Standards for measuring Kidney Function - Kidney Disease

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Standards for measuring Kidney Function

Blackknight1989 profile image
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I have noticed several folks saying that creatnine and BUN are better measures to help determine or define CKD levels or current kidney function. I just wanted to point out that the standard for diagnosis and for measuring CKD levels do not include these measures. Instead all the reputable kidney sites, NKF, AAKP and NIDDK use eGFR and Urine Albumin-to- Creatinine Ratio (UACR). More importantly the American Society of Nephrologist and the International Society of Nephrologist use only eGFR and UACR.

I am not trying to be a smart ass, I only want to pass the information along as the purpose of this forum is to provide support to those who are new or have concerns to/with CKD. If we pass along the wrong information to those who don’t research for themselves this will only confuse them more or worse have them focused on incorrect or wrong information.

Link: niddk.nih.gov/-/media/Files...

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Blackknight1989 profile image
Blackknight1989
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orangecity41 profile image
orangecity41NKF Ambassador

Thanks for sharing this link. It is much information and helps to understand CKD.

Blackknight1989 profile image
Blackknight1989 in reply to orangecity41

My pleasure. Glad it was helpful!

Bond-007 profile image
Bond-007

Keep being a smart-ass because I don’t want to be a dumb-ass. Thank you.

Blackknight1989 profile image
Blackknight1989 in reply to Bond-007

I don’t care who you are, that’s funny right there!

Marvin8 profile image
Marvin8

Nephs only use BUN if they don't have access to UACR info. And some nephs will only look at UACR from a 24 hr collection instead of spot urine. As for eGFR, there are several different ways to measure it, creatinine being one, cystatin-c being another, and a combined formula being yet another. Many nephs are also just coming around to accepting that the combined formula is the closest yet to actual GFR measurement.

Blackknight1989 profile image
Blackknight1989 in reply to Marvin8

I’m sorry Marvin8 I don’t mean to be a dick but that is just not what the research says nor what most nephrologist should be doing as they can misdiagnosis kidney function. See my 4 posts below and here is an additional quick fact:

Why use an estimated GFR instead of simple creatinine?

Serum creatinine may be increased or decreased due to changes in muscle mass rather than changes in kidney function. In these situations, the serum creatinine may over or underestimate kidney function. Estimating equations utilizing serum creatinine include variables which are related to muscle mass (age, gender, and race) and may provide a more accurate indication of kidney function.

Link: niddk.nih.gov/health-inform...

Sophiebun11 profile image
Sophiebun11 in reply to Blackknight1989

BUN can be normal if only one kidney is failing from a disease. Also meds make the BUN abnormal causing more nitrogen so harder work even on normal kidneys, so can liver abnormalities. I wouldn't rely on it alone, but it is part of the bigger picture.

Marvin8 profile image
Marvin8 in reply to Blackknight1989

I don't think you're being a dick at all. You may have simply misinterpreted what I meant to say. I'll try again; Most nephrologists will simply look at your creatinine levels, UACR, serum protein, and a few other electrolytes to determine the state of your kidneys. Is that enough? Probably not. It's simply old school. Most older nephs don't put much faith in the equations because they are numerous and sometimes conflict. Heck, they can't even agree on which exogenous indicator (inulin or iohexol) is best used to measure actual GFR...which nobody does anyway. Most never bother to look at cystatin-c. eGFR is based on estimating equations that seem to have more informative use to patients than to nephs. Should that be the case? Probably not. If I was a researcher, I'd want to know what a person's height, weight, sex, age, and percentage of body fat is, and that would just be for starters. I'd also want to know kidney size, state of echogenicity, injury and inflammation status, and several others. Unfortunately, some nephs are more open minded than others when it comes to keeping up with the latest research. Most older nephs are more set in their ways.....which sets patients on a course for dialysis. Even worse, most nephs have a financial interest in dialysis centers.

Blackknight1989 profile image
Blackknight1989 in reply to Marvin8

You are correct. Completely misunderstood your point. I hope I didn’t come across too harshly or to “know it all assholely.”

Marvin8 profile image
Marvin8 in reply to Blackknight1989

No worries, mate. All's good. Am happy that you enjoy writing as much as you do and that you're providing useful information. We used have Mr. Kidney. Then we had Skeptic. Maybe we'll now have you. :)

horsie63 profile image
horsie63 in reply to Blackknight1989

As for muscle mass...it's best to use the one that takes into account a persons height and weight also. I am only 4'9" and 92 lbs. I do not have the same body composition of someone a foot or more taller and 100 lbs heavier. Using the NKF CKD-EPI creatinine equation (2021) and factoring body composition my eGFR is 12. The most recent renal panel puts me at 17. Luckily my neph looks at many other things to determine how I am doing.

NilsB profile image
NilsB

Creatinine is measured in order to calculate eGFR. Therefore, when people speak of Creatinine, they are often speaking of eGFR.

ncbi.nlm.nih.gov/pmc/articl...

Blackknight1989 profile image
Blackknight1989 in reply to NilsB

See my below posts and you are almost on the correct NIH site. Go to the specific kidney disease section NIDDK

Link: niddk.nih.gov/

Again I am not trying to be “that guy” but if people are either using eGFR and creatinine interchangeably or as the same thing that goes back to my point of confusing newly diagnosed or already diagnosed and new to the forum. That will only confuse those who are already confused and frustrated. Misinformation whether by mistake with good intention or on purpose could be harmful to those folks as well.

One of the reasons I took a 3 month long break was my frustration over that specific fact. Not to pick on you or single you out because I am sure that you know the difference and you were only relaying information about what folks do. But if you suffer from CKD and you don’t research enough to know that creatinine and eGFR are not the same and in fact need to be separated because of the significance of the diagnostic and stage determination use of eGFR and that creatinine is not part of those two guidelines any more and to know why…then either you don’t care about your diagnosis or you are in such an early stage it doesn’t matter.

One of the most important if not the most important decisions one needs to make when diagnosed with CKD especially in stage 3/4 when most of us do get diagnosed is to educate yourself to the point of being a “shade-tree” doctor, or researcher. There will be no one who will advocate for you as passionately and as well as YOU. As has been pointed out by too many folks on this forum that include advocating with doctors who are clueless about CKD so they don’t destroy what remaining kidney function you have.

For example, about 12/15 years after I was first diagnosed I began to suffer from gout. Without telling you the story of 3 years of painful mismanagement by my GP and then having it “cured” in 3 months by a rheumatologist let’s just say I had gout a lot and is all kind of joints.

So one day I go to see my GP who is out unexpectedly and I get his partner. He is a doctor of course so he has to prove he know much more than me and tells me my gout is osteomyelitis. That diagnosis requires (according to him) an ambulance to the hospital because of the potential complications of osteomyelitis. After several wasted hours and thousands of dollars more than a gout diagnosis I was diagnosed by the ER doc and hospitalist with “probable” gout but maybe still osteomyelitis so we need more tests tomorrow. So up to my room and I finally get to ask if maybe someone could help with my painful gout I have been trying to get some prednisone to treat for about 6 hours. These two fine young docs tell me they have already thought of just that and the nurse will be down shortly with meds. They leave, nurse does come in and she has 3 syringes full of medications. I only really need the steroids but if one of those is demoral who am I to question a doctor. Nope no narcotics but instead Keflex and Ketoprofen. I am allergic to Keflex and have been for 30 years which I relayed to the docs but must have never made it to my chart…no problem getting that nixed but the NSAID. I almost had to come off the bed or remove the IV to keep the nurse from injecting that into my vein. She asked me first why did I want to know what meds she was giving me as most patients shouldn’t question their doctors (or nurse) and was appalled I refused the NSAID. Her words were who are you to question our doctors. I said a patient with CKD…stage 4 and I’d prefer they not make me stage 5 with one injection.

Long story short (sorta) the doc came back in and basically ordered me to take the NSAID. After 30 minutes of arguing we are doctors who are so much smarter than you, and me…not on CKD you aren’t in fact you are dangerously dumb…more astonished and taken aback doctor posing…now outraged and yelling another doc came in and pulled them out. After a call to my nephrologist turns out I didn’t need the NSAID shot after all. Oh and I didn’t have osteomyelitis I had gout.

While that is a simple example and most all of us know from initial diagnosis not to take NSAIDS, my larger point is if I didn’t know and didn’t advocate for myself at that specific instance would I be on dialysis now or dead or worse would that shot of Ketoprofen caused my to lose the remaining kidney function I had and forced me to go on dialysis in 2008? Of course I don’t know but I am glad I didn’t cave and have to find out.

In my opinion this is the most serious illness I will have to deal with in my lifetime. I could get cancer, something like pancreatic cancer, and that would be more serious. However, I have been stage 4 for 26 years so I know I won’t deal with anything more serious than CKD for a longer period. If I don’t do something everyday to better understand this disease so I know which new therapies to watch, can understand that in general ACE inhibitors help me a lot but can also damage the kidneys. Know that I need to take my Prevacid but also know it does damage the kidneys. Know that I need to follow a Mediterranean diet almost to the letter close and that while plant based diets are shown through research to not be as effective as the Med diet some folks are having great success on it. Know that mostly supplements of all kinds cause more harm than good yet still be told that I don’t know what I am talking about when the next miracle cure comes along. Finally, know that creatinine should not be used to diagnose and determine levels in CKD and know the reasons why but be told that some folks think that eGFR and creatinine are interchangeable. We lament doctors who don’t report blood levels or don’t test until we are initially diagnosed in stage 4 but we let folks tell those who are stressed about a new diagnosis that creatinine and cystatin-c are the only readings to pay attention to? We need to hold both those doctors and our peers who give incorrect information (again most likely not maliciously just because they don’t know or have a specific experience with a doctor who doesn’t know) out to those who are scared and just starting to learn.

Finally (I PROMISE) if you have Medicare and are able, Medicaid, or a decent paid policy/work policy and in the US if your doctors are not using the most current or worse incorrect ways to monitor your CKD you need to change. In my posts from NIDDK below there are a to. Of reasons why eGFR and UACR are used specifically and additional reasons why creatinine, cystatin-c and other blood/urine tests while important in other ways are not used to follow CKD patients. The American Society of Nephrologist have an awesome site that has a ton of stuff some of my favorite are the KidneyX and the Kidney Health Initiative as they spotlight new treatments/therapies and those that are just being researched. Pretty fascinating stuff. However, if you search their site for just eGFR you get a ton of smart doctor research. One common theme is having doctors diagnose and diagnose early. This is a prevalent theme across NKF, NIDDK and AAKP as well but on the ASN multiple studies reiterate using eGFR (or as they specify MGFR but that’s for another day) and UACR not creatinine or any other reading to diagnose and follow for this reason:

CONCLUSION

The results presented here indicate that a high proportion of early CKD patients in France and Japan are undiagnosed, with a very low frequency of UACR testing. With the advent of promising novel therapies to mitigate disease progression in patients at risk and the potential to improve patient outcomes, a clear imperative exists to highlight the importance of early CKD detection, diagnosis, and intervention.

In other studies they clarify that UCAR is key to helping pinpoint specific kidney function levels that the new therapies that mitigate disease progression and improve outcomes can be prescribed for but only if they are significantly more accurate in measuring specific kidney function level.

Why would you not want your doctor to do the same?

Link: asn-online.org/education/ki...

For those curious about mGFR Link: asn-online.org/education/ki...

Darlenia profile image
Darlenia

Hi Blackknight. Perhaps you're confusing the terminology. There's eGFR (estimated) and GFR. Creatinine is a major component of both. But while the determination of GFR requires both serum and plasma levels of creatinine, the calculation of eGFR only requires a single blood test to measure. (See link below.) When nephrologists make critical determinations (dialysis or transplant) they refer to creatinine levels among a few other things. I vividly remember a couple of nephrologists watching my husband's creatinine levels rise over the days and suddenly issuing the order for dialysis. This happened again right after his transplant, as another set of nephrologists gathered around a computer screen watching creatinine drop. It was very clear that the numbers they were getting were specific and important. One can see the many discussions over creatinine numbers, for example, on the transplant page of this site. Until one gets to late Stage 4 or 5, I suspect most will rely on basic eGFR for kidney health until circumstances dictate otherwise. Then, each component becomes much more relevant and important - creatinine, bun, etc. I'd like to hear from others about the focus of their nephrologists when critical issues arose surrounding kidney function.

pediaa.com/what-is-the-diff...

Blackknight1989 profile image
Blackknight1989

Folks I know the last 3 points. I have been a CKD sufferers since 1996. My point was specifically this. We as forum member should not tell new members/new diagnosed to not worry about this reading instead use the other reading. If you are going to tell those folks anything tell them the facts of what the ANS, NKF, AAKP and all other standard setting groups like above say are the correct two measurements to diagnose and classify stages of CKD otherwise you’ll aid confusion or worse have them dismiss eGFR in favor of creatinine when their doc may be different from yours and use the correct measurements.

Here is proper method on which eGFR calc to use and when.

Here is why serum creatinine is a poor measure of CKD and why it is HIGHLY recommended not to use.

Here is an excerpt from NIKKD:

Reasons for Using the MDRD Study or CKD-EPI Equation to Estimate GFR

*******

Because mild and moderate kidney injury is poorly inferred from serum creatinine alone, NIDDK strongly recommends the use of either the MDRD Study or CKD-EPI equation to estimate GFR from serum creatinine in adults.

*******

NIDDK also encourages clinical laboratories to routinely estimate GFR and report the value when serum creatinine is measured for patients 18 and older, when appropriate and feasible.

The issues with creatinine:

GFR is poorly inferred from serum creatinine alone. GFR is related inversely and nonlinearly to serum creatinine. Age, gender, and race all affect muscle mass and, in turn, serum creatinine. Both the MDRD Study and CKD-EPI equations include variables to account for serum creatinine variation with age, gender, and race.

The normal serum creatinine reference range does not necessarily reflect a normal GFR for a patient. Because the MDRD and CKD-EPI equations employ age, gender, and race, providers may observe that CKD is present despite a serum creatinine concentration that appears to fall within or just above the normal reference range.

The MDRD Study and CKD-EPI equations are the most widely used and thoroughly validated equations. Both equations have been validated extensively in Caucasian and African American populations with impaired kidney function (eGFR < 60 mL/min/1.73 m2) and have shown good performance for patients with all common causes of kidney disease. Additionally, the CKD-EPI equation has demonstrated improved accuracy in populations with eGFR levels >60 mL/min/1.73 m2 compared to the MDRD Study equation; however, the influence of imprecision of creatinine assays on the uncertainty of an eGFR value is greater at higher eGFR values and should be considered when assessing eGFRs > 60 mL/min/1.73 m2.

The MDRD Study and CKD-EPI equations are superior to traditional methods of approximating GFR. Direct comparison of the MDRD and CKD-EPI equations to the Cockcroft-Gault equation and to creatinine clearance measured from 24-hour urine collections has demonstrated their improved accuracy.

Blackknight1989 profile image
Blackknight1989

Specifically to my point on eGFR and GFR. GFR is the actual reading…eGFR is an estimate. I pointed out the fact of eGFR being 80-90% of within 30% GFR to make the point that eGFR is what I would call a very loose estimate.

Again from NIDDK:

GFR Limitations

Estimated glomerular filtration rate (eGFR) calculated using either the MDRD Study equation or the CKD-EPI equation is an estimate of GFR, not the actual GFR. Both equations were derived from large population studies and will generate an estimate of the mean GFR in a population of patients with the same age, gender, race, and serum creatinine. However, the actual GFRs of those individuals will be distributed around that eGFR. An analogous estimate would be the estimated date of confinement for a pregnant woman based on her last menstrual period. This is the best estimate of the delivery date but, in fact, only a small minority of women actually deliver on that date.

And some more on creatinine:

When Not to Use the Creatinine-based Estimating Equations: Although the best available tool for estimating kidney function, eGFR derived from the MDRD Study or CKD-EPI equations may not be suitable for all populations.

Specifically:

All creatinine-based estimates of kidney function are only useful when renal function is stable. Serum creatinine values obtained while kidney function is changing will not provide accurate estimates of kidney function.

Blackknight1989 profile image
Blackknight1989

Even more on creatinine and it’s proper use in the eGFR calculation from NIDDK:

Creatinine Standardization Program

The Creatinine Standardization Program was created by the NIDDK Laboratory Working Group (that at the time was called the NKDEP Laboratory Working Group or NKDEP) in collaboration with the International Federation of Clinical Chemistry and Laboratory Medicine (IFCC) and the European Communities Confederation of Clinical Chemistry (now called the European Federation of Clinical Chemistry and Laboratory Medicine) to reduce interlaboratory variation in creatinine assay calibration and therefore enable more accurate estimates of glomerular filtration rate (eGFR).

The program's focus is to facilitate the sharing of information to assist in vitro diagnostic manufacturers, clinical laboratories, and others in the laboratory community with calibrating their serum creatinine measurement procedures to be traceable to isotope dilution mass spectrometry (IDMS).The program also supports manufacturers' efforts to encourage their customers in the laboratory to coordinate use of standardized creatinine methods with implementation of a revised GFR estimating equation appropriate for use with standardized creatinine methods.

Communication resources and other information for various segments of the laboratory community are available in the Creatinine Standardization Recommendations section of the website. Also available is a protocol for calibrating creatinine measurements using whole blood devices.

The National Institute for Standards and Technology (NIST) released a standard reference material (SRM 967 Creatinine in Frozen Human Serum) for use in establishing calibrations for routine creatinine measurement procedures. SRM 967 was validated to be commutable with native serum samples for many routine creatinine procedures and is useful to establish or verify traceability to an IDMS reference measurement procedure.

The issue and need for a creatinine standardization program:

Establishing calibrations for serum creatinine methods using SRM 967 not only provides a mechanism for ensuring more accurate measurement of serum creatinine, but also enables more accurate estimates of GFR.

For clinical laboratories interested in independently checking the calibration supplied by their creatinine reagent suppliers/manufacturers, periodic measurement of NIST SRM 967 should be considered for inclusion in the lab's internal quality assurance program. To learn more about SRM 967, including how to purchase it, visit the NIST website External link. Commutability study results are available on this website.

Calibration traceability may be established or verified based on results for clinical patient samples assayed by IDMS reference measurement procedures listed on the Joint Committee for Traceability in Laboratory Medicine (JCTLM) database External link. The JCTLM database also lists laboratories that provide reference services.

If you are interested in current Laboratory Working Group activities, please contact Jenna Norton at jenna.norton@nih.gov.

Blackknight1989 profile image
Blackknight1989

Finally the specifics on the Creatinine Standardization Program from NIDDK:

Creatinine Standardization Recommendations

Background

The Creatinine Standardization Program was created by NIDDK's Laboratory Working Group in collaboration with the International Federation of Clinical Chemistry and Laboratory Medicine and the European Communities Confederation of Clinical Chemistry (now called the European Federation of Clinical Chemistry and Laboratory Medicine) to reduce interlaboratory variation in creatinine assay calibration and to enable more accurate estimates of glomerular filtration rate.

SUPER IMPORTANT!!!!

The effort is part of a larger NIDDK initiative to help providers better identify and treat chronic kidney disease in order to prevent or delay kidney failure and improve patient outcomes.

Darlenia profile image
Darlenia

Hi Blackknight. Exactly. GFR is the actual reading…eGFR is an estimate, a loose estimate, in your words. Always best to thoroughly check one's full panel of labs. Creatinine and how it's determined and used for equations and evaluations in different areas is complicated. To muddy the water further, GFR tables with its classifications and placements can also vary across labs and nations - some include race, others weight, etc. They're not internationally standardized. Your post above on the NIDDK initiative illustrates that well. So, in my humble opinion, while I would keep my Kidney Disease Stage I, II, III...etc. in mind, I would keep an eagle eye on all information in lab reports to get the full picture of my health. I simply sense kidney functions are complex, too complex for one test to cover the situation at all times. Others may disagree; that's okay too.

FourT6and2 profile image
FourT6and2 in reply to Darlenia

Sooooo how do you measure GFR then? What's the actual test I should request from my doctor to get an accurate picture of what my renal function is?

Darlenia profile image
Darlenia in reply to FourT6and2

I'd ask if my labs will report GFR on blood plasma creatine levels or 24 hour urine clearance of creatinine. Tell him you're particularly interested in using the best tests for tracking how well your kidneys are performing their job of filtering waste from your blood. Nothing ventured, nothing gained.

FourT6and2 profile image
FourT6and2 in reply to Darlenia

Ok but I already have those tests. I thought the point of this entire thread was that using creatinine to calculate eGFR is somehow inaccurate? I'm going through that right now with my docs. Every test I've taken is normal except for elevated creatinine, causing a low eGFR calculation. Which might be causing a false test result showing I have CKD, when in reality, I probably just exercise a lot, have more than average amount of muscle, and eat too much protein. I'm confused.

Darlenia profile image
Darlenia in reply to FourT6and2

You seem to be aware too. The original post states: "I have noticed several folks saying that creatnine (sic) and BUN are better measures to help determine or define CKD levels or current kidney function. I just wanted to point out that the standard for diagnosis and for measuring CKD levels do not include these measures." However, the eGFR standard does indeed include creatinine among other factors (some debated). Indeed, creatinine numbers become very important in determining need for dialysis, transplant health, etc. So everyone should pay attention to it. As for your situation, I don't have the medical background to diagnose why your creatinine levels display as they do. One's diet (high protein), supplements, medications, exercise, types of tests, other medical conditions and more can influence it. So have a chat with your nephrologist to figure out why those numbers are showing up as they are. In the meantime, you might want to use the search feature on HealthUnlocked to see what others have said - I've seen very athletic people, some into body building, post about their creatinine levels among others. Wishing you much success in finding clarification!

Lucido profile image
Lucido

I am new to CKD. Please tell me specifically what tests my doctor should run to make a definate diagnosis. My eGFR non-afr is currently 48 down from 58 and eGFR if afr is 55 down from 67 based on should be greater than 60 in an 8 month time. The eGFR has been under 60 since 2018 but was never told I had CKD. BUN/Creatinine is 13.3. Doc ran a urine test for possible bladder infection that was 10-20 when range should be 0-5. Took a short course of antibiotics. Tests done late November. What next? I want a referral to a neurologist but want to know what they should do next. I took 40mg of Pantaprazole twice a day for years.

KidneyCoach profile image
KidneyCoachNKF Ambassador

While I completely agree, most NEWLY diagnosed would find all of this as TMI and overwhelmed. Break it down as if talking to a child. When I was diagnosed with CKD & PKD in 1980 I found 99% of nephrologists lazy when it came to prevention of progression of CKD. Even in seeing newer nephrologists in 1998, they told me nothing could be done, just wait it out til dialysis. They only went by GFR or serum creatinine. I had diabetes a year prior to diagnosis per blood work done every 3 months by nephrologist which he ignored and never treated, mentioned or discussed. I find most doctors are LAZY. They do the least possible if it does not give them more $$ in the long run. My hospital stay in September I listed oxycodone as an allergy. I can horrible itching. I end up scratching so hard I bruise myself and skin tearing. Yet, they gave it to me. I was so out of it I could not ask, say anything. With COVID I could not have husband there to watch over me. It wasn't until I came home and reviewed my records. They sent me home on 3 days antibiotics. This caused a major infection that resulted in mastectomy., wound vac, transfusions etc. If hubby had been allowed to be present none of this would have happened. Being your own advocate is critical. Having someone to be there as an advocate when you can't is also very important. Many newbies have no clue what creatinine or GFR, eGFR means, so explaining this and directing them to sites as you have is great.

Blessings

RonZone profile image
RonZone in reply to KidneyCoach

Kidney Coach, see my other response when you get a chance. Very interested in your PKD journey.

RonZone profile image
RonZone

Blacknight and Kidney Coach,Where were you when I needed you to jump on my kidney doc 10-12 years ago when first diagnosed with PKD.

Newby folks will not understand 90% of what you all just said, heck I got about 30% of it. But what I did hear more important than anything is that I should have been given way way way more "user friendly" information 12 years ago at my first visit with my nephrologist when referred by my PCP after an ultrasound to figure out why my gut was hurting. Heck he never even let me see my "labs" for the first 10 years, just said "nothing you can do" after my appt each year and sent me home. I finally asked to see the labs after joining this group.

So yes,

1. docs do not want to take the time to explain PKD/CKD to people.

2. My ex wife was a Nurse Practitioner also with a god complex, so I know from personal experience how "smart" they consider themselves.

3. Learning this stuff ain't easy for folks. And as in the case of the CDC right now, finding standards that stay as standards are hard to come by. And there's way to many "sources" of "expert" information on the internet for us regular folks to make heads or tails of, especially when our docs don't care enough to get as informed as the guys on this site, well informed in ways that they can communicate well to their patients that is (mine knows chemistry, but doesn't have a clue how to communicate it to me). Communication only happens when the recipient of that communication has a proper base of information to understand new info. And most of us simply do not have that, unless we read everything you guys post on here every day, which most of us do not have the time to do trying to work and balance everything else including dialysis.

4. You guys who know this stuff are appreciated way more than you think, but be patient with us less knowledgeable folks,

5. We less knowledgeable folks need to be patient with the more knowledgeable folks on here and be willing to do some research on stuff we don't understand, as much as our intelligence and time will allow, especially those with kids still in the house, etc.

So keep the info coming folks. We'll try our best to digest what you are telling us as we go along this journey.

Kidney Coach, without having to read everything you've written on this site, I may have a few questions that are PKD specific to ask you one day in the near future, considering I'm not that far away from dialysis now.

Blackknight1989 profile image
Blackknight1989

KidneyCoach you are 100% correct as you are RonZone. My apologies to all especially if I come across as a Mr. Know It All. As you all can probably tell I teens to be long winded. So I am really trying to keep this brief. A quick explanation of a couple of key points about me personally.

One, in the last 18 months I went from a business owner of 30 years to completely disabled in a wheelchair. CKD is not the culprit but it is my severe osteoarthritis. From 2003 -2014 12 surgeries ending in bilateral hip replacements, bilateral knee replacements and bilateral ankle fusions. Need surgery for L1-L5 fusions and rods. Can’t turn my neck nor hold my head up for more then about 20 minutes at a time. It is osteoarthritis not RA.

I say that to say this. I have lots of time to research. Probably more than any and most all of you. Plus, I think I had an unfulfilled fantasy of being a doctor…lol. I enjoy the research. I spent 30 plus years in service to and helping people in my career. So I enjoy being helpful to others. I have a long experience with CKD as I have been stage 4 for 26 years. Also, just in the last 10/15 years has the money and priorities for expanding treatment options other than passive therapies such as diet modification during stage 1-4 leading to dialysis and transplant if we live long enough that is the place we all end up. The new research is both exciting and huge in scope compared to the previous scope.

Further, the pain associated with the osteoarthritis allows me on average only about 2/3 hours of sleep nightly. I am sure I need much more sleep but it just isn’t to be. The desire to help people drives the attention to details about proper test results. Because of the new treatments on the horizon the I am excited about sharing. The correct tests and the accuracy of those tests, like when I made reference to MGFR from the ANS site, are key to the determination of which of the new therapies used to treat and potentially halt progression of CKD according to the 90/100 research reference studies on the ANS site.

So I am excited, I don’t get the sleep I need and I get excited about the new therapies which drive the debate over the proper tests and the accuracy of those tests. I know why they are important because I just read the studies. I want you folks know what I know and I have become an expert in the cut and paste sharing technique.

That leads to the disjointed jumbled mess if those thread. For that I apologize and I will monitor myself to keep this to a minimum. Apparently I continue to fail the brevity test so that is one y’all just have to deal with. If too long don’t read….lol!

I appreciate the latitude and the space to open up a little. I hope that helps.

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