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.

Liked by billagreste

@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.

Jump to this post

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.

Liked by billagreste

REPLY
@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

Jump to this post

@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.

REPLY
@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.

Jump to this post

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!!!!

Liked by billagreste

REPLY

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

REPLY
@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!!!!

Jump to this post

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

REPLY
@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?

Jump to this post

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.

IMG_20200411_221721

REPLY

I have a lot of abnormal readings

D072EA07-FF4A-423A-BBF8-E717CD174AFC

REPLY

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

REPLY

@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.

REPLY
@gfmf

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

Jump to this post

Baking Soda is extremely high in sodium. While in kidney failure my blood pressure was always high and I was put on a low sodium diet. For me baking soda prior to transplant would have been very dangerous. Everyone is different so I would say it's best to consult with your Nephrologist and discuss the risks and benefits. E-consults are so easy you may hear back in a day.

REPLY
@billagreste

Okay, so I don't know if my post will get deleted because it does not follow conventional wisdom and my specialist didn't even ask me how the hell this happened, but….

I have stage 4 (late) failure at 22GFR. I've had kidney failure progressing over the last 10 years from damage to my kidney from Vasculitis and inflammation. My doctor set me up to get prepared to be a dialysis patient and to get on the transplant list once I lost 2 more digits on my function. He told me he believed this level of non function was my new normal and to prepare for the stage 5.

I figured what have I got to lose at this point, so I followed everything they told me about salt, potassium and which foods to avoid. I also went shopping for a herbal kidney supplement and started taking this supplement along with eating a full bowl of blueberries every night. I did this every day for 2 months and even bought some creatine test strips just for the heck of it. After about 7 weeks I tested my urine and found I was on the last color of 4 colors of kidney failure advancement. But I kept up the routine and eventually a few tests I was on the 3rd color (with color 1 being normal). I took it as a good sign but it was time for my checkup and I did my blood work, went to the doctor and he talked to me more about our plan for eventual dialysis. Then he looked at my record and said "Oh, by the way, your kidney creatine level went back to 2.2 from my 3+ recent readings. This means I went back to my 2014 readings (6 years ago). He didn't make much of a deal about it but told me I was back at early stage 3 now with this test. I don't think he believes I got a good test because he wasn't that excited. But I am… The home test I have since moved from the 4h block (the worst reading) to the first block (normal). I had my wife do the test and compared the sticks and we are the same color. Her kidneys are in perfect health.

Were is this leading? I think it's leading to me finding out I'm out of level 3 and closer to level 1 or 2. I could be even better but who can rely completely on a home test strip. Now what is happening to me defies everything we know about kidney failure and the progression to stage 5. Am I getting a miracle? I'll have to wait for my next checkup to know but the home test strips show me at totally normal function right now.

I'll tell you I've prayed and prayed for a cure and it didn't seem to help. This past Chistmas in church we exchanged cards with a prayer need and on my card I asked for Kidney health. I then did my regiment of taking a supplement called Premium Kidney Cleanse Supplement by Sunergetic (on amazon) and I eat that full soup bowl size serving of blueberries every night. The blueberries are not a snack, it's a bowl full. Between my prayer request, this suppliment and this supplement I truly believe I'm headed in a different direction with my kidneys. Prayer is answered but not always in some magical burst of light through the clouds. I think God answered my prayers and set me on this path that is healing my kidneys. I also take Turmeric Curcumin, Cinnamon (these block inflammation), OmegaIII, Resveratrol (alleged to activate your longevity gene), and COQ10 every AM with Cinnamon Toast. I also take 500MG of Niacin which produces a very unpleasant flush sensation. The flush is blood that runs through your tiny veins that gives your body a light headed heat rush and it's no fun, but the kidneys are about blood, yes? I can't tell any of you if this .. any of it, is changing me but think it is! The herbal supplement I take has hundreds of reviews of people that claim it improved their kidney function. I took it to be a lie… but now I'm not thinking it's a lie.

We all suffer some kind of base for our failure and maybe mine is different than yours. But I was told there was no chance of getting better. At this moment that seems untrue. If anyone would like to follow up with me, This is my real name and you can find me on Facebook. Send me a friend request. I know first hand what you folks are feeling. I see some hope now.

Jump to this post

Thank you so much for your sharing of supplements. Will try asap. Have you heard of baking soda as being helpful?

Liked by billagreste

REPLY
@gfmf

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

Jump to this post

There is research it helps clear creatinine. You must watch your sodium!

REPLY
@darlingtondoll

I have a lot of abnormal readings

Jump to this post

Jane, how have you been progressing (improving) since starting the kidney suppliments?

REPLY
@billagreste

Jane, how have you been progressing (improving) since starting the kidney suppliments?

Jump to this post

So far so good. I plan to stay in Stage 2!

REPLY
@billagreste

Okay, so I don't know if my post will get deleted because it does not follow conventional wisdom and my specialist didn't even ask me how the hell this happened, but….

I have stage 4 (late) failure at 22GFR. I've had kidney failure progressing over the last 10 years from damage to my kidney from Vasculitis and inflammation. My doctor set me up to get prepared to be a dialysis patient and to get on the transplant list once I lost 2 more digits on my function. He told me he believed this level of non function was my new normal and to prepare for the stage 5.

I figured what have I got to lose at this point, so I followed everything they told me about salt, potassium and which foods to avoid. I also went shopping for a herbal kidney supplement and started taking this supplement along with eating a full bowl of blueberries every night. I did this every day for 2 months and even bought some creatine test strips just for the heck of it. After about 7 weeks I tested my urine and found I was on the last color of 4 colors of kidney failure advancement. But I kept up the routine and eventually a few tests I was on the 3rd color (with color 1 being normal). I took it as a good sign but it was time for my checkup and I did my blood work, went to the doctor and he talked to me more about our plan for eventual dialysis. Then he looked at my record and said "Oh, by the way, your kidney creatine level went back to 2.2 from my 3+ recent readings. This means I went back to my 2014 readings (6 years ago). He didn't make much of a deal about it but told me I was back at early stage 3 now with this test. I don't think he believes I got a good test because he wasn't that excited. But I am… The home test I have since moved from the 4h block (the worst reading) to the first block (normal). I had my wife do the test and compared the sticks and we are the same color. Her kidneys are in perfect health.

Were is this leading? I think it's leading to me finding out I'm out of level 3 and closer to level 1 or 2. I could be even better but who can rely completely on a home test strip. Now what is happening to me defies everything we know about kidney failure and the progression to stage 5. Am I getting a miracle? I'll have to wait for my next checkup to know but the home test strips show me at totally normal function right now.

I'll tell you I've prayed and prayed for a cure and it didn't seem to help. This past Chistmas in church we exchanged cards with a prayer need and on my card I asked for Kidney health. I then did my regiment of taking a supplement called Premium Kidney Cleanse Supplement by Sunergetic (on amazon) and I eat that full soup bowl size serving of blueberries every night. The blueberries are not a snack, it's a bowl full. Between my prayer request, this suppliment and this supplement I truly believe I'm headed in a different direction with my kidneys. Prayer is answered but not always in some magical burst of light through the clouds. I think God answered my prayers and set me on this path that is healing my kidneys. I also take Turmeric Curcumin, Cinnamon (these block inflammation), OmegaIII, Resveratrol (alleged to activate your longevity gene), and COQ10 every AM with Cinnamon Toast. I also take 500MG of Niacin which produces a very unpleasant flush sensation. The flush is blood that runs through your tiny veins that gives your body a light headed heat rush and it's no fun, but the kidneys are about blood, yes? I can't tell any of you if this .. any of it, is changing me but think it is! The herbal supplement I take has hundreds of reviews of people that claim it improved their kidney function. I took it to be a lie… but now I'm not thinking it's a lie.

We all suffer some kind of base for our failure and maybe mine is different than yours. But I was told there was no chance of getting better. At this moment that seems untrue. If anyone would like to follow up with me, This is my real name and you can find me on Facebook. Send me a friend request. I know first hand what you folks are feeling. I see some hope now.

Jump to this post

Thanks For That Very Interesting Post…

Liked by billagreste

REPLY
Please login or register to post a reply.