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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Jane | @darlingtondoll | Mar 2, 2020

In reply to @kamama94 "@darlingtondoll Am pulling for you and hope all your labs are good." + (show)

I got my test strips from Amazon today and rushed in the bathroom to pee in a cup. I dipped the stick in, but there were so many things to read on the strip, that it took me several minutes to record everything. I have had a raging UTI for four days and sure enough, it recorded the highest reading. My urologist never wants to give me anything for this because he says that I will be resistant to the drug. But ultimately, the infection travels up to my kidney. Sometimes I think that I am in kidney failure now because of years of having UTIs. People like me with incontinence due to a spinal cord injury, have frequent UTIs. I also checked on all the tests for kidney function and I failed miserably on all counts. I religiously watch my diet, but it hasn’t seemed to help. I am so frustrated!

Jane | @darlingtondoll | Mar 2, 2020

In reply to @billagreste "Okay, so I don't know if my post will get deleted because it does not follow..." + (show)

@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.

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I also got the kidney cleanse supplement that you suggested. I will start taking it tomorrow.

billagreste | @billagreste | Mar 6, 2020

In reply to @gingerw "@billagreste Welcome to Mayo Connect. We are a diverse group of people here, not medical professionals...." + (show)

So on my very last test, my gfr went to 30 from 22. I went from stage 4 flirting with 5 back to 3. My creatinine tests strips are measuring now almost at the normal color (first color block on the test strips). I'm anxious for my next appointment and hopeful I'll have further improved. I'll be sure to post this. I realize my gain doesn't mean others will have the same result. I'm hoping however that I may of helped someone.

Ginger, Volunteer Mentor | @gingerw | Mar 7, 2020

In reply to @billagreste "So on my very last test, my gfr went to 30 from 22. I went from..." + (show)

@billagreste It is always heartening to hear when people have bounced back from critical health situations. I recall my one nephrologist telling me that it is best to look at trends of values, not just a single value on a single test. An "odd" result may be caused by a different reporting lab, different machine, or something within the patent causing a result out of normal.
Ginger

Jane | @darlingtondoll | Mar 14, 2020

I have been taking the supplement that you recommended and at first, all my kidney numbers were bad - off the charts. It has now been 12 days since I started to take them and all my numbers are normal except my microalbumin which is very high. Everything else looks great. I will get my blood work done again in two weeks. I hope that my eGFR has improved too. Than you Bill for telling me about this kidney cleanse. You’re a life saver.

Jane | @darlingtondoll | Mar 14, 2020

My UTI has cleared up so that is not influencing my high Microalbuminuria.

Colleen Young, Connect Director | @colleenyoung | Mar 17, 2020

In reply to @darlingtondoll "My UTI has cleared up so that is not influencing my high Microalbuminuria." + (show)

@darlingtondoll, glad to hear that the UTI has cleared up. What precautions are you taking to prevent recurrence?

Jane | @darlingtondoll | Mar 18, 2020

In reply to @colleenyoung "@darlingtondoll, glad to hear that the UTI has cleared up. What precautions are you taking to..." + (show)

I’m paralyzed and therefore incontinent, so it’s easy to get a UTI. But it usually occurs when I get diarrhea. I never know when it can happen and because I am wheelchair bound and have no feeling in my lower body, I don’t know when it is happening and I sit in it for several minutes until I can get to the shower and clean up. Just another problem associated with paralysis.☹️

fiesty76 | @fiesty76 | Mar 19, 2020

Goodness, Jane, you sound like a real trooper and someone I would enjoy having as a close neighbor! My nephew was paralyzed and also incontinent but also being very independent, he refused to leave his town and friends to come live with me. It was so difficult living hundreds of miles away but his friends were absolutely wonderful in helping and checking in on him. He lived for many years but died suddenly of a totally unrelated accident. I so admire you and others in similar situations who continue to do all you accomplish.

Jane | @darlingtondoll | Mar 19, 2020

I loved your post about the gecko. We have a lot of them here in Florida. I used to live in the desert in California and I got this vase with a lizard when I was there. I love all these creatures. A few days ago, I saw a big snake (well, just it’s tail) when I was on our screened porch. It went into our big barbecue machine and I haven’t seen it since. Since I’m in a wheelchair, I can’t run away from it and I am hoping that it is non poisonous.😒