Food limits in CKD stage3

[Bethlamb]

My husband’s nephrologist does not recommend a special diet limiting potassium. Should I be concerned? All the books seem to say to limit potassium.

[Hidden]

Your nephrologist needs to explain his reasoning. You don't want to eliminate potassium, or phosphorus, protein, sodium, and calcium. You have to eat and watch your daily intake of those minerals. As kidney function declines your kidneys will have more and more difficulty in processing as they should. If you don't get a satisfactory response please seek another nephrologist.

[KidneyCoach NKF Ambassador in reply to Hidden]

Bethlamb Not everyone with CKD have potassium limits. I never had them (any dietary limits except proten) until I reached stage 5. This is why kidney diets are so very *individualized*. If the nephrologist is not recommending a diet limiting potassium at this time then why not accept it as fact? Are you getting regular blood, urine tests? Have you been referred to or seen a renal dietitian?

[Hidden in reply to KidneyCoach]

Dear Kidney Coach, Bethlamb didn't provide any stage status so I provided a reason for her to ask the physician to explain his reasoning. Accepting a doctor's word without an explanation is not wise. Furthermore, any physician who won't take the time to answer and/or explain his instructions isn't doing a service to their patient.

Of course, that's just my opinion and I could be wrong.

[KidneyCoach NKF Ambassador in reply to Hidden]

In her post title she says stage 3. She doesn't say anything about asking questions or the physician not explaining the rationale. Only that "all the books" seem to say limit potassium. I agree with you given the very limited information provided. Did they ask Dr for explanation, rationale for his recommendations? I guess we need more information about conversation engagement with the nephrologist. If questions were not asked or explanations were not given then my response is go back and ask for clarification.

Blessings

[Charlene_Coxhead in reply to Hidden]

MrKidney you need to reread the post her title states her husband is in Stage 3, I think you must have missed that from your response to KidneyCoach.

I'm not sure if its the way I'm reading your post and previous post but you seem very defensive if people dont always agree with your comments, are you ok ? We are all here to support each other and if you are finding things hard at the moment please reach out. This isn't meant to be patronising or anything like that as I know we have had issues in the past its genuine concern.

Take care

Charlene

[Hidden in reply to Charlene_Coxhead]

I saw the title. If you know the stages, stage 3 has the widest range and was divided into two sections 3A and 3B. If your GFR is in the 50's and potassium is not an issue then you might not have a problem, yet. However, if your GFR is 32, stage 3b, potassium may very well be an issue. A really good physician should explain that to a patient and provide them with more guidelines. That is the reason for my comment. And by the way, I'm fine.

[Charlene_Coxhead in reply to Hidden]

See your so defensive and aggressive you dont need to be like this towards me. I was nothing but nice to you in my comments and offering support. Im glad you are ok.

You know full well i am very aware of the stages of renal failure. I've lived with it for 19 years and delayed the disease beating the odds so dont patronize me.

[Hidden in reply to Charlene_Coxhead]

My answer was directed to your response to my previous post. However, you are not the only one to read it. There may be others without your vast experience who may benefit from the information.

[KidneyCoach NKF Ambassador in reply to Hidden]

You're assuming the doctor never gave explanation. We don't know as we don't have that information. I try to refrain from responding to your posts due to passive aggressive defensiveness. I just figured you had an issue with me. You do have lots of great tips and information to offer. Doesn't mean you are the only one to have accurate information or all your ideas are all accurate. Wishing you all the best. Blessings

[Hidden in reply to KidneyCoach]

Have a nice day, Coach

[KidneyCoach NKF Ambassador in reply to Hidden]

What stage are you in now? Can you share with us how long ago you were diagnosed with CKD and the cause? Do you feel adhering to an individualized renal diet has slowed your progression of CKD? Do you have other contributing factors I.e. diabetes, high bp, minority status (minorities have a much higher prevalence for high bp and/or diabetes)? You have a great week. Blessings

[Hidden in reply to KidneyCoach]

The information is out there in this community. If you have some reason for asking these questions, please go back and look at my previous posts. Hope that helps.

[KidneyCoach NKF Ambassador in reply to Hidden]

I have done a quick search but couldn't find it which is why I asked. All I could find is that you joined this forum about a month after I did. I know the information is personal so it's cool if you don't want to share. Blessings

[Charlene_Coxhead in reply to Hidden]

MrKidney you need to reread the post her title states her husband is in Stage 3, I think you must have missed that from your response to KidneyCoach.

I'm not sure if its the way I'm reading your post and previous post but you seem very defensive if people dont always agree with your comments, are you ok ? We are all here to support each other and if you are finding things hard at the moment please reach out. This isn't meant to be patronising or anything like that as I know we have had issues in the past its genuine concern.

Take care

Charlene

[Charlene_Coxhead]

Hi Beth

Not everyone is the same and the books talk about general terms. Lots of people with CKD have high potassium, however this is not always the case. I know this as mine is actually low. If you limit food that do not require to be limited you could do more harm then good. Rather than worrying about limiting foods what I would recommend it the following.

Reduce sodium/salt from your diet, so dont add it when cooking. Stop drinking dark sodas like coke and pepsi. Limit takeaways, these really should only be a trest as high in salt and mono sodium glutamate which is hard for CKD patients to process. Avoid ready meals and jarred sauces as again high in sodium. Avoid those energy drinks, and reduce caffeine intake too. If you can change to decaf coffee and tea. Unfortunately this does mean that you have to go back to basics and batch cooking comes in handy. You can still have treats and dont have to live like a nun or never have treats it's all about being sensible, and eating a well balanced diet. Drink plenty of water.

It's important to maintain a good healthy weight, so if underweight try and gain and if overweight lose. Give up smoking if he smokes and get active. Even if that's a stroll around the block is all that can be achieved.

Thus us going to sound strange but your husbands been lucky to be diagnosed in stage 3 and being referred to a neurologist as lost dont get a neurologist until stage 4 and usually when its detected as it's a disease that doesnt get detected early. I was diagnosed in 2001 at 21 and already in stage 4 as was born with the disease but did know it. I was told i would be lucky to get to 2009 before dialysis was required. I followed the above and medication prescribe and got 10 years more and didnt start dialysis till jan 28th 2019. It was hard at times but so worth it.

You have the right to insist on a renal dietican. Well you do in the UK, but I'm not sure where you are based.

Good luck with everything

Charlene

[htpi1543 in reply to Charlene_Coxhead]

Hello Charlene

Thank you for a very very very informative post. I am in similar situation.

I am74, got CKD about 10 yrs ago. With GFR 55, creatinine 1.6.

Now GFR is 18, creatinine 3.3,

Everything was going good except Dec of 2018, we went on long vacation ( 30 days) and I got little careless with my diet.

When we came back to USA, I got my blood tested. GFR 17, creatinine 3.1. Nephro was upset and asked me to prepare for dialysis. My world was coming to an end. Anxiety and depression made my condition worse

Then with my wife I got on very strict plant based diet.

Gluten free( as much as possible).

No added sodium, no added potassium, no added phosphorus, calcium etc. ( these are in normal range)..BUN increased from 27 to 34( some concern)

With strict diet, my GFR increased to 23, creatinine fell to 2.7.

Then after 30 days my blood report showed GFR dropped again to 18 and creatinine up to 3.3, ( concern)

So now I am trying some AYURVEDIC ( holistic meds) which are herbal meds.

I forgot to mention that in one year i lost 20 lbs. and was feeling very weak. With Ayurvedic meds, my fatigue has reduced considerably

My Ayurvedic doctor ( MD) digested blood test after 30 days from now

I am looking for 5 more yrs w/o dialysis.

Anyone who has experience with Ayurvedic meds, please share their frank experience. Will highly appreciate

Charlene, you have prevented dialysis by 9 more years( I know you are still young. For me to it will be impossible to avoid Dialysis for 9 more yrs. therefore I am seriously considering STEM CELL

Treatment soon( expensive but worth trying , 10 k)

Will highly appreciate if some one can share his/ her experience with Stem Cell.

By the way my BMI is 22.8, A1C is 5.6

Allopathy meds taken are BP meds

Prostrate meds.

Knee pain ( scale 4)

Kindly reply

Best regards

Sam

[Charlene_Coxhead in reply to htpi1543]

Hi Sam

It sounds like you've been on quite a journey and congratulations on the weight loss achievement.

Its only natural to slip up now and again and hard to be so restrictive when on holiday and get that most of us do from time to time. The important thing is you got back on it and focused.

Your doing really well. Any extra time you get dialysis free is a bonus that's how I looked at it. I was lucky you could say I had age on my side. Yes I was unlucky to have this disease at a young age but we cant change the cards we are dealt I just always tried to remain focused on staying as well as I could and positive about the future. I've always said that this disease may have affected my body but it wasnt going to take my mind but that's not always been the easiest.

I've recently just helped out at the World Transplant games in Newcastle which was amazing and managed to do 10 days of volunteering and doing dialysis at the same time. I have helped at the british transplant games for 3 years but the worlds was just so special see it's the first time it's been here in 24years . Staying focused on helping others really does help me.

Keep doing what your doing Sam your doing an amazing job.

Charlene x

[Jayhawker]

I didn't have any dietary restrictions other than low sodium and low fat as well as eating lots of whole vegetables and fruit when I was initially diagnosed. It was a heart healthy diet. So I also ate virtually no red meat; just boneless skinless chicken breasts and fish. My nephrologist based that recommendation on my lab results. Eventually I had to watch potassium intake as I began to have difficulty with elevated potassium levels. Even today, as a Stage V person who isn't yet on dialysis, I have only some minor restrictions with potassium. (My new nephrologist made a change in my treatment plan that has allowed me to eat more potassium on a daily basis.) But I have no phosphorous restrictions. I still adhere to a heart health diet.

It would likely help for you to visit with your husband's nephrologist so you both better understand the dietary recommendations. It would be good to clarify whether there is anything you can do to help his kidneys now . . .

Jayhawker

[CNeb]

I would imagine and hope that doctor saw current labs and that was the reasoning. There may be other factors not discussed in the post as to why the nephrologist didn’t recommend lowering potassium. I can’t lower my potassium intake since I also have Hirschsprung’s Disease. I have no large intestine, therefore I don’t absorb potassium like others. I actually had to take potassium supplements to keep mine in a normal range. Everyone is different, but I’d ask to see lab results. If you’re in the states check to see if your doctor/hospital supports/uses the MyChart app. You can view lab results and this can help explain why no reduction in potassium was mentioned.

[Bethlamb]

Thank you for all the useful information.

[orangecity41 NKF Ambassador]

Everyone's diet requirements might differ on the renal diet. Initially was diagnosed as 3b, however did not have high potassium. Later tests showed high potassium an when got out of range was potassium restricted. Since have added potassium restriction the potassium level has improved. Now phosphorus, sodium and potassium restricted.

[Bet117 NKF Ambassador in reply to orangecity41]

Well said Orange City. The key to any restrictions are dependent on labs, which will change.

Additionally, I agree that we are all different and have different dietary needs be it more or less of something.

We may not have to restrict, but we are informed as to what we need to watch as far as our diets.

Thank you so much for the reassuring post.

[KidneyCloud]

Potassium is in most healthy food such as topical fruit (full of vitamin A, C and anti-oxidant) and vegetables. Unless your husband at the end stage and has high Potassium ( normal range 3.6 to 5.2 mmol/L), then Potassium limitation may not be beneficial.

Low Potassium could cause dizziness and off-set the balance of homeostasis.

Limiting sodium is beneficial and should be at every stage.

[Jenjudyst]

My nephrologist says to limit potassium, phosphorous and sodium.

Sodium is very hard on the kidneys and BP which will in turn hurt the kidneys more.