Why do they always say CKD can't be reversed?

[jil9270]

There's the wellknown Dadvice youtuber who has gone from Stage 5 to 3, and as I've been reading online I've seen others post that there's was reversed. I understand if its very rare they dont want to give anyone false hope, but all official sources I've seen like cdc.gov so it can not. Thank you for any replies.

[orangecity41 NKF Ambassador]

I was diagnosed with CKD level 3b, 5 years ago at age 76, and put on appropriate diet based on bloodwork. The diet has helped slow the progression of CKD for me. On my diet the eGFR test shows kidneys functioning at 60. If not been on diet the eGFR might have been 50 or less?

[Wannakee22 in reply to orangecity41]

Hi, Can you tell what special food you ate? Because I would like to increase my GFR please

[orangecity41 NKF Ambassador in reply to Wannakee22]

My prescribed diet by my GP is based on my blood work for potassium, phosphorus and sodium. Ask your Doctor which CKD diet is best for you.

[Wannakee22 in reply to orangecity41]

Thank you. If you don’t mind sharing your GP mine isn’t very helpful.

[neidrum]

I went from 58 to 65 and hope it continue to rise. I'm eating different now, no salt or sugar, more vegetables, fruits and no red meats. I go on the treadmill sometime (I try to go 15 minutes weekly in the morning) I also lost some weight a couple of pounds. I think the hardest is eating bland food and having 1 piece of chicken or fish instead of 2 or 3 pieces. :)I believe with Gods help it can be reversed.

[jil9270 in reply to neidrum]

Thank you for the replies. I have some symptoms of ckd and heart failure so I have scheduled a doctor appointment. I'm scared but it has to be done, your all's posts of improvement are encouraging.

[Marvin8]

I don't want to be Johnny Raincloud or anything, but I'd take Dadvice's claims with a bit of salt. Wait a sec....skip the salt.

[renegade70 in reply to Marvin8]

i agree.

[RoxanneKidney in reply to Marvin8]

Watch him a lot. Never heard him say anything that is not true. He is speaking from personal experience and makes that very clear. His testimony has helped ease the depression associated with diagnosis for many people ...me included. Eat healthy and exercise. That is his over all message.

[Blackknight1989 in reply to Marvin8]

there you go again Marvin. I was gonna report you for bad medical advice if you hadn’t of said “skip the salt!”

[jil9270]

Thank you for the reply. I've been very lax in my annual exams but am starting to do better as of next week. I have some symptoms of CKD and will talk to my Doctor who I'm guessing depending on my labs may refer me to a Nephrologist. I'm self employed and have health insurance through ambetter. I guess I'm just scared hence the multiple posts, I"ve already studied ckd a lot and will continue to do so, thanks again for the reply.

[jil9270]

Thank you for the reply. I'm curious why you say that... does it seem like he embellishes his claims? Or something else? Not saying you're wrong I'm just trying to learn.

[renegade70 in reply to jil9270]

he is not a nephrologist. you cannot believe everything said on the internet. listen to a specialist you feel you can trust. what works for one may very well not work for another.

[nonna70]

Remember that the same symptoms may be a result of multiple conditions; that's why none of us here have med. licenses. Continue to educate yourself with us and use reputable sites like kidney.org, AHA etc. Good luck with your dr. next week.

[Bassetmommer NKF Ambassador]

To answer the confusion, CKD cannot be cured. What can be done is slow down the progression. What they are not saying is that eventually, and it may be years and years, the kidneys fail. It is a natural phenomenon. As we age, so do the kidneys lose their ability to filter. That is all a GFR is, a rate of filtration. As we age, the GFR will go down. It is not until you get below GFR of 60 that they start saying CKD. And depending on the age, it might not be. Let's say a GFR of 56 at age 95 might be just fine. What you can do, and there are many who have, is slow the progression. It all depends on so many factors. What is your general health? What other diseases do you have, such as high blood pressure and diabetes? Did you have damage done to your kidneys? Do you have stones or cysts? Those things can permanently damage a kidney.

By using diet and exercise, it is possible in some cases to slow, and for a time raise the GFR. Mine for example has fluctuated for the last 4 years, going up and then sometimes down.

I was told in 2018 to prepare for dialysis within six months. I went to the dialysis training and said to myself, "oh hell no." I then went on a diet, actually several different iterations of a renal and plant-based diets. I lost 50 pounds, got my A1c down, my BP down, and I work hard at it every day. Four and half years later, my GFR is still low, I am stage 4, but is only bouncing between a few numbers either way. More important are my other lab numbers, creatinine and so forth also reflect stability. But most important, I feel great.

Read, listen and take in pieces from all these resources. There are gems in them all. BUT... if they actually had the cure, wouldn't everyone with CKD be doing what they say and CKD would be gone? Nope, not reality at all.

[MoeAndMoot in reply to Bassetmommer]

Thanks for all the helpful information. Can you tell me how important exercise was for you to lower your numbers and what you did to improve them? I am exercising 3-4 times per week, but have read that GFR may be negatively affected by it. On the other hand, I am trying to lose weight and need exercise to accomplish that. It can be so confusing.

[ICE187]

The cause of my CKD is reversible. My eGFR was 74 at the beginning of this year. It is currently at 97 as of a week ago. What triggered my CKD was Hypothyroidism. Treating my thyroid helped my kidneys. I also take adrenal glandulars. Adrenal glandulars can make CKD worse, depending on the cause. Before my tbyroid diagnosis, I went to the doctor due to severe kidney issues and rapid weight loss. I was having heart issues at the same time. Sinus tachycardia, very high to very low blood pressure, heart palpitations, vision issues, very high cholesterol. My original doctor was trying to treat each individual cause instead of looking for the main cause. High cholesterol used to be the standard flag for hypothyroidism diagnosis. My test 7 years prior pointed to hypothyroidism, but it was ignored. I was given statins and blood pressure meds. Through research, I learnt that statins and hypothyroidism cause worse symptoms. My statins were not helping. My original doctor wanted to raise my statin dosage. I refused and quit taking them all together. I made copies of 7 years of blood work and handed them to my lovely new doctor. He immediately knew what was going on by the grace of God. He ordered a thyroid test and bam, it hit. I'm no longer on blood pressure meds. It stays around 117/75. No more palpitations. Prior to getting on levothyroxine, I had frequent urination with very little output. My original doctor wanted to send me for testing of bladder cancer and other cancers. I refused those tests. I see you're in the U.S too. It seems like doctors here in the states are a part of the system to just barely keep us alive long enough to drain our bank accounts. My new doctor is 81 years old with 30 years practicing. I'm scared that time isn't on his side and then I will be thrown back into the system of doctors that aren't for the patient. The way my doctor explained it is it depends on what triggered what first. If ckd triggered hypothyroidism, then levothyroxine will make my kidney issues worse. If my thyroid triggered my kidney issues, then levothyroxine will help my kidneys. 2 studies I found are linked below.

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[Blackknight1989 in reply to ICE187]

What you described is AKI not CKD. Just to be the jerk in the room and issues relating to CKD are not reversible but with an AKI they are once the toxin is removed ( in your case too much thyroid hormone.) The labels are important because their is so much bad information out there made worse by unfettered access to the internet professing the latest “cure”. CKD spent so much time being ignored by the medical profession they quit teaching it in A&P and then about 3 years ago when the world woke up and found it was a horrible problem with 1960s technology as the only treatment (dialysis and transplant) we launched the Decade of the Kidney in the US and have finally started making progress in coming up with some real effective ways to slow progression other than “be careful,” until you get to ERSD and we can do our magic 1960s dialysis on you till we schedule you for an 8 hour surgery to implant a cadaver kidney in you. Can you imagine if that was how we treated heart patients or cancer patients? They would have fixed it long before 2018.

With the Decade of the Kidney projects like The Kidney Project a joint private/government project to modernize and actually treat CKD prior to stage 5 to AVOID the ERSD stage and its butchery where hundreds of millions of dollars have been allocated in the last 3-4 years and they have just completed things like (if you read my post on the recent great news about the success of the artificial kidney in pre-clinical trials) and additional research like the recent approval of SGLT2s approved by the FDA for use in non T2D patients where nearly all studies show the effectiveness of Jardiance in nearly halting further kidney damage from CKD with nearly no downsides. Both Jardiance and Farxiga were adopted by the ASN in the last couple of months as the frontline treatment for non T2D CKD patients. The artificial kidney is ready to begin FDA clinical trials and could be if all goes well available as soon as 2025/2026. Quite the achievement for an ignored for decades condition that has finally been revamped and given the attention we deserve.

My point, agencies like NKF, AAKP, ASN, and NIDDK in the US and counterparts across the world are finally pushing real good information out there to properly educate both patients and DOCTORS because they are nearly as clueless as we are. But you don’t overcome decades of ignorance in a couple of years so bad information and misleading snake oil internet fads muddy the waters and cause folks to believe as ICE does that his CKD was “cured.” That just can’t happen in “normal” CKD and can truly demoralize a patient who doesn’t experience that success or worse as I have seen as a volunteer helping newly diagnosed CKD/AKI patients in hospital lead to a patient following bad information into needing dialysis and transplant 10 years earlier because of the misinformation they wanted to be true. There are very few absolutes in true CKD cases but one very true absolute is there is absolutely no cure for this degenerative affliction….yet.

I know I sound cynical and that is not my intent instead I see all of you like those I try to help in hospital and if I happen to know the facts as based on medical research studies than I see it as my imperative to try to help you all as much as I can. Im not a medical professional though my own CKD/AKI story kept me in the hospital long enough to complete an internship…lol. I don’t know it all but I have had 26 years in stage 4 and I can no longer work. I haven’t since 2020 and that has allowed me to research nearly 3 hours daily. I spent 30 years as a small business owner helping individuals with financial planning and I simply truly enjoy helping my fellow man. If I can help just one of you once, I will have my reward though I’m not particularly smart I just have the ability and desire to learn as much about this affliction as possible. I hope that all made sense and I wish everyone my best in the quest for quality of life!

[Jamok]

I think those with kidney issues as a result of other diseases like poorly managed diabetes, high blood pressure, obesity etc can be reversed once these conditions are addressed. But for someone like me with ADTKD(Autosomal dominant tubulo-interstitial kidney disease), a genetic kidney disease, lifestyle changes are less effective. Some people with my condition fail at 25 while some make it to seventy until they fail. Researchers don’t know what accounts for this. But, I think by being mostly vegetarian for the last year I have slowed it down? Perhaps it’s only giving me a sense of control and it would be following this course no matter what I did since that’s the way this disease is- gfr goes up a few points, then down a few and repeats until it goes down and holds there until it happens again as it slowly takes my kidney function.

[horsie63]

Mine is caused by my having ignored my BP and use of NSAIDs even though I have Graves Disease. Mine are hevily scarred and even my plant based diet won’t reverse that. I spills lot of protein that we’re trying to slow down but dialysis is inevitable unless I can get a transplant first.

[barbara55109]

CKD is an umbrella term. There are several different causes. There is also an acute kidney injury which, depending on your situation, you may recover from. When people say they had CKD and now their eGFR is normal due to lifestyle changes I wonder if they really had CKD or had an acute injury. A one off low eGFR is not CKD. That is why good Dr.s don't label it CKD until they see the decline over time. There isn't a "cure," but some people are able to slow the progression with lifestyle changes. Slowing the progression is good. I too was told to prepare for dialysis two years ago. I got my fistula a year ago. My eGFR has actually bounced up from 20 to 25-28. Because 30 years of dehydration caused my CKD I was able to stop most caffeine and go on anti-diarrheals and seem to be hovering in the 20s. I am not cured. The damage is done. But the longer I can slow the path and keep working the better. I'm 59.

[Michael__S]

My GFR appear to have slightly increased on average compared to last year. In my eyes I did not reverse anything, I merely did a good job at managing my issues and put a significant amount of effort into it. That's what improved it, not my kidney regenerating itself.

There are certainly an unknown amount of biological adaptation here and there but I don't believe they are significant enough to be the main driver; if I were to eat crap food and not exercise I'd be unlikely to feel that much better.

[whats]

I agree with everybody. Depends on the cause of CKD. In some (most?) cases you can only slow progression. My ckd is probably from high blood pressure and a bad lifestyle. Since I changed my diet (and lost weight) and exercise more my eGFR has gone up and seems to be staying up.

[Blackknight1989]

if you have “normal” CKD it is not reversible. Kidney nephrons DO NOT regenerate. We are all born with only a set amount of these truly remarkable cells that make up our kidneys and once you are diagnosed with CKD 90% plus of us suffer from you have destroyed SOME nephrons. They never come back….eGFR is the measurement of the damage done to these nephrons. So let’s say we all have 1,000,000 nephrons per kidney and I go to the doc and get diagnosed with stage 2 CKD due to HBP. If my eGFR is around 80% or normal eGFR then I have destroyed 200,000 nephrons….they will never return….they do not regenerate….if you have had “normal” CKD for a while go get an X-ray of your kidneys….they will be atrophied because they have lost cells…period end of story.

EGFR is only accurate to about 40/50% of mGFR…see that is it a horribly inaccurate number….that’s why when you get ready for dialysis nearly all docs move back to creatinine to determine the optimum time to start dialysis. EGFR number are different 5 minutes after the last test…in addition the ways it measure changed substantially about 9 months ago with a positive effect for most people so we all got a boost to our eGFR then about 5/7 point for most…. That’s why doc normally don’t fret over a 5 or 7 point up/down change in eGFR because that is just what it does.

Go here….NIDDK.gov. Read the section on eGFR. Learn that it isn’t the same as other lab readings with other diseases with accurate measurement. EGFR is used for trends not for the result. Get off the eGFR hang up it’s false hope or false fear….and it is explained on many sites all over the internet…btw UCAR is also only about 50% accurate to mUCAR…it ain’t perfect but if you understand you’ll save yourself headaches and the fear/hope emotional rollercoaster you create for yourself based on bad data!

Here is a new study with evidence of the differences between eGFR and mgfr:

acpjournals.org/doi/10.7326...

[Adams_ in reply to Blackknight1989]

Which one should be taken in account for my own "quietness" if i do want to know "exactly" where i belong to?let's say my eGFR is 60 and my MGFR 80?If the gap beetween eGFR versus mGFR is so important mGFRshould be the gold standard if more accurate,isn't?

I really don't understand how all this work and on what should i fix my attention to prevent more damage on my kidneys.

[Blackknight1989]

Hey Jil9270 and welcome. You may improve you lab readings but generally that’s a function of eGFR and creatinine very imprecise and often inaccurate to your true numbers. Currently if your diagnosis is confirmed research all you can because most folks (including me) know very little about this disease. It shouldn’t be ignored because it can progress quickly if you don’t change diet, exercise and avoid the must avoids. Don’t get hung up on you actual numbers but the trend of your numbers. It is a life-changing diagnosis you can slow or stop progression for a long time. My best in your journey!

[Hidden]

In June of 2017, I was stage 5 (creatinine=8 and GFR=6) and started hemodialysis then progressed on to PD. By May of 2018, I was off dialysis and went to stage 4. Over the next few years, I kept improving and I am now at 3B (creatinine=2.25 and GFR=31). My CKD was caused by vasculitis from an autoimmune disease. While I was sick for 4 months waiting for a diagnosis, I was taking a lot of Ibuprofen. That probably help destroy my kidneys but also allowed them to recover after stopping taking it.