Foods that YOU avoid- Pre Dialysis

[Tkski]

As the topic states, I am curious as to what foods make others sick. I am currently at 14%-16% GFR.

I recently spent a week at the Mayo in Rochester, Mn (the place is beyond words) and learned a great deal of information on many aspects of my disease. Like many, I have always taken only what my Neph said about my diet. Watch your salt, don't drink a lot of caffeine. I am just as much to blame as he is. With the amount of information that is at our finger tips and not venture out and learn on my own, has been just plain ignorant. With that, I can't tell you how much the Neph's at the Mayo stressed over and over again about potassium intake. I had no clue, again completely my fault. As one told me there, with ESRF nothing will send you to dialysis quicker than high potassium levels.

With that, I have completely eliminated all tomato based products. Potato products. My wife and I recently went out for dinner and I had, hands down the most intense tasting steak ever. I ate all 16 oz of it, only to feel horrible for a day and a half. Horrible as in the typical complete loss of energy and flu like symptoms. The Mayo did tell me 1 cup of coffee a day is fine and I'm lucky to drink a half of cup a day, anymore.

[MooseMom]

I was on the pre-renal diet for 8 years, and I don't recall any foods that made me ill, but boy, did my potassium rise if I ate too many tomatoes.  I quickly removed all high potassium foods from my diet.  I didn't have a potato for all of those years.  No beans, no dairy, nada.

Your neph should have referred you to a renal dietician when you were first diagnosed.  Sure, there is a lot of info online, but if you were not told by your nephrologist about the link between diet and potassium/phosphorus, then how would you even know to look for such info in the first place?  I'm glad you were able to get good advice from proper nephs!!

[Hazmat35]

I have been on In-Center Hemo for almost 6 years now; and honestly; there is NOT any food that makes me sick; or that I avoid.  I eat things that are on the DIS-ALLOWED list and DO NOT EAT lists all the time; I drink dark colored soda (pepsi; coke)....! 

Of course; I eat all of these foods / liquids in MODERATION!  That is the key; for me anyway.  I'm sure that there are some that can or cannot eat / drink certain things.  But I have found out for ME; that if I eat things moderately; I can eat just about anything that I want. 

One thing my DR tells me all the time is to stop drinking coffee...THAT IS NOT GOING TO HAPPEN.  I have 2 cups / mugs of coffee everyday....not going to stop; that isn't going to change; don't try it; stop asking!  End of story! 

[iolaire]

I didn't know but I should have avoided star fruit:
http://www.drweil.com/drw/u/QAA400592/Is-Eating-Star-Fruit-Dangerous.html

Since a travel I've eaten a few star fruit in exotic places, not that many but more than I would have had I known!

[Tkski]

Thanks Hazmat for answering. I should have been more specific with my question. I was leaning towards foods that folks avoid pre-dialysis. I changed the title of the post.

[Michael Murphy]

I lasted two years after being told it was time to start dialysis.  I think that I got the two free years do to a diet change I made not for renal reasons  but I switched from processed foods ( frozen meals) to fresh food, I had found shopping for food at Targets had me buying meat and fruits.  Now the problem with delaying the start of dialysis is you can wait to long.  I was feeling ok during this time.  The first time I became sick I knew it was time to start.   I am glad that I got two more years and I know it's possible to delay to long and get very sick. I did two things right, one I had my fistula installed right away and two I did not delude my self, the symptoms were minor but they clearly were a sign it was time to start dialysis. 

[Tkski]

I lasted two years after being told it was time to start dialysis.  I think that I got the two free years do to a diet change I made not for renal reasons  but I switched from processed foods ( frozen meals) to fresh food, I had found shopping for food at Targets had me buying meat and fruits.  Now the problem with delaying the start of dialysis is you can wait to long.  I was feeling ok during this time.  The first time I became sick I knew it was time to start.   I am glad that I got two more years and I know it's possible to delay to long and get very sick. I did two things right, one I had my fistula installed right away and two I did not delude my self, the symptoms were minor but they clearly were a sign it was time to start dialysis.

MM, at that time of changing to fresh foods, did you eliminate or cut back on high potassium foods? Poultry versus beef? I realize that there is no stopping the inevitable, I'm just trying to feel as good as possible before it's time.

[Vt Big Rig]

I lasted 30 months from diagnosis until dialysis. HOWEVER, a huge advantage is having a wife who is a renal dietitian.

But we are all different (THANK GOD) so it is not a contest. Talk to your neph and ask for a dietary consult. We used less salt than we do now that I am on D.

Learn and moderate the phosphorus foods and potassium foods. Have him prescribe some binders and get used to taking them.

Best of Luck to you my IHD friend

[Michael Murphy]

I would have done better if I had eliminated high potassium and phosphorous foods, however I still cheat with them since I am one of the lucky ones who still eliminate all the fluids I drink, so my kidneys still contribute to the elimination of waste.  I don't know how long this will last but it's a perk I would be reluctant to end.  Several times doctors have said that since I am on dialysis damage caused by dyes used for contrast are no problem. I think the doctors learned new curse words since my response was completely unprintable.  I know how fortunate this is and check once a month that my fluid input matches my output. I don't know how long this will last but I have a easier time of this .

[MooseMom]

What is important to remember is that avoiding high potassium/phos foods doesn't necessarily protect the KIDNEYS, rather, it protects the rest of your body.

If your serum potassium is too high, it interferes with the electrical impulses to your heart (potassium being an electrolyte), so it will be your heart that's at risk, not your kidneys.

If your serum phosphorus is too high, your body will try to regulate itself by producing more calcium, and the body does this by leeching calcium from your bones.  This means that your bones become more porous and that more calcium is floating around in your bloodstream that can settle in your soft tissues.

While it is, of course, good to protect your kidneys, it is equally important to protect your body from the consequences of having poor renal function where these substances are not cleared sufficiently.  The excess potassium and phosphorus have to go somewhere...

[charlesc]

TKSKI

I have been  on a strict pre dialysis diet for 13 years. Potassium is the biggy avoid it. Not really that hard once you get in the groove. No kidding.
My neph. suggested that I limit my intake to 2,000 mg /day and I have never exceeded the guidelines. It sounds so hard: NO, milk, icecream, beans, potatoes, avocados, nuts, choclate, potatoes, tomatoes, you mean there is food other than that?

On line are a number of sites that give the potassium levels of just about everything. Limit it as if your life depends on it for it does.

CCC

[Michael Murphy]

My doctor worked a compromise with me prior to starting dialysis if I ate something high in potassium I would take a binder to control the potassium.

[hatedialysis2]

Baking soda and licorice are potassium binders but not sure of dosage.  They are to meant for long term use as baking soda will reduce stomach acids which will interfere with digestion and absorption of nutrients.   Licorice will raise blood pressure

[beckums70]

I always avoided protein before I started dialysis, and then my nephrologist told me that there is likely NO LINK between high protein diets and deterioration of kidney function.

[OneForTheBirds]

NO dairy except some cream cheese and fresh goat cheese, NO potato or tomato, NO seeds... beans, bean sprouts, lentils, nuts, peanuts, mustard, chocolate etc.

[kickingandscreaming]

No cola beverages. Be careful of baked goods as they often contain baking powder that is very high in phosph.  Feta cheese is OK if it is soaked in water that leaches out the salt and actually makes it taste better (IMHO).  Brie is OK. No coconut milk (boo hoo).

[Athena]

Baking soda and licorice are potassium binders but not sure of dosage.  They are to meant for long term use as baking soda will reduce stomach acids which will interfere with digestion and absorption of nutrients.   Licorice will raise blood pressure

That is interesting. I am now dependent on baking soda capsules to control my serum bicarbonate levels and have often wondered what they will end up doing to my stomach or elsewhere. I have started hiccuping when eating food - can the baking soda have anything to do with this?

[OneForTheBirds]

OH yes! No cola

I'm also learning to bake using baking soda instead of baking powder.  It works for pancakes and mini muffins and cookies. Except for cookies you need a source of acid in the dough like some vinegar.

[kickingandscreaming]

Renal friendly baking powder:
Ingredients

1/4 cup cream of tartar
2 tablespoons baking soda
Preparation

Sift together cream of tartar and baking soda using a fine strainer.
Store in an airtight jar or baggie at room temperature until ready to use.

https://www.davita.com/recipes/sauces-and-seasonings/homemade-phosphorus-free-baking-powder/r/5089

[Zach]

Just be aware that 2 tablespoons of baking soda contain about 7,554 mg Sodium.
Though most recipes use only a teaspoon (1,259 mg sodium).

Also be aware the 1/4 cup of cream of tartar has about 3,465 mg of Potassium.
One teaspoon is just 495 mg potassium.

Eat what you like, just in moderation.
And more dialysis is better.
 

[deckerj]

I really think it's going to vary a lot from person to person, and you just have to use your labs as a guide, which is why it's extremely important that you go to a lab that provides your results directly to you so you don't have to wait for your doctor appointment.

eGFR showed up as 17 in my last lab about a month ago; still pre-dialysis. In my case electrolytes were usually somewhat high, and in the case of phosphorous, always above reference levels, but that all went away when my nephrologist took me off of lisinopril (for whatever reason, my proteinuria stopped, so the nephrologist wanted to get me off lisinopril because it wasn't providing any benefit other than keeping BP down, and in fact was slowing filtration.) After that, my dietary restrictions basically went away entirely, other than fluid restriction and not going overboard with protein. My potassium usually shows up low in my labs, as does my phosphorous. If I stick to a pre-dialysis diet like I have in the past, I get heart palpitations that go away once I eat a banana. I don't even use binders anymore and eat beans and other crap that's high in phosphorous, and yet I have no problems. Meanwhile other people with similar eGFR have to basically remove anything with a medium to high amount of potassium.

I wonder if the underlying cause of dialysis influences this...who knows. In any case, I understand clear and well how much a dialysis and even a pre-dialysis diet is such a royal pain in the ass, and I'll likely be there again soon when my kidneys finally bite the dust, likely within a year or two.