How the heck does she do it?

[Dry-Pack-Babe]

I socialize with a fellow patient. Like me, she looks healthy. She doesn't look like anything is wrong with her. But she takes egregious liberties with her diet that I wouldn't feel comfortable taking.

She's been on dialysis for five years. She eats pizza, Almond Joys and Mounds. She drinks Pepsi everyday. Eats cheese, yogurt and nuts. Cheetos. She buys half-gallon of ice cream and puts two scoops on a sugar cone anytime the mood hits her. "Are you crazy eating all these taboo foods?" I told her, genuinely concerned about her, watching in utter disbelief as she devoured a small pizza with extra mozzarella and wash it down with a large Dr. Pepper. "You're gonna kill yourself."

"I'm gonna die from this crappy disease anyway," she said in a I-don't-give-a-damn tone. So I'm gonna enjoy myself before I go. You really should grab a slice of this pizza. It's great."
 
She takes extra binders and in our clinic, one's phosphorous range is suppose to be between 3.5 and 5.5 Anything pass 5.5, we receive a warning. And the highest I've ever seen hers is 5.8.

She's been carrying on like this for five years. Her mother and brother have warned her and she told them to f off. Yes, she said such a thing to her mom. I've seen her do it.

The way she eats is not something I'm going to try, but I wonder how she manages to get away with it. 

[MooseMom]

The human body is mysterious.

[Rerun]

It will catch up with her.  I admire her attitude.  I just can't do that.  Wish I could!  She is probably right, but I just am too compliant.  I will have 1 slice of pizza once in a while.  Or I will go to Papa Murphy's and order it with light sauce and light cheese. 

Best of luck to her.

[brandi1leigh]

 She takes extra binders and in our clinic, one's phosphorous range is suppose to be between 3.5 and 5.5 Anything pass 5.5, we receive a warning. And the highest I've ever seen hers is 5.8.


The way she eats is not something I'm going to try, but I wonder how she manages to get away with it.

Maybe I'm missing something. If her labs remain stable and pretty well within range, why shouldn't she eat what she wants? I monitor my diet to keep within range (I'm not lucky enough to be able to eat whatever I want...my phosphorus keeps climbing back to 6 no matter what I do). However, if my labs came back good after eating pizza and drinking cokes, I would. I mean if she's eating all this "bad" stuff and is only hitting 5.8, good for her. I might cut back just a little to be under the 5.5, but otherwise live it up!

[RichardMEL]

At least she's taking extra binders, so she's aware enough to do *something* to balance out her whims.

Look, when I was on D I had the odd pizza... maybe once a month? I draink coke maybe once a week (again with extra binders) and I balanced it out over a day or whatever and that worked for me. Maybe she's doing something similar, maybe for now her residual kidney function is good with phosphates (I wonder how her K is doing!).

You know though I can certainly relate to and appreciate her attitude. I was of a similar mind really - but not to that extreme of course. My feeling was more one of "The situation I am in sucks, but what's life without enjoyment? If I can have the odd treat and get something I *like* that helps to make things a little easier" - so that's what I did. I tried to do it in a responsible way rather than going over the top, but I did feel kind of similar.

Right now, it's something that is working OK for her - and that's great. Who knows what's going on in the background.. think things likee PTH, bone disease etc. It may well come back to bite her down the track - or maybe not. The human body is weird sometimes.

Hey I wish her luck and hope nothing goes wrong with it - I'd never go to that sort of extreme, no matter how much I might want to at times.. but we're all different.

[Gandalf]

Must admit that I can relate to her somewhat (although maybe not quite to that degree!)- it does get exceedingly frustrating having ones entire life dictated to one, and then all for some minute and abstract lab differences - weights, K count, P count etc etc....  Life has to extend beyond that - even to a Diet Coke or two (or three!).  Guess its a matter of perspective and degree?  It's sad if everytime we eat any substance our overwhelming sense is guilt!

[jbeany]

She gets away with it because she has enough kidney function to handle it, most likely.  If her labs are fine, there's no reason not to eat the things she wants.  Some D patients actually need to eat extra potassium because of their particular chemistry.  The extra binders might have some side effects, but likely those are less than not taking them when she's indulging.

You have to remember that docs and nurses love to give everyone the same limits for diet and fluid - and no patient is ever the same.  I never stopped eating cheese or chocolate - I just ate them in much smaller amounts than I used to.

[okarol]

Jenna never had diet restrictions in her 3 years on dialysis. Her labs were fine. I think part of it was her young age (started at 18 years old) and as jbeany says - enough kidney function to get by.

[Ang]

.

The way she eats is not something I'm going to try, but I wonder how she manages to get away with it.

everything in moderation is ok,but you have to pay the piper some day








EDITED:Fixed quote tag error- kitkatz,Moderator

[RichardMEL]

I was always SO jealous of those rare few that somehow were not on fluid or diet restrictions. Maybe she was/is one of them.

[peleroja]

Like the commercials keep saying, "every body is different," to which I would add that the body is always changing.  A year and a half ago my phosphorus suddenly dropped to 2.2, so they took me off my binders.  I enjoyed cheese, yogurt, milk, etc. for the next year and a half as it gradually rose back to normal.  Now I'm back on my binders, and eat a whole lot less of that stuff.  Heck, if folks want to be non compliant, I figure that's their business and none of mine.  I only have one body to worry about - mine!

[Dry-Pack-Babe]

Good point about worrying about our own bodies. I guess I'm a little jealous. I want to eat chocolate and pizza and gulp Pepsi in large quantities. LOL!

[RichardMEL]

Good point about worrying about our own bodies. I guess I'm a little jealous. I want to eat chocolate and pizza and gulp Pepsi in large quantities. LOL!

post-tx I can do that but it all goes adds to my bulk(thanks so much Prednisolone!) so I have to stay away for other reasons!!! gaaah!!! 

[romanyscarlett]

Everyone processes things differently and it depends on what the rest of her diet is like.

I don't eat any seafood and I rarely (maybe once a month) eat meat so my dietician has said it's ok for me to carry on eating cheese and having milk on my cereal because it's the only place I'm getting protein from. I still have pizza sometimes but I always have it without any tomato sauce and without any toppings. I still have the occasional packet of crisps too but only ever ones that are made of corn or maize like Doritos or Monster Munch.

Life is for living, there's no point preserving your body for decades if you're not going to enjoy those years. As long as her blood results are ok then why shouldn't she enjoy what she wants.

[WishIKnew]

I can relate to her.  I've been very fortunate and for the first three years on PD I really ate whatever I wanted.  Threr last 6 months or so my protein is always just below range and my phospherous just above range.  Not way off, but off enough that my food habits are changing.  Everyone is different!

[Brightsky69]

When I was on dialysis I tried to be "good" with my diet.I did go out on a limb from time to time and paid the price with high phosphorus. At times I would get so itchy I wouldn't be able to sleep.Or I was as jumpy as a crack head.
I learned my lesson after that.

[kimi_g89]

I "try" to follow my diet, but not very hard. I love cheese, so I won't quit eating that, and I have to have my chocolate. I did give up milk and yogurt and even potatoes, which was very hard. I am good about taking my binders. My phosphorus is always super high and my dietitian gets mad at me. 
But everything else is always in good range. It's just so hard to say no to food sometimes, especially when there is a good cook in the household!

[kellyt]

Before transplant when my creatinine was doing all sorts of ups and downs my doctor said that the reason I wasn't showing my sickness (no headaches, no vomiting, no loss of appetite, still urinating, etc.) was probably because of my muscle mass.  Not sure if he was right, but I accepted that.    I was never on diet restrictions or fluid restrictions, either.  I took TUMS as my binders, but my phos was never severely over 5.5.  Maybe 5.8 at the most and that was the day before transplant.  I was never sick due to my disease.  I was very fortunate.  I hope she is able to sustain.