Want to hear from others who have Stage 4 Chronic Kidney Disease (CKD)

Posted by anet @anet, Oct 21, 2019

My husband who is 75 is in stage 4 kidney disease according to his gfr. His last Gfr was 27. That sounds terrible to me, but his nephrologist says he is stable. He is not diabetic. His creatinine is 3.2, albumin 4.1. Phosphorus, sodium, calcium, potassium are all normal. His blood pressure is controlled by medication. He exercises by walking one and a half miles every day. He has two heart stents and takes cholesterol medicine. He has shortness of breath on occasion, but still does all of his normal activities like light yard work, fishing, dining out, going to church activities. I do think he sits too much, but try not to nag. He is not good about eating healthy, but is getting better. Maybe I am just worrying too much. Would like to hear from others in this stage of kidney disease.

@billagreste

You are too young to know Rosanne Rosannadanna! 🙂

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I’m almost too old to know her. I used to watch SNL in the 1970s when my daughter was a young teen.

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@billagreste, @darlingtondoll, @colleenyoung, @fiesty76, and everyone else, I can't find my earlier post about blueberries, cranberries, etc, so just in case it really went down the rabbit hole I am reposting what I found out during my research for my renal cookbooks. Please forgive me if my first post actually is here somewhere and I'm repeating myself, repeating myself, repeating myself. . .

Blueberries are a good antioxidant and are low in the minerals ailing kidneys struggle to filter, phosphorus, potassium, and sodium.

Cranberries, either as relish or juice or extract, are a natural diuretic and a mild renal anesthetic and cranberries are thought to kill harmful creepy crawlies in the urinary tract. ("Creepy crawlies" is a good scientific term, no?)

Green tea is nephro-protective, especially from free radicals.

Drinking water is thought to be good for CKD but forcing a lot of fluids also can damage kidney tissue.

Kidney tissue does NOT regenerate. A good renal diet, a healthier B/P, better controlled diabetes – all can take some of the burden from failing kidneys and slow down CKD progression but not "cure" kidney disease.

Any one of the herbs or fruits or plants listed on the supplement ingredients label could lower SERUM creatinine but according to the experts, this doesn't necessarily equal better renal function, it means creatinine has been diluted in the bloodstream and drinking a lot of water can lower creatinine in the urine. In other words, taking certain herbs or supplements actually can skew lab results so that they do not accurately depict what's really going on renally. (So can time of day of the blood draw, which lab does the assay, and what else is going on in your life at time of draw.)

Juniper is considered by some to be nephrotoxic. Personally, I quit using it. Even cinnamon or ginger can have an adverse effect if too much is used. Same with turmeric. And many of the ingredients in the supplements also occur naturally in other foods so be careful not to wind up ingesting too much of a good thing.

I am NOT saying don't take the supplement. I'm merely sharing what kidney.org, daVita, medscape, and the NIH have said. If it works for someone, go for it. Just do as Colleen Young suggests and be careful. Do check with nephrology experts before taking supplements.

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@kamama94

@billagreste, @darlingtondoll, @colleenyoung, @fiesty76, and everyone else, I can't find my earlier post about blueberries, cranberries, etc, so just in case it really went down the rabbit hole I am reposting what I found out during my research for my renal cookbooks. Please forgive me if my first post actually is here somewhere and I'm repeating myself, repeating myself, repeating myself. . .

Blueberries are a good antioxidant and are low in the minerals ailing kidneys struggle to filter, phosphorus, potassium, and sodium.

Cranberries, either as relish or juice or extract, are a natural diuretic and a mild renal anesthetic and cranberries are thought to kill harmful creepy crawlies in the urinary tract. ("Creepy crawlies" is a good scientific term, no?)

Green tea is nephro-protective, especially from free radicals.

Drinking water is thought to be good for CKD but forcing a lot of fluids also can damage kidney tissue.

Kidney tissue does NOT regenerate. A good renal diet, a healthier B/P, better controlled diabetes – all can take some of the burden from failing kidneys and slow down CKD progression but not "cure" kidney disease.

Any one of the herbs or fruits or plants listed on the supplement ingredients label could lower SERUM creatinine but according to the experts, this doesn't necessarily equal better renal function, it means creatinine has been diluted in the bloodstream and drinking a lot of water can lower creatinine in the urine. In other words, taking certain herbs or supplements actually can skew lab results so that they do not accurately depict what's really going on renally. (So can time of day of the blood draw, which lab does the assay, and what else is going on in your life at time of draw.)

Juniper is considered by some to be nephrotoxic. Personally, I quit using it. Even cinnamon or ginger can have an adverse effect if too much is used. Same with turmeric. And many of the ingredients in the supplements also occur naturally in other foods so be careful not to wind up ingesting too much of a good thing.

I am NOT saying don't take the supplement. I'm merely sharing what kidney.org, daVita, medscape, and the NIH have said. If it works for someone, go for it. Just do as Colleen Young suggests and be careful. Do check with nephrology experts before taking supplements.

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Thanks for your informative post, Kamama. I like to eat frozen fresh blueberries as a sweet treat…something like a popcicle but healthier! Smiles

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@kamama94

@billagreste, @darlingtondoll, @colleenyoung, @fiesty76, and everyone else, I can't find my earlier post about blueberries, cranberries, etc, so just in case it really went down the rabbit hole I am reposting what I found out during my research for my renal cookbooks. Please forgive me if my first post actually is here somewhere and I'm repeating myself, repeating myself, repeating myself. . .

Blueberries are a good antioxidant and are low in the minerals ailing kidneys struggle to filter, phosphorus, potassium, and sodium.

Cranberries, either as relish or juice or extract, are a natural diuretic and a mild renal anesthetic and cranberries are thought to kill harmful creepy crawlies in the urinary tract. ("Creepy crawlies" is a good scientific term, no?)

Green tea is nephro-protective, especially from free radicals.

Drinking water is thought to be good for CKD but forcing a lot of fluids also can damage kidney tissue.

Kidney tissue does NOT regenerate. A good renal diet, a healthier B/P, better controlled diabetes – all can take some of the burden from failing kidneys and slow down CKD progression but not "cure" kidney disease.

Any one of the herbs or fruits or plants listed on the supplement ingredients label could lower SERUM creatinine but according to the experts, this doesn't necessarily equal better renal function, it means creatinine has been diluted in the bloodstream and drinking a lot of water can lower creatinine in the urine. In other words, taking certain herbs or supplements actually can skew lab results so that they do not accurately depict what's really going on renally. (So can time of day of the blood draw, which lab does the assay, and what else is going on in your life at time of draw.)

Juniper is considered by some to be nephrotoxic. Personally, I quit using it. Even cinnamon or ginger can have an adverse effect if too much is used. Same with turmeric. And many of the ingredients in the supplements also occur naturally in other foods so be careful not to wind up ingesting too much of a good thing.

I am NOT saying don't take the supplement. I'm merely sharing what kidney.org, daVita, medscape, and the NIH have said. If it works for someone, go for it. Just do as Colleen Young suggests and be careful. Do check with nephrology experts before taking supplements.

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I can’t digest fresh fruits and vegetables. My intestines don’t work very well due to my paralysis, so I can no longer eat berries, which I love. I am severely limited by what I can digest. Even homemade soup is out. Almost everything I used to be able to eat pre-paralysis I can no longer digest.

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@fiesty76

Thanks for your informative post, Kamama. I like to eat frozen fresh blueberries as a sweet treat…something like a popcicle but healthier! Smiles

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@fiesty76, I love a version of blueberry ice cream – frozen blueberries mixed with a little non-dairy milk (almond or soy or coconut milk, a tad of sugar if needed, then refrozen. I thaw it a bit before sticking my spoon into this yummy concoction.

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@darlingtondoll

I can’t digest fresh fruits and vegetables. My intestines don’t work very well due to my paralysis, so I can no longer eat berries, which I love. I am severely limited by what I can digest. Even homemade soup is out. Almost everything I used to be able to eat pre-paralysis I can no longer digest.

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So regret that for you, Jane. Always humbling to learn what so many have to contend with. One thing's for sure: You make a grab-through-the-screen scrumptious looking choc. cake!!!!

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This sounds yummie, kamama! Will give it a try if i can stop munching on the frozen berries long enough.

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@fiesty76

So regret that for you, Jane. Always humbling to learn what so many have to contend with. One thing's for sure: You make a grab-through-the-screen scrumptious looking choc. cake!!!!

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I enjoy cooking and now I have too much time on my hands, so I look forward to cooking something special every day. Yesterday I made Shrimp Pad Thai. It was so good that my husband and I wanted t lick our plates clean. Today I will make a Boeuf Bourguignon (French beef stew). I don’t miss going out to a restaurant. I would rather cook at home. That way I know exactly what ingredients are in the dinner. All my meals are kidney friendly. I usually have a nice glass of wine with my meal

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@jolinda

Just curious, how can you be sure the supplements are actually changing your kidney function and not just tricking the test into producing a false reading? Many supplement can alter test results dramatically. Vitamin C supplements sometimes produce false positives for blood in stool and Biotin can mask troponin levels in heart attack patients. It be great if there were a supplement that truly regenerated damaged kidney tissue. What ingredients do you think are helping?

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You made me wonder if you were possibly correct on the formula skewing my results. So I stopped taking it and retested after over a week. See the line of brown boxes? Before I was at the deepest brown color daily. As you can see, I am now lighter than the first level color, so I think the change is real. I'll try and explain this test when not pecking on a cell phone if anybody does not understand this urine test for creatinine levels in urine.

In short, see the beige box by my finger? Compare this to the line above as stages of creatinine clearance in urine. Lighter is better. I moved across the entire scale after about 12 years of pre stage 5 failure.

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I have a lot of abnormal readings

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Have you or anyone heard that baking soda helps CKD??

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@gfmf My nephrologist has had me on sodium bicarbonate pills for several years. I take two 650 mg pills with each meal. She says it slows the deterioration of the kidneys. Because it is basically baking soda, my insurance won't cover it. I have to pay around $20 for a 3 month supply. Something must be working because over the last 5 years my GFR has ranged anywhere from 10 to 20. Not on dialysis yet.

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