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| | |-+  Wierdest dietary restriction, PLUS an OK'd item
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Author Topic: Wierdest dietary restriction, PLUS an OK'd item  (Read 2134 times)
jmintuck
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« on: October 20, 2016, 07:57:47 PM »

I was OK'd for more chocolate, but just can't get done with the potassium roadblock, that is, potatoes and tomatoes. The dialysis nurse last night said that Mochas are OK for me. Seemingly, an occasional Hot Chocolate would
be OK, too. I have NEVER had to fight PHOSPHORUS, unlike OTOH, POTASSIUM. Potassium is my biggest peeve. Other than that, other labs were BEAUTIFUL. I try to avoid a lot of potassium, but have to be even more careful to locate things that stand in for what would be a potassium rich food. Some pretzels are perfectly fine. My main goal is avoiding potatoes and tomatoes.

I felt like I won a part of my old life back when told I could have some mochas. I chose the Peppermint mocha after Dialysis last night after I got through with dialysis to wait for awhile for the bus to take me back home. DAMN! That was GOOD! That coffee and donut kiosk is MAGICAL.


Oddly enough, at dialysis, I call it Casino room, so do other people, because the beeping of the machines are a little wierd and when they time out, where you can finally go away, it goes bloooeeeep 3 times in rapid succession. A guy and I said, someone won a jackpot. We said it sucked that it WASN'T a real million dollars like you'd get from the casino.
« Last Edit: October 20, 2016, 08:01:39 PM by jmintuck » Logged
LorinnPKD
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« Reply #1 on: October 21, 2016, 04:09:25 AM »

Hahaha!

Getting off the machine kinda feels like winning a million dollars, though!

Now I am craving a mocha... Have to watch the calcium for me, but maybe a tiny one!  Would be so good in this cool weather...
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Charlie B53
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« Reply #2 on: October 21, 2016, 06:23:32 AM »


I've had to cut back to one large cup of coffee in the morning, then it is ice water.   Too much caffiene makes my heart start skipping beats.  That's a feeling you don't want to have.

I adulterate my coffee.  Sometime in the winter I''ll use a pack of hot chocolate mix.  Most of the year, like the cup beside me NOW, is one of those cafe expresso's.  Wife finds them in the close out aisle and grabs me a few at a time, mostly the different mocha's.  These are supposed to be made with hot water, but they work just fine into coffee also.    If you carry a ditty bag I suppose you could put some of the powder into something like a large pill bottle and take it with you to add to coffee anywhere.  Those rectangle containers with a snap on lid I wouldn't trust in a bag.  Too easy to knock it loose and make a huge mess.
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cattlekid
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« Reply #3 on: October 21, 2016, 07:10:37 AM »

It's interesting how different we all are when it comes to dietary restrictions.  I seemed to be impervious to potassium from potatoes and tomatoes.  No problems with minor amounts of pizza and I had potatoes in some form a few times a week.  It would infuriate my in-center dietitian to no end.  I didn't lie to her about what I ate and my potassium was always perfect.  I think she wanted me to be like everybody else.  Sorry woman, I didn't fit into your mold of a "standard dialysis patient".  If you couldn't tell, I hated her with a passion.
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KatieV
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« Reply #4 on: October 21, 2016, 10:13:53 AM »

It's interesting how different we all are when it comes to dietary restrictions.  I seemed to be impervious to potassium from potatoes and tomatoes.  No problems with minor amounts of pizza and I had potatoes in some form a few times a week.  It would infuriate my in-center dietitian to no end.  I didn't lie to her about what I ate and my potassium was always perfect.  I think she wanted me to be like everybody else.  Sorry woman, I didn't fit into your mold of a "standard dialysis patient".  If you couldn't tell, I hated her with a passion.

I've got a pretty good dietitian now, but find that most are aggravating and of little to no help.  My second transplant took some time to start regulating potassium and phosphorus - coming off of Nocturnal NxStage and no restrictions, that was very hard.  It felt like we weren't given any help with what I COULD eat (very strict limits on both), just what I couldn't.  I ate more ramen noodles than I should have while in that period (home alone; husband working, recovering from surgery).

That has really been my only potassium issue.  I try to eat in moderation; for instance, I LOVE potatoes in all forms.  In the past, I would eat mashed potatoes with dinner, and eat leftover mashed potatoes (with cheese & ranch dressing - very healthy, I know!) for breakfast.  I still eat potatoes, just now I refrain from eating them at breakfast!  Over the years, I've found what works for my body for potassium intake. 

Phosphorus, on the other hand, is my nemesis.  [My other weakness is cheese.]  It has been running a little high - crazy PTH levels don't help - and I should do a better job limiting phosphorus and taking my binders. 
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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
jmintuck
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« Reply #5 on: October 21, 2016, 11:37:42 AM »

It's interesting how different we all are when it comes to dietary restrictions.  I seemed to be impervious to potassium from potatoes and tomatoes.  No problems with minor amounts of pizza and I had potatoes in some form a few times a week.  It would infuriate my in-center dietitian to no end.  I didn't lie to her about what I ate and my potassium was always perfect.  I think she wanted me to be like everybody else.  Sorry woman, I didn't fit into your mold of a "standard dialysis patient".  If you couldn't tell, I hated her with a passion.

I've got a pretty good dietitian now, but find that most are aggravating and of little to no help.  My second transplant took some time to start regulating potassium and phosphorus - coming off of Nocturnal NxStage and no restrictions, that was very hard.  It felt like we weren't given any help with what I COULD eat (very strict limits on both), just what I couldn't.  I ate more ramen noodles than I should have while in that period (home alone; husband working, recovering from surgery).

That has really been my only potassium issue.  I try to eat in moderation; for instance, I LOVE potatoes in all forms.  In the past, I would eat mashed potatoes with dinner, and eat leftover mashed potatoes (with cheese & ranch dressing - very healthy, I know!) for breakfast.  I still eat potatoes, just now I refrain from eating them at breakfast!  Over the years, I've found what works for my body for potassium intake. 

Phosphorus, on the other hand, is my nemesis.  [My other weakness is cheese.]  It has been running a little high - crazy PTH levels don't help - and I should do a better job limiting phosphorus and taking my binders.

As my sis says, Holy Doodle. We'd be polar opposites, if we were in the same house. I'd be watching you eat potatoes, and you'd be watching me eat chocolate and cheese. whatamess.
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