MORE NEWS ON NEW EGFR CALCULATION BEING ... - Early CKD Support

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MORE NEWS ON NEW EGFR CALCULATION BEING CHANGED

RickHow profile image
14 Replies

I recently posted how suddenly my egfr was increased by 3 to 5 due to the hospitals and labs in my area using a new formula to calculate egfr. They used to calculate it based on Black or White. (which I always wondered what they did for Asian and other races?) Instead they eliminated the usage of race. The formula changed to produce an average between what they usually calculated for black and white. The old formula was based on the belief that in general blacks are more "muscular" than whites and therefore have a higher creatinine level. But as we all know, every person on earth, regardless of race, come in all shapes, sizes and muscularity. FINALLY they have recognized that and elminated race. As I say this was at my local labs and hospitals. I just saw that now the National Kidney Foundation and the American Society of Kidney doctors is recommending the same change. So many will see a change in your egfr levels. To me this just further illustrates that all the focus on egfr, stages, needs even further examination. My own doctors, my own kidney doctor, tell me to ignore egfr. That is incorrectly labels people with kidney disease, overly frightens people who are perfectly normal, etc., etc. They tell me just simply watch and monitor my Creatinine level. This is the simplest, easiest way to determine the functionality of your kidney level. But anyway here is the news from National Kidney Foundation: eGFR is an estimate of how well your kidneys are working. The way eGFR is calculated will be changing. Currently the test considers your age, sex and whether you are African American, among other things. A task force led by the National Kidney Foundation and the American Society of Nephrology is working on recommendations that may remove African American race as a factor in the eGFR calculation. The task force has been seeking the input of stakeholders. AKF advised the task force that eGFR equations should be an unbiased estimate of kidney function. This would make sure that every person will receive appropriate and equitable care. When the NKF-ASN task force makes its recommendations, AKF will promptly review them and then update our educational materials.

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RickHow profile image
RickHow
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14 Replies
Celtic profile image
Celtic

Interesting Rick! I could do with a calculation that has an upward spiral however it is calculated, as since heart surgery a few months ago (sadly not 100% successful) my eGFR has dropped frighteningly low. It was stable at 44% for a few years but the latest reading was 19%!

RickHow profile image
RickHow in reply to Celtic

Oh my you have had quite a drop in your egfr. Could it be that such a drop is due to some kind of medications, etc., that you are taking and not really a decline in your kidney function? I sure hope so. I did read on the internet that it is quite common after heart surgery (especially bypass) for large increases in Creatinine levels and kidney decline. I think it mentioned something about at least 30% of such people experience this decline. But that over time a lot of them return to normal levels.I read:

Damage may be caused by alterations in blood flow that occur as a result of being placed on a heart-lung machine during surgery, or damage may occur when tiny bits of plaque break off of the walls of blood vessels, travel to the kidneys, and block its tiny blood vessels Oct 15, 2006.

When I had my kidney removed and my egfr dropped dramatically, my kidney doctor said that in can take a year to 18 months (the older you are the longer it takes) for a kidney to "regrow" the damaged filters and blood vessels.

Let us hope that is your case and soon you will see some improvements.

Celtic profile image
Celtic in reply to RickHow

Thank you for your kind response, Rick. It seems my function reduced due to the event that led to the heart surgery, ie waking up unable to breathe one morning was ambulances to hospital where I spent the first 2-3 weeks in a Covid-type respirator mask almost 24 hours. a day whilst awaiting a bed at the heart hospital for surgery. They said if they did open heart surgery my kidney would probably fail so they did surgery be going in through the groin and up into the mitral valve of the heart to try and close a large leak with clips (Mitral Clip surgery). However the valve was so open they only had enough space to fit 2 clips whereas if they had managed to get in another clip the surgery may have been more successful. Six weeks later when I came out of hospital I found I was unable to walk without a frame and my breathing is stiill poor - ok when I’m sitting down but a bit rubbish when I do anything. So disappointed as I was led to believe that I would be so much better after the op. If this is a fine infection, I have no pain luckily but my urine is very cloudy - a sure sigh of infection. I’ve had a urine specimen taken today as part of annual monitoring together with a blood test but just wondered if anyone here could recommend an antibiotic before I hear the result. They’re even investigating me for cancer due to my symptoms of heavy weight loss, nausea and occasional vomiting, all of which started in hospital. Before this ‘event’ I was caring for my terminally ill husband so you can imagine the state we are both in now!

RickHow profile image
RickHow in reply to Celtic

Things turned into a mess for you quickly. BUT, you have to think that perhaps over time there will be improvement. My kidney had a huge cancer tumor on it. The entire kidney had to be removed. This caused my kidney function (just one left) to decline. It took time but it improved. Not 100% by any means. I receive cancer treatments every 3 weeks because the original cancer spread to my bones. This caused me to have a hip replaced (it had a large tumor). It ate away 2 of my lumbar vertebrae and I had to have braces put in my back along with cement into the damaged vertebrae. I then needed double hernia surgery. All this in last 2 or 3 years. BUT the body is an amazing thing. When we think we are down and out there still are chances for improvements. But they do not happen overnight. Patience and as positive an attitude as you can possibly force yourself to have, does help. It is good you had a urine test. It may sound silly but lets hope it is an infection, because this will be easily fixed (antibiotics) and hopefully your egfr improved. Keep us posted.

Celtic profile image
Celtic in reply to RickHow

Rick, you’ve been through such a lot but thank goodness it sounds as though you have ‘come out the other side. You are quite an inspiration.Unfortunately, if I do have a urine infection, the news isn’t good. The antibiotics used with such a low eGFR can be further harmful with Trimethoprim being life-threatening. I have had just the one kidney for over 60 years now, having had the right one removed when I was 12. So it has served me really well. However, sadly it hasn’t been able to withstand this latest heart event. You stay well now, Rick - that positive attitude is so inspirational.

RickHow profile image
RickHow in reply to Celtic

My cancer condition is stage 4 (terminal). The treatments do not cure, but just slow growth of cancer. But to spend whatever days, months, years left moping, worrying, just existing and not enjoying (as best I can) my remainder of time, would just be a total waste of that time. Every one of us, regardless of health, never know at what moment will our time be up. Sure it is unfortunate to know approximately when it will happen, but it is best to live, to keep the mind occupied with good things, enjoyments, and not adapt a "oh poor me" attitude. In fact I think the more positive attitude actually helps your health. I remember on one visit to my oncologist I said to here "at this point I'm not after quantity of life, but am after quality of life". She stopped and looked at me almost tearfully. She said how she so strongly wished more of her patients had that approach. That so many are so sad and worried and dreading every day because they are nearing the end, and just making those days meaningless.Here is a GREAT link for you about antibiotic treatments for UTI for people with low renal function. It lists 1st choice and 2nd choice recommended antibiotics.

nhstaysideadtc.scot.nhs.uk/...

orangecity41 profile image
orangecity41

Thank you for sharing the information on changing calculation of eGFR.

Rowdy17 profile image
Rowdy17

Thanks for this. I wonder if this is the same in the UK.

RickHow profile image
RickHow in reply to Rowdy17

I bet once this change starts to get approved by various kidney foundations, organizations, groups, it will become more and more the norm, worldwide. Next time you go for a blood test, ask about it. As I said, in my case I did not even know they made this change. I only noticed an improved egfr and only when I asked my doctor was it explained to me.

Rowdy17 profile image
Rowdy17

Will definitely ask at my next blood test.

Room258 profile image
Room258

So have eGFR catagories become a victim of 'wokeness" also?

RickHow profile image
RickHow in reply to Room258

I think it is actually a realization that the "old" egfr formula is not good. Think of the people who are automatically labelled as CKD Stage 1 or 2, yet the labs report that anything over 60 is normal. And the egfr formula does not take into account what medications the person takes, or if they have other diseases (such as diabetes, or cancer, or, or, or), if a person has only one kidney, etc. AND it does not take into account if a person is muscular (thus higher creatinine level) or average, or ill, or, or, or. That is why they first started having different formulas for black, or non black. That they thought blacks are more muscular. Which while not raciest certainly is not accurate. Blacks come in all shapes and sizes just like all races. Perhaps "wokeness" initiated a closer look at the formula. But this change is good I think. In fact there is a formula that is used far less often that DOES require to know your height and weight. This almost ALWAYS produces a higher egfr level. Who knows. I know even my kidney doctor tells me "forget egfr entirely". Simply monitor your creatinine level as the best indicator of how your kidney(s) are doing their job.

Room258 profile image
Room258

Are they suggesting that the previous metrics were racist,and the new Egfr metrics are more "woke"?

RickHow profile image
RickHow in reply to Room258

Could be, but I think (opinion) it was just a realization that the formula had flaws. The change actually made the egfr for non-black individuals better. So it was a good adjustment for non-black. And when you stop to think about it, imagine all the races in the world. Asian, Caucasian, Latin, African American, Australoid, Native American, Native Hawaiian. Did ever make much sense that the egfr for black should be calculated differently than the entire rest of the world?

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