Living Long-Term at Stage 4 Kidney Disease

My mother lived for more than a decade with eGFR in the 20's. I remember values of 17, and 23, specifically.

I was able to live with slowly decreasing eGFR for more than a decade, and closer to 15 years. Much to the chagrin of my doctors, I was following a strict renal diet and really watching my numbers. They didn't feel it was needed. I did, simply put. And I credit taking an active role in keeping my function as good as it was for so long. My kidney issue is the result of an ultra-rare autoimmune kidney issue, and eventually it got the best of me.

It is my humble opinion, that as patients, we absolutely can make a difference in our quality of life when it comes to kidney function. We have to be proactive, and be our own advocate.
Ginger

Appreciate this response! As my kidneys decline, I keep thinking what an amazing organ. Although my GFR is declining, potassium, sodium, hydration, glucose and all the markers are normal. The only concern is secondary hyperthyroidism. But Vit. D is correcting that. I used to intermittent fast. Almost every day. Eat in an 8 hour window. But now I’m not sure that was a good thing, for kidney health anyway. My protein comes from plant sources, beans, nuts, milk, dairy. Once in a while I’ll eat meat, but rarely. Lots of water. I mentioned before, my disease is from long term lithium use (40 years). I still don’t know it was necessary to take lithium all that time, but I maintained the lowest dose. My GFR began dropping in 2014. It was always 60+ until then. Anyway, meds can make a big difference in kidney function.

I am stage 4 CKD due mainly to diabetes. My eGFR has bounced between 14 - 42 ever since 2016 when I was first evaluated for kidney transplant. I have so much to tend to for my diabetes (diet, exercise, insulin, blood sugar monitoring and high tech devices to manage …..) that that is my primary focus in physical self care. But I am also a Christian believer. I believe we are created in God’s image. We are so much more than just the physical. We need to care for the mental, psychological, emotional, social, spiritual…..etc. parts as well.

I'm 75 with stage 4 kidneys. I just keep going. Common Sense Guides Me😊

These comments have all been very helpful. I had radical nephrectomy in January. My GFR was 38 post surgery 60+ pre-surgery. I have controlled hypertension, not diabetic but creeping closer. I am 69 and feel good four months post surgery. I have been vegetarian since I was 25 so eating healthfully is a norm, however trying to drink up to 3 liters of water has been difficult. My mother had stage 4 CKD and lived to 95. Reading each comment about your own life with CKD is reassuring, thank you all very much. Blessings.

Hi
My EGFR for the last 9 yrs(since diagnosis) has been as high as 75 and as low as 48.
I just had my first cystatin c test. It came out at 34!!!!
Thats scary and leaves me wondering od my kidneys are taking a slide downwards.

Most of my other kidney related labs are normal or close to normal.

Can someone explain why the 2 egfrs are so different?

Thank you.

@siosal Usually most labs and nephrologists use the creatinine test for eGFR. This can be influenced by hydration/diet/stress/activity level and several other factors. Even the lab performing the test.

From what I have read, cystatin C test is not very influenced by body mass or diet, and can give a more accurate picture of true kidney function. @collegeprof, please correct me is I am wrong.

Have you spoken to your nephrologist about thr results of your latest tests, yet?
Ginger

Yes. She said she averages them which still leaves a scary drop in number for me.
Thank you for responding.

@gingerw @siosal Mirror mirror on the wall, what is the best kidney function test of them all? There is a 24 hour urine test which tests for kidney function that many nephrologists use.

The two common eGFR tests are Creatinine which looks at muscle mass for kidney function and Cystatin C which looks at the "cells" in your body to give a value of kidney function. The differences of the two as I am told by nephrologists is that the eGfR creatinine test can fluctuate which is why you may see different values over time. I am also told that this test is about 65% accurate for kidney function. It is popular with nephrologists, endocrinologists, and PCPs because nearly all are covered by insurance. The lab test for Cystatin C, on the other hand, may not be covered by your insurance company. Most nephrologists use this as it is more definitive in accuracy (about 95%) and quite stable. The eGFR calculation of Cystatin C is determined by age so the lab test is different from the creatinine eGFR. It is quite possible that you can be in Stage 3 of kidney function by using the creatinine eGFR method and Stage 4 of Cystatin C eGFR at the same time. Most nephrologists care deeply about Cystatin C results.

Not talked about on this forum for over 4 or 5 years is the Iothalamate Study, which is unique to Mayo Clinic and other advanced hospitals. It is perhaps one of the best methods of study that uses nuclear medicine and eGFR to determine the function of each kidney. Without going into tons of detail about this method, your nephrologist will review the data and discuss the results with you and provide further treatment. This is perhaps the most definitive treatment for kidney function tests in my opinion.

Thank you @gingerw for your answers and showing the importance of kidney function testing.