I was told CKD was not reversible - Kidney Disease

Kidney Disease

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I was told CKD was not reversible

SadMad profile image
19 Replies

I was told that CKD was not reversible but that you could stop it from progressing. From reading a lot of posts on here it seems like it is reversible. I myself went from 3 to 4 to 5 and back to 4 again. I guess a lot of it has to do with your blood levels being different different days.

19 Replies

There is no cure and there is no way to reverse CKD. What you can do, as many others have done, is slow the progression of CKD. I was diagnosed about four years ago but was not informed until two and a half years ago. My GFR at that time was at 32, it's lowest ever. Since then I've been as high as 65, but more importantly, I have averaged 51 over that time.

I have been able to do this by following my kidney-friendly meal plan, exercising, watching all of my medications/dosages for other health issues, and staying hydrated.

There are mental components to this success as well. My labs are drawn about every three months by my nephrologist, and about every four months by my PCP, and several times each year by my urologist. Stay positive. Don't let one bad number get you down. The doctors will be looking at the average over time, not one number. If any of my physicians show concern they may order a redraw or suggest I make minor and often temporary changes to something I'm doing. The more you learn about all of your health issues and how they affect each other the better equipped you become at dealing with an abnormally high or low number.

I use a spreadsheet to track all of my labs and I highlight any number above the normal range and use a different color to highlight any number below the normal range. This allows me to spot any trend and ask the ordering physician(s) pertinent questions. It makes my appointment time more efficient and keeps my stress level low.

orangecity41 profile image
orangecity41NKF Ambassador in reply to

Good plan using a spread sheet to track. I might look into that. Can also do an average of test results

steve680 profile image

You can improve your GFR though and you can stabilize your kidney function. The important thing is to stay on top of it, get tested frequently and never get complacent about it. It is possible to reverse Acute Kidney Failure. Once your kidneys are damaged they are more susceptible to getting damaged in other ways. So, you have to get all aspects of your health under control. I would recommend getting a kidney biopsy; ask your doctor about it. Make sure you're addressing the issues that originally caused the initial kidney damage, and then lead a very healthy life from there on; your health is your most important asset. If you have diabetes, get it under control; if you have high blood pressure, get it under control as well. Here are some other general recommendations which may help stabilize your kidney function:

1) Lose weight (if you're overweight).

2) Get tested for sleep apnea (if you're not waking up refreshed - a lot of people who have CKD also have sleep apnea).

3) Stop smoking (if you smoke).

4) Drink alcohol in moderation (I recommend stopping drinking completely, especially if you can't stop after 2 drinks). Two drinks are the limit; one drink is the limit if you're a woman or a man over 65. Heavy drinking can raise blood pressure, which in turn can damage your kidneys even more. There is also some evidence which shows that alcohol can directly damage kidneys which are already damaged (some people think alcohol only hurts your liver, which isn't true).

5) Try to get at least 45 minutes of fresh air and exercise a day.

6) Limit your red meat intake, and only eat grass-fed meats.

7) Eat a low-sodium diet - cut out processed food and fast food.

8) Don't eat a high-protein diet and don't use any bodybuilding supplements.

9) Cut out dark sodas like Pepsi and Coke. Cut out diet sodas.

10) Review any and all medications (even OTC medications) with your nephrologist; long-term use of NSAIDs can cause kidney damage.

11) Based on your lab results, you may also need to limit your potassium and phosphorus intake. You should get tested at least every 3 months.

FlowerPreciousLover profile image
FlowerPreciousLover in reply to steve680

Like so many when first diagnosed with CKD, I was stunned and spent hours searching out more information which lead to feeling overwhelmed initially by the sheer volume.

Steve680, I wish I'd had your excellent, easy-to-follow 11 point check list as an immediate handy guide! Thank you for sharing this.

I'm going to copy your post to my desktop CKD Info. folder to share with another friend just diagnosed. She said she feels "all over the place" knowing she can't tackle everything at once. How well I remember feeling the very same way. Thanks again !

steve680 profile image
steve680 in reply to FlowerPreciousLover

Glad I could help. While it's true that there's currently no cure for CKD, there are actions you can take to save your kidneys. There are people who have improved from Stage 4 to Stage 2, but it takes constant work. Kidney disease is kind of "unforgiving" in the sense that if you don't take immediate action to get things under control, your kidney disease can progress until it's past the point of no return. Wishing you the best of luck!

As an aside, nephrologists will tell you that once you're stage 5, your only options are dialysis or transplant (or do nothing and eventually die). They will also tell you once you start dialysis, that you will remain on it the rest of your life (unless you get a transplant). While that's generally true, there are people who have gotten themselves off dialysis (without the help of a nephrologist). Some people have gotten off dialysis by following a very strict dietary regimen; some people have gotten off dialysis with the help of stem cell treatments. Nephrologists will discourage you from trying either of these approaches. Nephrologists will only prescribe FDA-approved treatments, and that's partly because health insurance will only pay for FDA-approved treatments, but in my opinion the nephrologists aren't paid to take risks or try experimental solutions. Nephrologists are not paid based on outcome and so they are risk averse. This is why it's important to preserve kidney function before it progresses to stage 4 or stage 5.

FlowerPreciousLover profile image
FlowerPreciousLover in reply to steve680

Steve, thanks for your response. While I am thankful that there are members who have great CKD medical teams coordinating and actively working together in the patient's best interest, I am finding it difficult to keep pushing my pcp and neph. for basic help and referrals.

My own sil, who is a thoracic surgeon, recently discounted my stage 3 concern by telling me that his GFR last visit was 2 pts lower than mine and that I wouldn't die from CKD and to eat a "rainbow diet" for much needed weight gain. R e a l l y???

My ff-up lab reports proved to me that appropriate diets can improve lab results for my pre-diabetes A1c, CKD, GFR labs. Adding an inflammatory food guide to help prevent more Diverticulitis has so far prevented another major flare-up since incorporating it as well into my diet.

This year has taught me that patients must learn all they can and then push their docs or find more proactive ones to help manage chronic health conditions.

SadMad profile image
SadMad in reply to FlowerPreciousLover

I so agree. Each person is different and needs to be treated as an individual. I have a rare kidney disease so I am not the normal patient. My PCP & nephrologist don't communicate and I suffer from it. Neph wants PCP to handle non kidney stuff and PCP scared they will mess up my kidneys. I am just learning as we go along this path just like they are. They don't like it when I mention stuff from the internet though. I am supposed to blindly trust them and so far have been hospitalized for dehydration, messed up electrolytes, and depression with anxiety. I am stuck with them though because they are the only ones in my area.

Whitetail66 profile image
Whitetail66 in reply to SadMad

It is so sad that doctors are not way more proactive, and just don't seem to care much, or are just incompetent. I was not happy at all with my nephrologist, so I demanded that my PCP give me a referral to a new one. Fingers crossed that this one is much more proactive, and open minded. I know what you mean about doctors not liking us mentioning the internet. It seems like they get offended if we try to do everything in our power to educate ourselves, and figure things out for ourselves. I understand that they went to school, got a degree, and believe that they know best, but what is wrong with educating ourselves, as long as we don't have the attitude that we are 100% right?

Jayhawker profile image
Jayhawker in reply to Whitetail66

I’ve shifted nephrologists within this past year for the same reasons you describe. I’m much happier with my new nephrologist and the nurse practitioners in his office.

I did make it clear in my first appointment with him that I expected some time in each appointment to be spent in patient education; I can’t take appropriate care of myself at home if I don’t understand how CKD is presenting in my body specifically. Further, my stress level rises when I’m not told what’s going on, even if what they need to share with me is bad news. They have been good about providing some patient education during each appointment.


Whitetail66 profile image
Whitetail66 in reply to Jayhawker

I have been contemplating how to approach my new nephrologist so that I don't run her the wrong way, and start off on the wrong foot. I will definitely use your 'I need to be educated' approach, as she should understand that. It's common sense. I will be honest with her, and lay out my expectations. I will have my questions, and notebook/pen ready. I learned from my tibial plateau fracture, the importance of keeping a journal, and to have everything written down for appointments. The receptionist said that I will have an entire hour my first visit, and that she is great at listening and answering questions. Fingers crossed.

Allank profile image
Allank in reply to steve680

Thanks for the good info for us where the focus is on diet . 1 .How do we go about knowing what the issues that originally caused the initial kidney damage ? I can only guess - maybe hydration , not medication or alchohol , maybe high protrein diet ? what other issues may there be . 2 From what I read the most important person is your Renal Dietitian 3 What would a nephrolog contribute - the best blood pressure pills for you ? - Thanks for your kind attention and good health to all

steve680 profile image
steve680 in reply to Allank

Re #1 - Your nephrologist should be able to diagnose what originally caused kidney damage. A kidney biopsy can be used to help diagnose what caused the kidney damage - you can read more about kidney biopsies here: en.wikipedia.org/wiki/Renal...

Yes, that's correct, nephrologists can prescribe the best blood pressure pills to preserve kidney function. The target goal is to get your managed numbers under 130/80 if you have CKD; if you have diabetes andCKD, the target goal is even lower: 125/80.

in reply to Allank

I had a kidney biopsy and i was told by my Nephrologist that it was irreversible. I have diabetes. He gave me meds to halt the progression . I saw a dietitian to advise me with the food

SadMad profile image
SadMad in reply to steve680

Did I provide labs? I have to take a potassium supplement and phosphorus.

steve680 profile image
steve680 in reply to SadMad

No; I was referring to the labs your nephrologist ordered, assuming that labs are ordered on a regular basis. You need to go over these labs results with your nephrologist and make adjustments as needed.

SadMad profile image
SadMad in reply to steve680

That is what we do. He took me off my magnesium and phosphorus which I need mentally and has put me back on them. Mentally I am better. I see a different nephrologist every visit for about 10 minutes if I am lucky.

My kidney disease is not reversible because i have diabetes. I can stop it from progressing watching the foods that i eat. I went to a dietitian and she gave me a food plan

steve680 profile image
steve680 in reply to

If you have type 2 diabetes, you can improve your A1C and avoid the need for medications. a few years ago mine was 7.3 and the doctor wanted to put me on diabetes meds. I didn't want to take diabetes meds, so I exercised and lost weight and cut out alcohol. My last A1C from a few months ago was 5.5, so it is possible.

in reply to steve680

I have lost about 19 lbs. I don’t eat sugar and I am not on meds. The last time I had my A1C taken it was 7.0 but that was several Months ago.

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