Chronic Kidney Disease (CKD): How do I stop progression?

Posted by bdade59 @bdade59, Jul 6, 2018

I was just rescent told I have stage 3 kidney disease,I felt the my world come to a stand still! I have 1 kidney lost one to cancer 30 years ago!.quickly I had to change my reactions,my thinking! …any one out there have lived a while in stage 3 and stoped the progression I would like to hear from you please.every body is different! But the encouragement is worth hearing!!!

Interested in more discussions like this? Go to the Kidney & Bladder group.

I am wondering the same thing. I was diagnosed June 26 this year, and immediately changed my eating habits. I haven’t eaten anything but the recipes I’ve made off the DaVita Website. Discontinued all soda products and alcohol. I’ve lost 25 lbs. I’m really hoping this will stop the progression.

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@johnbishop

@whenley1968 and @sunnyflower, This is Chronic Kidney Disease (CKD): How do I stop progression? discussion I mentioned that would be a good place to share your story and ask any questions you may have. You mentioned you had an egfr in september a year ago. In March your egfr was 46 and creatinine was 1.68. You changed everything about how you ate and Renal Stenosis was the verdict. Since then you have had an egfr taken a couple more times. The next one was 55 and one last week said it was 66. So you are wondering if your kidney and renal stenosis are reversing itself?

These are the articles I listed in my first post that you may find helpful.

Renal Function Can Improve at Any Stage of Chronic Kidney Disease: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3862566/
Estimated Glomerular Filtration Rate (eGFR): https://www.kidney.org/atoz/content/gfr

@oldkarl, @rosemarya, @marvinjsturing and other members may have some information on

@whenley1968, Have you discussed the eGFR rate increase with your doctor to see if they can provide any information?

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Thank you sir. You are much more adept at using this website. I’ve never forumed before. I will try not to be an idiot, but grace and patience is needed

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@whenley1968

Thank you sir. You are much more adept at using this website. I’ve never forumed before. I will try not to be an idiot, but grace and patience is needed

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Oh, @whenley, your post has me laughing Because…I've made all kinds of mistakes learning to navigate and better use these forums! You'll find members here very understanding, helpful and … patient! Keep posting; my theory is the more we stay engaged with others who know about our particular maladies, the better we can learn to manage whatever ails us. We are all in this together, right?

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@sbshreeve

I am wondering the same thing. I was diagnosed June 26 this year, and immediately changed my eating habits. I haven’t eaten anything but the recipes I’ve made off the DaVita Website. Discontinued all soda products and alcohol. I’ve lost 25 lbs. I’m really hoping this will stop the progression.

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Hi, @sbshreeve, Good for you for immediately changing your diet to a more kidney friendly one. That is so important and Davita has many good recipes to follow.

When I first found this group about a yr ago, I learned the importance of checking my kidney lab values to see which specifics like potassium or phosphorous for instance needed more attention with my kidney diet. One source that helped me learn to read my kidney lab reports was http://www.kidneyschool.org.

Welcome to this group. If you are like many of us were when first diagnosed, it can seem overwhelming at first. However, as you learn more about your stage and how to better manage it, the anxiety lessens. What stage of the 5 are you? Did your doc suggest a referral to a nephrologist or dietitian? Hope to hear more from you soon. Take care.

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@fiesty76

Hi, @sbshreeve, Good for you for immediately changing your diet to a more kidney friendly one. That is so important and Davita has many good recipes to follow.

When I first found this group about a yr ago, I learned the importance of checking my kidney lab values to see which specifics like potassium or phosphorous for instance needed more attention with my kidney diet. One source that helped me learn to read my kidney lab reports was http://www.kidneyschool.org.

Welcome to this group. If you are like many of us were when first diagnosed, it can seem overwhelming at first. However, as you learn more about your stage and how to better manage it, the anxiety lessens. What stage of the 5 are you? Did your doc suggest a referral to a nephrologist or dietitian? Hope to hear more from you soon. Take care.

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Thank you for your kind response. I am 3A on the CKD scale. I don’t have diabetes or high blood pressure. I have no idea what caused this. To my knowledge it isn’t hereditary from my parents or grandparents.
My primary provider has not recommended I see a nephrologist. I did ask for a referral for a nutritionist. She gave me lots of written information which was good.
I’m so glad I found this group. It helps to hear others’ stories and recommendations. I’ll see my MD again in January. Hoping the labs show improvement or at least stay the same.

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@sbshreeve, You are welcome. No idea what caused mine either; no family history of ckd. However, I've had lots of prednisone over the years and wonder if that contributed to my diagnosis. I learned from a scan report given to try to determine wt loss, that I "indicated kidney disease". My primary had never mentioned indications and after searching for more info., I called for an appmnt and asked for a neph referral. Primary didn't mention kidney lab values but did refer me. When neph. told me of my stage 3 diagnosis, I nearly fell off the chair! Turns out she'd used lab values from blood and urine labs conducted by my primary and sent to her for the diagnosis! No idea how long my annual labs with primary had been showing kidney problems because I'd never paid attention or even knew how to read the lab reports. I'd relied solely on the PCP to advise of any changes that were needed for whatever. Never again.

After joining this group, I learned that many primary docs do not alert patients to kidney disease until they reach stage 4. Think that is a bummer because the sooner we know, the sooner we can take measures to better manage our diagnosis. Just suggesting that you may want to request a referral to a neph. at your next PCP appt. Glad you saw a nutritionist and that you were provided with good information! Mine was great and as a result, I have improved both my pre-diabetic and kidney scores through diet and exercise.

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@bdade59

It's just good to know it's been 3 years it give me more hope I took a 2 hour class..and when she finish I was scared to death. She talked with no feelings or compassion.i guess after teaching the class for 6 years it just become a job!..so Thanks you really gave me hope and my trust in God…Faith! IAM trying to stop it or slow it down..I know I can't reverse it. Thanks!! Keep postive! And keep moving forward!!!

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I relate to you. I was diagnosed with 3a CKD the end of June this year. Because of Covid, the classes were all online. At the end, I just broke down. “I wanted NO dialysis! That’s NOT living.” I guess my takeaway from your post is that I should discuss it with my family. In the meantime, I’ll continue with diet and exercise in an effort to stop progression.
Thank you for your post.

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I was surprised with a diagnosis of Stage 3B CKD in June after years of having my internist tell me my GFR and Creatinine abnormalities were "just my normal". Luckily I was seen by a different provider that identified my issue. I was seen at the University of Iowa where I got the shocking news. I was able to get all of my labworks from the last 15 years and I had issues almost the whole time. I was angry my internist didn't send me to someone years ago but water over the dam. University of Iowa never made any recommendation for diet although with my internist I was put on a statin, blood pressure meds, and potassium citrate. I did my own research using PubMed and other sites for the latest articles and it seemed that I should be on a diet restriction of 1500mg per day of sodium and .8g protein per Kg of body weight which started at 65g per day. I charted everything I ate and and in one month my GFR improved from 37 on August 26 to 47 on September 26. My creatinine level dropped from 1.82 to 1.48 over the same time period. My weight which I had been trying to lose since June dropped 8 pounds in the last month. In June when diagnosed I figured the less body mass I had the less my kidneys would have to filter. I was 183 in June and 163.1 this morning. I am sharing my story as it was my way to stop the progression which in hindsight had been getting worse every blood test for years. I am not saying to do what I did as I have done this without any doctor supervision because no one would give me any. I have an appointment at Mayo on November 9 and I hope they agree with what I did. My internist was elated and asked my what I was doing at today's visit. Hopefully I continue to improve and I can get some answers about a large cyst that I have in one kidney and some large stones that I have in the other at that visit to see if they are impacting this issue. Wishing everyone the best.

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I have increased water intake and tried to watch my diet. My reading was the same as last, so I seem to be maintaining.

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@gladiator14

I was surprised with a diagnosis of Stage 3B CKD in June after years of having my internist tell me my GFR and Creatinine abnormalities were "just my normal". Luckily I was seen by a different provider that identified my issue. I was seen at the University of Iowa where I got the shocking news. I was able to get all of my labworks from the last 15 years and I had issues almost the whole time. I was angry my internist didn't send me to someone years ago but water over the dam. University of Iowa never made any recommendation for diet although with my internist I was put on a statin, blood pressure meds, and potassium citrate. I did my own research using PubMed and other sites for the latest articles and it seemed that I should be on a diet restriction of 1500mg per day of sodium and .8g protein per Kg of body weight which started at 65g per day. I charted everything I ate and and in one month my GFR improved from 37 on August 26 to 47 on September 26. My creatinine level dropped from 1.82 to 1.48 over the same time period. My weight which I had been trying to lose since June dropped 8 pounds in the last month. In June when diagnosed I figured the less body mass I had the less my kidneys would have to filter. I was 183 in June and 163.1 this morning. I am sharing my story as it was my way to stop the progression which in hindsight had been getting worse every blood test for years. I am not saying to do what I did as I have done this without any doctor supervision because no one would give me any. I have an appointment at Mayo on November 9 and I hope they agree with what I did. My internist was elated and asked my what I was doing at today's visit. Hopefully I continue to improve and I can get some answers about a large cyst that I have in one kidney and some large stones that I have in the other at that visit to see if they are impacting this issue. Wishing everyone the best.

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@gladiator14, Thank you for sharing your experience and the heartening news of your kidney function improvements. It is sad but the more I hear from the others, I think your years (and mine) of decreasing kidney function with no caution or intervention from our docs are sadly more the norm than the exception.

Until my ckd stage 3 diagnosis, I'd never questioned a doc nor paid attention to lab results. So much of what I've learned and benefited from these past two yrs since my ckd diagnosis has been through my individual effort to learn and research a path to better kidney health. Like you, the steps I've taken have improved my kidney scores but I wish that more physicians would alert patients to changes that could be addressed much earlier.

Hope you'll let us know what you learn from your doc regarding the large cyst and stones and what you can do for treatment.

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@fiesty76

@gladiator14, Thank you for sharing your experience and the heartening news of your kidney function improvements. It is sad but the more I hear from the others, I think your years (and mine) of decreasing kidney function with no caution or intervention from our docs are sadly more the norm than the exception.

Until my ckd stage 3 diagnosis, I'd never questioned a doc nor paid attention to lab results. So much of what I've learned and benefited from these past two yrs since my ckd diagnosis has been through my individual effort to learn and research a path to better kidney health. Like you, the steps I've taken have improved my kidney scores but I wish that more physicians would alert patients to changes that could be addressed much earlier.

Hope you'll let us know what you learn from your doc regarding the large cyst and stones and what you can do for treatment.

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@fiesty76 Your observation about failure/reluctance of Dr's to address declining kidney function is a sad statement of our times. I also experienced what you and many others did. I was first told at Stage 2, sliding in to Stage 3. Immediately I started research trying to figure the cause of the disease, and putting myself on a kidney-friendly diet. Dr's told me there was no need to do that, but I believe early intervention, to lessen the strain on them, kept my eGFR slowing it's decline. In 2015 we found the cause of the kidney issue, an ultra-rare disease [that was re-confirmed last Oct].

Because kidney disease can often be insidious, and can quietly sneak in to our lives, it behooves us all to watch our health. So glad this group openly shares techniques, and advocates to help each other!
Ginger

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@gingerw

@fiesty76 Your observation about failure/reluctance of Dr's to address declining kidney function is a sad statement of our times. I also experienced what you and many others did. I was first told at Stage 2, sliding in to Stage 3. Immediately I started research trying to figure the cause of the disease, and putting myself on a kidney-friendly diet. Dr's told me there was no need to do that, but I believe early intervention, to lessen the strain on them, kept my eGFR slowing it's decline. In 2015 we found the cause of the kidney issue, an ultra-rare disease [that was re-confirmed last Oct].

Because kidney disease can often be insidious, and can quietly sneak in to our lives, it behooves us all to watch our health. So glad this group openly shares techniques, and advocates to help each other!
Ginger

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Agree! My nephrologist continues to tell me that my remaining Stage 3(b) kidney does not require any changes in diet, etc. When would diet at least come into play – Stage 4, Stage 5?

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