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Kidney Disease

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Hello I'm new here

TopazForests profile image
34 Replies

Hi! I'm new and wanted to introduce myself. I was diagnosed with Stage 3 Chronic Kidney Disease in January 2022. I am working with my primary care physician and also a renal dietician to change my eating habits to help slow (hopefully stop) the progress of CKD. Last May I started a Keto diet and through that brought my diabetes and blood pressure into better range and control. My A1C has been in the normal range since October. My doc has reduced my blood pressure meds twice. Now I need to change major parts of my diet. For the last 3 weeks, I have tried to stay in the low protein range and that left me hungry most of the time. I have added fruit and rice back to help. That means I'm no longer on Keto and my weight loss has stalled.

My other problem is I need a hip replacement. My left hip is bone on bone and I've worn a grove in one part that causes a clicking sound when I walk. Plus walking is painful. My ortho wants me to lose more weight but won't say how much or what he is looking for. Earlier this week he tried giving me nutritional advice that is in direct conflict with what my primary care doctor and dietician have said I need to manage my CKD. Now I'm looking for a new ortho.

I'm maried to a wonderfully supportive man and we have two daughters and one granddaughter. The oldest is married and lives two hours from us, she has a daughter that has just turned one year old. The youngest daughter lives with us while she attends a nearby university. She is finishing her junior year and is majoring in geology. I foster kittens and last December one of our foster kittens let us know that he wanted to stay with us. We adopted him at 7 weeks old in December and my husband is spoiling him rotten. The kitten will sit on a bar stool (or on the island) in the kitchen and talk to my husband while he cooks dinner. Totally adorable. My husband retired in October 2020 and we sold our older larger camper and bought a small "couples" camper. Perfect for two people (and hopefully 1 cat) and we plan on doing as much traveling as we can schedule. I went on disability after an injury in 2016 left me with mobility problems. I worked part time until the pandemic hit and my job disappeared. I decided not to return so I can travel with hubby.

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TopazForests
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34 Replies
Folklady profile image
Folklady

Nice to meet to TopazForest. We have many things in common. Stage 3, retired, cat owner, and motor home owner. (Heading to Orkney soon) so welcome to the group. How do you deal with the pain in your hip whith regards to which painkiller can you take?

TopazForests profile image
TopazForests in reply to Folklady

Pain meds are a problem for me as I am allergic to many pain meds. Right now I'm taking tylenol arthritis and using a lot of biofreeze. I love biofreeze. The pain management doc wants me to try a pain patch but it's not looking good for it to arrive before we leave on our trip.

ICE187 profile image
ICE187 in reply to TopazForests

Look into Real Time Pain Relief Maxx. Biofreeze is instant, but short lived in my experience. Real Time has Emu oils in it and gets absorbed into the tissue for a longer relief. It takes a little longer to start working vs Biofreeze. I used both for joint pains. One for instant relief and the other to get me through several days.

TopazForests profile image
TopazForests in reply to ICE187

Ice, I'll try the Real Time Pain Releif. I checked it out on Amazon but it wouldn't get here before we leave on our camping trip. Do you apply both biofreeze and Real Time at the same time? Or use biofreeze and about 10 minutes later use the Real Time Pain Relief?

ICE187 profile image
ICE187 in reply to TopazForests

It doesn't matter how you apply it. I've used biofreeze for instant relief and before the biofreeze wears off, I apply the Real Time. I have it down now to where I only need Real Time every few months. It was a multi time a day pain. Now I am pain free for a few months.

Emu oil is high in omega-3, omega 6, and omega-9 fatty acids. These help reduce inflammation, ease muscular pain, and arthritic joint pain.

Bassetmommer profile image
BassetmommerNKF Ambassador

HI topaz, Diets can be in such conflict with each other. You have to figure out in the long run what is the best for you. If you have CKD, the diet is very much similar to the dash diet for heart health and but can be in conflict with a diabetic diet. I know...I am living this. I went plant based over a year ago. I eat basically no meat, no chicken or fish and no eggs. I do indulge in cheese, like shredded cheese on my salad or Laughing Cow spread for sandwich. No other dairy. I am also diabetic and have lowered my A1c a lot to 5.8. My food consists of 70% carbs, but good carbs and I still was able to lower my a1c. The highest carb meal is my oatmeal with almond milk and flax seed. I eat pasta, and probably too much of that.

But like you, I need to lose weight. And although I did drop 50 pounds, the high carbs are being to affect my weight and I am gaining. So, I am going back to the renal dietician for advice. I have cut so much out of my diet that I am not sure what I am going to do.

But the result of plant base lowered my lipids down to a normal and the lowest level I have ever had in my life. So.... it's all a balancing act. I know I will stick with plant-based and low protein because my GFR went up and my creatinine went down. And that is my main focus.

TopazForests profile image
TopazForests in reply to Bassetmommer

The diets are confusing as one will be in conflict with another. I am supposed to be high sodium for my adrenal problem, and then low sodium for the kidney problem. For diabetes, the best diet is high protein and then for kidneys it is low protein. I think I have a good dietitian and she will help me figure this all out. I like meat so I don't want to go to an entirely plant based diet. Hopefully we can manage this without that. I'm trying to explain to my husband that I can no longer eat deli meat for sandwiches so I want to get a roterisserie chicken and slice the breast for sandwiches and use rest of it to make chicken salad. He is having trouble with the no deli meat. He said "can I still eat deli meat", I think he will learn that a slice of roterisserie chicken is better tasting than the turkey deli meat.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to TopazForests

Rotisserie chicken is high in sodium: 459 mg per 4 oz and high in fat 15 g or more. It isn't easy, is it? The best thing would be to you cook, especially grill, your own chicken and the prepare your sandwiches that way. Whenever I make something, I make double and freeze. I also make a huge batch of salad stuff. I wash lettuce, do not cut it up and I use leaf lettuce which I soak in water for an hour, and put it in a Tupperware cake holder. Then I cut up peppers, cukes, celery and put them in baggies. Instant salad. It makes fresh, crisp salad for three days at least

TopazForests profile image
TopazForests in reply to Bassetmommer

Well darn! I thought taking the skin off the rotiserrie chicken would make it OK. Rotiserrie chicken is my shortcut to making lots of chicken casseroles. We love chicken pot pie with fresh or frozen veggies and lots of other things. Guess I'll have to figure out how to roast a chicken without it being so dry.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to TopazForests

ah to cook a chicken without drying it out.... Here's a trick I use. Make sure the chicken is defrosted completely. Let the chicken get to room temp, as you really should with all roasts. I am saying maybe a 1/2 hour before, rinse the bird out good, and then let it dry. Season it well with your choice, I use basil, sage and black pepper. Put it is a deep roaster UPSIDE DOWN. I do this with turkeys too. All the dark meat and fat is on the bottom side of the bird and so you want that to flow down into the white meat so put it breast meat down. You may have to get a little creative with how you do that. You do not want the bird exposed to the air as much as possible. I put some water also in the bottom of the roaster. Then cook it thoroughly. I use a thermometer. Watch it and when the bird gets close to 165 take it out and cover it. The temp will rise a bit and finish the bird nicely. Let it rest for 15 minutes AT LEAST, which lets the juice stay in the bird and not out on your carving plate. If you eat chicken a lot, invest in a deep roaster and thermometer. Do not count on the little pop thingy. If that pops up, usually the chicken is overdone.

TopazForests profile image
TopazForests in reply to Bassetmommer

Thanks for that! I had seen the information on cooking a turkey upside down on Food Network and tried it one year and everything went beautifully. The next year, the things went south with the turkey and at the end when I was trying to flip the bird over, somehow it ended up on the counter sliding toward the edge. I just barely caught it before it went over. My daughter laughed at me and said "this is why I am a vegetarian." Brat. 😀

I hadn't thought to roast a chicken upside down, I will try it. I do have a deep roasting pan and several meat thermometers. Right now because I cannot stand for any length of time, my husband is doing most of the cooking,

Hawaiilover profile image
Hawaiilover in reply to Bassetmommer

That's great advice for moist chicken, I'll have to try this also.

drmind profile image
drmind in reply to TopazForests

(1) Oops be careful rotisserie probably has more salt than deli meat and that's why it tastes so good. Get the nutritional value of that chicken from the store where you buy it. I know Costco rotisserie chicken is loaded with salt. I googled it.

(2) most large grocery chains have at least one deli product that is listed as low salt. Publix here in the South has low sodium salt and chicken.

(3) why not buy your husband his own deli meat or is he salt restricted, too? I have no problem buying 1/4lb of regular deli meat for my son who lives with me. I've also have been at the dell counter when a customer ordered just 4 or 6 slices of something.

Its great that you're being proactive with your health. And, I agree these diets can be complicated. It's always best to diet to YOUR labs and not anybody else's. Best to you...

TopazForests profile image
TopazForests in reply to drmind

My husband and daughter have deli meat here all the time, I don't know why he thought he couldn't have it. He eats a lot of things that I don't since I'm on a modified keto diet and he isn't.

drmind profile image
drmind in reply to TopazForests

thanks for clarifying the info. I thought he wasn't eating any deli because you mentioned that you were slicing rotisserie chicken for your sandwiches. Best to you...enjoy the week

horsie63 profile image
horsie63 in reply to Bassetmommer

I tried plant based but just can't get enough calories, nutrients. I'm not diabetic or overweight, in fact I'm underweight right now. One of BP meds tends to raise potassium so a lot of the foods I'd like to eat are on a don't eat list. I go back to my kidney doc in Jun and will request a renal dietician as I don't have one yet. I'm at 22 GFR and would like to slow down the progression if I can.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to horsie63

Hi Horsie,Going to the dietician will be good. About potassium, unless it is elevated in your blood, and not everyone with CKD has that, you can still eat potassium foods by planning your day. If you know for dinner you want to eat zucchini or broccoli, make sure the rest of the day is lower. It takes planning but totally worth it.

For calories, add more plant (avocado, sesame, peanut, olive) oils to your meals. They add flavor along with the calories. Eat more carbs, pasta, breads and rice and the calories will pile on easily. Legumes, beans and lentils can be calorie bombs too. Nut butters are terrific for weight gain. Just make sure they are just nuts and not added sugar and junk. Natural from a health food store is great. Avocados, very fattening. I have to laugh because I have all the answers to gain weight and that is totally the opposite for me who needs to lose weight.

There are other BP meds, good for CKD, that are not potassium raising drugs. Talk with the doctor about that as well.

Hello TopazForests - my right kidney was removed 42 years ago. Over the years my kidney function deteriorated. I changed my lifestyle 4 years ago. I went completely whole food plant based. No animal products, no processed foods, no oil and no sugar. I also eat within an 8 hour window. My kidney function has gone from stage 3 to stage 2 and actually nearing stage 1.

Making lifestyle changes will definitely help. Whatever exercise that you can do will also help. Stay positive.

TopazForests profile image
TopazForests in reply to

H Sunrise, nice to meet you. It seems that a lot of people here have gone to a plant based, I hope it doesn't come to that. I was a vegetarian for several years when I was younger and while I stayed one it for 3 or 4 years, I missed meat. When I was on Keto, I really missed fruit. I'm hoping the dietitian and I can find a good balance. I printed out a list of 20 best foods for ckd patients. I like 19 of the 20, so hopefully that will help me stay in the healthy side of things.

orangecity41 profile image
orangecity41NKF Ambassador

Welcome to the forum where you will find support and information sharing. It is good you have much support on your Chronic Kidney Disease. I am a senior and was diagnosed at CKD 3b and put on prescribed diet and has been a big help to me. Here is a link to information on aging and kidney disease from National Kidney Foundation. kidney.org/news/monthly/wkd...

TopazForests profile image
TopazForests

We cut out most processed foods a while back. I am experimenting with using a combination of freeze dried and dehydrated items to make a "fast food dinner" I am experimenting with things like chicken tetrazinni and beef stroganoff. When we go on our camping trips and are exploring a new area, we often will arrive back at camp hungry, grumpy and tired. With the quick meals, we can have a healthy meal in 10 to 15 minutes.

Thanks for the information on aging and kidneys. My doctor has been watching my kidney function for a while before she diagnosed me with CKD. It was surprising to me that I could have no new symptoms and have a disease this serious.

shaun8 profile image
shaun8

Have as many carbs as you like. Have no fat. You will loose weight.The mixture of fats and sugars is what causes diabetes because fats block insulin receptor sites and the sugar can't be absorbed quicky like it is supposed to causing elevated blood sugars.

This should be common knowledge

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to shaun8

Shaun Curious where you got your information from? Can you elaborate on your comment, Please?

shaun8 profile image
shaun8 in reply to Bassetmommer

Yep, well I first read about this in a book called 80/10/10. I haven't got the book on me but this link is one of the first results on google: nutritionstudies.org/what-c...

Its why diabetics do so well on high fruit diets and why I can have 15 bananas in a smoothie because of the very low amount of fat in my diet. I have experimented with this myself with blood glucose machines; when I have more fat combined with sugar, my readings stay elevated for a prolonged period of time, however with no fat my blood sugar is perfect. I also found that fats can stay in the system for 2-3 days

shaun8 profile image
shaun8 in reply to Bassetmommer

'If you pour a thimble full of fat, a thimble full of olive oil, onto a swimming pool, it will coat the entire surface of the swimming pool, creating a barrier. It's a Please really good insulator. If you had a huge tube full of marbles and you poured in a little bit of oil and shook it up just a bit, that oil would coat every single marble, completely. It does the same thing to the cells inside the bloodstream. The fat starts functioning as a barrier as it coats itself around the insulin and coats itself around the sugar molecules, it makes it less effective for the insulin to find the sugar, for them to hook up. Now you've got a situation where there's sugar in the bloodstream but it's not getting out of the bloodstream. So the body produces a little bit more insulin. But the fat is blocking it. This is what's referred to as insulin resistance. It's actually not that the body is insulin resistant it's that there's too much fat in the bloodstream. Take away the fat and the insulin resistance goes away instantaneously, 100% of the time.'

PecanSandie profile image
PecanSandie

I feel bad that you are dropping your ortho for giving conflicting advice. Sometimes this happens and I find the best thing to do is discuss it with both of the doctors. Unless you really don't like your ortho...then by all means find a new one. I ran into this conflicting advice problem just yesterday - had to tell my nephro that my PCP insists that I take 500 mg of calcium supplement (and minimum another 500 mg from food). He doesn't want me to take calcium (just calcitriol). He took it well...and said if you have to just take some Tums (which apparently is calcium...lol).

As far as weight loss advice goes, that is kind of a sensitive since many people do not take to well to the notion of needing to lose weight. If I were you, I would go to the BMI chart - there is a range that you are supposed to be for your weight and height - and I would pick the weight right in the middle and make that your goal. Then go online and find a free food tracking program (I used myfitnesspal.com) and track every single thing that you eat.

Also, it might be better for both you and your husband if you do not try to drag him along for the ride (at least for lunches). My husband likes processed meat at lunch time (usually turkey) and I won't touch it with a 10 foot pole - we just like different things. I see no reason we have to eat the same thing for breakfast and lunch. Dinner is a different story - it's a shared meal - but I also try to give my husband more of whatever protein we are eating so I balance it that way. And we do have meatless meals a couple of times a week.

TopazForests profile image
TopazForests in reply to PecanSandie

Pecan, my ortho is a jerk and even with me saying that I needed to follow the advice of my other doctors, he kept telling me to go back on Keto and eat more protein. I kept saying I was following the advice of my primary care and dietitian. He wouldn't accept that. Plus he said he would not do the surgery on my hip and recommended I get a wheelchair to get around. I'm going to get a 2nd opinion.

PecanSandie profile image
PecanSandie in reply to TopazForests

Oh, he really is a jerk (and maybe a nut!) Definitely get rid of him and find someone who will actually help you.

Oregal profile image
Oregal

Hello, I was recently diagnosed with stage 3a ckd, which really blindsided me. I met with a nephrologist who didn’t seem too concerned and told me to limit protein to 60 grams per day and drink water when I’m thirsty (which implied limiting water). I then met with an RD who also didn’t have much advice other than to not panic. I was disappointed that both these medical people were not helpful in offering advice that was more proactive in slowing down the progression of ckd. I’ve been a long time user of MyFitnessPal so that’s helped me keep an eye on my protein, which I’d been eating a lot of before the diagnosis. Honestly I’ve learned more from this forum than from medical personnel. It sounds like you are on the right track and as I’m also learning how to manage this, the one thing I’ve found is to have plenty of fresh vegetables washed and cut up so you can grab something when hunger hits and use hummus as a protein source to dip the veggies in.. Hang in there, weight loss takes a lot of diligence and patience but don’t get discouraged.

TopazForests profile image
TopazForests in reply to Oregal

Hi Oregal, it's nice to meet you. I was also blindsided with the stage 3 CKD diagnosis and have been researching and reading a lot. As a retired educator, my first reaction to anything new is to learn as much as I can so I can make informed decisions.

19Willow62 profile image
19Willow62 in reply to TopazForests

Hi Topaz, welcome to a wonderful, supportive, caring site. Im relatively new myself and can sympathise with your struggles as i have multiple conflicting health conditions to.

My differing doctors cannot agree on the colour of the sky let alone my meds and dietary requirements. Im stage 4 occasionally slipping into 5,not stable. I have had several nephs as i have relocated from England to Scotland and was dismayed by the lackadaisical attitude of some with regard to stabilising or reversing the condition or improving GFR at all.

One neph told me outright that CKD is a degenerative disease and there's nothing you can do about that but learn to live with the impending consequences. Others are sceptical about the effects of diet or simply dont give any advice until you are stage 4 by which time you are in an uphill battle. Most wont even refer you to a dietitian unless you push for it. Its most disheartening but seems to be ubiquitous. Thats why im so glad you have found us as the advice and support information hear is so positive and upbeat, so full of hope and reassurance. Again, you are most welcome here. All good thoughts, Willow

19Willow62 profile image
19Willow62 in reply to 19Willow62

Ps, i am an avid cat lover, so loved your info regarding your fostering and new kitten, its true to say you don't choose a cat a cat chooses you. I know this is rather getting off topic but i couldn't help myself from commenting. Im a member of the Cat Protection Society, but as i now live in my sisters home, i am not allowed to have a pet so am a little envious of your fostering efforts. Sorry for the segway guys. Dogs have owners, cats have staff😻😂

Darlenia profile image
Darlenia

Hi TopazForests. Welcome to the site! I hope you find the community to be of value to you. Sadly, diabetes is one of the greatest contributors to organ failure, including kidney failure. My husband has gone through all stages of kidney disease - from early diagnosis to dialysis and now transplant. Diabetes has been the underlying cause for all of his medical issues. You see, over time, high blood glucose levels can damage the body's organs - by stiffening and scrubbing out blood vessels, leading to heart attack, stroke, kidney failure, blindness, amputations and more. In my heartfelt opinion, I urge you to keep your eyes on the glucose - the driver behind the carnage. Arguments for and against fats, carbs, and more rage on and on - all parties armed with studies supporting their particular cause. But, bottom line, it's the glucose. Find a diet, any diet, that lowers your weight and lowers glucose levels. If you qualify, stomach reduction surgery can vanquish diabetes very quickly. Whether through diet or surgery, your kidneys will halt their downward trajectory if you do this in time. As a case in point, my husband has a long family history of relatives going blind, dying from kidney failure, having neuropathy, and more. His mom, when confronted about her blood sugars, took action, lost weight, and never needed to go on any diabetic meds. She lived well into her 80s. Her son, my hubby, didn't bother and coasted along, relying on doctors' visits and prescriptions to keep himself on track. That wasn't enough - he was passive and he paid the price. Try to avoid this at all costs. Your body will love and reward you for taking action. Wishing you all the best in achieving your goals.

TopazForests profile image
TopazForests

Darienia, I'm sorry about your husband not trying to keep his diabetes in control and all the side effects.

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