restricted or avoid list, because it's just too long.  Anyone that has been on dialysis knows it's probably easier to list the things you CAN eat than what you shouldn't.

Also I'd point out that things like ice cream, pudding, jello, popsicles, etc...(stuff that is liquid at room temp) would be considered part of her fluid intake.

Wherever she dialyzes they should have a dietitian that has explained or should explain all of this all to her...

Here is a link that might help understand what is restricted and why...it also has a link to find dietitians in your area:
http://www.medicinenet.com/script/main/art.asp?articlekey=78054

[Skandrews]

And there you have the problem with being a relative that cares--I KNOW the restrictions but it's not my body.  It's not even really my business.  It is her decision and she chooses not to restrict herself.  She tells me that the dietition/nutritionist at the cliinic says that as long as her labs are fine she doesn't need to change anything.  But her not feeling well all the time--is that the diet (or lack of) or the dialysis?

[peleroja]

If her labs are all "fine," it is more likely the dialysis.  Is she at least taking her binders to help with all the phosphorus she's ingesting?  Too much phosphorus might be leaching calcium out of her bones and could potentially lead to a broken bone.  Question.  Does she just tell you her labs are fine, or have you actually seen her labs or had them explained?  It sounds a lot like she's in major denial about her diet.

[David13]

A great deal of how well she is coping (or not coping) may have to do with the amount of residual renal function she has remaining.  If she still has a good amount of residual renal function, she can probably get away with a more liberal diet and the results will be less likely to show up in her lab results.  However, as we all know, this residual function will eventually become less and less as time goes by, and she will be forced to either follow a more restricted diet or face the consequences. 

[jbeany]

If her labs are fine, I wouldn't worry too much about the diet.  The biggest issues are fluid, potassium and phosphorus.  I never had an issue with the potassium, even on in-center.  The phos can be dealt with by taking binders.  The fluid might be more of a problem.  If she's going in to dialysis with a lot of fluid gain, then the treatments are a lot harder on the body.

The cramps and nausea may also be a sign that they are pulling too much fluid, though.  Have they tried upping her dry weight?

As for being tired - if her labs show that she's not anemic or low on iron, then she may just be getting inadequate dialysis.  I was on in-center for 9 months, and was exhausted most of the time, even when my labs and dry wt weren't the issue.  That only changed when I switched to home hemo.

[RichardMEL]

You'd think if she was putting on too much fluid (eg: over 2-3kg between treatments, which is the recommended) then the staff should inform her that she's putting on too much, and talk to her about her fluids. Though if her weight is OK (I mean weight gain between treatments, so mostly fluid) she may still be urinating the bulk of it out (I am envious!! ). I agree that cramping, specially on dialysis, would be the result of a too low dry weight and/or taking too much fluid off. How is her BP?

I do know a woman who has been on hemo here for over a year and she has no fluid restrictions... I always growl in her general direction (out of envy, not anger)

As you say it's her body and her choices, though one would think if she was having such a hard time with dialysis she might be looking for ways to alieviate that. Do you know if she has spoken to the staff regarding the issues she is having?

I realise it must be very frustrating to see her go through this specially when it may be as simple as a change to her diet or fluid intake that might make things a little better for her... but in the end it's her choice to do as she wants.

[julian230]

Diet plays a huge roll in how one handles dialysis...

Phosphorus, Potassium, Sodium, and liquids (40-60 oz between treatments?) should all be restricted...I'm not even going to try to list all the things that is on our restricted or avoid list, because it's just too long.  Anyone that has been on dialysis knows it's probably easier to list the things you CAN eat than what you shouldn't.

Also I'd point out that things like ice cream, pudding, jello, popsicles, etc...(stuff that is liquid at room temp) would be considered part of her fluid intake.

Wherever she dialyzes they should have a dietitian that has explained or should explain all of this all to her...

Here is a link that might help understand what is restricted and why...it also has a link to find dietitians in your area:
http://www.medicinenet.com/script/main/art.asp?articlekey=78054

40-60 ounces? Lucky! I was told 32 ounces...

[flip]

If her numbers are good, I don't think it's the diet that is making her sick. I'm very liberal with my diet and the labs are still excellent. I don't follow my fluid restrictions either. I figure that if I'm going to be there for 3.5 hours anyway, I might as well pull off a kilo or two.

She may need something simple like finding a UF profile and blood flow that suits her system better.

[Maggie and Jeff]

Maggie has been on dialysis for more than 2 years the last 24 hour urine test (2-3 months ago) had right at 2000ml in it. 
Maggie started on the NxStage home Hemodialysis daily. 
For the past 2 years we have (about 98% of the time) only pulled .5 UF off each treatment. 
She drinks at least 2-3 liters per day.
Maggie does retain water when she eats to much salt but she is also taking Furosemide 80mg 1 per day a diuretic.
She does not usually have those ups and downs we hear you get from 3 days per week.
Maggie has a protein leak she takes 7 grams of protein everyday to keep her protein and albumin up to the level they should be.

Protein with NO sugar, NO phosphorous, and NO potassium
http://ihatedialysis.com/forum/index.php?topic=10191.msg173112#msg173112

I am guessing that your mom goes to the center for her treatments maybe ya'll could look into Nocturnal in-clinic or home hemo daily because the more often one dialyzes the less stress that is put on the body and the better you feel. 
If the labs are good it could be low vitamin B (they don't test Maggie's even though the machine removes vitamin B). If she is not already taking it she could ask her doctor to run that test with the next labs.

Remember always ask if you have a question.  Ask us, Ask mom, Ask the doctors, Ask the nurses, Why not. We are all learning how to better treat ESRD everyday.   

It's great she has you to help her. Keep up the good work and keep helping her get her ESRD education.

[RichardMEL]

You all have to remember that everyone is different and one person's requirements and restrictions will be different to the next - within some broad guidelines of course. For example I'm limited to around 1lt/day fluid intake, yet I know two women who have NO restrictions, and one of them goes out drinking every Saturday night and just has whatever (I am SOOOO envious!!! lol)... and some will have more strenious dietry restrictions than others depending on their labs and their particular condition (eg: diabetes yes/no, other issues going on)... so there's no hard and fast rule.. that's why sometimes discussing this stuff with fellow patients can lead to a bit of a misunderstanding if one person is allowed to do one thing or restricted to something that may not hold for everyone.

Just IMHO.