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

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?

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...

REPLY
@darlingtondoll

I have a lot of abnormal readings

Jump to this post

@australia This is the latest test

REPLY

Hi Janet from Georgia in Australia. Nephrologist like to use the word "stable". That is a good sign. If he has not told you, it means that --whatever the level of filtration your kidneys are doing --- it is not acting in a way at present that is of concern. The way it is working may not be 100% good according to the 27 eGFR but it is good if your filtering of waste is not moving up and down a lot. Love my Nephrologist -- he loves "stable". He keeps telling me "don't keep reading the numbers" Well to a novice BIG NUMBERS MEANS GOOD AND SMALLER MEANS WORSE.

REPLY
@darlingtondoll

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

Jump to this post

Has your improvement happened since the supplements?

REPLY

Feel Better but did not go for my Blood Work until next month...will let you know the outcome...

REPLY
@billagreste

Has your improvement happened since the supplements?

Jump to this post

Yes Bill. I plan to take them every day.

REPLY
Please sign in or register to post a reply.