1. < Chronic Kidney Disease (CKD)
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Want to hear from others who have Stage 4 Chronic Kidney Disease (CKD)

Posted by anet @anet, Oct 21, 2019

My husband who is 75 is in stage 4 kidney disease according to his gfr. His last Gfr was 27. That sounds terrible to me, but his nephrologist says he is stable. He is not diabetic. His creatinine is 3.2, albumin 4.1. Phosphorus, sodium, calcium, potassium are all normal. His blood pressure is controlled by medication. He exercises by walking one and a half miles every day. He has two heart stents and takes cholesterol medicine. He has shortness of breath on occasion, but still does all of his normal activities like light yard work, fishing, dining out, going to church activities. I do think he sits too much, but try not to nag. He is not good about eating healthy, but is getting better. Maybe I am just worrying too much. Would like to hear from others in this stage of kidney disease.

Interested in more discussions like this? Go to the Chronic Kidney Disease (CKD) Support Group.

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sisuk25 | @sisuk25 | Feb 13 7:40pm
In reply to @jesussister "Hi I'm @Jesussis I too have CKD, stage 4. I'm 70 old and have metastatic secondary..." + (show)
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Hi I'm @Jesussis
I too have CKD, stage 4. I'm 70 old and have metastatic secondary breast cancer. My GFR is 18 and my creatinine is 2.7. I'm on a chemo pill, Verzenio which is very hard on my system. Dehydrated and diarrhea. This affects my GFR and my creatinine labs. All my other labs are in base range. So I continue to press forward in my healing journey.

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@jesussister

Wishing you the best with your health challenges. Stay positive and know that modern medicine is constantly making incredible new advances. My sister- in-law had breast cancer after being in remission for a number of years. After hearing from a number of healthcare places that they could no longer help her, she went to Mayo and lived about 5 more very good and normal years. She credited her stamina to her local pharmacist working closely with Mayo so she was not sick and was able to enjoy being with her family. God bless you!

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sisuk25 | @sisuk25 | Feb 13 7:51pm

I wrote a while back about my husband with a GFR of 28 when we first learned of his stage 4 CKD. After adopting a semi-CKD safe diet, his GFR was at 15 seven years later. Since he was approaching a dialysis number, he passed the kidney transplant eval and got a family kidney (5 months ago) at age 76. Good luck with this journey together.

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stuartbell | @stuartbell | Feb 13 8:33pm

How did you choose a Nephrologist? Most of the Mayo Nephrologists concentrate on transplants or dialysis.

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u4gmlglm | @u4gmlglm | Feb 22 9:20am

I have igan with a gfr 17. Fatigue for sure. Stomach issues. I am a patient at mayo but the lack of information is frustrating I found a site igan.org after a lot of research. Keep researching as the doctors and nurses are busy. I have swings in emotional health but probably a result of the steroids to reduce inflammation.

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stuartbell | @stuartbell | Feb 23 7:13am

unfortunately, this result is very similar to what I am seeing

I’ve had three neurologist, not at Mayo, over 10 years and none of them will take the time help me manage the disease.

I’ve gone to self management tried to reduce my weight and adjust my diet.

I have my first nutritionist appointment tomorrow and I’m hoping they can give me some more advice and maybe even point me toward a nephrologist that does more than talk about dialysis.

I’ve read about several potential medication’s, but with no one to talk to I have taken none

I have lost 30 pounds since I began self managing and much of my energy has returned and my mood is stabilized.

I have the ultimate diet, I just stopped eating. one meal a day plus fruit for stacks

I have not had a blood test since the weight loss but I’m planning one next week to see if it’s a result of any improvement for my low 20s GFR

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sultanvr | @sultanvr | Feb 23 3:15pm
In reply to @stuartbell "unfortunately, this result is very similar to what I am seeing I’ve had three neurologist, not..." + (show)
Profile picture for stuartbell @stuartbell

unfortunately, this result is very similar to what I am seeing

I’ve had three neurologist, not at Mayo, over 10 years and none of them will take the time help me manage the disease.

I’ve gone to self management tried to reduce my weight and adjust my diet.

I have my first nutritionist appointment tomorrow and I’m hoping they can give me some more advice and maybe even point me toward a nephrologist that does more than talk about dialysis.

I’ve read about several potential medication’s, but with no one to talk to I have taken none

I have lost 30 pounds since I began self managing and much of my energy has returned and my mood is stabilized.

I have the ultimate diet, I just stopped eating. one meal a day plus fruit for stacks

I have not had a blood test since the weight loss but I’m planning one next week to see if it’s a result of any improvement for my low 20s GFR

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@stuartbell Would love to hear if your GFR goes up and how it goes with your nutritionist. I'm still trying to find one for my spouse.

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stuartbell | @stuartbell | Feb 24 11:17am
In reply to @sultanvr "@stuartbell Would love to hear if your GFR goes up and how it goes with your..." + (show)
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@stuartbell Would love to hear if your GFR goes up and how it goes with your nutritionist. I'm still trying to find one for my spouse.

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@sultanvr

I just finished an excellent virtual appointment with Ashley Steidman thru Nourish. You can reach them via: https://www.usenourish.com/

She is a supportive nutritionist - reviewed my symptoms, reviewed my diet records and made several positive recommendations for additional foods.

We discussed my "hunt" for a supportive Nephrologist and she suggested I look at Interwell Health here in Florida. She is also going to look at Nephrologists her other CKD patients uise and see if any are recommended for me.

I have to wait to see how my diet works - but I feel very good.

I recommend you contact Nourish and discuss your special needs.

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