Stage 3 CKD: I have stage 3 CKD and am... - Early CKD Support

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Stage 3 CKD

Impregilo
Impregilo
23 Replies

I have stage 3 CKD and am diabetic. My GP only mentions HbA1AC level after 6 monthly blood results and nothing about eGFR which hovers around 45.I have talked about high level of Urea and Creatinine but GP’s reply was that’s always been high so nothing to worry about.

It does appear that GP’s are not concerned about stage 3 and do not refer to Nephrologist at this stage as long as it remains stable.

The only advice I get to watch my K level by following low potassium diet.

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Cruze44

If your blood levels have indeed always been high then you GP may be right. Nothing to worry about. The eGFR is just an estimate. And even if it is correct many people live perfectly normal lives without any kidney issues with a eGFR of 45. It's a falling eGFR that is concerning. Or other symptoms such as uncontrolled blood pressure or glucose. But if your feeling good, I wouldn't worry too much.

As far as seeing a kidney doc, he's probably right about not needing one. You got a ways to go before your in the "red' zone.

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Sally10255
Sally10255
in reply to Cruze44

I totally agree!!!

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lowraind

I guess some GPs are not concerned about a stage 3. Mine was, and I am very grateful, because I was able to educate myself regarding ckd, and have made many changes in my diet, which helped me bring GFR from 36.6 to 54.0. Am seeing the nephrologist on Monday to get latest results. I would much rather make changes now and forestall worsening than to just wait until it gets worse.

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ShellyC23
ShellyC23
in reply to lowraind

Please could you tell me how you changed your diet to increase GFR? Mine is hovering around 30 so I’d love to raise it

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lowraind
lowraind
in reply to ShellyC23

I will reply with a copy of my post to jo13bi:

There is a lot of information on the internet. Much of it is bogus. However, many doctors, including nephrologists also say that you can't get it back up. You will learn, as we all have had to do, to filter through the bad info to what will help you. Also, the direction to eat healthily does not give you the information you need. There are many diets out there that are "healthy", but not necessarily healthy for people with ckd. Resources that I have found helpful are Davita.com (though I am careful to sift through their recipes because some are heavier than I like in sodium, potassium and phosphorous), National Kidney Foundation, Renal Support Network, Mayo Clinic (Chronic Kidney Disease, WebMD (Understanding Kidney Disease), etc. I personally have found Mathea Ford's books, particularly, Living with Chronic Kidney Disease--Pre-Dialysis and Create Your Own Kidney Diet Plan very helpful. Also, if you scroll through the related posts in the top right hand corner of this site, you will find much help. Mr. Kidney and others have also spent much time studying and gather information.

Recipe Information:

There are many resources for kidney friendly recipes. Here are a few helpful links:

•DaVita – Recipes: This website has over 1,000 renal friendly recipes and a free Diet Helperservice!

•The American Association of Kidney Patients – Kidney Friendly Recipes: A great resource with many recipes for all meals!

•The Kidney Foundation of Canada – Kidney Kitchen Cookbook: A community cookbook that includes options for beverages, breakfast, lunch, and dinner! There is also a meal plan option.

•The National Kidney Foundation – My Food Coach: Allows you to specify your diet between full renal diet, low sodium, and diabetic.

•The American Heart Association – Nutrition Center: Provides a lot of tips on dining out, cooking, and healthy shopping.

•Heart Healthy Online – Low Sodium Recipes: If you’ve been advised to follow a low-sodium diet, these delicious recipes are perfect for you – they all have 140 mg or less of sodium per serving.

•Mega Heart – Low Sodium Recipes: This site has a lot of low sodium recipes and there is even a kid’s section!

I have spent 8 months researching, sifting through, studying ckd. If you have any specific questions or concerns, feel free to post on this site. Many people with much experience are very willing and able to help out.

Good luck and keep in touch. Support is very important so that you know that you are not alone.

Hope this helps!

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ShellyC23
ShellyC23
in reply to lowraind

Thank you 😀

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Concernedforhubby

Hi, lowraind. Thank you for your recipe sites. My husband has just been diagnosed with Stage 3B so we're both learning about it. He is 66 with a GFR of 35.6 and creatinine of 1.9. He exercises and is muscular and has no other problems, and his potassium level is within range.

As others have said, advice is all over the board. I am specifically curious about how much you restricted your potassium. The National Kidney Association recommends the DASH diet for folks who aren't on dialysis, and that seems much like a good place for someone with no symptoms to start, but it includes such things as nuts and whole grains, which many of the CKD websites caution against.

Thanks for any wisdom you can throw my way.

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lowraind

I try to eat less than 2000 mg of potassium per day. It is what is usually recommended for people who are in stages 4 & 5, from what I have read, so I figure if I do it now, hopefully I will not get to stages 4 & 5.

Yes, the DASH diet is a good place to start, but then you need to know which fruits and vegetables are not good for us, because of high potassium; how much dairy you can have (I avoid most dairy); how much meat and what kind of meat to eat and what to avoid; and I would be concerned about beans as well as nuts.

The Mediterranean Diet is another place to start, as long as you become aware of what to avoid.

Hope this helps!

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Impregilo
Impregilo
in reply to lowraind

You’re absolutely spot on. It’s very fine balance because every vegetable has potassium and possibly phosphates.

In fact plant based diet has no b12 and although I make up with eggs and dairy with cereals but still I ended up B12 deficient.

Dash diet has helped me with my diabetes control.

But for eGFR control hydration is essential between 2-3L/day fluids.When you have multiple medical conditions, like me medication on its own is not the only solution .

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Concernedforhubby

Thank you for your reply. Today I have been searching for information on dietary guidelines, and I like the fact that you gave a specific number for how much potassium is your max for each day. I have found calculators for protein intake, but have not found other hard values. Do you have a site you can recommend with specific dietary guidelines?

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lowraind

In Mathea Ford's book, Create Your Own Kidney Diet Plan, as well as the website she provides in the book, you can get those guidelines. Actually, there is much information online, but often, it is divided, so you have to look up potassium and phosphorous contents separately. The dietitian I saw also gave me lists of foods, but nothing in one place (besides, she was a diabetes dietitian, not a renal dietitian.

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Concernedforhubby

lowraind, you have been so helpful and I really appreciate it. Today we learned that my husband's potassium and phosphorous levels are totally within average range, which I think gives him a little breathing room. By that I mean he should avoid foods high in those minerals but doesn't have to eliminate them completely.

Do you use one of the food trackers to know how much protein, sodium, etc. you eat in an a day? And if so, which one? I would imagine you've tried several of them if you've been dealing with this for 9 months.

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Sally10255

Hi, if you are concerned find a kidney doctor. Fortunstely my family dictor picked up on my gfr changing, ultrasound, renal scan, large dtone detected, which may have ruined my kidney. Diabetes and high blood pressure are 2 main things that are very hard on kidneys. I would look fir kidney doctor.

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WhollyAligned

Hello - blood sugar control and kidney health are certainly related just like all things in the body are. I am surprised to hear there is such a laissez faire approach currently around a GFR of less than 50 from the GP. Are you happy to share your current HBA1C and what the original cause of the diabetes was? It is worthwhile also to ask if you can get a protein to creatinine urine test done as this tells much more about kidney health. Creatinine and age are part of the GFR computations and whilst useful are also fairly rudimentary. The bigger picture is always helpful. Certainly you will know yourself the importance of managing the diabetes in order to protect your kidneys, nerves and cardiovascular health. Advising solely to follow a low potassium without a wider view is also a bit limited. For example I run a very healthy potassium on peritoneal dialysis and as a nutritionist I have the requisite knowledge to apply to my own wellbeing. I ensure to include good amounts of vegetables and some fruit. It is very important for the kidneys to have a healthy potassium to sodium ratio. Having had kidney issues since a young child it seems not much has moved on in the field of renal medicine. I wish to be part of changing that.

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Brillgirl

I really know very little about kidney problems. I have had diabetes since I (most likely) had gestational diabetes about 50+ years ago (I am 73). Since then I have had problems with sugars, health in general and excess weight. However, I was not diagnosed with diabetes until about 10 years ago (symptoms I had were ignored for quite a few years before that) and rapidly was put onto insulin. I have had high blood pressure diagnosed for about 30 years and have been on medication for that to an increasing extent, ever since as well as on Simvastatin for cholesterol control; also Esomeprazole to try to improve digestive problems (no wonder really with all the pills!) and treatment for bowel cancer and, apparently, polyps removed from my stomach which I didn't know about until last month. I have had little helpful advice from health care professionals so when I was told I now have liver cirrhosis, I thought I would try to improve things with a low carbohydrate diet - it is only marginally helpful but now I seem to have a problem with my kidneys as I was told that my creatinine level was 32 (now, a month later, 30) and that it had been 45 in December and 40 in January, whereas, I gather, it should be around 60 or 70. I had thought that the only thing that was still working was my kidneys, so this is disappointing.

I also have to take Levothyroxine and diuretic medication as well as co-codamol to ease arthritis. Maybe one of these has had an effect on my kidneys. The problem is, I don't understand the figures I see quoted by other people on this site, so I don't know how bad the problem is. My doctor might be a little concerned because he wants to see me once a month meantime, but he doesn't really explain what readings he is getting.

I wonder if I have made matters worse by going onto a low carbohydrate, high protein, high fat diet, which contains quite a lot of animal proteins as well as vegetables and a little fruit. I don't mind no actual sugar (apart from what is in the fruit and veg) but I do struggle with the low carbs and high protein, so, if it is making matters worse for my kidneys, maybe I should stop this diet. The local health professionals think the low carb diet is rubbish anyway, so there's no point asking them.

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WhollyAligned

Hi Brillgirl - thanks for reaching out. I know these things can be so confusing and it's easy to get overwhelmed and get a bit lost. Part of the work I am doing is working more with medics on helping them with their self care as I believe its a huge part of the puzzle so they are able to connect themselves with the importance of a holistic approach. You must bear in mind that any doctor will only know very limited information about you as a whole person. You need to stick to what matters to you and what feels right for you. I would look into easing off/eliminating the NSAIDS (the painkillers) as these are damaging to the kidneys and with your GFR at 30, these are absolutely contraindicated for you now. Any nephrologist will tell you that and if they haven't already you need to flag that to them. Look into turmeric for calming systemic inflammation. Great on the sugar - well done. Low carb does to suit everyone - a consideration is that it is likely your gut biome needs some serious nurturing and when the diet is high fat, this can actually be more of a struggle to the gut. You need a super healthy gut to metabolise fats - so it's never black and white. If you feel you are having too much animal protein, trust that. I do not advocate any particular type of diet because balance and tuning in is important. The best advice is to eat real food, get good sleep and find a spiritual practise that truly helps you. For me that's yoga and meditation and time in nature. What is that for you? Allow yourself to explore. What is helpful is to sit down and have some quiet relefeciton on all the questions you need answered and take them to the doctor for next time and ask all of them and keep asking until you are understood and then you understand. Do your won quality research and weave that in its your own intuition. So for example really understand your meds and where the risks versus the benefits make sense for you. Statins can create muscle wastage so be aware of that. They deplete a key nutrient, COQ10 so if you are on a statin this nutrient needs to be supplemented - very important for the heart. Also start 20 minutes of coherent breath a day - breathe in through the nose for 6 seconds and breathe out the most for 6 seconds. Basically this balances the breath and is a transformational practise for your health. Do it every day and if 6 seconds is too much just build up to that. You can do it lying down or sitting and really breathe into your belly. Look into the work too of nephrologist Dr Jason Fung around intermittent fasting. There is so much you can do to help yourself.

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WhollyAligned

should say - low carb does NOT suit everyone

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WhollyAligned

Sorry I typed this quickly so a few typos! Breathe in and out the one for the coherent breath - gently and smoothly. Anything confusing let me know!

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Brillgirl

It's odd - low carb doesn't do, for me, what a lot of people on the Diabetes UK website claim, but if I do up the carbs to anything like the level recommended by our local dietician my readings shoot up to a place I don't want them to be, so it must work, after a fashion. Also if I try for a couple of meals to have only vegetables and no obvious carbs, I end up with a hypo. I need to do more work on that, but no-one here wants me to do it so there is no medical support, and that I do think I need. It is confusing, and then there was the kidney thing after all this so I just wondered if this diet could have any effect on that. However, it seems more likely that some of my other meds might be more responsible than the diet.

I have to see my doctor in the next couple of weeks - if I can get an appointment - so will ask him about the statins as well as all the other blood pressure reducing pills. Actually, I ended up in hospital a few weeks ago, having collapsed, and one of the things they picked up on was that my blood pressure was very low (for a 73 year-old, unfit woman). So my doctor reduced, and then stopped one of the pills - Losartan. The other main thing was dehydration - my own fault (I hadn't realised just how little I had been drinking over the last while). Maybe this has caused some of the kidney problem.

As far as the high fat is concerned, I have my doubts about my ability to handle that because I have no gall bladder. This leaves me with very lean meat, vegetables and fish. I should eat oily fish, I gather, and I do, but I'm not sure that it is right for me.

Actually, my sister-in-law recommended COQ10 some months ago (she insists that my brother takes it - he is on Warfarin and a statin) but I couldn't find it here on the islands, so I forgot about that. I will try again and see if one of the pharmacies can get it for me. I will also try the turmeric - I can get that in small quantities - and am working very hard NOT to take pain killers. I have only ever taken a fraction of the specified dose, just to take the edge off the pain, but sometimes it gets too much and then I take half of a single dose - probably about once a week - the rest of the time I can cope with the pain.

Spiritually, I try to meditate - without much success - too much going on in my mind and I lose focus. I keep trying. I will also try the breathing technique that you suggest.

Many thanks for all your advice and for taking the time to answer my post.

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WhollyAligned

You are so welcome. We are often way too hard on ourselves and what I see is that you really are doing your best to explore and tune in and experiment. well done! That's wonderful! It is a constant exploration for us all. Yes make sure you stay well hydrated with room temperature water if possible and chilled water is an effort for the body to warm up. Just bit by bit. And it's normal to find meditation challenging at first. Don't give up and find a technique that suits you. There are many to explore. It might be something as simple as gazing upon a beautiful flower.

whollyaligned.com

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Impregilo

Thank you WhollyAlligned, for your comments on the link between diabetes and CKD.

My diabetes was diagnosed in 2011 and CKD condition started after I had nephroctomy in 2007.

I had followed plant based diet since my diabetes was diagnosed and HbA1C hovers around 6.5%.

My diabetes is not hereditary and I am not overweight.The reason behind is a mystery to me , although I have been taking statins for the last 20 Year or so.

There’s a link between statins and diabetes but cholesterol has been an issue as well.

All these conditions are interlinked and with all this medication and food intake low in potassium, salt, proteins and phosphate is a struggle in itself.

One tries to remain positive and hopefully the conditions remain stable.

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WhollyAligned

Thank you. How can I best help you? Cholesterol on its own is not so interesting as a risk factor for heart disease. Many people who have cardiac events had normal lipid profile. So were statins prescribed purely for management of high cholesterol? Certainly I would advise to supplement with COQ10 if not already as this is depleted by statins and important for both heart and kidney health. Do your research of course but you might find this interesting rejuvenation-science.com/re...

What is your current GFR?

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WhollyAligned

Apologies, you had it in original post. GFR good and I really think COQ10 will help. Happy to chat anything through

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