New member, and so overwhelmed: Hello... - Kidney Disease

Kidney Disease
4,613 members2,017 posts

New member, and so overwhelmed

Whitetail66
Whitetail66

Hello everyone- Diagnosed with stage 3 chronic kidney disease (CKD- also have HBP), and am trying to figure out what to eat, along with what not to eat. I'm starting to believe that understanding quantum physics would be easier to do! I don't have access to a renal dietitian, which makes figuring things out a full time job. The last thing I want to do is eat anything that will further damage my kidneys. I'm glad I found this group. Thanks for accepting me.

25 Replies
oldestnewest

I am certain that no one here is allowed to give medical advice. However, I also have stage 3, and though all kidney patients are different, there are tons of kidney websites that can offer you assistance. I like Davita. There is tons of info, and recipes to help you along. I watch my sodium, phosphorus and protein intake. You must also consider however iron levels, and not too much calcium as heart disease is the major cause of death for CKD people. There are probably renal dietitian health coaches available online to assist you as well.

Hi and welcome to the community. If you are in the USA you might consider going to the davita.com website and registering for a free, 90-minute Kidney Smart class in your area. If you aren't in the USA you can go to kidneyschool.org and work through the learning modules there and learn what you can about CKD.

I'd also ask for a referral to meet with a nephrologist. When you have that appointment ask for a referral to meet with a renal dietitian. Bring your last years' worth of lab results with you and they will help you develop a kidney-friendly meal plan based on your individual needs and preferences. Having HBP will mean that you get that under control and cutting back on sodium will be a great first start. The RD will also be looking at your levels of protein, phosphorus, potassium, and calcium. You won't want to eliminate them from your diet but you will need to learn to adjust your meal plan based on your numbers.

I have HBP as well and with the help of a very good cardiologist, the correct medications at the proper doses, I have it under control.

If you go to the drugs.com website you can register for a free account. You can enter your medications and see if any of them negatively impact with each other or are a problem with your CKD. You can also sign up for free newsletters that will alert you to medicine recalls and health issues to keep you worry-free.

Putting together a Care Team of physicians that will provide you excellent medical advice and accept your final decision on treatment. Based on what you mentioned, your Care Team should include your PCP, cardiologist, nephrologist and any other physicians you see. Keep in mind that the most important member of your Care Team is you. If you are married, then your spouse should also be on that team. Best of luck.

Putting together a care team sounds like a great idea. I have been seeing a nephrologist, but I will talk to my PCP about a cardiologist. Never came up. Would they be the one to dial my blood pressure medicine in? I have recently started keeping track of my blood pressure, and it is on the high side. I don't believe that I ever heard the words 'chronic kidney disease' from either my PCP or my nephrologist. My nephrologist just talked about my creatinine level, and kidney function. He doesn't seem as concerned as he should be. Never explained that once my kidney function is gone, I can't recover it. I'm disappointed in myself, because I'm usually more proactive, and feel I dropped the ball on this one. The only reason I'm here, and trying to get to see a renal dietitian, is due to my research, and not from a doctor's recommendation. I just took the Davita class last week, but without seeing a renal dietitian, and with high blood pressure, I'm struggling to find things to eat. Also, trying to adjust from eating what I wanted, to eating to save my remaining kidney function/health.

As the point person of my care team, I make sure that the lab results from one doctor are shared with other doctors on the team. When my PCP runs labs they also send them to my Nephrologist, Cardiologist, and vice-versa. If one of my other physicians needs some results, I send them a copy.

As far as what to eat you can look at the recipes on the DaVita site and make any adjustments until you see the RD. Avoid any extra sodium until then. Also, avoid processed foods, red meats, fast food, and empty calorie snacks. Hang in there as it will get better.

Thanks. One thing my nephrologist told me that I didn't have to worry about phosphorous intake at my stage (stage 3, GFR 39). That wouldn't happen until later stages. But from what I have seen so far, wouldn't I still want to limit my intake now? He just said to 'eat healthy', which is such a huge blanket statement, that could mean a myriad of different things. I'm doing what you have suggested already, so I will continue to research and eat as well as I can until I get answers. My diet has already vastly improved in the past couple weeks. I needed to lose about 30 pounds, and have already dropped 7 in the last week. Thanks again-

If you begin to control your phosphorus now you shouldn't have a problem later. My phosphorus and potassium labs have been consistently low because I watch it for all meals. Keep up the hard work, it will pay off in the long run

If you discontinue eating processed foods you’ll be in good shape on phosphorous at this stage. Many cold cereals contain a lot of phosphorous. So I stopped eating cold cereals as soon as I was diagnosed with Stage IIIA CKD. Other processed foods should also be omitted from your diet. I do still eat steel cut oatmeal. I’m now in Stage V. But renal dietitians have changed their minds about whether we should cut oatmeal out of our diets due to its phosphorous level; newer research suggests that it’s actually okey and doesn’t elevate phosphorous levels as much as was earlier thought.

But you should ask your nephrologist for guidance with all of this. In addition to whether you have any dietary restrictions you should also seek guidance on fluid intake. I shifted to drinking water only immediately. So the issue was how much water I should drink each day.? In my case I was told to drink quite a lot of water daily while I was Stage IIIA.

All of this information should come directly from your nephrologist. If you don’t need to limit certain nutrients like potassium then you shouldn’t restrict them in your diet—it could actually be harmful for you to do so. This is very specific to your labs. And it will change as your CKD progresses. This gets pretty complex. So work closely with your nephrologist. And seek a referral to a renal dietician fir additional support.

Jayhawker

lowraind
lowraind in reply to Jayhawker

"All of this information should come directly from your nephrologist." Yes, it should, but it often does not. Due to two nephrologists not really having a clue, I have done my own research, and have learned what I should and should not eat and have improved my egfr about 20 points, from 34.4 to, at one point, 61.2. (I have slacked off a little, but am getting back on track). My opinion is the less they tell us, the more money they make when we are looking at dialysis and/or transplant.

Whitetail66
Whitetail66 in reply to lowraind

'Yes, it should, but it often does not.' Boy, you hit the nail on the head! My nephrologist has been absolutely useless with being informative with diet. His statement of 'eat healthy' is all he said, and is about as vague as one can get. I am trying to be referred to a renal dietitian, but it sounds like insurance will only cover one at end stage CKD (go figure!). I may be on my own in trying to figure out a diet.

I may also get a new nephrologist. Maybe I'll just go to school to become a renal dietitian. :-).

If you don't mind me asking, can you give me a general idea of what you did to improve your numbers? I know I will need to figure my specific plan, but just getting an idea will help. I have cut down to drinking just filtered water 95% of the time(Sometimes with crystal light mixed in, which the dietitian at Davita's class said would be fine.), and have skim milk with my once a week oatmeal. I am drinking 2 quarts a day. I do have a cup of decaffeinated coffe each morning, but am considering cutting that out too. Do you ( or anyone here) know of a really good app that I can use to track my food/nutritional intake, aside from the Davita one? I want to put one on my phone. Thanks-

lowraind
lowraind in reply to Whitetail66

I have read a lot and researched a lot. The two books that helped me most were: Living with Chronic Kidney Disease -Pre-Dialysis and Create Your Own Kidney Diet Plan both by Mathea Ford. The first is a very general introduction and the second helps you set up a plan and helps you track consumption. I got them both at Amazon and found them very helpful.

Other things I have done:

--no chocolate--very hard for me

--no o.j. or oranges

--no tomatoes--that is one area I have slacked off on and it showed when my egfr

went from 61.2 to 53.9, over the past five months.

--no dairy--here too, I have cheated a little with cheese.

--no alcohol

--no pop/soda--don't know what you call it where you live

--no winter squash except for spaghetti squash

--no potatoes

I found this and I am not sure where:

Avoiding Certain Foods

1. Manage your sodium intake carefully. Sodium, more commonly known as salt, can be very damaging if you have kidney failure. It's vital you trim down on your sodium intake throughout the day. Cutting down on salt will cause less fluid retention in your body, and also help control blood pressure, all of which can help improve kidney disease.[6]

•Buy foods with labels that read "no salt added," "sodium-free," or "low-sodium."

•Check product labels to see how much sodium a food contains. Go for foods with less than 100mg of sodium per serving.

•Do not use when you're cooking and don’t add salt to your food. If you have a salt shaker, remove it from the table altogether to avoid the temptation to salt your food during meals. Avoid salt substitutes as well unless your doctor or dietitian has said it is okay.

•Avoid salty foods like pretzels, potato chips, popcorn, bacon, deli meats, hot dogs, cured meats, and canned meats and fish.

•Steer clear of foods that contain MSG.

•Cut back on how often you eat out. Foods in restaurants often contain more sodium than foods you prepare at home.

2. Limit your phosphorus intake. Phosphorus levels in your blood should remain low if you have chronic kidney disease. Dairy products, like milk and cheese, are generally high in phosphorus. It's best to cut back on dairy if you're struggling with chronic kidney disease.[7]

•When it comes to dairy foods, stick with your diet plan and do not exceed the recommended number of servings per day. You can also stick to low phosphorous dairy choices. Go for cream cheese, ricotta cheese, margarine, butter, heavy cream, sherbet, brie cheese, and whipped toppings that do not contain dairy.

•As you need calcium for strong bones, talk to your doctor about calcium supplements. Many people who have chronic kidney disease need to take calcium supplements for their health and well-being.

•You should also limit your intake of nuts, peanut butter, seeds, lentils, beans, organ meats, sardines, and cured meats such as sausages, bologna, and hot dogs.

•Avoid drinking colas and soft drinks with phosphate or phosphoric acid in them.

•Steer clear of bran breads and bran cereals as well.

3. Stay away from fried foods. Fried foods should be avoided if you have kidney disease. Frying foods adds a lot of unnecessary calories and fat to your diet.[8]

•When you're eating out, stay away from deep fried foods on the menu. Ask the waiter or waitress about altering items. For example, see if you can substitute a grilled chicken breast for a fried one on a sandwich.

•At family get togethers, like holidays, stay away from fried foods. Opt for vegetables and fruits over things like fried chicken.

•When cooking meals at home, do not fry your foods. If you have a deep-fryer, it may be best to give it away.

4. Check with your doctor to see if alcohol is okay in moderation. Alcohol can take a great toll on the kidneys. If your kidneys are already compromised, drinking to excess is not recommended. If your kidney disease is advanced enough, you may not be able to drink alcohol at all. Some people with kidney disease can have one drink on occasion. However, you should talk to your doctor to get precise recommendations about how much alcohol is safe for you.[9]

•If your doctor says it is okay to drink, then make sure you do not exceed one drink per day and count it as part of your fluid intake for the day.

•Ask that friends and family members do not drink around you at social events. If you know a social event will involve drinking, try sitting that event out or asking a friend or family member to refrain from drinking with you.

•If you struggle to give up alcohol, talk to a therapist about how to quit drinking. You can also seek out the support of groups like Alcoholics Anonymous if you believe you have a drinking problem.

5. Find ways to manage thirst. You may not have to limit your fluid intake early on, but many people have to cut down on fluid consumption in the later stages of kidney disease. If you are on dialysis, fluid can build up in the body between sessions. Your doctor may want you to stick within a certain range of fluids throughout the day. Look into ways to manage your thirst without drinking too much liquid.[10]

•Drink from smaller glasses during meals. If you're at a restaurant, turn your cup over when you're done drinking. This will let your server know not to refill your cup, allowing you to avoid the temptation of drinking too much water.

•You can try freezing fruit juices in ice trays. You can suck on these juices like popsicles, allowing you to alleviate your thirst slowly. Just make sure to count these popsicles towards your total fluid intake for the day.

•If you need to limit your fluids, try using a pitcher to track the amount of fluid you are allowed to drink per day. Fill the pitcher with water and only drink from the pitcher throughout the day. If you have something else that counts as a fluid, such as coffee, milk, jello, or ice cream, then pour out the amount of water equal to what you consumed. Make sure to count fluids from canned fruit, canned vegetables, soups, and any other sources as well.

I have searched for any help I can find (I have a 48 page document on my computer, just of articles I have found regarding what I should and what I shouldn't eat). I add to the list as I find information.

I also tried to get referred to a renal dietitian and after much following up on my dr.'s office, I ended up getting referred to a dietitian, unfortunately, it was a diabetes dietitian. I actually knew more about what I could and could not eat than she did. So, I explored on my own.

Hope all of this helps!

Whitetail66
Whitetail66 in reply to lowraind

Thank you so much for the in-depth answer. Much appreciated. I will continue to research, and talk to my doctors. I will figure this out, one way or another. I have no choice. On the bright side, with my new diet, I will shed those extra pounds I've been wanting to, but haven't had the willpower to do. I have no choice but to find the willpower, if I want to get back to feeling like myself again.

cafelover
cafelover in reply to lowraind

Could you give me an idea of what your diet looks like? You've got my interest! I changed my whole diet to plants and grains and just water in my GFR went up I was only doing it for 3 weeks though maybe that's why?

lowraind
lowraind in reply to cafelover

I have read a lot and researched a lot. The two books that helped me most were: Living with Chronic Kidney Disease -Pre-Dialysis and Create Your Own Kidney Diet Plan both by Mathea Ford. The first is a very general introduction and the second helps you set up a plan and helps you track consumption. I got them both at Amazon and found them very helpful.

Other things I have done:

--no chocolate--very hard for me

--no o.j. or oranges

--no tomatoes--that is one area I have slacked off on and it showed when my egfr

went from 61.2 to 53.9, over the past five months.

--no dairy--here too, I have cheated a little with cheese.

--no alcohol

--no pop/soda--don't know what you call it where you live

--no winter squash except for spaghetti squash

--no potatoes

I found this and I am not sure where:

Avoiding Certain Foods

1. Manage your sodium intake carefully. Sodium, more commonly known as salt, can be very damaging if you have kidney failure. It's vital you trim down on your sodium intake throughout the day. Cutting down on salt will cause less fluid retention in your body, and also help control blood pressure, all of which can help improve kidney disease.[6]

•Buy foods with labels that read "no salt added," "sodium-free," or "low-sodium."

•Check product labels to see how much sodium a food contains. Go for foods with less than 100mg of sodium per serving.

•Do not use when you're cooking and don’t add salt to your food. If you have a salt shaker, remove it from the table altogether to avoid the temptation to salt your food during meals. Avoid salt substitutes as well unless your doctor or dietitian has said it is okay.

•Avoid salty foods like pretzels, potato chips, popcorn, bacon, deli meats, hot dogs, cured meats, and canned meats and fish.

•Steer clear of foods that contain MSG.

•Cut back on how often you eat out. Foods in restaurants often contain more sodium than foods you prepare at home.

2. Limit your phosphorus intake. Phosphorus levels in your blood should remain low if you have chronic kidney disease. Dairy products, like milk and cheese, are generally high in phosphorus. It's best to cut back on dairy if you're struggling with chronic kidney disease.[7]

•When it comes to dairy foods, stick with your diet plan and do not exceed the recommended number of servings per day. You can also stick to low phosphorous dairy choices. Go for cream cheese, ricotta cheese, margarine, butter, heavy cream, sherbet, brie cheese, and whipped toppings that do not contain dairy.

•As you need calcium for strong bones, talk to your doctor about calcium supplements. Many people who have chronic kidney disease need to take calcium supplements for their health and well-being.

•You should also limit your intake of nuts, peanut butter, seeds, lentils, beans, organ meats, sardines, and cured meats such as sausages, bologna, and hot dogs.

•Avoid drinking colas and soft drinks with phosphate or phosphoric acid in them.

•Steer clear of bran breads and bran cereals as well.

3. Stay away from fried foods. Fried foods should be avoided if you have kidney disease. Frying foods adds a lot of unnecessary calories and fat to your diet.[8]

•When you're eating out, stay away from deep fried foods on the menu. Ask the waiter or waitress about altering items. For example, see if you can substitute a grilled chicken breast for a fried one on a sandwich.

•At family get togethers, like holidays, stay away from fried foods. Opt for vegetables and fruits over things like fried chicken.

•When cooking meals at home, do not fry your foods. If you have a deep-fryer, it may be best to give it away.

4. Check with your doctor to see if alcohol is okay in moderation. Alcohol can take a great toll on the kidneys. If your kidneys are already compromised, drinking to excess is not recommended. If your kidney disease is advanced enough, you may not be able to drink alcohol at all. Some people with kidney disease can have one drink on occasion. However, you should talk to your doctor to get precise recommendations about how much alcohol is safe for you.[9]

•If your doctor says it is okay to drink, then make sure you do not exceed one drink per day and count it as part of your fluid intake for the day.

•Ask that friends and family members do not drink around you at social events. If you know a social event will involve drinking, try sitting that event out or asking a friend or family member to refrain from drinking with you.

•If you struggle to give up alcohol, talk to a therapist about how to quit drinking. You can also seek out the support of groups like Alcoholics Anonymous if you believe you have a drinking problem.

5. Find ways to manage thirst. You may not have to limit your fluid intake early on, but many people have to cut down on fluid consumption in the later stages of kidney disease. If you are on dialysis, fluid can build up in the body between sessions. Your doctor may want you to stick within a certain range of fluids throughout the day. Look into ways to manage your thirst without drinking too much liquid.[10]

•Drink from smaller glasses during meals. If you're at a restaurant, turn your cup over when you're done drinking. This will let your server know not to refill your cup, allowing you to avoid the temptation of drinking too much water.

•You can try freezing fruit juices in ice trays. You can suck on these juices like popsicles, allowing you to alleviate your thirst slowly. Just make sure to count these popsicles towards your total fluid intake for the day.

•If you need to limit your fluids, try using a pitcher to track the amount of fluid you are allowed to drink per day. Fill the pitcher with water and only drink from the pitcher throughout the day. If you have something else that counts as a fluid, such as coffee, milk, jello, or ice cream, then pour out the amount of water equal to what you consumed. Make sure to count fluids from canned fruit, canned vegetables, soups, and any other sources as well.

I have searched for any help I can find (I have a 48 page document on my computer, just of articles I have found regarding what I should and what I shouldn't eat). I add to the list as I find information.

I also tried to get referred to a renal dietitian and after much following up on my dr.'s office, I ended up getting referred to a dietitian, unfortunately, it was a diabetes dietitian. I actually knew more about what I could and could not eat than she did. So, I explored on my own.

Hope all of this helps!

cafelover
cafelover in reply to lowraind

Thank you so much that was very helpful and thank you for taking the time!

Dixidude39
Dixidude39 in reply to Jayhawker

Jayhawker ... what's your take on FIBER ONE with strawberries? Believe this is a fairly new version of FIBER ONE. The label states that its principal ingredient is steel-cut oats. Yes, it is a cold cereal. Sure tastes great with sugar-free almond milk.

Dixidude39
Dixidude39 in reply to Mr_Kidney

Mr._Kidney: Even though I have participated in DaVita's "Kidney Smart" seminars 3 times, I went to the Kidney School audio book series, and listened to the intro. I'll return to this site to listen to other lessons. Thanks! Now on to drugs.com for a drug check-up. Thanks, again.

Welcome to the group. If your BP is high you need to get that taken care of first. I am Stage 3 (43gfr) Drink plenty of water, Your Kidney Dr can tell you how much protein per day you can have. Try to eat a plant based diet , usually I have chicken or fish just 1 meal per day. So half your plate should have veggie, then equal amounts of carbs and protein for the other half. Limit dairy, sugar,caffeine, alcohol. No added salt, no processed foods. Yes it's hard but you get used to it. On the plus side if you eat what you are suppose to it will make you feel better. Also you'll put less stress on your kidneys. If you search this feed you'll find plenty of info on diet. Just try and do the best you can and try not to stress to much.

Whitetail66
Whitetail66 in reply to itzmich

Thanks for the response. I have made lowering my high blood pressure my main priority. One of the keys is with a healthy diet, which will go hand in hand with dealing with my CKD. I have cut out processed foods, drink at least two quarts of water, switched to one cup of decaf coffee, and eliminated salt from my diet. I used to eat/drink whatever I wanted, so this is why I am struggling with this. I will adjust in time, but it's difficult to figure out meals that actually taste good, and fall in the limits of what I can eat. Eating out seems like it will be impossible right now, but I know that in time, I will figure that out too. I do still shed a tear every now and then when I think of eating pizza. :-)

Oh my goodness you sound so much like me!! I know we can do this though I have no intentions of going on dialysis and I'm sure you feel the same way!If we can cure this thing by just changing our diet there ain't a pizza good enough out there to me if it means going on dialysis If I can ask what foods are keeping you going I'm struggling with taste making them taste good really a problem for me any suggestions on your part?

A piece of pizza every now and then is ok...enjoy. Eating out is pretty easy....order things without sauces. When in doubt a salad is good. I do lots of veggie plates. Chinese stir fry without sauce. You'll get the hang of it. It usually takes 6 months for your number to change so don't be discouraged. Sounds like you are off to a good start!

Whitetail66
Whitetail66 in reply to itzmich

If I cut the pizza in half. Does one half count as one slice? Please say yes!!! :-)

itzmich
itzmich in reply to Whitetail66

Yes 😉

cafelover
cafelover in reply to itzmich

So glad to hear that it takes more than just 3 weeks for the numbers to change I thought when I got my labs back a couple days ago after 3 weeks of eating total plant food no sodium and just water that my GFR was going to go down drastically instead it went up... Which made me very discouraged so I'm glad to hear that my expectations I think are too high at this point 😉

Hello Whitetail66,

Here in NW Arkansas we usually have an abundance of the whitetail but they are all scared right now as is gun season so they try to stay out of sight. I quite agree with your reference to Quantum Physics. I was introduced to that subject in college over 50 years ago and I'm still struggling with it. In that same 50 years I've been struggling with CKD also: I am 83 with Autosomal Dominant Polycystic Kidney Disease, now in 4th stage with a GFR of 23. It is an uphill battle all the way, knowing that I cannot win but only postpone the inevitable. During that postponement it is possible to still maintain a reasonably comfortable lifestyle, all the while upsetting those who run the dialysis clinics. Many years ago I gave up all usage of tobacco and alcohol and found out that the use was only "want to" and not "need to". That was followed by cutting way back on all red meats and a few months ago, going vegetarian, heading for vegan. I put that before my PCP and he agreed with that, adjusting some medication he felt was necessary. In all that time I have read many diets, some advocating really weird (to me) suggestions. One in particular always catches my eye and that is the one (s) that say it is okay to continue with red meats in varying amounts. To me that is like saying that small bullets won't hurt you. Well, that's up to you. As to your HBP, ask your doctor and he will probably tell you that higher than "normal" blood pressure goes along with CKD. Mine did and prescribed some medication for it and I deal with it. I also have a new (2 years ago) heart valve and 4 stents and a very distended abdomen because of kidney cysts. Continue to read and be informed and be wary of all those who make their livelihood off of other's misfortune. Stay in touch and let me know how it goes.

I have stage 3 ckd and enjoyed this detailed video. Lots of info.

Hope it helps. :)

youtube.com/watch?v=W0OmgjN...

You may also like...