New To This Nightmare

[Turtlewoman]

I haven't been to a nephrologist yet, I have an appointment in November. My GFR is 54, my feet and ankles are swollen, and I'm scared. I've given up red meat, dairy, potatoes, tomatoes, brown rice and beans, based on internet research I've done. I've been a type 1 diabetic for 51 years. Should I be limiting protein? Eating mostly carbohydrates will make my diabetes go nuts, not to mention my weight.

[medway-lady]

Why have you given up all this food? my GFR is 27 and is up from 8 three years ago. I'd suggest you drink lots of water to stay hydrated and wait until you see the consultant before changing anything as at 54 its unlikely it would have a huge and noticeable effect. Perhaps if your suffering water retention a chat with the GP might help in the interim period but honestly try not to worry to much and being diabetic means you must be extra careful with diet so a really limited diet might give you all sorts of other problems. Stay patient and hydrated and see what a consultant says and if you need a diet then you can be referred to a Renal dietician.

[Skeptix]

Have you been newly diagnosed? If so it's probably best to see the doc before panicking and going off on a random diet. Trimming red meat and salt and staying reasonably hydrated are good enough first moves. You could also make sure you're not overdoing it on the protein - aim for 0.8gr / kg body weight from all sources. Re: carbs. Can you just not steer clear of the higher carb veg?

See if you can get a renal dietician as has been advised. They tend to be rare as hens teeth however - the treatment paradigm for CKD has been to do little until you reach end stage?

The very latest National Kidney Foundation guidelines KDOQI 2020 are advocating low and even very low protein diets. These would necessarily be plant or very nearly plant based. This applied at stage 3a to slow or halt progression of the disease

If your nephrologist /renal dietician doesn't suggest that route then ask why. Trimming red meat from your diet and reducing salt and potassium is advice from Noah's Ark. Not bad advice but not latest advice. It will take some time for clinical practice to catch up with the latest guidelines.

But get to the doc. Read around here too. And don't panic!

[Bassetmommer NKF Ambassador]

HI Turtlewoman,You are doing some of the right things, but maybe for the wrong reasons. First of all, the swelling may have nothing to do with CKD. That is why you need to see the doctor to rule out things like poor circulation or other issues which can cause swelling. Then once you see the doctor, you can figure out what kind of dietician you should be seeing. I would start with one who is verse in both diabetes and renal issues, if you can find one.

Some of the foods you have removed are actually good for you like the beans and brown rice. Don't let the internet be your guide. It is full of junk.

There are a couple of things I might suggest to make your diet more palatable. You can eat lean meats; chicken, turkey and fish but limit the portion to 3-4 ounces a meal. Add non-starchy veggies as much as you can. I start every meal with a salad to fill up on that first. Limit cheese because of the calories and salt but you still can have some. You don't want to go too low on the protein, which is why you need a dietician to guide you. Tomatoes and other high potassium foods should be eliminated only if you have high potassium and with a GFR of 54, I would be surprised if that is an issue. Potassium and phosphorous build up is usually at stage 4 -5. Make sure you stay hydrated, but let the doctor tell you how much to drink, especially since you have edema. Walk as much as you can to help with that and elevate your legs when you sit.

And lastly, and I know this is hard because I am there right with you, lose weight. There are some new diabetic meds out there that will help with that, help with your diabetes and keep your kidney protected. Ask about GLP-1 inhibitors like Ozempic. Losing weight can get your diabetes in control and is best for the kidneys. Have patience and lose weight sensibly and over time. Again, a dietician will help.

Best to you,

[Sophiebun11]

Hi Turtlewoman,

It's good your PCP is referring you to a Neph. while your eGFR is still at 54. I wasn't referred until I was at 29.

Talk to your PCP and show him/her the edema you're having. You may need to be on a diuretic like furosemide although diuretics can be harmful to the kidneys, having excess fluid is harmful as well. It can be a sign of heart disease so don't ignore it and write it off to CKD.

You may need to limit animal protein after speaking with a dietician. You can still get plenty of protein from plants which are easier on the kidneys. I've been a vegetarian most of my life and tried a vegan diet a few times over the years. There is nutritional yeast powder which is full of protein and can be added to any food. It has a nice nutty flavor. You can sprinkle it over anything or mix it in. No need to add more carbs.

Try not to worry while waiting to see the Neph. next month. You are a long way from kidney failure. You have plenty of time to take steps to change your diet and health to improve things or slow the decline of your kidney health.

Best of luck to you. Let us know what the Neph. says.

[Turtlewoman]

Thank you! That makes me feel better.

[tonyng42]

GFR of 54 isn’t that severe and should be manageable. My suggestion is to rule it out from being a factor with the symptoms you are currently experiencing by seeing a nephrologist and then look more into diabetes being a possible cause. In either case, best of luck to you.

[CSummer]

Personally I started a mostly Whole Foods Plant Based diet. That means I eat mostly plants and whole grains ( inc. beans, brown rice, and potatoes). My GFR was in the mid 50s but is now up to 60 s range. I still have some ankle swelling but not as severe. I do have occasional meat and eggs but nothing like I did or the typical diet of 2 to 3 servings a day. I am not a diabetic so that adds another level for you…but encourage you to read books like “ How Not To Die”, and the “ Starch Solution”. But at minimum please watch a YouTube video by Dr Sean Hashmi whom is a nephrologist called “Plant Based diets and Kidney disease”. Lots of great info!!

[sparkie88]

I don't think you should limit diet for renal issues yet because you should wait till you see a Dr it is not your kidneys you should be worried at this point but your heart and your diabetes so do things that benefit your heart instead and low carb can work too but you have to work with a dietician to help you out and finally do things that will help you to relax. drink enough water and not over watch sodium and sugar you are still in a good place for improvement. PS do watch out for anemia and vit B12 zinc deficiency sometimes it is a bad idea to cut off animal products and not replacing it correctly and eventually over doing potassium which is more fatal then eating extra protein or fats. Not saying you can eat the whole chicken in 1 sitting but in high moderation Diet may help but as a combination and not the only method Take care.

[WYOAnne NKF Ambassador]

Everyone is correct that you should wait to start any kind of "kidney friendly" diet till you see a doctor/nephrologist. We are all different with different causes for our CKD diagnosis. A diet for one of us, may not be right for you. To start, do limit salt, no added salt, and make sure you stay hydrated.For now check out the NATIONAL KIDNEY FOUNDATION website. If you click on SUPPORT, there are suggestions for a kidney friendly diet. This site also has good information regarding kidney disease.

You can also go to davita.com and sign up for their KIDNEY CLASS. They also have info regarding diet.

Start now making a list of questions you may have for your nephrologist. I have had a transplant and I still do that - write out a list of questions or put on my phone. Make sure you mention your swelling in your feet and ankles

Being diabetic and having CKD, you might want to ask your nephrologist for a referral to see a renal dietician. Most metropolitan areas in US have them. I live in WY and we even have one where I live. Usually you only need to see them once and after can be a "telehealth" appt. on your computer or phone or email.

Best of luck to you and keep us posted.

[RoxanneKidney in reply to WYOAnne]

Diet is the number one thing. Animal protein and salt are hard on kidneys. That is across the board unless you are in hooked to the machine. For kidney diabetic clients there are new drugs the SGLT 2 inhibitors that are prolonging the life of the kidney. Many doctors still do not know about them or do not prescribe because they cost more and require more paperwork. I find those excuses outrageous, but get your diet under control.

[WYOAnne NKF Ambassador in reply to RoxanneKidney]

Yes, all true....but she needs to see her nephrologist first. NO, what is appropriate for a diet for you, may not be the one she should follow. Needs to see her other labs including her A1C. This is the first time she will see him/her... nephrologist. We are all different even though we are all CKD patients. I am not diabetic, so my diet will definitely be different than Turtlewoman. I have also had a transplant and have completely different issues than she does. We can't be all lumped together due to our CKD.

[Sammi_n_Munk]

Hi there Turtlewoman! Welcome to the community! I can definitely relate to the fluid retention, believe me. You seem to be doing the right things, but do remember to speak to your doctor before making any big changes to your diet and exercise regimen.

It’s important to note though, that even if this sounds crazy to you right now, you should try to stay well-hydrated unless your doctor(s) have advised you otherwise.

And yes, as a diabetic, you need some protein in your diet, it just shouldn’t be over-consumed, because it can be a little tough on the kidneys, especially if they are already in a weakened state. It’s also true that red meat, pork, chicken, protein powders and bars, and protein from beans and whole grains all need to be limited. Egg whites are also completely protein, low in calories, but are more easily digestible. But even these shouldn’t be over-consumed.

I’m also diabetic (type 2), and I find even plant-based protein, especially that from beans, will spike my blood sugar right to the moon! Lol! I consume mainly eggs and egg whites with some chicken the odd time. It is said that as people with CKD, a protein portion size should not be bigger than a deck of cards.

Remember also, with regard to fluid retention, that foods high in sodium should not be consumed. That’s processed foods of any type, especially cured meats and salty snacks. Try eating more kidney-friendly veggies like celery, cucumbers, cauliflower, cabbage, etc. DaVita.com has some kidney-kind food lists as well as recipes that you may find useful. And exercise is also helpful in getting your body to release some excess fluid. It’s important to keep your heart rate healthy.

You can also try elevating your legs. I was often advised by my medical team to keep my feet “higher than the heart”, a few times a day when I was resting. Also, it is said that a high creatinine level can contribute to swelling issues, as well as some medications you might be taking. Speak to your doctor or nephrologist about this.

I hope you will find this helpful. I wish you all the best! Please keep us posted on how you come along! And once again welcome! God bless. 😊👍🙏

[Raji838]

My lab tests 4 yrs back showed I was leaking proteins (they have some name for it) I was advised to cut all extra proteins. So now only on vegetables It’s now controlled, reason given this causes more faster damage.