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Want to hear from others who have Stage 4 Chronic Kidney Disease (CKD)
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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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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6 Reactions@billagreste Yes! And the right diet is a major factor in low or no progression and even some reversal, IMHO. And in my neph's opinion as well. And in secondary neph's opinion. And in pcp's opinion. Something similar happened to me, though not quite as dramatic an improvement as yours. I went from Stage 2 to Stage 4 before we even realized I had a completely dead left kidney . I immediately went on a renal diet and shortly after that a vegetarian renal diet and shortly after that went back up to stage three. (Check older posts for my recipe collection here.) Yesterday neph told me I was doing amazingly well and the diet was a major part of it. BTW, I could happily eat a whole bowlful of anti-inflammatory and anti-oxidant blueberries every day-they're delicious. I am so very happy for your progress!
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5 ReactionsMy son-in-law had kidney problems and even was in the hospital two or three times because he couldn't urinate. His doctor told him he was on his way to dialysis. Then he became a vegan and his checkups started getting better. His doctor finally told him (after over a year) that his kidneys had recovered and were normal. Don't know what caused his problems in the first place but becoming a vegan has helped him a lot. He was a very strict vegan at first but since his kidneys have recovered he is now eating some vegetarian proteins like eggs. He still doesn't eat and dairy.
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2 ReactionsThank you for the information. I just ordered the test strips and the kidney cleanse supplement. I need to keep my eGRF from getting lower. I watch my diet and never go above 35 grams of protein a day. I watch everything else too. I hope that I get good results like you.
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3 ReactionsUnfortunately, I cannot digest blueberries or any raw fruit. I eat applesauce in small quantities. I am paralyzed from T7 down and my colon is also affected. My diet is highly restricted because a lot of foods cause watery diarrhea. I carefully follow a kidney diet. I will get my next follow up in a few weeks. I hope my eGFR has improved.
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2 Reactions@darlingtondoll Am pulling for you and hope all your labs are good.
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2 ReactionsWhat stage are you now and how long have you been in failure?
@billagreste Welcome to Mayo Connect. We are a diverse group of people here, not medical professionals. We share our experiences and thoughts with others along our same path, but cannot diagnose. It has definitely been proven by many patients, that a change in diet and lifestyle can help to reverse some kidney issues. I was told about my kidney issues around 2006. In 2015 I was diagnosed with an ultra-rare kidney condition, which was re-confirmed last November. I have managed to keep my eGFR in the 33-38 range for over 5 years by diet and lifestyle. The thing to remember is that each person is different. So, treatments may vary. Being open to try different things is good, but remember that it may not be "just right" for your case. I am pleased to read you have reversed your kidney disease progression, and will be waiting to hear what your next set of labwork also shows. What is your eGFR numbers as of the last checkup?
Ginger
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2 ReactionsI don’t know how long I have been in kidney failure. My doctor did a Cystatin C test last year and it showed that I was in stage 3. I had no clue that I had this problem. I already had a good diet, but did not pay much attention to phosphorus and potassium. I only eat once a day, at noontime, so I don’t eat a lot of proteins and I have always avoided sodium because of my coronary artery disease.
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1 ReactionHi @billagreste I enjoyed your post. I did not know there was such a thing as creatinine test strips. I have stage 4 CKD due to diabetes and hypertension. I had a pancreas transplant in 2005 for the purpose of saving my vision, preserving my kidney function, preventing amputations and improving all kinds of other diabetic complications. So far, so good. But in 2016 my kidney function starting decreasing a lot. I’ve been through Kidney pretransplant evaluation, went to learn about dialysis and started looking for a living kidney donor. During the past 4 years my GFR has bounced around between 14 - 42. I’m currently at 26. My transplant listing at Mayo Rochester, MN is currently inactive because I’m too healthy for transplant! My friends and family have said “whatever you’re doing, keep doing it”. I haven’t really done anything different than what I’ve always done, except for 1 thing. I’m a Christian and have dedicated my life to God’s purposes. Nonetheless for the longest time I was going around saying “dialysis is no way to live, I’d rather die than do that, I won’t do it ..... blah, blah, blah”. Then it occurred to me that if I claim to be a Christian, who am I to declare what I will and won’t do? God has His plans for me and my death is up to Him not me. Now I pray all the time. I tell God how I’d like it to go down, a preemptive kidney transplant from a living kidney donor. Then I follow Jesus’ prayer example “not my will but Yours be done”. I also pray for and follow the directions of my medical team because I believe I’m supposed to take care of myself as a temple of God.
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