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!!!

Hello @bdade59! Thanks for opening up about your CKD and cancer. I can't imagine going through both! You must be an incredibly strong person! I was diagnosed with Alport Syndrome, a form of inherited CKD, 5 years ago. I was diagnosed at stage 3 (eGFR 50%), and I stayed in stage 3 for over 3 years. I have recently meandered into stage 4. However, I want to encourage you, even with an eGFR of 20%, I still feel pretty good! Outside of anemia (which can be controlled with hormone replacement shots) and some weakness and lethargy, I feel fairly normal. I am able to yet work and do full-time school, even though I am approaching my transplant evaluation (in August). I hope that can be an encouragement for you! There is life outside of dealing with the messiness of CKD! God is yet good! Thanks again for sharing!

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@gingerw

I was diagnosed with CKD about 15 years ago. About 10 years it progressed to Stage 3. I am now 3b, hovering about 32% for last 1.5 years. The cause of my CKD is a very rare disorder where collagen buildup is blocking the filtering components. I placed myself on a fairly strict kidney diet, and mesh it in with a gout friendly diet. No oranges/bananas/potatoes/tomatoes/pork/purines/shellfish, etc. While the Drs said it wasn't necessary, I said it was, to help control any decline. My advice is to be proactive in your treatment, don't wait for the medical team to tell you next step.

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Thanks you have been very helpful to me..I appreciate knowing about shell fish..etc..that's a big help!..and you are so correct! I took charge..putting myself on a strict diet! I have 1 kidney lost one to cancer 25 years ago! It has some scaring done to. The outside of it…but I was told amount ago I was in stage 3a..scare me to death!..I didn't know a 1 or 2 exist?…they said they were watching me close so how did I go straight to 3a..no one ever told me..and they were testing me all the time!

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@gingerw

I was diagnosed with CKD about 15 years ago. About 10 years it progressed to Stage 3. I am now 3b, hovering about 32% for last 1.5 years. The cause of my CKD is a very rare disorder where collagen buildup is blocking the filtering components. I placed myself on a fairly strict kidney diet, and mesh it in with a gout friendly diet. No oranges/bananas/potatoes/tomatoes/pork/purines/shellfish, etc. While the Drs said it wasn't necessary, I said it was, to help control any decline. My advice is to be proactive in your treatment, don't wait for the medical team to tell you next step.

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@gingerw, You are living proof that we, the patients, must take a proactive approach to our health while working with our doctor.
I wish you many years of continued health.
What kind of monitoring does your doctor do to stay 'on top' of your condition?

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@gingerw

I was diagnosed with CKD about 15 years ago. About 10 years it progressed to Stage 3. I am now 3b, hovering about 32% for last 1.5 years. The cause of my CKD is a very rare disorder where collagen buildup is blocking the filtering components. I placed myself on a fairly strict kidney diet, and mesh it in with a gout friendly diet. No oranges/bananas/potatoes/tomatoes/pork/purines/shellfish, etc. While the Drs said it wasn't necessary, I said it was, to help control any decline. My advice is to be proactive in your treatment, don't wait for the medical team to tell you next step.

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Thank you, Rosemary. I have quarterly testing, with complete labs. I have had to be my own advocate since a 1988 of systemic lupus, and additional health concerns with cervical cancer, malignant melanoma, and other things besides the kidney issues. It is important to be accurately informed [It's your right!], and not afraid to ask questions. Or even confront your Drs if they may be telling you something that "doesn't feel right". That has happened to me. Didn't make me popular with some, but gained the respect of others.

One prime example was telling my primary Dr that my kidneys were hurting, creating flank pain. He said "that doesn't happen." I asked for testing. Showed they both had a raging infection. If I had waited, they would have failed me completely within 24 hrs.

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@annav4

Hello @bdade59! Thanks for opening up about your CKD and cancer. I can't imagine going through both! You must be an incredibly strong person! I was diagnosed with Alport Syndrome, a form of inherited CKD, 5 years ago. I was diagnosed at stage 3 (eGFR 50%), and I stayed in stage 3 for over 3 years. I have recently meandered into stage 4. However, I want to encourage you, even with an eGFR of 20%, I still feel pretty good! Outside of anemia (which can be controlled with hormone replacement shots) and some weakness and lethargy, I feel fairly normal. I am able to yet work and do full-time school, even though I am approaching my transplant evaluation (in August). I hope that can be an encouragement for you! There is life outside of dealing with the messiness of CKD! God is yet good! Thanks again for sharing!

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@annav4 – Anna, Welcome! I am happy that you have shared your story because your message is comforting and encouraging.

I see that you are anticipating a kidney transplant in August. That is fantastic! My liver and kidney are from a deceased donor so I did not know when the transplant would happen. I cannot even begin to imagine what it feels like to know in advance. I send you my prayers for a comfortable recovery.

I would like to invite you to visit the Transplant Group. There are others who are sharing about their transplants as donors and as recipients. Know that you are welcome to enter into any of the conversations at anytime.
Transplant Discussions – https://connect.mayoclinic.org/group/transplants/

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ROSE MARY HOW LONG HAVE YOU HAD TRANS PLANT?

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@bdade59

ROSE MARY HOW LONG HAVE YOU HAD TRANS PLANT?

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@bdade59, I have had my transplanted kidney since April 2009.
My liver disease affected my kidneys, and they failed suddenly. So I never had CKD. But I do need to take good care of this precious kidney.
When my kidneys failed, I was on dialysis for 9 weeks until my transplant. My kidney is healthy (so is liver).
I have labs drawn every 3 months, and an annual exam.

bdade59, If you want to direct your question to someone, you just have to put the @name at the beginning of your message. Thah way they will get email notification. (capital letters could be confused with yelling or anger)

How are things going for you?

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@gingerw

I was diagnosed with CKD about 15 years ago. About 10 years it progressed to Stage 3. I am now 3b, hovering about 32% for last 1.5 years. The cause of my CKD is a very rare disorder where collagen buildup is blocking the filtering components. I placed myself on a fairly strict kidney diet, and mesh it in with a gout friendly diet. No oranges/bananas/potatoes/tomatoes/pork/purines/shellfish, etc. While the Drs said it wasn't necessary, I said it was, to help control any decline. My advice is to be proactive in your treatment, don't wait for the medical team to tell you next step.

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@gingerw, I agree that we need to speak up, and to listen to our bodies. Good for you for knowing when something 'just doesn't feel right'. I have a PCP who knows me well enough and when I tell him something 'just doesn't feel right' , he listens and is ready to act or to refer me to someone who can help me.

Liked by claudiabrende

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@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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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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