I am stage 3 and like many of you, confused. I am 62 but more confused than ever about what to eat and not, etc. and learning dr’s really don’t say much to help. Didn’t even know I had this until stage 3. What? Nobody thought to tell me? And what do u eat? This is good and that is bad. Then wait, next book says exact opposite. Who do u believe and who wants to help us? Is there someone to go to like a nutritionalist? At least within 100 miles of Fayetteville, NC. Raleigh maybe? Help someone, to make sense of all this. God is my refuge and I believe His grace is sufficient but I believe we need to be our own advocate in this medical (less) society. God bless u all and thank u for any input.
What to eat and is the pains from my kidney... - Kidney Disease
What to eat and is the pains from my kidney desease? Thank u!🌈🙏🏻
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Cathy12156dsrjad
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43 Replies
•
orangecity41NKF Ambassador
I too was diagnosed at stage 3 CKD over 2 years ago, and my age is 76. Myself and wife attended a Kidney Class 101 given by Davita, which was a big help. There are locations near you according to the Davita Web site. davita.com. You just put in your zip code and can find a class nearest to you. Doctor prescribed renal diet and exercise has helped me. You have come to a good forum for information and support.
Hi and Welcome to this community,
There is going to be a lot of information for you to receive but all of them will help you learn and deal with CKD. You are not alone in finding out about having CKD at Stage 3. I'm also in that dubious club. I found out for sure at the end of June '17. You have to learn to be proactive and do much of the work yourself and find doctors who you can add to your care team. The doctors you choose should be open and honest with you and understand your concerns and help you through this process. If they don't find another who will. I have 7 doctors and 1 other professional (a Renal Dietitian) who are on my Care Team. They all understand that I need their professional help and guidance but the final decisions are up to me. They support this or they wouldn't be part of my team.
First, go to the website davita.com Look for information on a free 90-minute Kidney Smart class in your area. Also, on DaVita look for their recipe tag and you'll find a lot of kidney-friendly meals to switch to in order to slow down the progression of CKD. Also, on their site, you'll find a tab for their Store. You'll find many downloadable articles that can help you learn.
I was attending a Kidney Smart class and the Renal Nurse facilitating the class helped me secure an appointment with a different Nephrologist (my first one failed to inform me and was treating me for a related issue at the time). Either your PCP or Nephrologist can refer you to a Renal Dietitian. When you go bring all of your lab values with you. The RD will look at your previous test results and help you determine which foods you can select that will help you fight the CKD. Not all foods are good for us to eat. I track my labs on a spreadsheet and I bring that with me so each doctor can see any trends that I have in limiting my health issues. I'll speak to this issue again later.
You may or may not have other underlying health issues and it's important to make sure that all of your CT know about them. Every time you go to see a doctor bring an updated list of all of your prescribed and OTC medications. Again, I use a spreadsheet to track each one. I also use drugs.com to look up each medication, vitamin, or a supplement that I take to make sure that there is nothing harmful to me or my issues with CKD. Sometimes, the medicine is okay but only at a lower dosage. I've even encountered a situation where a medicine was counterproductive to CKD but helped me with another health issue. If that happens you have to determine what is your priority if there isn't another medicine available or a lower dosage. When a doctor wants to prescribe a new medicine I always ask why and what side effects I can expect. There may be other questions as well but I've found it really depends on the med and its purpose. I don't allow the doctors to call in original scripts to my pharmacy. Instead, I check the drug out at that website and if no additional questions pop up then I drop it off.
Back to your lab tests. Sometimes it can be hard to make sense of the numbers and you may have difficulty understanding what the tests are for. For that, I use labtestsonline.org This site offers clear information on what the test is for and also provides a range of "normal values". This can differ slightly from lab to lab.
Hope this gets you off to a good start. Come back often and you'll find a lot of great people here to share and learn from
Cathy12156dsrjad• in reply to
Thank u so very much. I learned more from u in this reply than I had yet learned throughout my journey. Again, thanks and God Bless!
Diddums• in reply to
I will try to take your advise as only just discovered I have CKD Stage 3 , I wasnt informed by my GP until I questioned him. Seems I have had it since 2007.......and suffered kidney removal in 2003 due to misdiagnosed renal TB/mengingitis.I have also been attending annual reviews with my nepherologist (who also remained quiet)Should I look for more answers? I am currently being treated for underactive thyroid (undiagnosed) and I suspect they are unsure as I still have many symptoms, There was talk of drug reaction and maybe Parkinson like tests (so I organised a private MRI scan(clear)...it was the referral letter from surgery which confirmed CKD) I used this info to question my GP (who didnt seem fazed at all............should I be looking elsewhere?) Currently have 3 copy letters referring me to 3 neuro appts (from Dr who operated on me in 2002)
• in reply toDiddums
I wish I could say I was surprised by the lack of response you are getting from your doctors. I'm not. I'm really not that familiar with the UK National Health program but short of demanding answers and attempting to find a better physician to help you deal with the various health issues you are dealing with I'm not sure what options you are left. Some things just demand attention because in addition to the issues they bring they also impact other functions of the body and cause you health issues there.
I'd suggest you do the research and put those issues in some sort of hierarchy of health concerns for you and find overlapping areas where a few things can help multiple issues. For example, diet and exercise may help you with multiple issues. Try to see a Renal Dietitian or at the very least a Nutritionist who can help you there.
Also, make sure the medicines you take for one health problem don't cause further damage to other issues you have. Sometimes it's not just the medicine but a lower dosage.
Diddums• in reply to
Thank you for advice and not expecting magic wand answers but great idea seeing a renal dietician ornutritionist (at very least) as my attempts on a gluten free diet (for thyroid problems) may be adversely affecting the CKD one. After all medicine is food too and food is medicine,Maybe medical Doctors need longer in training on Nutrition? Sadly (you have hit the nail squarely on the head)as we say here, I am very cautious of meds now
• in reply toDiddums
I use drugs.com to check all medicines prescribed and look for possible interactions with CKD and other health issues. I hope it can help you.
Hi there, welcome. You've gotten so much great input here. I do want to add that there have been studies done showing gluten free diets can help some types of kidney disease , but not all, but it shouldn't adversely affect your kidneys unless you are loading up on processed gluten free goods. The main issue with gluten free diets is avoiding packaged and processed gluten free goods as they generally are higher in sodium and other no nos in order to make them taste better. Also, avoid lots of carb replacements like gluten free breads cookies and frozen meals and focus more on whole fresh foods.
Best wishes for healing!
Me Kidney is right on. Diet and exercise if only partial. Whatever u do helps. I do the best I can. I went through not knowing for years but after finding out took it into my own hands. I can’t emphasize enough....Reaearch,Research!! And yes, just found out acid reflux meds had that effect so no meds r best but we have to take what we have to. Just write down questions, look up all meds, stay on this site, google it, webmd, NKF, Divita class, any and all u can. Much prayer in your journey. 🙏🏻🌈
• in reply to
"labtestsonline.org " Thank you!!!
Cathy12156dsrjad• in reply to
How often do we need to get blood tests? I have had mine checked 3or 4 times in 6 months and r always different. Each time one thing is off. I go to dietician and stay updated, etc. Try hard to learn all I can and exercise but for 2 weeks can’t due to dizziness from dehydration which I couldn’t believe. All I drink is green tea and water but was very sick for 2 days and all of a sudden this happened. Now weak, depressed, etc. Getting better then fell. Now can’t do much for a little while. I know this too shall pass and will get back to myself. Just hard at times. I want to help others and fulfill God’s purpose for my life and which is helping others. Sad I can’t right now. Daughter-in-law has MS and needs help with my 3 beautiful grandchildren whom I adore. Can’t be there for a while. That hurts. I need to help them. Thanks for listening to me complain. Sorry just bad day. Tomorrow will be better😢😃
I’m 36 & have been stage 3 for 2yrs. I was told I didn’t have to change anything. Just stay well hydrated. Stage 3 isn’t a big deal. We don’t even get referred to a nefrologist here in the UK until we get to egfr 30 
• in reply to
You are certainly free to follow all of the advice you get from your doctors. Just remember that it's your health, not the doctors. I do sympathize with those of you in healthcare systems that prevent you from accessing the best, most informed care available but that just means you really have to be proactive and learn what you can and make the changes you have the right to make to ensure a long and healthy life. This includes diet, exercise, control of medications and knowing and understanding your lab results.
• in reply to
Don’t get me wrong, I do take good care of myself. I eat well, I’m not over weight. Unfortunately I have to take meds for another condition that we think has damaged my kidneys. But in the UK they don’t think it’s a big deal until you get to stage 4.
Cathy12156dsrjad• in reply to
Wow. Thank u for answering. I hope u stay healthy and blessed! I do need to loose about 25 lbs so maybe the pains r from carrying the baggage around. Lol.
lowraind• in reply to
I am finding that in the US, they also do not think it is a big deal to be in stage 3. I am thinking that maybe we all need to look for doctors/nephrologists who have CKD. When it is personal to them, perhaps their tunes become different?
Cathy12156dsrjad• in reply to
Thank u so much and God Bless
Jenkea• in reply to
Hello, I’m stage 3 also, even got a 2nd opinion and she said no need to make diet changes just watch the salt and drink plenty of water, I do try to eat more berries and no processed food.
Hi cathy. Im just someone else sending encouragement.
This is a great place to find advice to find more information and members who really understand how confused and scared you are.
Welcome to our family.
Thank u very much! I appreciate any and all advise. Does anyone know of good “easy” snacks to eat if trying to loose weight and has CKD
• in reply toCathy12156dsrjad
Hi, if you go to the davita.com website and under the recipe column there is a section on snacks. I've used many of those for myself and just occasionally made some minor adjustments to change an ingredient or two. Depending on your labs, fruit is always a good snack and since many are seasonal you can change frequently and not get tired of any one item.
Cathy12156dsrjad• in reply to
Thank u and God Bless
KidneyCoachNKF Ambassador
At this stage you may want to consider lowering your protein. There is some controversy but most nephrologists recommend a low protein diet. You may also want to limit your dark colas as they are high in phosphorus and can be detrimental if consumed on a daily basis. High phosphorus foods like chili, chocolate, dairy, beans, organ meats etc you may also want to limit (NOT E-LIMINATE). I would personally stay away from DaVita. Drink plenty of water but don't overdo it as then it over does it for the kidneys. Moderation is good advice here. There is a great online education school called kidneyschool.org that is highly beneficial in learning about kidney failure etc. Also National Kidney Foundation (NKF) and American Association of Kidney Patients (AAKP) which have lots of information. Also HDC (Home Dialysis Central), HDU (Home Dialyzors United) Those alone should give you oodles to fill your coffers of information. I didn't see what your kidney disease is caused by. Remember that the keys are
1) Don't or stop smoking
2) Maintain or lose weight
3) Moderate exercise to control weight
4) Get proper medical help and/or medications quickly for any UTI or other infections.
5) Control blood pressure
6) Control blood sugars with medications as directed and keep A1C at or below 7.0
There are more but I need to get to work (I've been on dialysis nearly 16 years).
Any other questions ask away. Send me a personal message too. Mostly just know you're not alone. Blessings
Hello,
I just had to drop you a note after skimming the replies you gave. God is looking over you and I truly mean that after reading that you have been on dialysis for 16 years......I am at stage 4, GFR at 18, my last blood test and my potassium are off the wall. My doctor is talking about dialysis or transplant and it scares the hell out of me. Transplant seems out of the question for me do to other health problems.
I am on Veltassa to lower my potassium but I am getting major abdominal problems, constapation, and pain in the left side of my back where my ONE and only kidney is located. Had rt kidney removed in 95 do to cancer. I stopped the Veltassa now for the 3rd day to see if the pain is from this drug and if it is I don't know what else he can give me to bring down the potassium. If it isn't the veltassa he wants a abdominal x-ray to check for another problem that might be causing the pain.
I have lost 13 lbs. in the last 6 weeks on Weight Watchers and now have been exercising almost every day. I feel better but this potassium situation is scaring me.
If you have any suggestions or words of encouragement regarding dialysis, please send them my way before I lose my mind with anticipation. Whatever you are doing I want to be just like you if and when I have to go on dialysis.
My prayers are with you and all those fighting this disease for many more years to come. PA
Just remember that worrying about something will never change it. The anticipation of something to come is always worse than the actual event. I was terrified of the needles and the process of dialysis but in the end it was nothing compared to what I'd imagined it would be. Hang in there. Blessings
I was wondering if I was the only person around that wasn't scared. I figure it is what it is. I know what the treatment options are and have done research for when the time comes. I have other issues that have no treatment (retinal dystrophy where I'm slowly going blind. and has no cure or treatment); hearing loss which has me wearing hearing aids; Graves Disease which causes hyperthyroidism. I'm only 58 so a kidney problem which is treatable seems nice.
Thanks a lot. Why stay away from Davita? They offer a class. Is it not good? And what about cravings for carbs and sweets. I keep praying for help on that one but will power isn’t enough. Even knowing it could hurt me doesn’t stop them. I don’t eat nearly as much but not enough to loose weight. Need to loose 25 more lbs. and have come to a complete stop. Any advise will be appreciated thanks
• in reply toCathy12156dsrjad
There are some who might have a personal issue with DaVita. For me, it was a no-brainer because I don't do social media. I've had friends look at FB for recipe advice for me and davita.com makes it really easy to see each recipe. All nutrition information is provided. The recipes are broken down by season, ones for chicken, beef, pork or seafood, soups, salads, snacks, etc.
Don't expect to lose those cravings right away. It takes time to get used to anything new. I've given up eating out, anything sweetened with sugar, salt, and other items. I make it work for me because the alternative is more unpleasant. I'm 66 years old and don't believe a transplant is in my future and if it was it's still something I can put off by being proactive. Same thing for dialysis.
The professional facilitators who teach the Kidney Smart class offer information and how to find more. They don't preach or force you to do anything. They are there to educate and inform you. Remember, as with your doctors, the final decision is up to you. You are the one to make the call based on the information you receive and what you determine is in your own best interest.
Let me clarify that DaVita has some great resources that benefit many. I've used a recipe or two myself. That being said, they do have what I would consider some poorly thought out protocols for fluid removal for in-center patients....some that could have devastating results. And as a side note, DaVita is not the only "informational" resource out there, so while you're looking, check out other sites as well for a full rounded out knowledge base. Blessings
Just found out I have to take thyroid meds and Victoza for being pre-diabetic and she told me it would help with weight loss. Need to loose about 25 lbs. it makes me so nauseated though. The Synthyroid does too. Suppose to loose weight with hypothyroidism but on such a low dose and not working for me. Now just so nauseated all day. But doing great otherwise praise the Lord! Could be worse and I certainly keeping you all in my prayers. Trying to get the word out about ALL being checked for kidney diaease or at least get info. about it. I have IBS and scar tissue in tummy so that is probably what is causing nausea. Didn’t want to scare anyone. My GFR is 37. Having low potassium issues too. I sure pray for those that r having lots of problems. It must be hard for u. Again, u all will be in my prayers🙏🏻🌈
Hi kidney coach
Second time I am posting. Thank you for such good information. Good to know that you have survived on dialysis for 16 years.
I am 75 retired and on CKD for last 10 yrs. when I asked my Nephro 5 years ago as to how much time I have to go on dialysis, he said never. Anyway I did not take it very seriously though my GFR was depleting slowly and my creatinine was increasing slowly. Till recently my GFR reduced to 18 and creatinine to 3.1. Now my Nephro says that be prepared for dialysis
I am scared and confused. I am not diabetic, BMI of 23.5, phosphorus, potassium is under limits
Plant based protein only, no salt gluten free diet.
I would highly appreciate if you could tell me what you did to survive for 16 yrs on dialysis. What should i be careful about
My second Nephro ( my young nephew) is suggesting Retuxinab
Protocol, this protocol is popular in Europe. FDA Approved in USA
Usually applied on MS Patient
I was contemplating on Stem Cell
Treatment and as I said with overload of information I am confused. Your input will be highly appreciated.
God bless you and all the members
Thank you
During the past 22 years my husband has had 2 kidney transplants - the latest donor in 2011 was myself (his wife). During these 20 years he has often communicated with the dietician who is connected with the nephrology/transplant department. Our local hospital does not have such a person; however 2 larger city hospitals did. A hospital that does kidney transplants would have such a person with whom you could address your nutrition questions. Best of luck to you !!!
Thank u very much for taking the time to answer. God Bleaa!
Bet117NKF Ambassador
Hi Cathy,
Welcome! Understandably, you are feeling scared, shocked and questioning what to do. These are all normal emotions and allow yourself to feel them.
Most importantly, know that you are not alone! You have already received not only wonderful support but advice as well.
Unfortunately, kidney disorders can't be cured, but with diet, exercise and taking medications diligently, they can be controlled and progression slowed.
A diet rich with fresh fruits and vegetables leads the list. Lots of cabbage, cauliflower, zucchini, broccoli, onions, lettuce, red pepper and eggplant. I love fresh strawberries and blue berries, as well as apples.
Watch your sodium carefully; 1500-2000mg a day. I read labels carefully; no sodium,.low sodium and salad dressings which have 125 mg tops and portion control all of them.
Red meat, canned soups,processed foods as frozen entrees and veggies with sauces, cold cuts, bacon and meats such as them should be avoided.
Eggs are fine as well as white bread an d light wheat is good as they are lower in phosphorus. Chicken and fish are good. I switched from milk to carnation Fat Free original liquid creamer in a smaller amount of morning iced coffee and it has made a world of difference.
I also went to the davida smart class and not only found the people lovely, the information great and learned more new things. If you google them they have good recipes which break down how much protein, carbs, potassium and phosphorus is in each recipe. Nephcure is also good and will give you a list of better choices in foods. I also saw a dietician to obtain suggestions.
Keep track of your lab results and don't be afraid to ask questions both of your GP and nephrologist; it's their job and what they are getting paid for. Make sure that everything is explained to you in simple language to keep you informed and your mind at ease
I always bring a hand size spiral notebook to appointments and list questions, take notes and review before my next appointment.
Have faith and know that you will get through this.
Stay strong and let your family and friends support you in this journey.
Know that we are always on the other side of the computer to talk.
Please write again and let me know how you are doing. I care!
Sending you good thoughts and positives!
Bet
Just diagnosed with Hypothyroidism. . I am 69 yrs young, meds for Anxiety & Depression. (In Family) QUESTION- For the FIRST TIME EVER— I have horrible Blood Panel & occasionally loose TOTAL control of Urine ! Never a drop otherwise ! I did have blood (just 1.0 ) in my urine. CAN thyroid problems affect Kidney ? “Which comes first The Chicken or the Egg ?”
• in reply toDougs
Yes, to your first question in both ways. See a Urologist for the urine issue. You need to put together a Care Team of all your doctors who are treating you. Let each one know all of your health issues and your medications, including over the counter ones and supplements. All of them should be aware that the final decision making is yours and that you are asking them for their expert opinion.
Hi! I understand. They went back and forth about me having Stage 3. Then THEY said there is no kidney disease at all. Teo months later? Stage 4!!! I no longer trust doctors even though I have to go to them. As doctors, I am shocked at their lack of concern for people fighting for their lives!!! My neighbor's daughter has agressive form of cancer and the nurses in 2 hospitals were verbally abusive to her!!! So, I pray!!! Also, I make a fresh lemon detox about twice a week. Two fresh lemons, Stevia to taste, cold spring water and ice! I can't advise anyone. As for me simply cutting back a bit on salt, along w/ this detox AND having a few prescriptions stopped, I am now at Stage 3b, after 2 months. Metformin and ALL NSAIDS are poison! For years my specialists prescribed STRONG NSAIDS. My eGFR went from 29% to 42.8 % in two months.
My Dr wasn’t too much help, CKD stage 3,was never told about it. Got a 2nd opinion and she told me with a GFR of 56 my kidneys should be good for 20 more yrs. no need to change diet, my cousin diagnosed with the same thing in another country was also told no need to make any diet changes, just watch the salt. I still try to eat lots of berries and no processed food.
Whoops. Spoke to soon. We had discussed all this. But still i. My prayers!
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