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.

Interested in more discussions like this? Go to the Kidney & Bladder Support Group.

@billagreste

Don't forget to post your post Doctor report.

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My doctor called and he has cancelled all office appointments because of the Covid 19 virus. I got the lab results via a telephone call. I will ask to have the results sent to my home next week when he calls me again.

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Jane,. Your labs are almost always available online. Mine I can get from "MyChart", but you'll need to research your access.

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Hi everyone,
When considering complementary or taking supplements, be open-minded yet skeptical. Learn about the potential benefits and risks from credible, evidence-based sources. Here is an article from Mayo Clinic about evaluating claims made by the producers and/or sellers of supplements, natural products and other alternative medicines. http://mayocl.in/2tGC0Jp

Reading reviews from commercial sites like the product's own website or Amazon are not reliable. Companies can pay to have positive reviews posted. Before trying any supplement, I search the National Center for Complementary and Integrative Health's website. Here is what I found:
- Before You Try a Kidney Cleanse https://www.verywellhealth.com/kidney-cleanse-89121
You can also use the NCCIH website to look up the evidence for the individual ingredients in a supplement.

Here's another article that may interest you.
- “Detoxes” and “Cleanses”: What You Need To Know https://www.nccih.nih.gov/health/detoxes-and-cleanses-what-you-need-to-know

Please note that supplements are not reviewed or regulated by the FDA. Always let your provider know if you plan to or are taking any supplements.

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@darlingtondoll

As Gilda Radner aka Rosanne Rosannadana used to say, “It’s always something “

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You are too young to know Rosanne Rosannadanna! 🙂

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Some experts advise against taking juniper as it is thought to be nephrotoxic. I stopped using it for that reason.

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@billagreste

Jane,. Your labs are almost always available online. Mine I can get from "MyChart", but you'll need to research your access.

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Only my urine labs are available right now.

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@colleenyoung

Hi everyone,
When considering complementary or taking supplements, be open-minded yet skeptical. Learn about the potential benefits and risks from credible, evidence-based sources. Here is an article from Mayo Clinic about evaluating claims made by the producers and/or sellers of supplements, natural products and other alternative medicines. http://mayocl.in/2tGC0Jp

Reading reviews from commercial sites like the product's own website or Amazon are not reliable. Companies can pay to have positive reviews posted. Before trying any supplement, I search the National Center for Complementary and Integrative Health's website. Here is what I found:
- Before You Try a Kidney Cleanse https://www.verywellhealth.com/kidney-cleanse-89121
You can also use the NCCIH website to look up the evidence for the individual ingredients in a supplement.

Here's another article that may interest you.
- “Detoxes” and “Cleanses”: What You Need To Know https://www.nccih.nih.gov/health/detoxes-and-cleanses-what-you-need-to-know

Please note that supplements are not reviewed or regulated by the FDA. Always let your provider know if you plan to or are taking any supplements.

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Colleen, Good point! I generally ignore claims by suppliment suppliers. What I do take is from actual research, not claims. It does work for me. The kidney suppliment was a guess however. There was no conclusive research leading me to it other than prayer. I just started looking and with a sense of doubt started reading testimony after testimony of folks swearing it worked. I had talked to a herbalist also that wanted a fortune but claimed he could help me. My own skeptical side is why I decided to look at the kidney suppliments first. Anyhow, my belief is prayer lead to these events that have me doing the things I needed to do for a positive turn away from dialysis. I suppose we may know more if others here try it.

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@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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