Curios

[48750]

With 15% of kidneys working, can you go off the rails once in a GREAT while and have cheese pizza, fish and chips or fried chicken strips, or low sodium potato chips, maybe a BLT.

The answer is probably no, but hope that once in a blue moon is okay.

[Hidden]

Actually, you can do whatever you want as long as you are willing to accept the consequences of your actions.If it were me, I wouldn't risk it because I'm enjoying my life and would like to for as long as possible.

I had to give up favorites like pizza, ribs, ice cream and an occasional beer, but I've come to enjoy my lifestyle changes and new kidney-friendly meals.

Best of luck with your decision.

[48750 in reply to Hidden]

I hear you. Thanks for reply

[Bet117 NKF Ambassador]

Hi 48750,

I agree with Mr._Kidney. If your kidneys are functioning at 15%, you are taking a risk by forcing them to work harder by eating fried, salty or potassium rich foods.

Have you spoken to your doctor and dietician about this? Particularly your doctor as he/ she has your labs and knows exactly how well your kidneys as well as your body is functioning. This will include your liver and blood pressure.

I realize that adjusting to a new lifestyle; not diet is challenging, but you will get used to it once you find foods which are equally satisfying and healthier for you. A renal dietician can help there.

Everyone is different and has different body chemistry. You may speak to people who eat certain foods but in moderation and they are fine. That may not be good for you.

Give your doctor a call and ask if these foods are safe for you where your body is.

Reach out again, as we are always here to support and have healthier food choices which we have come to love.

Bet

[48750 in reply to Bet117]

My kidney doctor says NOTHING, that’s why I’m waiting to go to a nephrology clinic by referral after seeing my regular dr yesterday. No dietitian, I’m doing the kidney diet myself learning on the web. Yes, it’s extremely difficult not having what you love to eat. I quit drinking and smoking YEARS ago but I had food, even though I had to watch that with my hypoglycemia. I am aware of changing ones usual MO as I’ve done it. Like I said, good food was all I had left. Surely one can understand.

Thanks for reply

[Bet117 NKF Ambassador in reply to 48750]

48750,

Actually I do understand as having doctors who are not listening to or communicating well with you makes everything more challenging and frustrating as diet is so important, especially if you are diabetic or have hypoglycemia. This should have been touched upon at an appointment.

You are making a positive health move by seeking the opinion of a nephrologist who has your back and will make your health the priority; which your former obviously had not.

Keep close touch with your regular doctor; mention what has been going on with your nephrologist and how you are presently feeling and ask for some help.

Your regular doctor can recommend a dietician as well as provide you with support.

The fact that you stopped smoking and consuming alcohol are also clearly to your benefit.

There are more things to cherish than food.

Go out and take a walk, have a cup of tea and speak to someone. Family, friends, television shows that you can get lost in and other things that you enjoy.

Food is secondary. You eat to live, not live to eat.

Below are some links to good food which is healthy. Try the recipes.

nephcure.org/livingwithkidn...

nephcure.org/livingwithkidn...

kidneyfund.org/kidney-disea...

cdc.gov/diabetes/managing/e...

Bear in mind that this is a journey and process that you don't have to face alone.

B..

[48750 in reply to Bet117]

Thank you. I appreciate it. Thanks for links too.

[Bet117 NKF Ambassador in reply to 48750]

48750,

Gosh, no need to thank me.

I am happy to be there if I can.

I promise that things will all work out in time. You are on the right path.

Please remember my thoughts and continue to eat sensibly and take care of yourself.

Reach out at any time as I will always reach back.

Bet 😊

[48750 in reply to Bet117]

Well I do thank you because I appreciate you taking the time and reply as others have.😀

[WinJ3]

Oooboy🥺....4th of July blues. Follow Mr_Kidney advice. There are consequences for bad choices.

You can learn to enjoy healthier food choices. You'll feel better too.

[Bassetmommer NKF Ambassador]

I am going to disagree to some extent with my very astute and learned colleagues. It depends on what you eat. Pizza, restaurant style, too much fat and salt. Modify it with no tomatoes sauce, lots of veggies and no cheese, or a sprinkle of parm, then yes. Fried foods, totally not worth it. Not only because of the fat but they also raise you glycemic levels. Potassium, well...it depends if you have an issue with it. I was eating a lot more potassium veggies and my potassium went up this last lab. So now, I have to go back and stay away from some things I tried adding like legumes and zucchini and Brussel sprouts see if I can get it back down. Totally raised my potassium.

Choices like bacon and potato chips are garbage foods. Eventually you will lose your taste for them. Not worth the 30 seconds you eat it to put that in your gut.

Fish and chips, nope, no fries. Again, garbage food. Fried(bad) salt(bad) and potato (high in potassium bad) Fish if you are eating meat, not so bad but not fried.

I do live to eat.... cook, bake, grow, whatever.... I am a total foodie. Life is about choices. Do I miss things? Yes. Did I have birthday cake for my birthday last month, yes I did. Did I have Carmel corn freshly made while on vacation? Yes I did. Did I eat chicken twice in one week when I am only eating plant based? ( Had a hard time finding PB restaurant foods out where we were) Did my GFR drop back down to 13 from 15.... YES IT DID.

[48750 in reply to Bassetmommer]

Thank you for sharing. I do appreciate hearing your experience.😀

[Bet117 NKF Ambassador in reply to Bassetmommer]

I do agree with you. Moderation, adjustment. If potassium, phosphorous is elevated, based on labs find an alternative. Garbage is not good even for the healthiest people.

Every person is different with different needs.

Quantities are key.

Great input to conversation.

[Okiksaints1955]

Two things: 1. Research, learn, listen, digest, know the risk, ascertain what you want to risk and then make your own choice.

2. Work with your Nephrologist on #1. Be sure he gets your understanding and interpretation. He is the expert (but be sure he is the right Nephrologist for you and you trust him.)

Having said that - please add more context to your query. It will help the community provide more appropriate sharing of our experiences. Example:

1. 15% kidney function and with CKD that is stable for a few years (not or slowly progressing). I was actually in this stage for a couple of years. My Nephrologist put me on daily Velphoro and allowed me to have 2 cheat meals a month. Velphoro taken with my first bite (only 1 big meal a day) encapsulates my poop and they come out black. I understand Velphoro seals the bad nutrients of the food I eat. It allowed me to enjoy every once in a while.

2. 15% and doing hemodialysis. In researching my options for next level treatments, I actually went to dialysis centers and observe, ask questions, see the demeanor of both the patient and the caregiver, etc. This actually cemented my decision to not go this route (more depress and unhappy people just doing the routine) But in a few visits, I managed to observe a couple of patients who would bring and eat hamburger, ice cream, etc. while doing their hemodialysis. From different clinics and Nephrologist. I casually talked to them and they said they have the clearance of their Nephrologist. The main reasoning behind is that - the hemodialysis catches many impurities anyways and it's a risk they are willing to take. Wow! Unbelievable! But I never followed up the veracity as I already decided not to go this route. Maybe someone else in the community has more experience they can share.

3. After my kidney transplant, my Nephrologist warned me (with a naughty smile) that he will start changing my diet to test my new kidney. True enough, my menu went from porridge for 2 days to lobster, steak, mushroom soup on the 6-7th days. I slowly tried bites but could never finish full meals. After decades of diet shift my pallet had change. I found I now enjoy the healthy food more (or maybe my subconscious mind rejecting or maybe even guilt). I am still slowly changing my diet. Of course, my Nephrologist is in the know all the way. So he can interpret appropriately my tests results. He is still adjusting my meds.

So, there are ways to enjoy. You just have to know the risks, your willingness to take them, how desperate are your desires and how happy or enjoyable do you feel afterwards. Just because we have this condition (whatever stage one is in) doesn't mean we can never enjoy the normalcy living has to offer.

Take care and be well.

[Bet117 NKF Ambassador in reply to Okiksaints1955]

Well put.Take good care.

In my thoughts!

[Darlenia in reply to Okiksaints1955]

I hear you about the binders! My husband is a diabetic and has kidney failure. He's been on HD and PD. The diabetes diet often conflicts with the renal diet and so forth. So we use binders to work with food choices.

[48750 in reply to Okiksaints1955]

My response to you was answered under another. Under Michael. Another thing I have a problem with technology.

[Michael__S]

IMO the question that you should ask yourself is why would you need to eat those foods in the first place. Regardless whether every once in a great moon mean once a season or once a year. If you try hard enough you can probably find healthier alternative that are in line with a kidney friendly diet, such as this for example. davita.com/diet-nutrition/r...

I don't know your exacts restrictions but AFAIK fish are not usually considered harmful to your kidney. Perhaps you could get a smaller piece of salmon or halibut and eat it grilled. Perhaps one or two thin slice of sweet potato grilled in the oven could be substituted for the french fries, and limiting the serving to the amount of potassium it contains. There are tons of recipes out there that don't involve salt (although you likely need more than 0mg per day so perhaps a very minimal amount within your daily allowance would be appropriate as a seasoning). One of the best thing I found to give great flavor to my food is lemon juice.

And various spices, don't cheap them out. Spend a few extra cents or dollar and get the best one in town. Get them fresh, in small quantity and replace them often to keep its flavor profile at its peak. It's absolutely worth it. There are also various techniques that can be used such as heating your spices on a dry pan to get great flavor but I have not try them all yet.

How much of this or that or how often is EXACTLY the kind of questions that a renal dietician would be best positioned to tell you. Being specialized in food you can expect them to have alternative to offer or what a once a year cheat meal could look like without putting your health at risk.

Also how bad fat is for you is up for debate and also depend of your current medical condition and limitation. Not something I could offer advice for. There is quite a massive difference between the junk food around the corner and cooking a small piece of reasonably good quality battered fish in olive oil. That could very well be something that you could eat every once in a great moon without derailing your kidney diet (edit: or perhaps once a month). And eat it grilled most of the time in between. If the size and the method of cooking is right and nothing exceed your dietary allowance you could even eat it every week.

Oddly enough not every fat will raise your LDL. That doesn't mean to eat as much fat as you want. AFAIK and not knowing your limitations olive and canola oil are generally considered healthy fat. Trans fat on the other end offer the worst of both world. They behave like an unsaturated fat and raise your LDL like the worst saturated fat. There are still research and debate as to which saturated fat is good or bad, best is to keep it simple and follow the guidance .. unsaturated fat are favored over saturated fat. I am merely in stage 3a and for example from the advice of my RD was to substituted cream for whole milk for cooking, for the type of meal that I might eat once or twice a month (e.g. 100% home-made fettucine alfredo or carbonara) but most of the year 0. I frequently grate a minimal of hard cheese (saturated fat) on my food to get great flavors. All in all it's a small percentage compared to a good quality olive oil that I drizzle on many of my plates, the limit being overall calories. I am in weight loss right now and still have less generous amount. Low phosphorus non-dairy cheese is likely more appropriate for you. blogs.davita.com/kidney-die...

[Bet117 NKF Ambassador in reply to Michael__S]

Great reply with invaluable insight and shared information, beneficial to all.Recipes sound great!

Thanks so much!

[48750]

Thank you very much. I had no idea the 15% function could last for any length of time without going for dialysis. I just recently learned that I only have 15% function. I am waiting to go to a nephrology clinic after asking my regular doctor for a referral because the kidney dr tells me nothing. I had been diagnosed a couple yrs ago with stage 3 and now 4 with the 15%. I’ve been trying to find out what to cut out of my diet and find alternatives. So far, nothing tasty. Perhaps once I get to the clinic they can point me to a nutritionist since I’m not good at doing this by myself.Tried to get the cookbook from that Davila website but for some reason nothing works and I can’t even sign up.

Thank you for sharing your experience, strength and hope okiksaints1955😀👍

[Okiksaints1955 in reply to 48750]

48750 .... you have just started your journey. Knowing your condition is the first step.

The most important next step is to find the right Nephrologist. He will be your partner in your long journey. BTW, I was in stage 4 and 15-20% kidney function for 7-8 years (my Nephrologist also mentioned that he can still extend 1-2 years without going to dialysis)..

How do you know he is the right one?

He will answer your questions, trivial or otherwise. He will tell you he doesn't know the answer but will research and/or consult with his colleagues. He is progressive and pro-active in discussing new found studies and medicines. He will not get annoyed or tired answering your queries. Preferably younger and full of energy. But he will most likely be expensive (they charge ny time spent) So keep looking until you find the right one. You are the client and you deserve only the best. Don't hesitate to move along, get second opinion, change Nephrologist - if you are not satisfied

Once you find your right Nephrologist, now you can create plans, goals, options, matrix analysis, etc. He will be the only qualified expert that will guide you. So you need to trust him (remember, trust but verify)

Always bear in mind that your body and your condition is unique to you. As ours is to us. What you should take away from this forum is they are from our own experiences, research, reads, studies, our own Nephrologist, etc. They are unique to us and products of trial and error ( it is not a perfect science). Listen and digest, convert them in the form of questions you will ask your Nephrologist. Together with him, you will transform all the information into options. And under the guidance of your Nephrologist, you will make a decision only on your own. After all, you are the one that will live with it.

And then, be consoled and satisfied by the fact that you have done due diligence and that's all you can control and do. Embrace, accept and be content. Then you can be happy in whatever form of normalcy you can be at peace.

It is going to be a long journey. Good luck, take care and be well.

[48750 in reply to Okiksaints1955]

Thank you SO much. I can’t tell you how I appreciate the reply. I have relaxed my mind and emotions with replies like yours.

[Tuolumne]

I have changed my diet to "mostly vegan" (my kidneys are in the 50% range). The research I've encountered says that mostly plant-based is very kidney-friendly.

So far nothing horrible has happened when I treat myself to something a little more decadent (but still vegan). For example, vegan cheese sauce on pasta and vegetables. It's very salty, so I have to ration it and don't have it very often. If I keep track of my sodium, protein, etc so everything is within recommended limits for my condition, these are the kinds of treats I occasionally allow myself. Maybe you can find a vegan cheese pizza with cauliflower crust? With your kidneys at 15%, I would be very careful. There are definitely delicious foods you can have, but you have to change your mindset and focus on what you can have. There are some pretty good vegan substitutes for meat, but you still have to make sure they're not too full of salt, etc.

[48750]

Thank you. The information and your personal history with the food is appreciated. I only got the news last week so my mindset needs a little time to change. The kidney dr told me on my first visit that there was nothing I could do. Now I know there WERE things I could have done and now just staying away from higher potassium foods. I have never added salt while cooking and bought low sodium foods whenever possible. With hypoglycemia my diet was high protein, low carbohydrates. I also gave up sugar. Now when I read labels, I see even low sodium foods are high in potassium. Right now I’m doing the best I can without having proper kidney care. I have a referral to a nephrology clinic. Hoping then I will be in contact with someone who can educate me in a diet from my tests.

[shouty]

I see you have had the best advice already but just wanted to say I do get it. I gave up Alcohol and other stuff but when put on a fluid restriction in hospital of only 750 mls in 24hrs I could have cried. Three small cups of tea a day and no coffee allowed on the ward. All fluid taken in consideration like gravy and milk on cereal ( so even smaller cups of tea 😒) I am lucky as what I had ,Nephrotic Syndrome , went into remission for now. Still try to eat healthier but I do understand how difficult it is even though you know it's good for you

All the best to you

Hattie

[48750 in reply to shouty]

Thank you Hattie. How blessed that you’re in remission 😀

[drmind]

My own thoughts are that once you're away from these foods, you develop a taste for other healthier versions. And, once you try the unhealthy ones again, you kind of start back at step #1 in adjusting to doing without them. Right now, I'm about on steps #4 and #5 in adjusting to no salt and I don't want to go back to step #1 when I missed salt terribly. Right now, I'd like to have things salted, but I can live without it and I'm happy to have reached this point and look forward to never missing it at all soon. Right now, I don't have potassium or fat problems, but I intend to process any if they develop in the same way as I'm dealing with salt: slow and easy and don't look back. But, best of luck with your diet. We are all different and all have different habits and motivation.

[48750]

Thank you for your reply and I wish you success with the salt. It’s everything else I’m having trouble with.

[PecanSandie]

It's easy to have trouble! Sometimes it's frustrating and just very difficult to stay the course. Personally I would totally stop eating meat (wouldn't miss it at all) but I am anemic (even though my iron level is fine) . Another frustration I really feel my husband shouldn't have to deprive himself of what he likes because of my condition. How much can you force someone else to be on your diet?

[Meettheparents]

I feel compelled to share my experience in answer to your question. I eat a mostly vegan diet, which has greatly improved my kidney function. I have found that the times I’ve gone “off the rails”, I have paid for it. My body has gotten used to this better way of eating, and now doesn’t like having to digest junk food. Every time I veer off my plant-based way of eating, I develop bloating and diarrhea. It’s not worth it.

[48750 in reply to Meettheparents]

Thank you for sharing