New to CKD need advice

[Decembersong]

So, I'm a 56-year-old female and basically, I'm a mess. I was diagnosed 2 years ago with diabetes 2 and that and the fact that I have high blood pressure (although now very controlled) lead me to kidney disease. I'm in stage 3. The thing is, I didn't even know that I was in stage 1 or 2. A million specialists and nobody said a word. I'm terrified and confused. The things that they recommend on the kidney disease diet such as white breast and white rice are an absolute NO on the diabetic diet. Everything contradicts each other and I don't know how to get ahead of this. Any advice? Please?

[Hidden]

Hi and welcome to the community.You are not the first to ask why you weren't told in the early stages. I was never told until I reached a GFR of 32. When I began to investigate after one PCP gave me the news I discovered that I had CKD for over a year before I was told. Now the good news.

There is much you can do to slow the progression of CKD. I have T2D and Hypertension as well. My HBP is also controlled by meds and the diabetes if controlled with my diet and exercise.

I completely understand when you talk about the confusion regarding what to eat. On the same day I went to a doctor and was given the diagnosis of CKD I was also told by another physician that I had lost 146 lbs. and no longer needed any medications for T2D. After the next physician told me about having CKD, I later learned that all of the foods I had been eating to lose the weight were no longer healthy for me to control CKD.

This is what I did.

You can go to davita.com and register for a virtual, 90-minute, Kidney Smart class they will provide you with a lot of information and resources. Also, the DaVita website has an extensive website on RECIPES. They are rather explicit on which meals are good for someone with diabetes and CKD and not on dialysis. You can also select meals that are low in sodium to help control your HBP. One word of caution, do not take any recipe at face value. You will have to adjust each menu for your specific preferences and needs based on your lab reports.

If you haven't already found a nephrologist, find one. Depending on your insurance and the requirements you face there, you can go to healthgrades.com/find-a-doctor and enter your city and the speciality (nephrologist) and you can find reviews from patients on each doctor, as well as what insurance they accept and if they are taking new patients.

In the meantime, you can also go to kidneyschool.org and watch the learning modules and those are great to develop questions to ask your new doctor. Also, collect as many of your previous lab reports and when you meet with the nephrologist, ask for a referral to meet with a renal dietitian. Bring the lab reports with you and together you and the RD can develop a kidney-friendly meal plan designed for you. The RD will look at your labs for protein, potassium, phosphorus, sodium, and calcium. As you know added salt is a non-starter. You can add herbs and spices to flavor any foods you prepare. Your meal plan can be vegan, vegetarian, or include some protein from poultry and seafood.

Keep hydrated with water, no fast foods, no red meats, no processed foods and no cured foods.

Talk to your nephrologist, cardiologist (if you have one), and your PCP and ask them to help you work out an exercise regimen that will work for you. It should be something that you can do all year long, and in any weather.

You also can use drugs.com and they have a feature called MY MED LIST. Enter all your medications and you'll get immediate information on any med that has interactions with any other of your meds, that have interactions with food and those that may be harmful to your kidneys. I have their app on my phone and when/if a physician wants to order a new med, I enter that med in my med list and find out immediately if there are any issues I need to be concerned about before I leave the doctor's exam room and can discuss it and see if there are suitable alternatives before I spend any money on a med that may do more harm than good.

You have found a great community for sharing and getting advice and support. Come back as often as you need and all we ask is that in time you pay it forward to others who come here.

Best of luck.

[CatOnACloud in reply to Hidden]

Just wanted to say thank you to you Mr. Kidney, for I read your helpful posts and everyone else’s, and I don’t usually comment, but I am learning. Also as an aside, Nephrologist’s in many states in the USA refuse to see you until stage 4. I got in because I played the hey i only have one kidney card, and I earned it. She was dismissive, rude, and seemed to think I was overreacting to a gfr gone from 60 to 44, repeatedly, after a full pulmonary embolism. It’s gone back up now, slowly. But honestly, I made her look at ALL my medications and she said they were ok. That’s it.

And also on topic with the thread, I had rt kid removed when I was 17, and I was never informed that left me with CKD. I found out on my own at age 45. Despite seeing urologist’s over the years etc. Just a reminder to our new members from me: always do your due diligence in research. Read, watch videos from Davita etc., meet with support personnel who understand and can help you to navigate through this. You will be in control then and feel empowered. Best!

[Hidden]

You have only been given a diagnosis of disease not death. Most of us panic when we first get diagnosed with CKD. Stage 3 is the time to start being mindful of your diet and lifestyle. The objective is to try and stabilise your kidney function or at least do everything you can to slow the decline. With diabetes you won't find recipes that suit, as you have found, they contradict each other. I was only told I had a kidney problem when they failed. I had no idea until I drove myself into hospital. Thought the weakness was from diabetes playing up, or more accurately my not getting the blood sugars correct. I don't medicate for anything but vitamin D deficiency now and I have gone salt and sugar free, as best as I can. I eat little red meat and never eat man made or adulterated foods. I keep it natural and fresh as much as possible. I drink moderate amounts of water or cups of tea. I do eat a reasonable amount of wholemeal bread though, one of the few refined foods I eat. I exercise moderately. I manage to hold onto stage 3 kidney function with a very slow decline, which could be a natural decline as kidneys do decline with age, the diabetes is behaving.My BP averages around 150/95 although it was recorded at hospital today at 183/107. That is what anxiety can do when people tell me I'm having a heart moment. Fortunately not, just ripped the chest muscles. A painful reminder I'm twice the age I think I am! Not exercising moderately enough, apparently.

I have my bloods done 3 monthly to keep a check on how I'm treating my kidneys. Depending on the results I modify my diet accordingly. This year my diet has become locked in as my results are pretty well stable. Life continues despite being CKD, I have out lived my Dr's prediction and life looks like there is a future ahead.

Cheers

[CatOnACloud in reply to Hidden]

Thanks for the info you have provided. May I ask, is it common to have vit D deficiency with CKD? I am on 50,000 IU twice every week and can’t get my numbers past 40 ( it was under 20 for 20 years). I always thought it was my steroids causing it but could be kidney. My nephrologist can’t be bothered but I have the appropriate people

[Hidden in reply to CatOnACloud]

I'm doing 1000IU (25ug) daily and when on prescription 1250ug monthly. It costs me $23.00 for 3 pills for 3 months so I only get a script when I can get it free. I use a D3 supplement which is far cheaper when I'm paying for script and meds. I make sure every time I see my Dr I get the script which then only cost the filling charge of $5.00 the script being free by virtue of having to see my Dr.I don't know what the results are now 5 years on as it is deemed too expensive to be retested in NZ. The health system in this country is free, but only when you can get it!The kidneys are responsible for producing vitamin D which is vital for the immune system and helps the body to function. Hence it is very common to be deficient in vitamin D with CKD.

Steroids are a likely cause of your kidney problem. My mother died with kidney failure after 10 years of steroids to keep her alive. Not really an option with her steroids, take it to prolong life or die now.

I have had very little medical support through my health issues and have stumbled through with my eyes on my test results, they are my bible, nothing else has mattered. I'm supposed to have been refereed to the appropriate specialists with my CKD and diabetes, yet I still wait. Every other Dr I see is stunned this hasn't happened. We are supposed to get a referral at stage 3 or when diagnosed diabetic.

This forum has been a God send as has Dr google when used wisely! I have taken on understanding and managing my health myself. I have much pleasure in correcting my Dr when she points out how well "we" are doing. Shuts her up when I retort it is down to me not "we", that "we" doing so well, your help has been invaluable! It would be true to say I don't tolerate fools readily.

Sorry for my rant, back from the hospital Wednesday with chest pains. Apparently not heart but likely anxiety! How anxiety can cause a nasty asthmatic cough I fail to see and the chest pain persists. I'm betting a chest infection, but then I'm not a Dr. They wonder why I have given up on them!

One thing I have learnt, be informed, stick with scientific fact and always second guess medical advice. Dr's like to mitigate your health, I refuse to let that happen, for the moment. While I'm holding reasonably steady with some minor improvements, "we" will do it my way. I do like a good challenge.

Cheers

[CatOnACloud in reply to Hidden]

Good for you! If I didn't view the medical community with one eye open I'd be toast, for certain. Interesting your vit d regimen, and thank you, for some reason I just missed the correlation on the kidneys and Vit D. I am glad my insurance pays for it! It is so difficult when you have the coverage, but you have to wait so long. Then you have to become the 'squeaky wheel' calling them constantly. Do that

My CKD was a tumor I was born with in my right ureter, by the time they believed a child's pain, it was spilling over for years and not functioning. So the one kidney has done well but is up against much disease of the remaining adrenal gland that no longer functions, hence the need to replace steroids myself as my body can't supply any.

Then I got Cushing's from the steroids so the diabetes isn't controllable anymore. One of those rare endocrine diseases and situations where diet doesn't work and exercise is no longer possible. I was too long with improper care to put it mildly.

Good luck, remember to call and squeak

[Hidden in reply to CatOnACloud]

Bluntly I'm ethnically challenged making me unable to get the medical help in a timely fashion in my own country! My BP, CKD, diabetes, Osteoporosis, IBS, detached upper arm muscles, high cholesterol and brain fade from suspected MS are all untreated. So far waiting 6 months for the vital brain scan. But because I do survive like this, I continue with my existence, refusing any medication because of the reactions I experience from it all. As yet I have not found it necessary to mitigate my health issues nor have I decided enough is enough and take a final last step. What keeps me going is that I don't have enough brain cells to capitulate or surrender a life. I keep telling my wife as long as I can walk, talk and cause trouble I must be OK. I have to remind myself medicine is not an exact science and GP's are just that, general practitioners not specialists in any field. Not everyone falls into the "norm" there are some of us that are on the outside wishing for once in our lives we were "normal".Mr Dr keeps asking what it is I seek, my reply, some sense of comfort or death. For the moment not realising either.

Take care.

[Darlenia]

Hi! I'm caregiver to my husband, a Diabetic Type 2, who is now on dialysis. Indeed, the majority of those diagnosed with Kidney Disease are diabetics. Unfortunately, diabetes destroys the small blood vessels inside your kidneys. In turn, that erosive force can also create heart disease, drive up blood pressure, and more. If one can eliminate the weight, then the destructive action generally stops. As you probably know, diabetes is largely fueled by sugar and carbs (which convert to sugar) so those are things you'll definitely want to keep in check. (Limiting processed foods is always recommended for everyone.) The good thing is that you've caught your situation at a good stage where you can prevent further damage. And that's wonderful. Unfortunately, diabetes is so common that people brush aside the health conditions it produces. At my husband's dialysis center, for example, all are diabetics. Like those there, my husband took his pills and insulin and assumed all was well until everything took an abrupt turn and he wound up on dialysis. On the other hand, his mother, when told she was diabetic, immediately dropped her weight, eliminated her medications, and lived well into her 80s. So, two different people, two different choices. It wasn't until my husband's nephrologist told him that he only had 7 years to live, that my husband changed his diet. Unfortunately the message came a little too late. But you have sufficient time to turn your situation around. So, here I am - sending you encouragement. You can do it!

[Bassetmommer NKF Ambassador]

Hi Decemebersong.The newest information out there is that whole grains are ok for CKD. Matter of fact, they are better for you than plain white starches. It makes sense when you understand that with plant based foods, you do not absorb all the phosphorous, which was the concern with whole grains. They finally realize that the fiber out is so important for the diet, especially for diabetes.

So things like popcorn and oatmeal are now good for CKD.

I was told this by my certified renal dietician. But here is an article from DaVita on the subject.

davita.com/diet-nutrition/a...

[Darlenia in reply to Bassetmommer]

Agree. The "renal diet" and the "diabetes diet" are often at odds. Whole grains are the way to go so popcorn is good, rye bread is better than white, etc. Rice packs a huge carb wallop so we avoid it. Some fruits do too - fruits today are often designed to be sweet . We frequently substitute zucchini for pasta, etc. And we don't have a problem using meats here and there. One can treat the cause (diabetes) or one can treat the effects (kidney issues) or one can find a happy medium. When at a crossroad, we put most of our focus on the diabetes. I have friends who have lost weight through fasting, through carb control, through gastric bypass, and more. Losing weight stops the carnage. Stunning to witness. Suggest everyone meet proactively with their doctor to rid themselves of diabetes in a way that works for them.

[Decembersong in reply to Darlenia]

Wow. Thank you. A lot to digest. Ha, no pun intended. But really, a little overwhelming but very helpful!

[frustratedTWO]

Just came back from the nephrologist's office today and just cried in the car before I left the parking lot. The only edit to your post is I'm 60 turning 61 in three weeks and male. My new family physician spotted the number and explained to me this is trouble and had a referral done immediately. He was the only doctor to point it out to me on the lab report. The doctor today pointed out this site and I'm so glad to see the posts. I was feeling so depressed, but now I see the resources and support, thank you for the sharing. I will keep you all in my daily prayers.

[Decembersong in reply to frustratedTWO]

This site has been a Godsend for me! I'm eating healthier. Taking my swimming more seriously. I also found a good doctor who is sort of a glass-half-full kind of person and that helps me a lot. Good luck!😀

[itzmich]

Hang in there....we have all felt that way. This site has helped so much. If you have a question its a good place to start. Be proactive in helping your kidneys. By eating a mostly plant based diet. Keep your portions controlled, exercize daily, hydrate with water. Limit alcohol. Etc. It seems like a lot of restrictions but it will make you feel better and hopefully make your kidneys work longer. Make sure to Google all your medications as well to make sure they are kidney friendly. Good luck.

[supermax30]

Hi,you are talking about kidney disease diet . Here are some healthy Foods for People with Kidney Disease.Red bell peppers. 1/2 cup serving red bell pepper = 1 mg sodium, 88 mg potassium, 10 mg phosphorus. ...

Cabbage. 1/2 cup serving green cabbage = 6 mg sodium, 60 mg potassium, 9 mg phosphorus.

Cauliflower. ...

Garlic. ...

Onions. ...

Apples. ...

Cranberries. ...

Blueberries.

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