I was only diagnosed about 8 months ago. For now I’ve settled in the low GFR 40’s. I never know what to tell people that I’m dining out with about my health. We often eat shared meals when eating out so I don’t make a big deal about it but just make sure there are a couple of things that I can eat. Invariably a friend will ask how long I’ve been off red meat or similar. I tend to make light of it and say something like I’ve had dodgy kidney results. I don’t want to worry anyone. Of course my family and close friends know that I have CKD. Should I just call it that to everyone? I’m wondering what people here said when first diagnosed? Thanks
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Its really none of anyone's business. So, tell who you want. I only told people that cared about me and knew me well. People have a funny reaction to CKD. They do not understand it. As far as diet, you do not need to explain anything. Just do it. I went off red meat long before I was diagnosed and I just told people who were nosey it was a personal choice.
I have to laugh at people and their desire to get "into personal business." My first office where I worked, my desk faced the hallway. We had no doors. It really sucked. When I ate lunch at my desk, people felt it was perfectly alright to come in an inspect what I was eating, which was mostly salad. And they made comments. My boss was famous for it. She would come in, inspect and they say, " I do not know why you don't lose weight with what you eat."
Now conversely, if you are going to be looking for a kidney donor down the line, tell everyone. You never know where it might come from. You are a long way off from that though.
Haha love your reply. I have actually told most of the people who matter to me and yes they still don’t really get it but for now that’s okay. When ordering my own meal it’s so easy. There is always something okay and delicious. It’s when we go to Asian restaurants which is so common here in Australia. All the dishes go in the middle. It’s not just a matter of saying no meat. The sodium content is nuts in Asian food so I feel I need to speak up. If possible I try and choose the restaurant. We eat out with friends about three times a week
I love Asian food and had to stop it, at least for a while. It is heavily salted and what I like has oil in it. But...when we did eat it, I switched to veggie lo mien and added steam veggies. Until I ordered the veggies to take home. When I got to the bottom, there was water left from the veggies.....BROWN water, and it had dirt in it. YUCK!
I find that people criticize those who have control over their food, aka dieting, that other people are jealous and want to sabotage you. Don't let them. Order what you need and want and tell them to mind their own menu.
I’m born and bred from Hong Kong as were my parents despite being British so Asian food is the norm for me. I cook it a lot and like you, have had to give up a few of my fave dishes. I often cook steamed fish with ginger and spring onions now. It’s one thing when you cook at home though. Ordering the same in a restaurant, it’s unnecessarily salty. Luckily I don’t ever hang around with people who criticise what I eat but they certainly ask questions about my now limited diet and vague admission of dodgy kidney blood results! I quit dieting about seven years ago. Best thing I ever did. I haven’t consulted a renal dietitian yet but it’s about time I did as I also suffer from bad silent reflux which limits my diet further and I really feel I’m not getting enough nutrition. Sorry I’m rambling now
I have a story about work experience that has nothing to do with CKD. Your story reminded me of a supervisor I once had. Whatever I kept at my desk, be it snacks or some kind of OTC like Advil or Pepcid, she assumed that I brought it for her, and would help herself to whatever it was, whether I was there, or not. She never asked. Very insensitive and entitled, as your boss appeared to be. Grrrrr….
Ramble on.... I can talk food for days. Just so you know your CKD is not at in a bad place. With your knowledge and cooking abilities, and eating clean, you can stay where you are for a very long time. I went to a renal diet in 2018. I was stage four. I stayed there for several years and then went to stage five. I was told in 2018 I would be on dialysis in six months. It was over 6 years later. And because I started when I still have residual function, I am ony doing two hours, 3 days a week. My labs came back and they are fantastic. Everything is in range. I attribute that to being back on a strict diet. It does work.
Quick question for you concerning dialysis: I have heard that you do dialysis three days a week and you spend another three days a week recovering from the dialysis. Is that true? It sounded so bad that I decided I probably would never go on dialysis. Would love to know your experience. Thanks!
No, don't listen to things like that. Everyone is different. I get done, and I am ready to do the rest of my day. At first, my energy was down but I was terribly anemic. Now I am not. So no, I have light treatment and do it at a home. Those who do in-center and have a long treatment, it is very hard on the body. I have no fluid taken off, again, does not make me tired. Those who lose a lot of fluid have electrolyte imbalance and that will make you tired.
If you can do home hemo or even easier PD, do it. The alternative is sooooo permanent.
NO! Many people do find themselves drained of energy after dialysis and have to take a nap or limit activities (I would do one errand) and stay home rest of the day. Some people can push themselves to do a full days’ work. Some people do evening dialysis , fine the next day. For me—yes the entire day was a wash. In between days, you can feel decent! You learn to live with it. It’s life support plain and simple. Are you ready to die, or do you want more time to watch children or grandchildren grow up, enjoy nature’s beauty, listen to music, etc . Your quality of life is much poorer yes. However you are still alive and there is so much to still live for! Dialysis is scary at first but medical professionals will help you. Remember dialysis only replaces 10% of what your healthy kidneys do. You get typically 12 hours of filtration vs a normal person’s filtering their blood 24/7 or 168 hours. So yes- you are still not healthy, and many dialysis patients weak and some are sickly. I’m furious at all the people who told me how awful dialysis was, before I started it. Shame on them. Do not listen to doomsayers.
Funny, I found Asian food the eastiest to eat out on renal diet. Traditional Chinese food has lots of veggie dishes and ones with very small amounts of protein. Lots of fish and seafood options as well. Just have to learn what to ask for and then figure out what you like. If you find a good place, that caters more towards chinese people and less towards non, you can definitely find plenty on the menu. You can always ask for no/less salt and soy sauce and less oil. You can tell them to skip the salt/soy, add garlic, cilantro, ginger, scallion and chili, if you like spicy. Skip the fried stuff. You can add a bit of soy yourself if you need it. Steamed fish with ginger, cilantro, scallions...ask for the sauce on the side. Steamed rice and you are all set.
Obviously, it is a lot easier if you live in a big city with asian neighborhoods with lots of Asian restaurants to chose from.
Chinese restaurants often have non seasoned broth simmering to cook with. So for the post above, they might have used the broth to steam your veggies, hence, it was brown broth at the bottom. They use it to cook lots of dishes instead of using water. Adds flavor. Not saying it definitely was broth but might have been.
I found non asian restaurants super hard. All they ever wanted to give me was steamed, super bland food or salad! Like I was a rabbit! No creativity what so ever. Unless, it was a high end restaurant. Then, they had no problem what so ever when I requested no salt. Because true talented chefs know how to bring out the natural delicious taste of the ingredients without the need to inundate it with salt. And are very creative in using other spices to enhance the flavor. Unfortunately, most of us can't afford that on a regular basis. But it did give me ideas what I could try to make at home.
Gfr in the 40s is still good. You can stay at stage 3b for a long time or even forever if you take care of yourself. Exercise, eat right and reduce stress! The latter is super important!! Mental health is just as important as physical.
And splurge every once in a while. My nephrologist definitely said it is was ok and worth it, even when I was entering stage 5. A little every once in a while goes a long way.
thanks so much for that detailed reply. I totally agree with you about going to the authentic Chinese restaurants. I live in Sydney and there are plenty of Asian hubs. I do find though that despite saying no soy or salt that they dont realise that that also means salty broth or oyster sauce! Think I’ll find someone to write it in Chinese characters for me. My Cantonese is limited! I do love the fresh steamed fish with ginger and scallions with Chinese broccoli (gailan) with the oyster sauce on the side. I eat out in Japanese restaurants too. Plenty of tofu and tasty veggies with sashimi. Easy enough to make at home. I often make my own dumplings. It’s dinner time here. You can tell I’m hungry lol
This can also be made with fish fillets. Look in the notes section of the recipe. Love this recipe site. This recipe has three teaspoons of soya sauce but serves four so I still put it in
This is the recipe using fish fillets instead of whole fish. You can halve the oil and it’s still delicious. Has a video. Very easy to make. Serve with rice and steamed Chinese veggies
It is your body and your health that you are accountable for . I woukd definitely let them know what you can and can’t eat . I think you will find people are more understanding than you think . I go out to eat and I know I can can share a meal with a few people cause they know about my kidney disease . You are in the early stages so diet is important it can help keep you in early stages sometimes. I don’t think you have to be concern about people being worried I think if you tell them they will want to keep you in the lower stages if ckd just tell them with the kidney disease my diet and excercise will help me so if any of you want to share a meal look at the menu and tell them what you can eat. With Chinese Susan food be careful unless you tell them leave out sodium leave out diy leave out msg I just tell my friends and if I’m invited. With a large group I can’t go . They are understanding . Go and enjoy yourself .
I've told my family and very close friends I have ckd, but tell everyone else 'I'm mainly plant based'. That leaves it fairly open and flexible for me. I'm lucky in that our local Asian food takeaway are happy to cook food with less salt/additives if I ask them to.
I rarely ate red meat before diagnosis anyway. It’s the salt that is the big change. Also I used to be addicted to Diet Coke which I quit as soon as I was diagnosed. It still feels new to me so I’m guessing it’s taking a while to sink in with my friends too
I was diagnosed a few years ago...GFR 43, so CKD 3b. No predisposing factors. It is a shock. My gp just told me to 'eat healthy' but no other help or advice. I found this site. The information from others on here is so good. I drastically changed my diet and was very strict at first, I cut out everything I'd read was harmful for kidneys and went very low protein. I found it really hard going. But my GFR slowly improved, taking me into CKD 3a and has remained there since. Over time I've relaxed a little, I now have fish or chicken once or twice a week, a little bit of salt here and there. Overall, I do eat healthy, and I feel better for it and would never go back to the diet I had previously, even if I could. I make sure to get my five a day every day, but I try not to stress if occasionally I have a little of something I shouldn't. I think you have to find a balance and you will do so in time.
Fish or chicken only once or twice a week? I have fish a lot more often than that. Don’t have chicken much. I’ve been so exhausted and keep thinking it’s from low protein. You’ve done so well to improve from 3b to 3a. I didn’t think that was possible. Do you eat beans and pulses as your protein? Do you eat dairy?
Remember that everyone is different. I have no real idea why I have ckd, I suspect too many party drugs in my teens and twenty's, or from being sent into early menopause following a riding accident 25 yrs ago when a horse landed on top of me. Do you know the cause of your CKD? If so, you can tailor your diet. Yes, I eat lentils and quinoa, I also eat some goats cheese (which is apparently easier on the kidneys) a couple of times a week. I make soups too. There are guidelines so you can work out the amount of protein you can have based on your stage of ckd. I have a salad most days. I rarely have cows milk, but have almond milk instead. I've just found substitutes which I'm happy to eat. But I don't weigh or measure my food, I just have a rough idea. This is only what I've done from my own research having read up on CKD and what food is kidney friendly and advice from people on here.
I think that’s the problem. I haven’t researched enough. It seems that you have to be stricter the lower your stage. For example I still eat bananas and tomatoes as my potassium is fine. I can’t see why I can’t have cows milk??? I don’t eat foods with artificial ingredients or any processed foods at all. I’ve quit beer and Diet Coke. I do have cow’s yoghurt and cow cheese and milk. My calcium results are fine. Is there something that I should be looking for in them?
I don't know enough about blood results to answer that. People at lower stages tailor their diet according to their blood results, everyone is different. I don't have access to mine, so I just try to avoid foods which are harmful to kidneys, and to eat a healthy balanced diet with lowish animal protein. plant protein is easier on the kidneys. I don't expect the odd tomato will hurt, from what I can gather, rich foods like tinned tomatoes are more harmful. I eat things I probably shouldn't, but in small quantities. Apparently a Mediterranean diet is good for people with CKD. If you can access a kidney dietician they would probably be able to look at your blood results and advise you.
Probably laziness with a pinch of denial. I can't be bothered spending an hour or more on the phone trying to get through to the gp practice. I've asked for copies before and not got them. My Kidney function seems to be stable at present, I feel happy and healthy, so I suppose at the stage I'm at I'm not motivated enough to do so. Probably, if or when any of that changes I will.
My nephrologist thinks it was years of Nexium that gave me CKD. I’m on an H2 blocker. Famotidine. Similar to Pepcid that didn’t work for me. I also have a hiatus hernia that makes it worse
Since I'm hoping for a transplant I've told everyone. Everyone at work knows I'm on dialysis and work from home. I have a message on my car saying I'm looking for a kidney. I figure the more people I can educate what CKD and kidney failure means the better. Maybe someone will learn and it will help their health.
As for what I eat that's what I chose to eat based on my labs. Right now my phosphorus is very low despite no binders so I'm enjoying a Coke with dinner. My protein tends to be low so I eat protein and am on IV protein too. Finally got it up to the lower end of good.
”I stopped eating red meat six months ago.” Period. You are under no obligation to explain why. If they press on you can say “my doctor advised me not to eat —-. “ Many people have to watch salt in their diet.”Brown sauce “ = soy sauce = 902 mg sodium per tablespoon is more than half of what you should have in a day, or less really . If cooking at home buy “coconut aminos” which have 270 mg in one tablespoon and taste nearly identical, a liquid like soy sauce. If you have to place an order at a restaurant , “I’m on a medical diet, please substitute another vegetable instead of tomatoes / ask the cook not to add salt / place the sauce on the side / grill not fry / use less oil/ etc.”
I happened to lose a lot of weight on the kidney diet, my skin wrinkled up with the weight loss, so its pretty obvious to people who have known me a while. I just say "kidney diet". Most people don't question it further, though I say "vegan" or "plant-based" sometimes. Or "I don't eat sugar" at birthday parties etc, and eat some fruit if some is available. I can't help feeling that some people will stick it somewhere in their brains for when they decide to get healthier.
That decision to share your health condition is up to you. Do not feel obligated.I told everyone close immediately and friends as things progressed and now everyone I know knows I have CKD. My choice. Best of luck to you.
I educate morning, noon, and night. Wish someone had educated me and my hubby earlier in our lives. I'm "out there" happy to fill in people about anything we've experienced - diabetes, kidney issues, shingles, endometriosis, arthritis, schizophrenia and more. I've always loved the field of education - I feel proper messaging and awareness can change the world. (I usually start with a simple, factual statement but if the recipient returns with a question...I follow up.) But others may not feel that way and that's fine too. I respect people and their views. We are all different.
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newly diagnosed
What to eat and is the pains from my kidney desease? Thank u!🌈🙏🏻
What to do.
I’m another “newbie”
