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Living Long-Term at Stage 4 Kidney Disease
Hi,
I've contributed to several discussions regarding kidney disease at various stages. I'm interested in experiences living long-term at stage 4. My eGFR (creatinine) is 27. I've gone to 25, 33 for over a year. My c cystatin GFR is 35. My PCP and my nephrologist have said many people live years at this level. If you eat a kidney healthy diet, keep BP at normal levels it's possible. I don't have symptoms. I feel the same as when my GFR was 60+. The only reason for alarm was my blood test results. I have a first cousin who's lived a normal life at eGFR 20 for 10 years. Her kidneys started failing after taking ibuprofen daily for many years. She's very careful with her diet and lifestyle but for the most part, a normal life.
Thanks!
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I appreciate this response. My c cystatin test GFR was 35. Taken at the same blood draw, my creatinine GFR result was 27. That may not seem a big difference, but it puts me in 3rd stage rather than 4th stage which means a lot to me.
It seems more often c cystatin results are lower than creatinine. Is this the case?
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2 Reactions@mrainne You will probably find over time that your eGFR Creatinine fluctuates but it can be higher, lower or the same as the Cystatin C lab test in terms of specific stage. As I said, I have found personally that Cystatin C is very stable, and my nephrologist treatment and my awareness of this lab test makes me watch what I eat and how much liquid I consume daily. Remember, Cystatin C is unique as its eGFR is determined by age. I had a nephrologist one time who could care less about the creatinine eGFR as compared to the true value of Cystatin C stage, but I believe it is useful as a comparison of body muscle mass.
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2 Reactions@collegeprof A couple of years ago, I had a "split kidney function" test, that included a complicated examination and dye injection. It all had to be cleared by my nephrologist and oncologist beforehand. Measuring to see how each kidney was functioning, it revealed both were about the same. And due to my current brain fog, I cannot recall the reason for the test...
I have only had the creatinine eGFR testing done. But anything that will give us consistent and accurate results is tops in my book! We as patients should remember our hydration, diets, activity level, and even where the labs tests are run, in watching the trends for our kidney function.
Ginger
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8 Reactions@gingerw The only test that I am aware of is the Iothalimate Study which is nuclear in nature and injected in the muscle of your upper arm. It is radioactive material like a dye called "radiotracer" and excreted into the urine by globular filtration. Again, the object is to test each kidneys function or "split kidney" function as you call it.
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3 ReactionsI bet that is what it was, then. I know they forgot to tell me about stopping one medication, and it had to be rescheduled.
Ginger
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3 ReactionsCystatin C tests should be the gold standard for determining kidney function. I’ve had several major surgeries and “gold standard” was always used by medical professionals. I would think gold standard for who? Patients panic when they see fluctuations in creatinine kidney function. I did. I’d think did I drink enough water, exercise too much that made my muscles excrete creatinine, did I stress the kidneys from something or other? That’s not how it works. Yes, eat wisely, exercise, drink water. Ok. But to hang your emotions on every time you get a blood draw? Find the stability. C Cystatin seems to provide stability.
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4 Reactions@mrainne The main reason, in my opinion, that Creatinine eGFR is so popular is that it is accepted by nearly all insurance carriers so all PCPs and specialty physicians prescribe it for labs. For Cystatin C, it is the better alternative and "gold standard" for nephrologists but unfortunately, it is not accepted by some insurance companies where one lab test could range to several hundred dollars. You are so right that panic and stress are involved, but one must look at your lab results over time rather than one or two instances as it is the "trend" that makes the difference of relief.
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4 ReactionsNewly diagnosed as diabetic and stage 4 ckd. The diets for each cancel the other out, so I have almost no options for safe foods to eat. I know ckd is terminal so it will kill me, but it looks like my diet is going to be so restricted as to be nearly nothing. I am feeling hopeless.
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2 Reactions@berns3 Hi, many people, especially elders, have multiple conditions, so it is a balancing act…i am watching both sugar and kidney #s and find that there are plenty of foods to eat, especially veggies and fruits- and many simple ways to prepare them…my kidney situation and sugar #s both improved by dietary care (along with hydration and mild exercises). I go low on pasta/bread and eat more quinoa….i go light on protein but have some everyday for overall health—and love some plant-based proteins like tofu (with veggies)…i allow for truly tiny treats here and there— and have been able to get better blood #s. There’s a lot of info out there to sort through…don’t let online hustlers tell you they have miracles—we can do better without them.
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6 Reactions@berns3 Welcome to Mayo Clinic Connect! As @nycmusic mentioned, combining food plans to cover multiple health situations is a challenge, but doable. It takes time and effort on your part.
And, sorry, I don't agree with you that ckd is terminal. What has led you to that thought?
Ginger
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