Hi everyone. I’m a new member who have recently been diagnosed with stage 3 Chronic Kidney Disease ( CKD ) and besides prescribing Statins for my High Cholesterol (which is 5.5) my doctor will not offer any further help at this time. He says my Chronic Kidney Disease is not at an advanced stage for him to refer me to a Nephrologist and a Dietitian. My GFR is 45 and my Creatinine 111 and I really want to improve and prevent my CKD getting worse but I’m struggling to do this on my own.
I’m trying to do my own research but some of the information I’ve heard and read is contradicting. Can anyone recommend source of helpful information backed up by research and personal experience? Also, does anyone take and notice any improvement with supplements and herbs such as Co Enzyme Q10, Vitamin D, K2, Alpha Lipoic Acid, Nettle tea and
cinnamon? I am Vitamin D deficient so i’ve being taking 25mg daily for many years now. I’ve only recently found out that I need to take K2 with it. However, I’ve read that K2 clots the blood so I’ve NOT started taking it due to my family history of blood clots. Does anyone know If these supplements work? Thank you.
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First, begin to look for a new doctor. It's your health and if he won't abide by your wishes then you need to find a physician who is more receptive to your wants and needs. Not only should you see a nephrologist but you should also seek a referral for a Renal DIetitian. The sooner you begin the longer you can put off kidney failure.
To help clear up the way you are currently feeling, go to the website davita.com and register for a free, 90-minute Kidney Smart class in your area if you are in the USA. It will give you a lot of information on this illness and provide you with resources to help you maneuver through this. If you aren't in the USA or for even more information on CKD go to kidneyschool.org and you'll find a series of learning modules that will help you as well. Both of those sites will also help you develop questions to ask your new PCP and nephrologist about what else you can do to slow down the progression of CKD.
On the DaVita website I first mentioned, you can also look at their recipes for helping to slow the progression. Basically, you cut out beef, (all red meats), processed foods, eliminate smoking, and cut significantly back on alcohol. Also, cut back on sodium, protein, potassium, phosphorus, and calcium. None of these things should be completely eliminated but a renal dietitian will help you develop the correct plan for you that will help greatly. Gather up your last years worth of blood and urine labs and bring them with you for the RD to help develop your kidney-friendly meal plan.
Also, avoid any supplements that weren't prescribed by a physician. They aren't regulated and you can't be sure of the actual content in many of them.
This will get you off to a good start but begin by cutting out your PCP.
Thank you very much Mr Kidney for your encouragement. I will be changing my General Practitioner in the near future but that probably won’t make a difference as I live in the U.K. and medical treatment protocol is basically the same regardless of doctors but I will definitely ask again.
I am in total agreement that it is time to seek another GP.
One of my closest friends lives in the UK and has Minimal Change Disorder; also an autoimmune kidney problem, so I know the protocol.
She has a wonderful GP who listens, makes suggestions and works with her and her consultant; that is someone that you need on your team.
I know that it is protocol not to be referred to a nephrologist right away, but the right GP will be able to treat you as well as possibly refer you to a consultant.
As these great people have so lovely stated, your diet is a key to stopping progression.
All areas have been covered, so I won't repeat them.
Mr. Kidney - Why do you you refer him to DaVita's web site while at the same time tell him to stop eating red meats?
"On the DaVita website I first mentioned, you can also look at their recipes for helping to slow the progression. Basically, you cut out beef, (all red meats), "
DaVita's website contains a lot of "kidney friendly" recipes that contain red meat for CKD non-dialysis people. They have a whole web page of recipes for beef/lamb/pork: davita.com/diet-nutrition/r...
I wasn't sure if you were already aware that DaVita's website contained a lot of red meat recipes for CKD stages 1-4.
Very simple Steve. Not everyone has the same restrictions. DaVita offers those recipes for some folks who don't have that restriction. Initially, many RD's will have new to CKD patients cut out the red meat for a time to help the kidneys. When I first met my RD I was unaware of the cause of my CKD. I was advised to cut out all red meats and limit the other proteins to 8 oz. per day. By the second time I met with the RD, my nephrologist had determined the cause and the RD said I could include a three-ounce portion of red meat, well-cooked, every couple of weeks. By that time, I was feeling better with the meal plan we developed and made the decision to get my protein from sources other than beef. When my GFR had moved from it's low of 32 to it's "high" of 65, the RD determined that if I wanted I could have a beef meal once per week.
I didn't make the change to include beef. About 2 months later it was determined that I had gallstones. Even the leanest cuts of beef were going to be a problem.
Basically, until you know all of the health issues you have cutting out red meats is the way to go until a more knowledgeable person, your RD/Nephrologist, advises otherwise. My gallbladder is being removed next month and I'll have to make more adjustments to my intake. Also, regarding beef, the cuts with the most fat are the tastiest and the leanest cuts are not as tasty. My kidneys are doing fine, as my last GFR, early this month, had me at 57. However, with the gallbladder being removed, beef is out, and so are some types of fish.
I understand, but DaVita's website doesn't mention anything about restrictions and implies that the recipes are OK for anyone with CKD stages 1-4. Even if someone has no beef restriction, anyone with CKD stage 3 or 4 should eat a minimal amount of beef as there is a correlation between the red meat consumption and winding up on dialysis. Also, DaVita's website doesn't mention anything about eating grass-fed beef which seems to be much preferred by the dietitians I've talked to, especially for someone with CKD. I would think that DaVita's website would be a little more "up to snuff" about what it labels as "kidney friendly". For instance, I need to really watch my phosphorus and it would be good if they had very low phosphorus modifications or versions of the recipes.
Sorry to hear about the gallstones. Good luck on the surgery next month.
I agree in part with what you are saying. Perhaps you need to direct those queries to DaVita directly.
When I recommend a kidney-friendly meal plan and a visit with a renal dietitian it is to establish a diet for someone based on their individual lab values. I use many of their recipes but I also advise you make adjustments and not to take them at face value. Many of their recipes also call for some salt. If I followed those recipes my problems with high blood pressure would be way out of control. You have to make adjustments for your own personal needs.
The same goes for your phosphorus levels. Look at the recipe, substitute where you can to tailor the recipe to fit your needs.
For someone who has not yet seen an RD, DaVita is a good place to start until you know what to zero in on.
The information given me was a copy of a chart that the nurse had but it didn't mention where the chart came from so I can't help with that. I copied the information here for you. My instructions from them were to go only with the Very Low-Fat fish for at least the first 3 months as I recover from the surgery and continue to monitor my labs and see if the pain returns or my labs climb in areas.
Fat Content in a 3 ounce cooked Serving of Common Types of Fish and Shellfish
High Fat (10 grams or more)Herring, Mackerel, Sardines, Salmon (Atlantic, Coho, Sockeye and Chinook)
Medium Fat (5 to 10 grams)Bluefish, Catfish, Rainbow trout, Swordfish
I agree with Mr. Kidney, you need another doc. On your own, at least get to a dietician who can map out a meal plan for you. With good nutrition and eating a kidney friendly diet, you might be able to maintain your numbers.
Stay away fro supplements unless prescribed by the doc. You will want to get you Vit D up and that should have been something your doc told you. I take a much higher dosage as I was low at one time, and my doc prescribed the dosage. Gave me a lot more energy.
I too have issues with family blood clotting issues, so I do not take anything Vit K and I watch what I eat that is high in it.
Again, this is what the dietician can help you with. For now
Here is a simple plan to start:
1. Eat out infrequently. You have less control over your food choices.
2. No fast foods
3. No process foods such as frozen dinners or packaged products
3. Less meat the better, chicken and fish still have high potassium, eat sparingly
4. 1-2 cups of coffee and use real crème not non-dairy
5. Lots of water up to 2 liters unless told by the doctor to drink less or more
6. Incorporate more whole foods in your diet: vegetables and fruits
7. Little to no alcohol especially beer One glass of wine might be ok
8. Cook without salt. You will get used to it and then eating stuff with salt will taste bad
9. Do not take supplement, OTC drugs or other without checking with the doctor first.
10. Get Educated. Take classes on how to manage kidney disease. There are classes on the intranet as will as maybe by your local Kidney Foundation davita.com/education/kidney...
I also agree that you should find a new doctor. I was recently diagnosed with Stage 3A (GFR currently 58). While my nephrologist doesn't seem extremely concerned about my CKD, he does stress the importance of monitoring my levels to ensure they do not worsen. I have an appointment scheduled to see a nutritionist in 2 weeks. I'm hoping she can give me more tips to help increase or maintain my GFR.
Thank you for your support. I live in the U.K. and all doctors go by a standard treatment protocol and in terms of chronic kidney disease it seems like there is very little to none delay / prevention treatment. Good luck with your upcoming appointment. Hope it goes well.
I live in the UK too so I understand your problems. I am also stage 3, GFR 47. I think others on this site who live in the US do not understand that we cannot simply change our GP! Nor do we have a "team" to take care of us. I asked my GP for a referral to the hospital dietician but was told that I did not need any dietary advice. So, use the DaVita site, also recipes at kitchen.kidneyfund.org to work it out for yourself . The latter one was very helpful as you can choose to filter the recipe suggestions, eg low potassium, low protein etc. Good Luck.
Great you are being pro-active. My new Doctor diagnosed me properly and gave me a specific diet for my needs based on blood work. It has been a big help on slowing down CKD. I was diagnosed at 3b, 4 years ago.
Your feelings are very normal. Whenever the word, kidney is mentioned, it can cause a pit in your stomach.
This is all a process; a journey which takes time to balance and organize. One step at a time. Kidney issues can't be cured, but they can be managed with the intent to stop or stabilize progression.
It really isn't a diet, but a bit of a lifestyle change.
Porridge, be it Oats or Cream of Wheat is good.
Eggs, fish and chicken.
Low salt, low protein and monitor of your dairy.
A lot of good vegetables such as onion, pepper, cabbage, cauliflower, eggplant yellow and zucchini squash. Quorn is a meat substitute my friend has used instead of beef - her family had it in shepherd's pie and didn't know the difference.
Spices without salt make foods great.
Strawberries, blue berries and apples are excellent.
Drink water and eliminate dark colas when possible.
One day at a time, see the new GP and go from there to start.
Please reach out at any time as one of us will always reach back!
There is one supplement you should definitely discuss with your doctor and that is fish oil. There are numerous articles about the effects of Omegas 3 for reducing inflammation, just google, “ is fish oil good for CKD.” However, trying to figure out which fish oil and how much and if it’s right for you, should be discussed with your doctor.
Eliminating inflammation in your body can help slow progression. Another way to do that besides all the great advice the others have given, is to also balance your Omega 6 to Omega 3 ratio. When Steve mentioned grass fed, free range meet, the reason it is favored is not only for the benefits to the enrichment of the animal’s life, and to our soils, but also because free range, grass fed meat and dairy is higher in Omega 3. This includes yogurt. Yogurt coming from cows that are free range, grass fed are higher in a Omega 3. If you eat it for probiotic affects, avoid any sweetened versions and get only plain unsweetened.
The best oils to use which are a better ratio of Omega 3 to 6 would be olive oil, walnut oil, macadamia oil and flax oil ( never cook with flax). I take flax oil daily instead of fish oil as I can’t tolerate fish oil on a daily basis. I use it with a splash of vinegar for a dressing on my salad daily and in my morning veggie fruit smoothies. Beyond the large amounts of salt and sugar, another reason to avoid fast food and processed foods are the oils they use in the products which can also cause inflammation.
You’ll find we all have different approaches to diet and supplementation on here. I take a rather large amount of supplements, but I worked with several doctors on this for my special needs and it is quite dangerous to try and take that on by yourself. Mr Kidney mentioned Davita.com. I believe they along with the National Kidney foundation discuss supplements on their sites. Again, though, it is a guide and not accurate for everyone.
Before you worry about supplements, you need to properly educate yourself on the basics of CKD since you are recently diagnosed. Here is the best book to educate yourself and it is current (published 1/14/2019).
Hi Beckett 24. Glad you found something that is working for you. Thanks for sharing. What is the name of the book please? Have you ever read The Kidney Solution by Duncan Capicchiano? I’ve seen it advertised and was thinking of buying it but it’s in a download format and I don’t do well with that format I prefer paperback version.
The name of the book is mentioned in the link to my HealthUnlocked post. Read the short post, see what the book did for me, and find out the name of the book. It's available on Amazon. I would get this book if you want the latest research and a complete tome to CKD.
Thank you very much for sharing. I will get the book from Amazon. I’m afraid I don’t understand your test results as they are recorded differently than the labs in the U.K. for example, my creatinine is 111. The normal range is from 49:00 - 92 umol/L so it’s 19 points over the normal limits.
The higher your vit d & b12 levels are will also help to stabilize the gfr. These will also help with greater health as well. I asked my nephrologist and he concurred with my findings. This is a journey not a quick fix. Some days will be better than others. Be kind to yourself.
Hi Shira 12. I have been taking Vit D3 to help joint pain as my blood test showed I’m deficient. However my friend recently told me (and I’ve read online) that I should be taking K2 with it as D3 on its own will cause plaque built up in the arteries. I’m a bit confused about the role of K2 though because my understanding is that it prevents calcium calcification and helps with blood clotting. I have a family history of blood clot to the lungs which resulted in fatalities so I’m not sure whether K2 would increase or decrease the risk of that. Perhaps you could ask your nephrologist next appointment. Thank you.
I too just was diagnosed with stage 3 my gfr was 40 but my doc said I have been in stage 3 for awhile which not one of my docs ever said a word I have been doing my own research as well my doc as me seeing a nephrologist I guess every doc is different
The way I found out was I needed bloodwork for a mri and my results came back low and I questioned it because i have been having a lot of back pain and that is how I found out I looked back at all my labs and starting back in 2011 my gfr has been declining but not one word was ever said but the more I look at the symptoms I have had it was my kidneys all along. Some of the things I have changed was I took out dairy I started using almond milk and started eating more of what was recommended for stage 3 I don’t know what is in store when I see the kidney doc but I figure if I can start a little at a time it worth a shot I also have a torn rotator cuff along with everything else
I was told, at stage three, of course. But it was my pcp who broke the news, and said what I needed to do was stop taking NSAIDS. And, since I'd been told every scare story my then-husband knew about anyone he could think of, the poor doc took the rest of the time to calm me down. That was about eight years ago. Still stage three! And eating better, now that I have learned better and been here.
Hi! I'm just recently diagnosed with CKD Stage 3A, was referred to a Nephrologist (possibly because I am 67 years old and it's more of a concern at that age????), and have been advised that, with a "'kidney friendly diet", I may live many more years before seeing progress much more. However, like you, I've been seeking more specific guideline on what my diet should look like. I'm beginning to understand that it is case specific, based on blood work results, and I may soon be seeking a renal dietician for some guidance.
I know HealthUnlocked deals pretty specifically with KIDNEY issues, but your CHOLESTEROL issues caught my attention since, due to heredity, mine was diagnosed as high 2 years ago but I have been able to take it way down into the normal range strictly through diet, weight loss, and exercise ... no statins. I have my reasons for seeking to avoid statins. Anyways, if you'd like, I'd be happy to share the natural interventions I've used, and plan to continue using, over the past 2 years to overcome that condition and seek to keep it under control. I fully recommend NUTRIM which is nothing more than pure oat b-glucans. It can be found online. Let me know if need any other help. Stay safe!
I am an 80 year old male who was diagnosed with stage 4 (GFR 29) a year ago. I thought it might have something to do with statins I had been taking for a long time. So I stopped them just in case. I started taking Vit B1 500mg each morning with tea. After about 3 months the GFR went to 33, and after 9 months it is now at 41. Don't know why but something is working. (All along I have been on a low carb diabetic diet but lessened the protein with the kidney diagnosis) Best to all! Dave
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