I refuse to get hung up on GFR

[Dal1959]

I fully understand the theory and "science" behind it but I am still not buying it. I look at it but cannot take too much stock in this number. Certainly not as a "stand alone" number. I am a 57 year old, white male with pretty decent muscle tone. Am I to understand that if a 57 year old, black man, made up of nothing but skin and bones has the same creatinine level as me, his GFR is going to be 6 points higher? That is just silly.

I have two nephrologists. I see one for my tests, progress and treatments and a second for back-up opinion and consultation. The second Dr. is a "old time" Dr. and is semi - retired now but has worked at Mayo clinic and taught at Emory in Atlanta for 17 years. He tells me that "GFR means nothing" He states that if you want to know your approximate kidney function remaining, you take 100 and divide it by your creatinine level. Example; my last test showed my creatinine was at 2.27. 100 divided by 2.27 = 44% kidney function. He also states to use as average due to regular fluctuations of 10 - 15% from test to test. Has anyone else heard of this "formula" before?

However, he also says that at my age, at my current level, I could easily live the rest of my life without dialysis or a transplant. Sometimes you just need to hear that stuff.

[thobson]

From my experience, I don't think either Creatinine or the GFR is a realistic depiction of your kidney function. I believe the only real way is to take a biopsy of your kidney and analyze it that way. However, taking periodic biopsies of a kidney with lower function puts more stress on the kidneys than is really necessary. So, long story short, doctors must rely on the creatinine and GFR to give them a reasonable idea of the kidney function.

With that said, can you strictly follow those numbers? Unfortunately, no. A better number doesn't necessarily mean improved function. This only means that the variables might have been slightly different this time than the last time.

Ok, so the numbers are basically useless, now what? Now you need to listen to your body and how you actually FEEL. Does your lower back (approx. location of the kidneys)? Do you feel tired? Do you get upset often? If you're on dialysis, how well is it working? Are you filtering a lot?

A quick background on me: I was on dialysis for 2 years and was able to get off of it because I changed my diet. I changed to follow a Paleo diet which is very similar to eating clean. I thought, if I ate clean, then my kidneys wouldn't have to work as hard to clean my body. On days I didn't eat clean, I felt tired and my back would hurt me. So I officially switched to this Paleo diet and got off dialysis completely. My GFR still says 15% and my creatinine is still 4.0, but I feel amazing. I have so much energy. I can live a normal llife!!

Check this page out for more info: https://www.experiencepaleo.com/best...-a-paleo-diet/

[Dal1959]

good feedback, thobson. thank you. Numbers, numbers, numbers. I get it, but diet, exercise and how you feel are equally or more important in some cases. Getting off dialysis is huge, congratulations!! I am dieting and eating right now in an attempt to avoid it all together.

[Lin1263]

I am not sure how your G.F.R. calculator is used. My creatinine chart is read in umol/L with a range on the chart of 45-90. My creatinine since November, 2014 has been from 66-94. My last test in October 2016 showed it went down to 81. My G.F.R. tests were 60-87 and my last test in October was 72. Sometimes G.F.R. and creatinine are the same number,sometimes creatinine is the highest number and sometimes G.F.R. is the highest number. So on both charts is a large range of 30 in 2 years. A example on a test my creatinine was 73 and G.F.R. 73 in November 2014. In January 2016 my G.F.R. was 73 and my creatinine 82. What does this mean and how do I use your charts?

[KelseyAtDaVita]

I am not sure how your G.F.R. calculator is used. My creatinine chart is read in umol/L with a range on the chart of 45-90. My creatinine since November, 2014 has been from 66-94. My last test in October 2016 showed it went down to 81. My G.F.R. tests were 60-87 and my last test in October was 72. Sometimes G.F.R. and creatinine are the same number,sometimes creatinine is the highest number and sometimes G.F.R. is the highest number. So on both charts is a large range of 30 in 2 years. A example on a test my creatinine was 73 and G.F.R. 73 in November 2014. In January 2016 my G.F.R. was 73 and my creatinine 82. What does this mean and how do I use your charts?

Hi Lin1263, those are all great questions. I'd recommend reaching out to your local care team to help clarify those numbers for you. Thanks!

[Lin1263]

I got referred to a internal medicine specialist that works on patients with problems with their organs, including kidneys,heart,lungs,blood clots. etc. My kidneys have stopped producing the hormone that makes hemoglobin and i was given a hormone replacement shot 3 month a go. I have anemia because of my kidneys and not from lack of Iron in foods. My legs pain in the thighs 24 hours a day and was told today it is because of my kidneys,so my hospital is referring me to this person.

[Paigeypaige]

So good to hear the different opinions, my Nephrologist says I am stage 3 but my Urologist says she doesn't understand how I could be a three, she said in spite of how large my kidneys are they have very good function. I have always focused on good eating and I will continue.

[steve62]

l feel you may be in a stage of not accepting your situation. since your older dr. is not as informed by new technology may give you a rationalize safe feeling. please be careful. i am black and it is documented that we do have ckd more than other races. as you get older your gfr will get worse. i and 3 other immediate family members have ckd, they have all passed away before 68. we all experienced ckd differently. i hope you never have to go on dialysis. it is depressing yet you need it to live, it is not an option.you choose to try to be positive. every person is different. no one wants to have serious heath issues...years ago there was no davtita,, no meds to help you nor support systems in place...always stay with latest info.

[asalvio]

Hi im a stage 111 patient Does anyone use magic kitchens renal diet? it is recommended here on davita?

[alice54]

I have stayed steady at GFR # 30 for 3 years now my GFR has dropped to 28. My Creatinine is 1.65 higher then before. My Bun/Creatinine Ratio is at 18. Albumin is 4.1. My Bun is 29. My late brother died from CKD and was on dialysis for 3 years and chose to go off of it and passed. He said if he could have one good day a week he would continue but that one day became less. I am 84 and also have heart disease. Is there a diet to help with the GFR number. Lately am not sleeping good my legs are my problem..hurting et. Presently I am only seeing a Nurse Practitioner. Thanks for listening.

[Jshukert]

I believe the best way to control your gfr through diet is to eat a moderate amount of protein and monitor your potassium and phosphorous. The numbers are on this site. Good luck to you!

[alice54]

Thank you it means a lot that you shared. I once knew the numbers but have been away for while. I will check again. Good luck to you also!

[KelseyAtDaVita]

I have stayed steady at GFR # 30 for 3 years now my GFR has dropped to 28. My Creatinine is 1.65 higher then before. My Bun/Creatinine Ratio is at 18. Albumin is 4.1. My Bun is 29. My late brother died from CKD and was on dialysis for 3 years and chose to go off of it and passed. He said if he could have one good day a week he would continue but that one day became less. I am 84 and also have heart disease. Is there a diet to help with the GFR number. Lately am not sleeping good my legs are my problem..hurting et. Presently I am only seeing a Nurse Practitioner. Thanks for listening.

Hi alice54, thanks for reaching out here!

I'd recommend speaking to your local care team for any specific medical or dietary questions as everyone's needs are different. However, there are some general guidelines when following a kidney-friendly diet. Here's an article from DaVita.com that you may find helpful while learning about a kidney-friendly diet: https://www.davita.com/kidney-diseas...-and-nutrition.

DaVita.com also offers over 1,000 kidney-friendly recipes to choose from!

[whome65]

I respect your beliefs but not believing in the GFR is the major reason why I have said "Goodbye" to my former nephrologist and will begin seeing someone else. My PCP is up on the curent testing/diagnosis methods and assures me that she can handle any issues to keep me focused on my treatment until I can find a new one. The former nephrologist failed to notice and mention to me the significance of a continual dropping of my GFR on 9 months of lab tests. This was not his secret to keep from me. I went online and did my own investigating and found that that is (currently) the gold standard for CKD. I hope your decision works out well for you.

[starchaser]

My Nephrologist said I worry to much. I like math and perform linear regression and trend analysis of my blood tests.
He said I'm my own worst enemy. Stop the brain work and just be yourself. I said my GFR is only an estimate. he said, that's true.
In my case I don't have any of the symptoms that would necessitate dialysis. He proceeded to show me quite a few other people
(names were hidden) who had levels worse than mine and had no dialysis and they are still alive after being diagnose Level 5
ESRD for years and they are still alive and functioning. As long as I pee OK and have no swelling you are doing fine,