Frustrated

[Rgypsie1950]

Hi everyone. I’m new here. I was diagnosed with Stage 4 Kidney Disease a little over 3 years ago. I’m frustrated for several reasons. Firstly, with my previous medical professionals who should have alerted me to my high numbers and recommended a nephrologist years ago and might have stopped or slowed the progress. Next is FOOD. Yes, food. I absolutely want to live on pizza, delicious tomato based sauces and gravies, bananas and avocados!!!

So, here I am, maintaining my stage 4 but so bored with food that I eat the same boring stuff over and over. I’ve almost gotten to the point of figuring out just how much of the “Bad Stuff” I can have and not eat anything else with potassium ever, just to eat Italian again. Plus, I hate cooking.I’m not creative, I like what I like and stick to it, or I used to.

I really need some local people - I’m in Chandler, AZ - that I can get a coffee with or just chat 💬 and get advice on how to incorporate back my favorites into my life. I used to see a dietician, but it really wasn’t as helpful as I expected.

[orangecity41 NKF Ambassador]

The CKD diet can be helpful. I have been on it for almost 7 years. Davita has been helpful as they have lot of recipes. I do eat in moderation avocado and banana. I get frozen and eat small amounts.

[Bassetmommer NKF Ambassador]

There is total abstention and then there is life. For six years, I was so very careful with what I ate. To this day, I have a hard time eating salad because I ate so much. I ended up on dialysis anyways. I do enjoy pizza once in a great while and other no nos. I have terrible potassium and if I look at a potato, well, it shows up. Fortunately, I do not like tomatoes or sauce but it flows through my husband's veins. I just do without certain things and allow other joys in moderation. NO one is taking my piece of cake from me. Just find a happy balance.

By the way, I have seen a red pepper sauce that mimics tomato sauce. You roast the peppers, peel the skin off and then puree it with basil, oregano and thyme. Supposed to be yummy.

[RhenDutchess123]

Its like everything else...in moderation.Other than salt, my Neph did not give me restrictions...He told me to "eat to my labs"..And thats what I have done. It took me over 23 years to go from Stage 3b to Dialysis.. I now do PD (over 3 years) and I still eat to my labs....In fact, sometimes I am shocked at what I get away with lol...And if I do have some Lab Range get elevated, I eat less of it.

Is your Nephologist recommending your diet restrictions or are you self imposing ?

[WildIris]

It really is important to eat to your labs. Not every stage 4 kidney disease patient has high potassium or high phosphorous. Ask, or look at your lab report-it may be available online. Some foods, like potatoes, you can soak before eating, and that will reduce the mineral content.

Sorry to hear about your situation, it is always better to know sooner rather than later that your kidneys are not keeping up. I was sad to give up bananas, but soon found other fruits that I liked just as well, so there's that, just go a week without and maybe you won't miss them. (never had strong feelings about tomatoes).

Also, don't get a blood test when you're dehydrated- check whether your "osmality" is low, meaning you drank too much water, and vice versa. On my last labs, I had good mineral values, was low on some blood cell values, but osmality was also abnormally low, so I don't trust the numbers.