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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.

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australia | @australia | May 4, 2020
In reply to @billagreste "My Nephrologist clearly said that some people have detectable blood cells in their urine. I'm not..." + (show)
@billagreste

My Nephrologist clearly said that some people have detectable blood cells in their urine. I'm not saying if you are peeing blood it's ok. I've had detectable blood in my urine since my 20's (i'm now 65). He said they don't exactly know why, but it's routine for some people. Early on he did a biopsy of my kidney to see if he could find a reason for the blood and he could not. That is when he told me it is routine in some people. If you have blood that you can see, I'd say something is wrong. He said that some kidneys in some people routinely release a little detectable blood and that they are otherwise normal. I want to be clear. You won't see this amount of blood except by test.

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Hi billagreste from Georgia in Australia. In the urine there could be bilirubin and could be blood. They are not the same. Look it up. One is a byproduct of your liver as a breakdown from blood - thrown into the kidney.
The other is blood. I am sure your Nephrologist can tell what is going on with your liver and kidneys from a test. Just ask. It is always the "same old story" - this should be there --and that should not.!!! This is working well and that is not. !!!

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Jane | @darlingtondoll | May 4, 2020
In reply to @billagreste "My Nephrologist clearly said that some people have detectable blood cells in their urine. I'm not..." + (show)
@billagreste

My Nephrologist clearly said that some people have detectable blood cells in their urine. I'm not saying if you are peeing blood it's ok. I've had detectable blood in my urine since my 20's (i'm now 65). He said they don't exactly know why, but it's routine for some people. Early on he did a biopsy of my kidney to see if he could find a reason for the blood and he could not. That is when he told me it is routine in some people. If you have blood that you can see, I'd say something is wrong. He said that some kidneys in some people routinely release a little detectable blood and that they are otherwise normal. I want to be clear. You won't see this amount of blood except by test.

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I have always had blood in my urine. But it’s because I’m a hemophiliac and I seem to seep a little blood from a lot of my body parts all the time.

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | May 5, 2020
In reply to @billagreste "Sure Ginger. https://blogs.davita.com/kidney-diet-tips/baking-soda-kidney-disease/ There is more on it than this link. In another it mentions it..." + (show)
@billagreste

Sure Ginger.

https://blogs.davita.com/kidney-diet-tips/baking-soda-kidney-disease/

There is more on it than this link. In another it mentions it "slows" the progression in some patients. I'm not suggesting overdoing it. But I take it nightly to prevent reflux which for me was chronic but now I rarely get it. There are other less credible references that alkaline water can also reduce the risk of some cancers. That part I'm not going to validate. But you should research it.

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@billagreste I read the link you provided, and no place in there does it state nor suggest that baking soda will/may help clear creatinine. Anyone who needs to be careful with sodium levels would be wise to follow their medical team's guidelines.
Ginger

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1 reply
sissieann | @sissieann | May 5, 2020
In reply to @gingerw "@billagreste I read the link you provided, and no place in there does it state nor..." + (show)
@gingerw

@billagreste I read the link you provided, and no place in there does it state nor suggest that baking soda will/may help clear creatinine. Anyone who needs to be careful with sodium levels would be wise to follow their medical team's guidelines.
Ginger

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It’s also high in phosphorus...not good for stage 3 either!

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kamama94 | @kamama94 | May 5, 2020

Re therapeutic use of Na 2CO2 in kidney disease:
https://www.nhs.uk/news/medication/baking-soda-for-kidney-patients/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4297707/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4522127/
https://jasn.asnjournals.org/content/26/3/515

My nephrologist prescribes it in certain cases where there are no other options. She was at Mayo's before moving to my area and is considered one of the finest nephrologists in the country. She TALKS to and WITH her patients, is on top of and yhoroughly explains lab tests, follows through and follows up thoroughly so if she prescribed it because my Creatine was dangerously high I certainly would take it as I have seen with my own (professional) eyes how well she balances everything for her patients. This is a personal statement. IT IS NOT MEDICAL ADVICE.

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blessedmamie4 | @blessedmamie4 | May 17, 2020
In reply to @pbstpa "Hi @anet. I hope your husband continues to be doing ok. Coming in a little late..." + (show)
@pbstpa

Hi @anet. I hope your husband continues to be doing ok. Coming in a little late on this thread but wanted to tell you I have been Stage 4 for over 24 years. I just turned 60. I am not on dialysis but my function continues to slowly deteriorate. I recently got accepted for the transplant list hoping for a new kidney before I progress to Stage 5. As of now, I'm able to work and pretty much live my life as I please except for all the doctor, transplant center and lab appointments. Fatigue is my enemy so I try not to overdo it. So, of course, you're worried, but keeping a positive attitude, will go a long way for both of you.

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How have you kept your kidneys from getting worse?

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1 reply
billagreste | @billagreste | May 18, 2020
In reply to @blessedmamie4 "How have you kept your kidneys from getting worse?" + (show)
@blessedmamie4

How have you kept your kidneys from getting worse?

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Definately there is research that says Baking Soda can slow the progression. check up on this. Keep your salt content low. I went salt free with Baking soda being the only added sodium in my diet It may have worked. I will be having another check up and I can't wait to see where my numbers are now.

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fiesty76 | @fiesty76 | May 18, 2020
In reply to @darlingtondoll "I have always had blood in my urine. But it’s because I’m a hemophiliac and I..." + (show)
@darlingtondoll

I have always had blood in my urine. But it’s because I’m a hemophiliac and I seem to seep a little blood from a lot of my body parts all the time.

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@darlingtondoll, Jane, I've been thinking of you and hoping all goes well for you?

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fiesty76 | @fiesty76 | May 18, 2020

Hi, Bill, I am both eager and anxious to get my next lab report. With covid and some grocery order shortages, I've worked to maintain my kidney diet but know I've added some "comfort" foods...biggest culprit, Irish potatoes and a few others that may change my ckd #'s. I've been good to really limit salt and sugar from my diet but do the occs'l splurge on a pretzel or bite-sized candy. I eat a lot of veggie salads and use no dressing other than a rare splash of olive oil and vinegar. Using spices like Mrs Dash and others helps with flavoring but it is more of a struggle now with the virus.

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1 reply
billagreste | @billagreste | Jun 4, 2020
In reply to @fiesty76 "Hi, Bill, I am both eager and anxious to get my next lab report. With covid..." + (show)
@fiesty76

Hi, Bill, I am both eager and anxious to get my next lab report. With covid and some grocery order shortages, I've worked to maintain my kidney diet but know I've added some "comfort" foods...biggest culprit, Irish potatoes and a few others that may change my ckd #'s. I've been good to really limit salt and sugar from my diet but do the occs'l splurge on a pretzel or bite-sized candy. I eat a lot of veggie salads and use no dressing other than a rare splash of olive oil and vinegar. Using spices like Mrs Dash and others helps with flavoring but it is more of a struggle now with the virus.

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Are you taking the kidney suppliment by Synergetic?

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