Discouraged by diet

[Grams70]

I have been trying to follow renal diet for nine months. It consists of pretty much the same foods everyday! Rice, plain pasta, chicken, fish, rarely meat, cereal, veggies, and fruit. I drink only water and have shortbread cookies as a treat. I am at stage 3a. I miss not being able to eat Chinese food, pizza, and the freedom to just go to resturants and order what you would really like to eat. My question is how do you stay positive about having to follow this diet for the duration of your lifetime and what do you eat to make it a little more appealing? Some days it is very difficult with all of our restrictions! Also am not too encouraged by most renal recipes and especially the very small amounts per serving, I am the only one with ckd in my entire family and it is difficult at times with family gatherings and celebrations. All the posts that I read everyone is so encouraging and follow their diets consistently and have adjusted to the changes in their lives positivity. Any suggestions would be much appreciated! Thank you!

[saifomar]

I am at stage 3B myself and 'yes' I follow the same diet plan as you have mentioned - only I have cut off red meat completely. Also no eating outside at all. I also have learned to cook some Chinese,Thai and Indian dishes at home. The Chinese, Thai and Indian food available in the restaurants in America & UK are "NOT" what they eat at their homes on a daily basis. Home cooked Indian, Thai and Chinese food are very healthy for over all health and actually aids in keeping the kidney's working. One can find the recipes on YouTube for free where they show what or how to eat very heart & kidney healthy home cooked Chinese, Thai and Indian meals. As for family gatherings I always stick to nibbling on biscuits, fruits and veggies (if any), drinking water and focusing more on the conversation and the gathering at hand instead of focusing on "what do I eat to get full" - remember 'portion' is key to staying healthy at this stage.

[Grams70 in reply to saifomar]

Hi Saifomar

Thank you for your response and information. Will look up the recipes on utube. i will need to get more adventurous with my cooking. Am glad to know that someone else is on the same diet plan. I appreciate the support and feedback.

Grams70

[Nicolala]

Hi grams 70

I'm surprised that you have to be on such a strict diet at stage 3. I've been dialysing for 26 years and have never followed the diet so strictly!

I have always eaten mashed potatoes, chips ( with parboiled potatoes) and have the occasional pizza or chinese as a treat. Chinese is very salty and high in phosphate. I won't say you should be able to eat other things; that's not for me to say.

I avoid mushrooms, bananas, chocolaty puddings and tomato based sauces. I have the odd jacket potato before dialysis and also have the odd cup of coffee. I dialyse well, so my potassium is always ok. I have chicken and eat red meat once or twice a week. I drink what I fancy, although never touch fruit juice, cola or hot chocolate. I eat eggs and cottage cheese, hard cheese I do limit. I have fish-smoked fish is higher in salt and phosphate.

I would suggest you have a frank discussion with your dietician. You are not on dialysis so still have a reasonable amount of kidney function. Therefore your kidneys will still be able to rid your blood of potassium. I would have thought you still need a certain amount of protein.

I would say that salt is your enemy. This is one to avoid.

You should be able to eat out: find a restaurant with a varied menu. Your life will be far more restricted if you end up having dialysis, you should live it as muxh as you can now.

Good luck. X

[Grams70 in reply to Nicolala]

Hi Nicolala,

Thank you so very much for your response. I was told to limit my protein to 50 grams and salt to 1500mg. Also I needed to watch calories and lose weight as I was pre diabetic. Also keep phosphorus at 800 mg. Reducing meat was my decision since everything that I read states it is harder on the kidneys to process. Part of the problem is ME and my fears and trying to do everything that may preserve kidney function. Ironically I was just talking to my husband yesterday and telling him what an amazing young lady you are and how you are always so positive about everything despite everything that you have dealt with in your life. I am hoping to get an appointment with a dietician after I see my doctor in March. Good luck to you too!

Grams70

[Nicolala in reply to Grams70]

Haha! I'm 46-not so young anymore 😊

I don't blame you for trying to look after your kidneys now. I went from diagnosis to dialysis in 2 years-there were no stages back then. Nowadays, doctors catch kidney disease much earlier and there are more preventative treatments. How effective they are perhaps depends on the diagnosis. Nothing could have stopped my disease eating away at mine.

Red meat-when the kidneys break it down it creates creatinine. Muscley patients have a high creatinine as the muscles gradually become weaker with illness and dialysis, so reducing it is a good thing. Losing weight is certainly no bad thing either. I think being so restricted makes one miserable -a little of what you fancy, within reason, does you good. And I haven't always been good. In my 20s I probably didn't look after myself as well as I should and I got away with it. Now I have calcification problems -caused mostly by phosphate binders! Long term dialysis does bring its own problems to be honest.

When you go to see the dietician, ask about your bloods and whether there there are things you can eat occasionally. Pick your 3 top things you miss. Would chinese food be ok once in a while, for example. And well done for being so determined.

Let me know how you get on x

[Bunkin]

I too get discouraged by the diet only I'm stage 4 so I really need to stick with it. My problem is I have to keep phosphorous and potassium and protein low. After I eat I'm still hungry. I'm hypoglycemic so I have to eat all of the time. I strayed from my diet over the holidays and my lab came back bad! Am now back on track so will see if it helps in next 3 months. Being stage 4 my goal is to avoid dialysis as long as I can. That's what motivates me to do better. I wish I had started working on it sooner and probably wouldn't be stage 4 now. It's not fun but you can do it! Set a goal and work toward it. Prayers for you. God can do anything😀

[Grams70]

Hi Bunkin

Thank you for your response. It gets discouraging since lot of our friends go out to dine on a regular basis and we would often join them and now that has changed. I am trying to stay determined but do have to admit I do get my "feeling down" periods and would just like to rebel! It indeed is not fun at times. Prayers for you too!

Grams70

[poppydolly]

I am more like Grams70 in my diet approach. In my view your mental health is just as important and spending your life being so restrictive can't help you. You will need to stay positive for your own good because this is a long journey. An occasional Chinese will do you more good mentally that it will do harm to your kidneys. I can understand your need to stay off dialysis but if it is inevitable it is inevitable and you have got to enjoy life in the meantime. Being on dialysis is not the end of the world it just needs some adjustments. Do go to family gatherings, do go out with friends and go on holiday. The old saying is true that a little of what you fancy does you good. Good luck.