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 Support Group.

Good Morning, @bdade59. I want to extend a welcome to Mayo Connect. I am happy that you have joined the Kidney/Bladder Group. I, also am living with one kidney, but mine is due to transplant. And so I think that I can understand what you mean when you say that your 'world has come to a stand still'.

Here is some information that I want to share with you about CKD
https://www.mayoclinic.org/diseases-conditions/chronic-kidney-disease/symptoms-causes/syc-20354521
And here is a chart about the stages of CKD..
https://www.mayoclinic.org/diseases-conditions/end-stage-renal-disease/diagnosis-treatment/drc-20354538

Here are a couple of discussions where members have talked about Stage 3 CKD .
https://connect.mayoclinic.org/discussion/3rd-stage-kidney-disease/

https://connect.mayoclinic.org/discussion/stage-3-ckd/

bdade59 Can you tell me what your doctor has said is causing this condition - Is there an underlying cause? What has your doctor told you to do in order to protect your kidney?

Rosemary

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I have had stage 5 CKD for 3 years now. Mine is the result of atypical hemolytic uremic syndrome. The aHUS was a reaction to the chemo I received for pancreatic cancer. Once the aHUS was cured, I have not had any further deterioration of my kidneys. I am not yet on dialysis, but my nephrologist keeps telling me I may need to start at any time. I was at Mayo in June. Still cancer free after 3 1/2 years. Started talking about a kidney transplant. I can start the testing process, but I can't have a transplant until I am cancer free for five years.

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Hi, @marvinjsturing. Welcome to Mayo Clinic Connect. Sounds like you've had quite a journey thus far with the chronic kidney disease (CKD) and other conditions. Good to hear that the deterioration of your kidneys stopped after the Atypical Hemolytic Uremic Syndrome (aHUS) was treated.

Hoping that here you can meet @rosemarya @bdade59 @shiteh @katem @cehunt57, and that they will have some input on your situation as you look at possible future dialysis and kidney transplant.

How are you feeling about the prospect of potential dialysis in the future?

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@lisalucier

Hi, @marvinjsturing. Welcome to Mayo Clinic Connect. Sounds like you've had quite a journey thus far with the chronic kidney disease (CKD) and other conditions. Good to hear that the deterioration of your kidneys stopped after the Atypical Hemolytic Uremic Syndrome (aHUS) was treated.

Hoping that here you can meet @rosemarya @bdade59 @shiteh @katem @cehunt57, and that they will have some input on your situation as you look at possible future dialysis and kidney transplant.

How are you feeling about the prospect of potential dialysis in the future?

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After having pancreatic cancer, I thank God everyday that I am still alive. When dialysis becomes necessary, I will do it because it will help me to enjoy the life I have. Because of my Whipple procedure, I will not be able to do peritoneal dialysis. I had fistula surgery 2 1/2 years ago. My family physician says I should go to a dialysis center (there is one 8 miles from home) but my nephrologist says I am a good candidate for home hemodialysis. I have already attended a class on hone hemodialysis at Da Vita. What is most frustrating for me is that the diet for diabetes does not match my diet for CKD.

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@lisalucier

Hi, @marvinjsturing. Welcome to Mayo Clinic Connect. Sounds like you've had quite a journey thus far with the chronic kidney disease (CKD) and other conditions. Good to hear that the deterioration of your kidneys stopped after the Atypical Hemolytic Uremic Syndrome (aHUS) was treated.

Hoping that here you can meet @rosemarya @bdade59 @shiteh @katem @cehunt57, and that they will have some input on your situation as you look at possible future dialysis and kidney transplant.

How are you feeling about the prospect of potential dialysis in the future?

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@marvinjsturing, I admire your strength and your attitude. It sounds to me that you are staying on top of your care by educating yourself for what might lie in your future.
I found a discussion where some members have shared your exact words about their confusion with diets. Have you consulted with a nutritionist for guidance? Your nephrologist should be able to schedule you with one.

In Diet for diabetes and stage 4 CKD - very confusing - some others have shared similar concern, You might give it a look.
https://connect.mayoclinic.org/discussion/diet-for-diabetes-and-stage-4-ckd-very-confusing/

Rosemary

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@bdade59 and @marvinjsturing I admire your strength, courage and faith in dealing with your cancer journeys. I have never faced anything like that but I want to encourage you in your CKD situations. I’ve been bouncing between stage 3 & 4 CKD for the past 2 years due to type 1 Diabetes since 1975. I had a pancreas transplant in 2005. That helped improve and stabilize some of the complications of Diabetes such as neuropathy, vision and kidney problems. In 2016 I started having a decline in kidney function and met the criteria for pretransplant evaluation. I’ve already experienced a transplant and it was like receiving my own personal miracle so I was not concerned about having a kidney transplant. In fact I insisted for the longest time that I’d rather die than have any kind of dialysis. I’ve since been convicted of the error of this thinking because as a Christian believer both my life and death are in God’s hands. There are reasons for everything: our diseases, medical treatments & interventions etc. Perhaps part of the purpose is to encourage one another along the way. I have routine local follow up with endocrinology & nephrology later this month, then a return to Mayo for an annual pretransplant evaluation review. I am listed with inactive status currently because my GFR is too good! I’m still not on dialysis and I’m still looking for a living donor. Trying to trust God that what will be, will be ok. The mentors and moderators at Mayo Clinic Connect are a wealth of information and have posted some good helpful links in this thread.

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@lisalucier

Hi, @marvinjsturing. Welcome to Mayo Clinic Connect. Sounds like you've had quite a journey thus far with the chronic kidney disease (CKD) and other conditions. Good to hear that the deterioration of your kidneys stopped after the Atypical Hemolytic Uremic Syndrome (aHUS) was treated.

Hoping that here you can meet @rosemarya @bdade59 @shiteh @katem @cehunt57, and that they will have some input on your situation as you look at possible future dialysis and kidney transplant.

How are you feeling about the prospect of potential dialysis in the future?

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Thank you so much! You helped me more than you would ever know!!

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@cehunt57

@bdade59 and @marvinjsturing I admire your strength, courage and faith in dealing with your cancer journeys. I have never faced anything like that but I want to encourage you in your CKD situations. I’ve been bouncing between stage 3 & 4 CKD for the past 2 years due to type 1 Diabetes since 1975. I had a pancreas transplant in 2005. That helped improve and stabilize some of the complications of Diabetes such as neuropathy, vision and kidney problems. In 2016 I started having a decline in kidney function and met the criteria for pretransplant evaluation. I’ve already experienced a transplant and it was like receiving my own personal miracle so I was not concerned about having a kidney transplant. In fact I insisted for the longest time that I’d rather die than have any kind of dialysis. I’ve since been convicted of the error of this thinking because as a Christian believer both my life and death are in God’s hands. There are reasons for everything: our diseases, medical treatments & interventions etc. Perhaps part of the purpose is to encourage one another along the way. I have routine local follow up with endocrinology & nephrology later this month, then a return to Mayo for an annual pretransplant evaluation review. I am listed with inactive status currently because my GFR is too good! I’m still not on dialysis and I’m still looking for a living donor. Trying to trust God that what will be, will be ok. The mentors and moderators at Mayo Clinic Connect are a wealth of information and have posted some good helpful links in this thread.

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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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@cehunt57

@bdade59 and @marvinjsturing I admire your strength, courage and faith in dealing with your cancer journeys. I have never faced anything like that but I want to encourage you in your CKD situations. I’ve been bouncing between stage 3 & 4 CKD for the past 2 years due to type 1 Diabetes since 1975. I had a pancreas transplant in 2005. That helped improve and stabilize some of the complications of Diabetes such as neuropathy, vision and kidney problems. In 2016 I started having a decline in kidney function and met the criteria for pretransplant evaluation. I’ve already experienced a transplant and it was like receiving my own personal miracle so I was not concerned about having a kidney transplant. In fact I insisted for the longest time that I’d rather die than have any kind of dialysis. I’ve since been convicted of the error of this thinking because as a Christian believer both my life and death are in God’s hands. There are reasons for everything: our diseases, medical treatments & interventions etc. Perhaps part of the purpose is to encourage one another along the way. I have routine local follow up with endocrinology & nephrology later this month, then a return to Mayo for an annual pretransplant evaluation review. I am listed with inactive status currently because my GFR is too good! I’m still not on dialysis and I’m still looking for a living donor. Trying to trust God that what will be, will be ok. The mentors and moderators at Mayo Clinic Connect are a wealth of information and have posted some good helpful links in this thread.

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@cehunt57, I had a doctor's appointment on Thursday, May 8, 2014. Because of my symptoms, my doctor scheduled a CT scan for the next day. Instead of waiting several days for the test results, I was back in my doctor's office 15 minutes after the scan. By that afternoon, I had appointments scheduled at Mayo in Rochester. Two days after my initial diagnosis, my wife and I were supposed to fly to Vegas for a conference. We thought we had a morning flight, but found out it was an evening flight. So we went to church with our son. That morning, the preacher's sermon was from Romans 8:28 - All things work together for the good of those who love God. The journey was not easy - surgery. 6 months of chemo and then another year of treatments for my kidneys. But we knew from the very beginning that God was going to be with us. As a side note: 3 weeks after preaching that sermon, the pastor's wife died of pancreatic cancer. God has proved himself to be faithful time after time in our journey. Stay strong in your faith.

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@cehunt57

@bdade59 and @marvinjsturing I admire your strength, courage and faith in dealing with your cancer journeys. I have never faced anything like that but I want to encourage you in your CKD situations. I’ve been bouncing between stage 3 & 4 CKD for the past 2 years due to type 1 Diabetes since 1975. I had a pancreas transplant in 2005. That helped improve and stabilize some of the complications of Diabetes such as neuropathy, vision and kidney problems. In 2016 I started having a decline in kidney function and met the criteria for pretransplant evaluation. I’ve already experienced a transplant and it was like receiving my own personal miracle so I was not concerned about having a kidney transplant. In fact I insisted for the longest time that I’d rather die than have any kind of dialysis. I’ve since been convicted of the error of this thinking because as a Christian believer both my life and death are in God’s hands. There are reasons for everything: our diseases, medical treatments & interventions etc. Perhaps part of the purpose is to encourage one another along the way. I have routine local follow up with endocrinology & nephrology later this month, then a return to Mayo for an annual pretransplant evaluation review. I am listed with inactive status currently because my GFR is too good! I’m still not on dialysis and I’m still looking for a living donor. Trying to trust God that what will be, will be ok. The mentors and moderators at Mayo Clinic Connect are a wealth of information and have posted some good helpful links in this thread.

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I can feel your warm tone when I read you seem so thankful and so genuine I thank you for taking out the time to relpy back! I will keep the faith that's all we have! He first loved us.we all benefit from undeserved kindness ...Tie a Knot and hang On your story has encourage me thank you so much for sharing.

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